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70 episodes with world's worst diabetes mom
In 2006, Stacey Simms' son was diagnosed with Type 1 diabetes, only one month before he turned two. She started blogging about her family's experience with T1D a few weeks later. Stacey now hosts the award-winning podcast, Diabetes Connections, and is the author of the book, “The World’s Worst Diabetes Mom.” In this podcast episode, we discussed: The definition of diabetes Type 1 and Type 2, and what causes it How diabetes misdiagnosis happens Insulin access and the insulin affordability crisis What people without diabetes in their families need to know - 4 signs to watch out for Being "the world's worst diabetes mom" Show Notes - https://kickinitwithdaree.com/episode/worst-diabetes-mom-stacey-simms
This week Ask the D-Moms is back, answering a very different kind of question. How do you know what diabetes news is reliable? Moira McCarthy and Stacey both have backgrounds in professional news media. We’ll talk about medical studies, news sources and, community & social media info. Check out Stacey's book: The World's Worst Diabetes Mom! In Tell Me Something Good what do prescription swim goggles have to do with diabetes? Nothing really, but it ties into a new realty tv contest where we spotted a Dexcom. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription: Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvokek Hypo Pen the first premixed auto injector for very low blood sugar, and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:22 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:27 This week, ask the D moms is back answering a very different kind of question. How do you know what diabetes news is reliable? Moira McCarthy and I both have backgrounds in professional news media. We'll talk about news sources, medical studies. And as Moira touches on here, community info. Moira McCarthy 0:47 When you're delving into that kind of anecdotal sharing, everyone is right, and everyone is wrong. Some things speak to some people and some things speak to others Stacey Simms 0:59 in Tell me something good. What do prescription swim goggles have to do with diabetes? Nothing really. But it's all about a reality TV contestant you're gonna want to follow. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I am so glad to have you along. I am excited about this episode I love every week, of course, this one where more and I get to break down from our personal experience, what we think of what's going on news business, how you can better use information. This is right in my wheelhouse. And it's one of the reasons why way back when I started this podcast, hey, if you're new welcome. We aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed with type one, almost 14 years ago. And it was really almost six years ago that I decided to start the podcast and did a lot of research. And it really took me until almost a year later to get it going. We started in June of 2015. But what brought me to start the show was that I listened to a lot of podcasts. I've listened to podcasts since I don't know 2005 2008 way back when when you had to actually plug your iPod into your computer and download the shows. And if you don't know that's where podcast comes from the actual iPod was the only device you could do it on way back when and I'm sure somebody with Android will correct me and it was all about mp3. But you know what I mean? That's where the word comes from. But I would walk my dog and drive in my car and listen to shows with people who had incredible personal stories about diabetes. There were so many really good personal experience shows people talking about their diagnoses, just talking about day to day some technology stuff, but nothing that was a conversation that was from more of an informational standpoint. You know, it was basically nobody was asking the questions that I wanted to ask personally. And the great thing about podcasting is, if you don't hear what you want to hear, if you notice something is missing in the niche, or the community, you can jump in and start your own show, which is what I did. Of course along the way, I give you a little bit of personal information. Although the show is definitely not all about my family. I have been mentioning lately that we were supposed to go see Benny's endocrinologist and we went in the beginning of October, then he had his lowest A1C ever, which is of course fabulous news. If you are new to the show, we started the control IQ system from Tandem in January. And we have watched him spend more time and range with less work all year long. It's really been amazing to see I give him a ton of credit. Of course, he still has to do a lot of hard work that goes along with it. He is far from perfect. God forbid I say nice things about Benny. But really, he's doing great, but it's still really is a lot of work. And you know, you have to wear all the devices. So I give him a lot of credit. I give all of you live with this an awful lot of credit, you know that. But boy, it's amazing to see that time and range go up, and the actual bolusing and the nagging for me down. It's been phenomenal. He also grew a little bit more, which makes him very excited because he is afraid he is done growing. Of course, he's been taller than me for a while now. We also talked with the endo about insulin. And if you've been following on social media, or if you're in the Facebook group, you've seen me talking a little bit about this switchover, my insurance has us going from Humalog to Novolog. And I'm going to talk about that at a different episode. I did hint about that in the bonus episode I put out last week and I'm not trying to be cagey. But I want to give you the total context. There's a lot going on with this. And I want to make sure I get everything right and get all the ducks in a row before I tell you the whole story, which is a good segue into news and to sharing a good and accurate picture. So I promise more to come on our insulin front as soon as it all wraps up, fingers crossed. All right. So with everything that's going on these days, I thought a show about news and information how to know whether your source is reliable. are worth listening to her, okay to ignore would be very timely. We're really only talking about diabetes news here. But that's almost more difficult because it's one of the few conditions that you can think of where we rely so much on community support and information from each other. Because we get so little time with health care professionals and diabetes is 24. Seven. And while so much of that peer to peer and community support is wonderful and helpful and is supportive, a lot of it is inaccurate or outdated, or it doesn't apply to you, or it is actually harmful. So we're going to talk about it. Of course here to join me on Ask the D moms, as always is Moira McCarthy, a fellow diabetes mom, of course, and a fellow news professional, if you are new, we will also tell you about our backgrounds and why the news media, which everybody hates right now is so important to us. But first of Diabetes Connections is brought to you by One Drop, and it is so nice to find a diabetes product that not only does what you need, but also fits in perfectly with your life. One Drop is that it is the slickest looking and most modern meter My family has ever used. And it's not just about their modern meter setup. You can also send your readings to the mobile app automatically and review your data anytime, instantly share blood glucose reports with your healthcare team. It also works with your Dexcom Fitbit or your Apple Watch. Not to mention, they're awesome test strips subscription plans, pick as many test strips as you need, and they'll deliver them to your door when dropped diabetes care delivered. learn more, go to Diabetes connections.com and click on the One Drop logo. Hey, Moira, it's always great to talk to you. How are you doing? Moira McCarthy 6:39 I'm doing pretty well. It's always good to hear your voice how's things down in the warmer part of America, I am looking out at the beginning of foliage. And all day here in Massachusetts. I always Stacey Simms 6:50 laugh because I am in Charlotte, North Carolina. Growing up in the New York area. I grew up just outside of New York City and spent a lot of time upstate New York. It's so funny here because there is beautiful foliage in places. But the season is so different. The first year we had kids and I wanted to go apple picking. I was all set in October. I was like cuz I spent you know, my childhood, going apple picking in October and the crunchy leaves and the crunchy apples. And they were like no, no, you have to go apple picking in August. Moira McCarthy 7:16 Oh my gosh, that makes sense. Like that. Stacey Simms 7:21 It is but it's gross. wants to sweat while you're picking apples. Yeah, no, no. But I'm glad New England must be beautiful. Unknown Speaker 7:29 And as it's my Moira McCarthy 7:32 favorite season, it's one of my favorite seasons I enjoy. Stacey Simms 7:37 All right, so interesting topic this week. And we're gonna stick on one question pretty much the whole time here on the D mom's. And that's about news information, how we know kind of who to trust in this community? How do you know what information to trust? And before I ask the actual question, I think it's important to back up and kind of talk about our experience, because I think it's one of the reasons why we're friends. Moira, and I have an awful lot in common, including working in the news business more, take me through your your experience. But I mean, all kidding aside, you've been a journalist for many years. Moira McCarthy 8:10 So it's funny you asked because I was visiting the Newseum, which was a wonderful Museum in Washington, DC that just closed down about the news industry. They have a whole of technology, like all the technology from the beginning of time, and I said somebody's daughter, oh my gosh, I'm so old. And I've been a journalist for so long that I've used three quarters of the hall of technology. But I am, you know, I just want to start with that. I think it's if it's okay, I think it's really good to kind of stick up for my profession right now. Because it's been a rough couple of years, I guess. Now I know what it's like to be a lawyer. You know, I've run you always say the lawyers were all liars. But um, journalism for people like me, is a vocation. It's what I always wanted to do. And when I went to college, I didn't just learn how to write, we learn how to it's called the canons of journalism. And we actually learned how to be responsible with our information and with our sources and everything else. And it's something that I carry with pride. And I just want people to know that when you're dealing with true journalists, people who work in the field and we're trained in it, you really are dealing with people who are trying their best to give you you know, the truth. And in fact, so that's, that's just my little stick up for journalism thing, but I am, I was the editor of a group of 23 newspapers when I was about 21 years old. I went on to be a full time crime reporter and bureau chief for a daily newspaper for about 11 years. And then I went to work for the New York Times doing adventure travel, which I did for a good long time. And now I am the travel editor of a newspaper in Boston called the Boston Herald and I also do their ski section and it can be contributing editor and writer at ski magazine. But my new exciting thing is for about a year and a half now, I've been writing as a medical journalist for helpline media. So that's where my background is with a lot of other things in between. Yeah, tell us yours Stacey Simms 10:14 Sure. And I will also stand up for my profession, by adding by adding that journalism is the only profession singled out in our country's constitution. It is an incredibly important part of our government, and country function. And my personal feeling, and you know, you can disagree with me on this, as you listen to more as well, is that most people who are angry at journalism are angry at talking heads and opinion pieces. And the line has just blurred because of 24, seven cable, and lots of other things and talk radio. It's just become a real mess, in terms of the definition of journalism is, is my feeling on that. But I yeah, and I'm with you. I mean, when I was in college, we took communications law, we took lots and lots of classes on this. And I had some incredible news directors during my career. So I was a radio reporter. In college, I say I was the world's worst radio reporter. And I really was terrible, because they hired me, but didn't tell me how to do anything. So I drove around Central New York looking for stories. I mean, I was terrible. But I made it and I learned a lot. Then I spent 10 years in TV news and local TV news in upstate New York, and in Charlotte, North Carolina, where I am now. And then I spent 10 years doing news. And this was a really interesting job. I did a morning news show for a conservative talk radio station. So there was a firewall, you know, between the the news department and the talk part of the radio station. But as I said earlier, you know, I don't think a lot of people make those distinctions as they listen. And so it was a very interesting place to be. Let's put it that way. And then of course, for the last five years, I've done the podcast, which I've really tried to instill with those, you know, journalism, ethics and disclosures and all that stuff. So that's our background, which is why I thought this is a perfect topic for ask the D moms. I don't know where this discussion is going to go. I'm excited to hear what you have to say Moira, I'm so excited to see or, you know, find out what listeners think. So let's jump in. This was a question. I'm not going to read this person's name because I pulled it out of a Facebook group. But I think it's a fabulous question. This person says, My 12 year old was diagnosed last week, we are absolutely new to the world of T1D and my brain is seriously about to explode. I have no idea who to trust for information. Who do you trust? Any tips on how to navigate the flood of information out there? I've only been at this a few days. It seems like everything's a contradiction. Go low carb, don't go low carb. read this book. No, don't read this article. Read this instead. And she goes on and on about all of the contradictions in the community and I'll get to more of them. You know, CGM changed our lives CGM is too much hassle. Technology is great technology is terrible, he can do anything he is about to die. I mean, she really lays it out. All the things that you and I have kind of talked about for years. So I want to tackle this in a couple of ways. I want to tackle this in terms of reporting in the diabetes community and studies. And I want to tackle what people just say, right community advice. So let's start with the information. And I I'm glad you brought up Healthline, because you may know more about when this started. But Healthline has this really fantastic thing that where they put on the article, not just the author of the article, the journalists behind it, but they see fact Unknown Speaker 13:38 checked by? Stacey Simms 13:40 Yeah, so somebody goes through all your stories, Moira McCarthy 13:43 right, and and what people probably don't know is that that has been the case, every single place, I've worked for the 40 years that I've been a journalist and help one, I'm guessing, I probably should ask my boss for this, I'm guessing made the decision to highlight the fact checkers, for the readers peace of mind so that you can see there's a fact checker there. And then second, because they're becoming more and more important in this weird time and how journalism is evolving into, as you said, a little bit of a confusing thing. So I think that's why they put it right out there. But I have always worked for quality publications, and every single thing I've ever written has always been edited, in fact checked. And I think that that's an important distinction for people to understand. And I can talk a little bit about how you can figure that out. Because one of the things you know, as a journalist and you'll agree with me, Stacey is everything ever written needs at least a second pair of eyes on it before it's published at least a second pair of eyes No matter how good you are as a journalist, you get fact checked and looked over by someone before it runs if you're Woodward and Bernstein you do and if you're me, you do now I think the blur comes a little bit in that blogs and ziens and other online things that may just be done by one person look the same on the internet, as the New York Times does or as the Hoboken journal does, whatever it is that you read, do you know what I'm saying? Yeah, yeah, it's a great point. It's a grand. So I'm not saying that people who write those kind of things aren't smart and and don't know, but that's actually not a full journalism, experience, for lack of a better word. And what I usually say to people is, when you're reading things, first of all, figure out what the sources you know, if if the name of the quote unquote publication, when you look at it online is like, I am smarter than you.com. It's probably not a really great source. But if you start to read something, and you feel like you'd like their boys, then that's a reason to read it. But understand that you're not dealing with full on journalism set up in the classic way back. Does that make sense? Stacey Simms 16:19 Right back to my discussion with Moira. But first Diabetes Connections is brought to you by Gvoke Hypo Pen. almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. And that's where Gvoke Hypo Pen comes in.Gvoke is the first auto injector to treat very low blood sugar Gvoke Hypo Pen is pre mixed and ready to go with no visible needle. That means it's easy to use how easy you pull off the red cap and push the yellow end onto bare skin and hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma visit Gvoke glucagon comm slash risk. Now back to Moira and me interesting timing. Following this endorsement, we move to talking about disclosures and commercials. But she left off asking me for last point about looking for clues in something as simple as a blog name made sense. I think it does. I think it's great advice. It's also helpful when you're reading a blog or you're reading a personal new non-medical testimonial, something like that, that you also ask yourself the question. Are there disclosures on this website? In other words, if this is a blogger or a podcaster, you who are they sponsored by? And are they disclosing those sponsors? In other words, who is paying them? Just because this is a good example of this show, we take sponsorship and I talk about this all the time, whenever we have somebody on the show who is one of the sponsors, I disclose it again, and I talk about how Look, they're not paying for the content, they don't tell me what to ask, they're paying for the commercial, that sort of thing. But you know, as you listen to that that is happening. And so if you're on a blog, or you're on a podcast, and they're not disclosing who the sponsors are, that's a red flag, it's also really important in our community to kind of know what the person is using device wise. Because while that doesn't mean doesn't make them biased, it doesn't make them their information incorrect or wrong. It does influence how we live with type one, we all have our little fandoms. And I think it's really important to acknowledge that. So if you're hearing or reading some information, it's okay to question Moira McCarthy 18:35 it is but to go backwards as a journalist, when I write for someone like helpline, or if I was, you know, when I write for a newspaper, whatever, that should matter, not one bit. In other words in in these things like podcasts and blogs and, and other things that are sort of, you know, it's a new world in a different way than then that does. But my job as a journalist, when I write for classic journalistic publications, is to not bring what my opinions are to the final product. Stacey Simms 19:09 Absolutely. And that's, you know, we've already talked about blurring the lines here, when I'm speaking about disclosures, all that, look, if you're a journalist writing for health line writing for a magazine writing for newspaper, you shouldn't disclose your sponsors, because you shouldn't have any, Moira McCarthy I don't have any Stacey Simms right. You know, to be clear, we were kind of talking about two different types of writing there. And that does make it confusing. Let's talk about reading studies. Because I think most people after they're in the diabetes community for a month, know to look past the headlines. Moira McCarthy 19:42 Yeah. And even some of the studies I remember years ago, I don't remember what study there was that I don't even know if there was email, maybe email was new back then, and I emailed it to the Lauren's endocrinologist, and he called me up and he said, just so you know. person can create a study to prove and be successful that women who drive in red convertibles, when they're teenagers, at least once are more apt to have a child with diabetes. In other words, you can take anything and link it to something else and sort of prove it. So so what I always say to people and, and we maybe will talk to you about how you react when friends send you all those headlines that are not really true, because you sound like such an over when actually you are. So first of all, forget the headlines, read, read what it is. And then if you're reading a story about a study, you can almost always get your hands quite easily in the internet on the actual study, and read the actual study so that that's what I usually suggest. And anything that says, you know, cure diabetes in mice, my old story is when Lauren was very little, the movie, Stuart Little came out, and they gave all the money to JDRF the first night. So we went to a movie theater, opening to see it. And on the way home, my little daughter said, Oh, Mommy, I understand why Stuart Little wants to help diabetes, because he can be cured. He's a mouse. Unknown Speaker 21:13 So So what I'm saying is, Moira McCarthy 21:17 is read carefully and dig into it. And and my advice when friends send you articles about studies is just thank them. Like, you know, just say thank you so much. It's so interesting. And if they push further and say, why aren't you going to get back here? Then you can explain more. But I guess so I guess my advice on reading studies is actually read the studies, or at least the summary of the study, Stacey Simms 21:40 get exactly the first thing I do. It's funny about Stewart little, the first thing I do, and I just saw study yesterday, but some like electromagnetic field, these researchers were so funny that the headline was like, we built a remote control to cure diabetes. And they were I'm laughing that they were funny. They were very young, which is what made me smile. So I think there was a college study or something. But I clicked on it to read more. And the first thing I did was scroll down. And of course it was in mice. And you know, nothing was proven. It was all correlation, not causation. And it was very interesting. But it wasn't, it didn't prove anything. And they may move into human trials someday. So what I also talk about a lot is, and I've learned this over the years, which I find kind of disappointing, but also it's good to live in the real world, is to realize that, especially with a lot of companies, the marketing department can get ahead of itself can get ahead of the rest of the company. Yes. So sometimes they'll say something and make a big splash. And you know, a great example of this, and I'm so sad is Animas Corporation, that I loved Animas Corporation, part Johnson and Johnson, they made this wonderful insulin pump that my son used for 10 years. For years, they were talking about their hybrid closed loop, they seem to be ahead of everybody. And they were getting these incredible studies out of Europe. And it really looked terrific. And then of course, Johnson and Johnson closed up the whole company. And it never as far as I know, it never even got to trials in this country. So that was a lesson for me, unfortunately, in I mean, get excited, get optimistic, you know, let go, obviously great things are happening. But be careful about letting marketing get ahead of what's actually happening. And so when we're reading articles, we're reading studies, like you said, actually read the study is probably a really good way to go. And a good thing to point out too is I don't know about your experience. I have never written my own headline for anything. You never get to write your own headline, Moira McCarthy 23:32 right? Oh, no. And and Healthline actually has a team that writes the headlines. Yeah. Like, that's their job. And I did you know, when I was an editor of a newspaper, I was, you know, oversaw the headline writers and everything, but I know, I don't write my own headline. Um, you know, I was just thinking to that this is kind of a good conversation to have right now. Because one of the reasons, you know, beyond being a medical journalist and covering it, but one of the reasons that I've been able to follow the vaccination news, with, with confidence, and what I understand and what I know I shouldn't care about is my experience all these years and reading studies and reacting to things that I hear about diabetes. So it's a good time for people to know how to dig deeper when they see a headline. Stacey Simms 24:16 And you mean the COVID vaccine. Moira McCarthy I do. Yeah. Stacey Simms This is a time when we need good health news. Moira McCarthy 24:24 No, no, maybe that'll be one of the silver linings, people should know how to at least basically understand medical research of all different kinds. So understanding how to read about it. That may be a good thing that comes out of this. That's a really good point. Then, of course, there's the whole world of information that newly diagnosed families like this person whose question you read are thrown into now. And I want to tell you that my first advice when people Reach out to me, you know, connect me to a friend whose child was diagnosed her car is do not go on the internet for a while other than basics. And that's because it must come at you like this woman described like you're almost being assaulted with all these different things that completely conflict with each other. And I think that in the beginning, one of the reasons that I was able to build somewhat of a confident foundation for my family after my daughter was diagnosed 23 years ago, is that there was no internet. And so I read books, you know, Merck medical journal, and the Pink Panther book and things like that. But most of my information came from the most reliable source you can have. And that's a qualified medical team. And so before we talk a little more about, you know, how you figure out what's right, and what's wrong with people, I just want to say that it has to be incredibly difficult. And I actually strongly believe that that environment is one of the reasons that studies are now showing that parents are more concerned and more afraid than they were 20 years ago, I think it's the the overflow of information coming from every direction. Stacey Simms 26:17 I agree. Oh, absolutely. It's, it's like, it's always like drinking from a firehose, when you learn about type one. But it has become, you know, like trying to drink the ocean. Because it's not just information from the medical community, it's, I'm going to put this in quotes. It's, quote, information, and judgmental advice from the community. What I tell people is, same thing as you try to stay off the internet, try to join a local group. Interestingly, this question was posted in one of the largest diabetes Facebook groups that I am in, and it is full of people at different stages and ages. And it's type one, kids and type Well, it's type one parents, you know, and adults with type one, it's just it's an enormous group. But it's funny when you mentioned staying off the internet for a little while, you know, I have an I promise, this is not a book promo. But with the world's worst diabetes Mom, I have a program called the book to clinic program, where I'm able to give pediatric endocrinologist to read the book and are okay with the worst, you know, the world's worst moniker, they can give it to families for free. And we've decided that it's probably not a great idea to give this to newly diagnosed families and to wait until at least three if not six months, in, not because the information is too complicated to comprehend. But because they're getting enough, they need to focus on insulin dosing, and checking blood sugar and getting routines in place. And then they can branch out more information and these other things that just come at them. I mean, we have a program here in Charlotte, where they put technology on these kids in the hospital. And I know everybody loves that. But then you come into my local Facebook group, and everybody doesn't love it, they are overwhelmed. And so Moira McCarthy 28:02 another time, exactly. I was going to interrupt you when you're talking about your book and say, I want to suggest that you not give them to the give them out till three or six months after diagnosis, and you already are. So here's what I think. I think that when you're delving into that kind of anecdotal, sharing, everyone is right, and everyone is wrong. Because some things speak to some people and some things speak to others. And so my advice is, if you read something online, that makes you feel uncomfortable, or makes you feel judged, or makes you feel like you're doing it wrong, share exactly what you read with your medical team. Like say, I just want to run this by you when and and let's say it says I don't know I'm gonna make something up so that no one's offended by it. Let's say it says, You absolutely have to keep a pink bow on top of a helmet every day or your blood sugar is never going to be stable. So then you call your endo your CDE. Or you send them a note you say, Hey, I just sometime the spine because we don't have a pink bow on a helmet on our son. So can you let me know if this is true? And then they will say, either? Yes. I can't believe we haven't shared this with you. You need to do it or Now's not the time or pay no attention to this. Find the medical team you trust and let that be your true north Stacey Simms 29:31 Yeah, right. Oh, without a doubt and I love love love that every everyone is right and everyone is wrong. Yeah, that I may have to put that on a bumper sticker to be able to offer stickers. Yes, it Moira McCarthy 29:43 applies to much more than diabetes right now, doesn't it? But but so so what the way that I was already far into diabetes by the time Facebook and the internet existed, but I have a group of friends that I've made through that. And what I found was, you just sort of noticed these people That kind of fit in harmony with you, you know, and then you're like, Oh, I think I'll message them and see if we should be Facebook's Facebook friends. And then you figure out, you know, most of my, I have a diverse group of friends, but most of my very close diabetes mom, friends and adults with diabetes, subscribe to the same philosophy that I subscribed. And so I'm nada. Had my daughter on low carb through her childhood person. I don't have any problem with those people, they can do their own thing, but it wouldn't be someone who was really into that I'd probably be like, yeah, that might not be a good fit, just because, you know, yeah. And of course, you might like someone and they're funny and nice. You just disagree with their diabetes care, that's fine, too. But I guess what I'm saying is, don't take it all. So seriously, it is just boats shoot the breeze. It's anecdotal. You don't know there's this old New Yorker cartoon I love we should try to find it or in we should put it on my page. It's two dogs, and one of the dogs is on Facebook. And he's saying that the other dog The great thing about Facebook is no one knows your dog. And and what that means is you don't you don't know what's real, and what the whole story is behind that. For me, it was always everyone was always doing perfectly with their teenager except me. And he come to find out when you dig down that that's not really true. Most people struggle a little bit most years or don't do it some other time. And so, if I had, if I had Facebook back then which they didn't, and my daughter was struggling and I had gone on and all these people were just saying, you know, take her to take her to a dialysis center and show it to her, she'll, she'll change I might have bought into some of that, when it might not be what's best for my child. So again, my best advice with for anecdotal advice is they're all right, they're all wrong. Talk to your endocrinology team about what's right and wrong for your child or for your family. Stacey Simms 32:06 I absolutely agree with that. And I always say, you know, we all parent in our own way. So we're going to parent with diabetes in our own way. There's only a couple rules, you know, put insulin in and know where your blood sugar is. Everything else is fair game. So if you you know, if you want to do a sleep over, and your friend on Facebook says that's the worst thing you could possibly do. It's okay to disagree. I think what happens sometimes, though, is people will post with such conviction, and such surety in their method that it comes across, like an information source. And I this might get uncomfortable, you're much nicer than I am with the pink bow on the helmet. I don't mind getting a little specific. I'll talk I'll put some examples out, you know, when I when I do Diabetes Connections here on the podcast, if you're a longtime listener, you know, we have talked to people who manage diabetes in so many different ways, super low carb, you know, keto super athletes, super laid back. You know, we've had a lot of people on the show, and I try, you know, when I'm editorializing or sharing my experience, I really try to give a platform I mean, I'm not gonna put anybody out who's not safe. But or you know, who's i think is not reputable. But we do give a platform here for many different types of management. And I'll give the example because I know they can take it the Mastering Diabetes guys, these are the guys, Moira I don’t know if you’re familiar with them, they have a book, they’re very popular. You see them they're holding like giant baskets of fruit. I'm not going to explain it well. But you can go back and listen to the episode or read their book, their whole thing is, if you eat tons of calories that come from fruit, tons of carbs that come from fruit, your insulin sensitivity will go down and you'll be able to eat enormous amount of food as long as you eat this type of food. And you can hear in the interview, I am having none of this, I can't imagine a more miserable way of living. It would never work for me. There are people who love it, who are happy with it and are thriving on it. So that's a bit of information in a way of living that I would suggest you as you listen, dismiss or embrace like Moira said, everybody's right. Everybody's wrong. That may work for some people. It doesn't mean it is factually the thing to do. And I think that's what makes me crazy about this well meaning community, you may be great. At 85 you may be great setting your Dexcom alarm for your kid at 120 I can't think of a better way to ruin my relationship with my son. It would never work for me. I have friends who text their kids six times a day and they say they have a great relationship with their kid. Mazel Tov wonderful, never would work for us in a million years. That's the kind of stuff I'm talking about is contradiction. Well, because if it works for them, why wouldn't it work for us? Because it doesn't. Moira McCarthy 34:54 So So advice that pops into my head is if someone says something to you on line like, you're harming your child, if you're not doing it this way, or I love my child enough to make this effort, maybe you don't, or ever, your child's going to have complications, I would shut that person down immediately. Because that's not a rational way to look at the diabetes sphere in general, because we are all so unique. And one of the things we know about diabetes is it's very individualized. It's one of the big challenges for it. So if someone if someone is writing something, or sharing something online with you, and they tell you that if you don't do it their way, you know, there's trouble, I would dismiss them immediately as as not a good source. Other than like, you know, I don't know, don't club baby seals, and don't, don't tie your children to the bumper and drive them full speed. I'm talking about semi reasonable things. Of course, it makes me sad when I see certain groups who believe certain things, being aggressive about it, because I'm sure that it comes from the right place, and they feel like they found an answer. But they, they've only found an answer in this moment for themselves. They haven't found an answer for everyone in the world. They haven't even found the answer themselves forever. They don't know what's coming down the road. I'll share a funny story too, when you say about the other parent saying their kids are fine with it. When my daughter was a teenager, I said to her CDE one day, can you please tell me why every other 14 year old on earth with diabetes, A1C is like 6.9. And my daughter's isn't, and I'm struggling and no one else's. And the CDE said, because the rest of them are all lying. I know because I treat them. I can't tell you details, but trust me that they're not sharing. And you know what? That's not all wrong. It's not It's not that bad to put a rosy picture out for the world. But don't push it into advice and and be aware of that, too. Like, if someone tells you everything's perfect all the time, I would just be like, yeah, good for you, and then maybe cross them off your list. You know, because I don't know of a person who raised her child with diabetes, or who's had diabetes who does not have bumps in the road? Stacey Simms 37:22 I can’t believe you would say that to my face. Moira McCarthy 37:27 You the world's best diabetes mom, everybody else has problems with that just because you love anymore. If my daughter, she wouldn't have like spikes, post meals or have done phenomenon, right? You're Stacey Simms 37:41 just gonna try harder. I would also add, and I do this, and I really have to stop because I'm on my phone way too much. You know, this this year, especially has just been difficult for people who enjoy information. But But I post all the time in diabetes groups, when I see something and in my group as well. Interesting, what's the source? You know? Or what? Where did you read that? Where did you find that out? And if they don't have one, then you know what, you can ignore it. You don't have to internalize it, you don't have to act on it. If someone posts something that just seems weird or off base or brand new, unless there's a source of study a medical professional behind it. Um, you know, I wouldn't recommend you fight. I mean, let's not get crazy. It's okay to walk away. It's not a real conversation. You know, you can you can say No, thank you. But I always ask for sources. And I've learned a lot from people posting the sources. I didn't realize that or people posting the source and saying, No, but you know, that that blogger was discredited A long time ago. So just, it's okay to ask for that. I think it's also a really good way to get more information. Moira McCarthy 38:53 Yeah. It's also okay, that, lets say not just anecdotal, chatting back and forth. But if you read a blog, or you listen to a podcast that's giving medical advice, I think that it's perfectly fine to reach out to them and ask them what their medical background is. And if they don't have a medical background, then you really shouldn't take medical advice from I know, you know, hey, I want to just wrap back to the beginning because I just had an email come in, sorry, but while we're chatting, I'm I'm on a deadline. And it's from my boss said helpline, and it says, Hey, more your important formative story on Blank is on the site. Now, on advice of your fact checker, I took out the paragraph on the notion that blank blank while you did show us a study or two there are conflicting research on those points. It looks great without it so don't worry about it. So I think that shows that when you when that people should trust real news sources, that's what happens. You know, I researched I found studies but they researched a little further and found a Couple conflicting ones. Since we want to go with the story, we'll take out the studies that I did that I've got a good illustration, right? Stacey Simms 40:07 I do. That's great. Thank you for sharing that. That's fantastic. Just came in. Oh, hot off the presses. Unknown Speaker 40:15 Um, so Stacey, where are you traveling to to speak, he's coming Unknown Speaker 40:21 out of the family room, I'm in the living room. Now, my Stacey Simms 40:25 family will say, Oh, my gosh, I never took all the stuff off my calendar. So I was supposed to be all these places, you know, this month in the next couple of weeks that I'm like, gosh, I gotta take this off my calendar because it's Unknown Speaker 40:38 Oh, Unknown Speaker 40:40 so I'm like, stop it. I'm not going there. But I did Stacey Simms 40:43 go, Benny. And I went to the endocrinologist this morning. So actually put on real pants. Benny 40:50 And they said and makeup. Stacey Simms 40:52 Yeah, it was very funny. It was very funny makeup. I know. I know. I didn't mean but who puts lipstick on anywhere where he's wearing masks? No, it was great. It was great. And I did, I did get to ask our endo. I always have a list of questions even after all this time. And it's so great to have him as a resource. You know, to answer the questions. I mean, I know we're harping on it this whole time. But really, as you listen, and I think, you know, podcast listeners, you're We know you're smart. You're looking for information. share this with your friends, post this in Facebook groups where people are concerned about the information they're getting teach people, let's help each other be smarter. And fact check stuff about diabetes, because then there's so many we already we deal with it for people outside the community, we want to talk about okra and cinnamon. Right? We don't need to deal with nonsense within the community. We just want to help each other. Moira McCarthy 41:41 Right. And and like I said in the beginning, I think this is a good time for us to talk about this because we all need going forward to know how to understand what is news, what is opinion, if you read a headline, how to dig down in it that, like you said so eloquently at the beginning. I mean, journalism is a pillar of American democracy. And I know it sounds all Whoa. But it really is true and, and weak. We journalists care about what we do. And we want people to be able to trust what they read. But unfortunately, the way the world is now that means the reader has to do a little more work. Stacey Simms 42:21 Moira, thank you so much. As always enjoy your trip to the living room. Be careful. You know, Moira McCarthy 42:25 I will I'll send you a postcard Stacey Simms 42:27 navigate the traffic. And we'll talk again soon. Unknown Speaker 42:31 All right, talk to you soon. Announcer 42:38 You're listening to Diabetes Connections with Stacey Simms. Stacey Simms 42:44 How would you have answered that question from that Facebook group? What are your sources? What are your go to sources of information? I'm going to put that question in the Facebook group this week, because maybe we'll learn some new great ones. Maybe we'll learn about some pitfalls. I'm curious where you get your reliable information. And if there are people in the community as well, that we should be looking at that we haven't found so far. And if you have a question for ask the D mom's just a regular diabetes question, feel free to shoot me an email Stacey at Diabetes connections.com Moira, and I'd love to catch up with each other these quote unquote interviews usually go for about half an hour longer than what you hear because we spend the time catching up as well. It's amazing, isn't it? How many of us makes such good friends because of stupid diabetes? It's the only good thing that comes out of this condition. Hey, tell me something good is coming up in just a moment. We're going to talk about the amazing race. One of my favorite shows the Diabetes Connections is brought to you by Dexcom. And when Benny was very little and in the bathtub or at the pool, I always noticed his fingertips. I mean, you know what I mean? Right? They were poked so much. They were just full of little pinprick holes that you could really see when they got wet. He's 15. I don't see his hands much anymore. But at the end, oh, earlier this month, they always check his fingertips and it's amazing. We've been using Dexcom for almost seven years, and Benny's fingers look completely normal that I cannot believe it is such a visualization. I wish I'd taken a picture seven years ago. But you know the latest generation, the Dexcom G6 eliminates finger sticks for calibration and diabetes treatment decisions. Just thinking about doing 10 finger sticks a day in the past makes me so glad that Dexcom has helped us come so far. It's an incredible tool. If your glucose alerts and readings from the G6 do not match symptoms or expectations. Use a glucose meter to make diabetes treatment decisions. Learn more go to Diabetes connections.com and click on the Dexcom logo. In Tell me something good this week. If you are not already a fan of The Amazing Race, I think you're going to be quite soon. Now a couple of years ago I think it was 10 years ago a couple like it was yesterday. Nat Strand Dr. Nat strand won The Amazing Race. We've had her on the show before I've talked about this because the media Race is one of my favorite shows. I started watching it when I was pregnant with my daughter, Lea, who is going to be 19. A couple of weeks. I've been watching the show for a long time. I actually haven't seen it in a couple of years. But I just last week said, I gotta start watching again. Maybe I'll start from the beginning. I don't know if I want to do that, or where am I going to jump in? But I got my answer, because this season of The Amazing Race features somebody with diabetes. I was watching the promo. And you can see this little clip of Leo Brown, he's got a Dexcom on his stomach. He is part of the team with his girlfriend, Alana Folsom. Everybody in The Amazing Race gets little nicknames because there's teams have to sort of keep them straight. Because you don't know anybody's names. They always boil them down to the essence. So you know, baseball bros, brother and sister longtime dating, which is what Alana and Leo are. So here's a little clip of them talking about getting ready for the race. Leo 46:02 We've investigated past participants on Instagram. Alana 46:05 Leo has a manual transmission car which came in huge I think the main thing we've been doing is CrossFit. Leo Oh, we also did a ropes course basically for the last six months, it's been our primary activity trying to gain new skills. Alana Oh, we also got to buy prescription swim goggles or team Leo prescriptions from goggles. Realty. Stacey Simms 46:26 I have reached out to Leo, I am really hoping that he will come on the show and talk about the experience. Because not only do I want to know about being a person with diabetes on an event like this, which Nat has shared before how she did it, but that was more than 10 years ago, and the technology has changed. So be fun to find out what what helped Leo and maybe what did not. I was also laughing because I saw the preview of the show. And DeAngelo Williams is on this season. Now I know maybe that doesn't mean anything to you, but I'm in the Charlotte North Carolina area. He's a former Carolina Panthers. But he's one of these community guys. Like even if you don't know football, you know, D'Angelo, it's gonna be a really fun season to watch. I haven't seen the first episode yet it aired out last week, as you are listening to this show. I don't know maybe they got voted off. Maybe D'Angelo got voted off as well. But I really hope I can get Leo on the show to talk about his experiences on The Amazing Race. We are coming up on diabetes Awareness Month. And this is a year like no other Can I sound like every commercial you've ever seen. But I think this diabetes Awareness Month is going to be very different as well. We've got to get through the election before anybody's gonna pay attention to anything else. And I always say diabetes Awareness Month is for people outside of the community, not necessarily in I mean, you're kind of aware of diabetes already. So I'm going to be doing my usual news push to see if I can get some news out there to people who may need it and don't really understand about diabetes. But I'm also going to be doing a little something for us because boy, we need a little something. I'm going to be running a contest through the month of November. I've got some fun prizes. I've got some great companies, we just want to make you smile a little bit. So that will be going on in the Facebook group Diabetes Connections, the group and on my Instagram account over at Instagram. I'm just Stacey Simms, so follow me there or jump into the group. If you're not already there. We're going to have a good time. We're going to give away some stuff. And we're going to keep it kind of low key because I don't know that I have the wherewithal to keep it any other key right now. Thank you, as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself. Benny 48:38 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged
There's a new way to connect people with diabetes who take insulin with assistance programs. It's a new website from Beyond Type 1 and, of course, it's not without controversy. GetInsulin.org launched earlier this month, so we asked Thom Scher, the CEO of Beyond Type 1 to come on the podcast. Thom explains what the website is all about, why they started it and how it works. He also answers our questions about why Beyond Type 1 accepts money from insulin makers, what that means for this program and why they teamed up with groups like the NAACP to get the word out. Check out Stacey's new book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke Hypo Pen, the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:21 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:27 Welcome to a bonus episode of Diabetes Connections, I want to take some time and put this episode out quickly to talk about the new program from Beyond Type 1, get insulin.org if you are new to the show, I'm really glad you found us usually put the episodes out on a weekly basis. But sometimes we throw bonus episodes in here and there. My son was diagnosed with Type One Diabetes right before he turned to almost 14 years ago. My husband lives with type two diabetes, I don't have diabetes, but I have a background in broadcasting and local radio and television news. And that is how you get the podcast. And that's why this show has a little bit more of a newsy feel and newsy type feel than some of the other really wonderful diabetes podcasts that are out there. Now earlier this month Beyond Type 1 launched a new program it is hosted at the website get insulin.org. They say this connects people with diabetes who take insulin to assistance programs and low cost solutions that match their unique situation. I was interested to learn more. And so I asked the CEO of Beyond Type 1 Thom Scher to come on. Now get insulin.org is kind of a clearing house. I will link up to it. Of course in the show notes. The information has been out there for a while these are coupons and assistance programs from the major insulin manufacturers, the only insulin manufacturers geared for people in the United States. As you well know, it's a complex situation, there really is no easy way to find out exactly what you qualify for, you know where to start. And that's what this aims to do a lot of strong feelings online. And in real life when this program was announced, many people upset that Beyond Type 1 does take money from the insulin makers, and that they have taken money and are putting the logos of the insulin makers on this website as well. Of course, I talked to Thom all about that. If you are looking for this information, and you want the coupons you'd like to go through and see I can tell you before this interview begins, it really is a comprehensive website to help you find what you are eligible for. So go ahead if you're looking go to get insulin org and check it out yourself. I also need to mention the sound is just a little bit off on this interview on Thom's and it sounds a little bit metallic. And long story short, that is my fault. My technical error, but it shouldn't keep you from understanding anything. It just might be a little bit distracting at first, and I apologize for that. Here is my interview with the CEO of Beyond Type 1. Thom Scher. Thom, thank you so much for joining me. I appreciate you making time to talk about this. Thom Scher 2:54 I am thrilled to be on Stacey, anytime I get to be on your podcast. It's a good day. Oh, thank you. Stacey Simms 3:00 When we last talked, and I believe that was around the time of the partnership with jdrf. When that was announced, you're already talking then about trying to do something about insulin access. So tell me a little bit about what get insulin org is all about? Thom Scher 3:16 Yeah, get insulin.org was probably born right around that time. Actually, it was it was over a year ago that we started talking about it. And really what we set out to do was build a one stop tool that could get people to the right resources for them available today. And that's not only urgent resources, in terms of emergency need less than seven day kind of need. But it really allowed people to get cusThom action plans that were based on their individual circumstances. So things like income, prescription location, insurance type. And rather than get them a list of what is the frankly messy, messy web of a lot of different options, they get the options that are actually specific to their circumstances. And we set out to build that and have it be a relatively easy to use and friendly tool for people that are in that situation, which we know is frankly far too many people. Stacey Simms 4:11 So how does it work? I mean, I'm it's easy to see you can get on it and click around but I'm curious to hear your words. How do you explain it? What will people find? Thom Scher 4:18 At its core, what we ask of you is a very small subset of information out of the gate, I believe it asks you for zip code, it asks you for what specific insulin you're on both brand and depending maybe the product itself and or vial, etc. And then asks you what insurance type you're on. And at that point, the system starts to essentially tree out. So if you're on commercial insurance, and for example, on certain products from certain manufacturers, we're good. We'd have all the information we needed that point to tell you, for example, a copay card could be eligible for you based on what you've told us. If you say you're on Medicare, we're probably going to need additional income elements we may need to know if you're on no interest. Whether you were laid off as a result of COVID, those kind of questions come up in the flow as we work to essentially filter out the things that aren't relevant to you. So what you get at the end is just the specific programs that are relevant to you, I want to be clear, we're not acting as an actual Assistance Program, what we're doing is essentially eliminating the guesswork that's gone in for far too many people in this at that point, in time of not knowing which programs they should be going to in the first place. This project was born out of stories about just that, where we hear, frankly, these harrowing stories of people taking a day off of work, going into a clinic being told there might be a program available to them filling out an application having extension only to then be rejected, not knowing that it's because they'd applied to the wrong manufacturer or the wrong program within a manufacturer not knowing that they were actually being Medicaid eligible, those kinds of problems, and they kept happening. And for me, that's an awareness and routing issue. And I want to sort of double down this is far from systemic reform here that we're talking about. But what it's doing is offering a tool to those patients, and frankly, the providers that are helping them ensure that they're getting to the right place out of the gate. Stacey Simms 6:20 So it's like a clearing house. You know, we've seen those piecemeal posts here and there Lilly has this, you know, novo has this you can apply if you've lost your job. This is a place where you go and put a little bit of information in and narrow it down through all of the assistance programs. Thom Scher 6:36 Yes, so it includes programs from Lily violin, Novo Nordisk, and Santa Fe, as well as various government assistance options, in particular your state Medicaid programs, as well as Medicare information and chip information depending on state. And all of that is essentially aggregated. It also includes patient assistance programs and commercial programs. So that includes things ranging from copay cards on the commercial side, for example, or cash programs, and also the actual patient assistance programs. And that's important, because it's another area where patients have friction point. Because, as we all know, if you call the lily solution seller, they can't help you with your Novo Nordisk product. At the same time, if you apply to the Lilly cares patient Assistance Program, you may not be getting information about what you couldn't be getting from the commercial side, there are all sorts of bright lines that, frankly, are set up for regulatory reasons. And that's fine. But by injecting a nonprofit in between, we were able to create a one stop clearing house as you put it, and that's a really good way of thinking about it. Stacey Simms 7:42 What happens to the information that I put in to be on type one, Thom Scher 7:45 if you vanishes, it vanishes, it vanishes. Stacey, it's a great question. It's plastered all over the site, because we get it a lot. Everything you're inputting is done browser side, nothing ever communicates to our server with the exception being at the end if you decide to email the substance of it to yourself. And at that point, we use it for very strict purposes. And that is to send it to you and then purge it off of our servers as well. So we're only looking at the data in aggregate traffic location of that traffic, and then generation of action plans. So the number of people that are actually getting to an action plan itself. But outside of that we don't retain any of that information. It's actually a real point of concern, in particular, for often the people who need these programs most it's also a fear that we're just passing marketing information, for example, along to a manufacturer and we're very much not, Stacey Simms 8:37 I'm curious about how the conversations went, because I imagine there were some people in the room who were like, We need this, we got to capture this information, because that's what everybody does on the web, right? I mean, you know, when I put out my book, I was shocked when my website, people were like, Oh, you got to capture every person who buys it does this and you know, people opt in, but at the same time, it's stunning how much information you can capture, if you want to, can you give us a peek into those conversations? Thom Scher 9:01 Yeah, I think that there's always a give and take in those conversations. And for me, it stems from the goal of what we were trying to accomplish seamless, rapid information to actual people in need. And in that case, I don't need to capture that information. And in fact, I don't want to, they can slow the process down. And frankly, it adds a layer of this sort of thing is some kind of weird marketing output that was never really meant to be the entire premise at the get go was, look, there are people who don't know what options are available to them. And this is for them, at the end of the line are real people do not know which programs are available to them. And I want to add, it's unfortunate that that's the reality here. It shouldn't be on individual people to have the level of health literacy required to navigate the system. But that's the system we're in. And if we can reduce any of that burden, then that was the goal at the outset. And so I think the really honest answer to your question is I had no tolerance for those conversations. In the early days, when we started building this thing Stacey Simms 10:05 I have to ask you about the elephant in the room, which is, and we've already seen criticism online and elsewhere, that there is money changing hands here, that Beyond Type 1 is taking money from the insulin manufacturers to put this site up to drive people to the insulin manufacturers, to be very clear, what is the relationship did the insulin makers give money to have their their logos and their websites as part of this, and separately, to acknowledge that you've been on type one has taken money from these manufacturers in the past. Thom Scher 10:35 So first off, yes, we've taken money from the insulin manufacturers, it's disclosed on our funding model page. And we're clear about that. And what I maintain high degrees of transparency on it right on the top of the website, on the website, if you get there, it's on the homepage, it says it was funded by the four manufacturers, you know, this kind of a project is complex. And frankly, having that many manufacturers on a mass catalog with the partners of sorts that we do is a hard set of cats to herd anyway. But in this set of instances, what we needed was funding in order to be able to build the second or maintain the sun in order to get awareness out about the site. And the tool itself is pretty powerful on the back end. And I'd love to get into that a little bit more. But in terms of what it can do moving forward, because there's a lot more that I think we're going to be able to do with it. The other thing, though, is that we frankly, needed a working relationship with the manufacturers, in order to understand the nature of some of these programs really get a look under the hood at all of the edge cases, all of the one off instances in one off states where there have been for example, copay caps passed or various laws have changed the eligibility of programs understand the dates when those programs reset annually understand changes in eligibility to them and build a working relationship that will allow us to also maintain that accuracy on the site itself, so that we're directing people to the right places, you know, this information, one of the critiques has been it was publicly available. And there were a number of organizations that had big lists, we were one of them Beyond Type 1.org. Slash get dash insulin for the last couple of years has aggregated this kind of information. But what it hasn't done is have the degree of eligibility copywriting that you've described as Clearinghouse, rightfully so that this tool does, we're really able to get in there and say, Hey, based on what you've told us, we believe you're eligible for this program, you're gonna have to go to the program to confirm that. But that is so much more effective, having been able to actually work with the manufacturers themselves, and have that working relationship to not only ensure accuracy at launch, the accuracy and awareness of the tool moving forward. Stacey Simms 12:44 I think there are some people in the community though, who would say we shouldn't be working with the insulin manufacturers, we should only be fighting with the insulin manufacturers, because the prices are so outrageous. And the situation is so dire. Obviously you disagree with that. Can you address that? Yeah, I think it's right, Thom Scher 13:03 for patient advocates to question the relationships held by patient advocates, you're so friendly advocates anywhere, I don't think that's a bad thing at all. And I respect whose view is that you shouldn't be working with insulin manufacturers in the diabetes space. I do disagree. I think that it's important for us to have a working relationship, not only to be able to fund critical projects that can have a meaningful difference in people's lives. But in addition to that, to have a working relationship and a seat at the table to help drive change for work. You know, I think that some of this critique comes down to if we're working with them when we critique that, you know, I mean, at launch of this, we also published an open letter of sorts from me where I'm very direct that I believe it's unacceptable to see less prices having rose in the way they have, I'm very direct, but I think it's unacceptable to see rationing where it is, it's unacceptable to have the rebate system how it is. But none of that, for me, Trump's, what is the importance of getting this out to the people who need it and having the support to be able to do that. And I'll add on this, Stacey, you don't watch something like this in this day and age with insulin manufacturers about insulin and not know that that critique is coming. We of course knew that critique was coming. We launched this in spite of that knowledge, because we believe that downstream are actual people who need the tool. And that came out over and over again, over the course of building it has come out over and over again, Since launching it in no way means we're giving up on the upstream fight. And in fact that upstream fight is a much harder, much longer road. And it's a road that we absolutely believe in. We believe it definitely needs to happen. But it's not as simple as asking for list price to simply be lowered. In fact, there's quite a robust set of evidence out to the contrary of that. So I respect that view. But I disagree with that. Stacey Simms 14:57 I'm curious, we're talking really days after this as long Have you heard from people that it's helped? Thom Scher 15:02 Yeah, I have a member of my team said to me when we launched, and it's some of the most sage advice that was given about this, that launch day was going to be about hotcakes, we were going to see hotcakes from people that were critical of it, we were going to see hotcakes from people that really thought it was impactful, we were going to see patients stories about these programs working or not working for them, we were going to see industry leaders and sort of key thought leaders having strong opinions about one way or another. And then at the end of the day, none of that really mattered compared to the stories that we hoped would emerge about people actually using it. And we're starting to get some of those stories. And I, I was just reading one of my inbox from a partner at an org who sent us that they had walked somebody through it over the phone. And that they they'd gotten a phone call asking for help, and that they take them to the site and walk them through it, that it worked for them. We also had a conversation with them. We're doing some work with Dr. Dan Peters, on our leadership council. And she just had glowing things to say about its use case in clinic. And we saw a lot of that kind of commentary that this is going to be a really powerful tool for providers to be there. And so yes, I think you know, Far too often in the diabetes space, I think we get lost in some of the the higher level talking points about why and how we're operating and whatnot, when all the way downstream or just people trying to frankly, manage their diabetes, live the best lives that they can and get through the day sometimes. And that's a huge volume of people. And I think this tool more than anything is for them not for the hotcakes by myself or you or Twitter or industry kind of none of that matters to me by comparison to whether or not people are actually using it. And Stacey Simms 16:42 curious to it also says in partnership with some groups that I'm familiar with. But I haven't seen in conjunction with diabetes issues before Feeding America, the n double A CP, the National Hispanic Medical Association, tell me a little bit about reaching out to those groups and why it was important that they get on board with something like this, Thom Scher 16:58 it's critical to me, it spoke to what we were trying to do. I remember the Feeding America conversation really clearly the first one that we had with them, and they're phenomenal partners. And we're going to one of the things I'm really excited about with the tool is that we're going to add some food security information in terms of how to find local food banks that's based on some of the information that we're getting that's coming likely in the next week or two. With Feeding America. You know, one of the critiques that I think is so often dead on when we talk about helping those who need the help most is that people say well look, doing Facebook posts about Insulet affordability isn't really helping those that are sitting at a pharmacy counter somewhere not understanding how they're going to pay for insulin, not knowing what options are available to that Feeding America is on the front lines of the equivalent of that when it comes to food security. And they know what so many of those community health scrolls really look like they had tremendous insight for us into how we built this, how to get it out. And it gives us a direct mechanism to drive awareness of the tool in groups that may have outsize to me need these underserved communities. And definitely sick he is the same way NAACP has a robust health arm, and they think about the best way to serve those who need support. And you know, they obviously deal with that through various lenses. But we were honored to have their support and they and NHS and Feeding America, I think it speaks to the idea that this issue is one that, frankly, transcends the diabetes clumber station. This is so often about the people who are impacted by diabetes, who aren't part of those online conversations. They're not part of Camp set events and summits in the life. But they're absolutely impacted by the disease. Yeah, Stacey Simms 18:43 I worry about that too, to be frank with you. Because you know, my podcast audience, as you listen to this podcast, you know, these are some of the most well informed, most engaged, these are people who may have the time to listen to a podcast who know where to find information. So to hear this, this push to try to get this info to people who might not be on Facebook, listening to podcasts, that just makes a lot of sense to. Thom Scher 19:05 Yeah, look, I also will add here I could be asked for your listeners isn't that they perhaps need it. Although I encourage them go play around with the tool, see what it gives you let us know if you see anything that we can do to improve. But more than that, it's about sharing it. And I think some of the things that our team has been most touched by have been people who shared it with even the equivalent of, Hey, I may or may not support Beyond Type 1, I may or may not need this tool myself, I certainly don't believe that this tool should have to exist in the first place. But I acknowledge that it needs to. And there might be people who follow me, there might be people in my network who do need this tool. And so I'm getting it out there for them. And that resonates with me so much because it's the only way that you can get necessarily the people who really need it is through conversations like that, partnering with those on the ground that are really doing it and making sure that it's getting into that hands of the people that are actually not only using it, but working with the people who are using it. Stacey Simms 20:05 I like that idea too of sharing it with the physician sharing it with your endo, or your general practitioner who may not know anything about Beyond Type 1 at this point. And then to have this for other people who may need it as well. Thom Scher 20:15 Yeah, you know, Stacey, I'll add to on that there's a reason why we housed it at get insulin.org. It's not some brand play for Beyond Type 1. I think that for us, if this was some kind of traffic play of the like, like, sure those critiques are a lot more appropriate if we'd launched something and driven a ton of traffic to the Beyond Type 1 site with a bunch of click through now, now isn't what we did here. We tried to build this thing. So it could be standalone independent with a strong coalition of both diabetes and non diabetes partners. And frankly, a ton of touch points offline, to ensure that this gets out there, which we're doing. I'm doing this podcast, but there's also radio ads happen in certain places and digital marketing happening in certain places. Yeah, we're doing a lot of targeted work over the course of this quarter and into 2021. To make sure that this is getting to the right places, we just sent print versions of awareness materials to a ton of clinics. So this has a lot of tentacles that bring that we haven't talked about a ton. Because it's all part of what is a much bigger strategy around how to ensure that this gets out there to the right people. And the diabetes audience that you have is a core part of that course. Stacey Simms 21:23 Thom, before I let you go, and you may not be able to answer this, and that is fine. You know, we're talking at kind of the peak of this incredibly historic, bizarre, I don't know what kind of words you want to use to describe it election year. I know, I'm not gonna ask about politics, don't worry. But I am curious, are you optimistic that we're going to see a progress on actual insulin pricing and changes? I feel like the last couple of years, even with the hot takes, as you say, there does seem to be a groundswell of if that support, maybe just better education among the public. I'm a little bit more optimistic than I used to be. And I'm curious if if you are Thom Scher 22:00 no, Stacey, I don't know what you're talking about. There's an election and 2020 has things going on that are crazy. I, I am optimistic. Look, I think the reality here is that the system is very broken. And we all know the system is very broken. The unfortunate reality about diabetes is that it's not that it's diabetes broken. It's that diabetes is the poster child for how broken the system is. And that means that we believe the answer to that is regulatory reform. It's it's actual legislation, federal and state. I agree. There's been a groundswell. And I credit grassroots activists that I credit the work of number of organizations for that I credit a handful of politicians on both sides who've done work on this arena. But we are hopeful. I think that we're starting to see policy proposals that make sense that are gaining traction. Do I think we're going to have it immediately, you know, all of a sudden, on one day, no, I think this is going to take time. But I think we all know that with time, this issue is going to only get worse, unless more is done. So I am optimistic despite what is a relatively sad view on the reality in terms of the state of affairs. Stacey Simms 23:11 Well, thank you so much for joining me to explain this. I appreciate it. And you know, we'll check back we'll see how things are going. And I do appreciate you taking the time to address the criticism and explain the program. Thanks, Thom. Unknown Speaker 23:26 You're listening to Diabetes Connections with Stacey Simms. Stacey Simms 23:32 As I mentioned, of course, we are linking up at Diabetes connections.com in the show notes, and there's a transcript there, by the way, as well. We do a transcript for every episode in 2020. And I hope to kind of go back and put more in. I've been doing this show for more than five years and more than 300 episodes. So there's a lot of transcripts to go back. But I think it's really important that you get this information and that if you need the assistance that you get it, I would love to know what you think now that you've heard Thom speak out, I'm sure many of you are still quite upset he addressed the issue about taking money from the insulin makers doesn't mean that you have to agree with it. But I'm glad that he came on and explained the stance of Beyond Type 1. I also want to add that I'm going to be doing an episode or social media post or something to get some information out. So as they say, watch this space, because I have a personal story. And I have a friend with a personal story. And we are both going through some difficulties using specifically Not a single amount but whatever the Lilly coupons. And as we are navigating through this, I am kind of waiting for the situation to resolve to share the information and what we've learned with you. So I really hope to bring that to you within the next week. But I will say there were two separate issues here. One, the annual cap that Lilly has that all the manufacturers have and how to get around that. And the second is why would it be difficult to use the Lilly coupon when you have commercial insurance if it tells you that you can. So there's a lot going on. Anyway, more information as always At Diabetes connections.com Follow us in the Facebook group at Diabetes Connections the group or on social media me Stacey Simms, and I'll keep you posted on those two personal stories, one of which is my own story about using those lovely coupons. Stacey Simms 25:13 Thank you to my editor John Bukenas from audio editing solutions. Thank you very much for listening. We will be back here on Tuesday with our regularly scheduled episodes. I will see you then, until then, be kind to yourself. Benny 25:31 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged
Linda Franklin is one of the strongest people we know - and we mean that literally! She holds world records for power lifting and has ranked at an elite national level for cross fit. Linda was diagnosed with type 1 at age 26 and reveals she struggled with management until she found her community. You may know Linda from the amazing Facebook group, Type 1 Diabetic Athletes In Tell Me Something Good, the dedication of a dad. Innovations this week has an update on the longest wear CGM yet. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's new book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke hypo pen, the first premixed auto injector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:22 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:27 This week, Linda Franklin is a world record holder for powerlifting diagnosed with type one at age 26. She's in her early 60s and at an elite level, but she says she really struggled with management until she finally met somebody else with T1D, who shared her passions. Linda Franklin 0:46 And I was trying to do CrossFit and coping with the crazy blood sugars. And I was really having a difficult time when I met him. It was really an eye opener for him and meat. We were just so excited to talk to each other about things, Stacey Simms 1:00 Linda and that friend Daniel went on to create a now well respected and very large Facebook group for athletes with diabetes. We'll hear more of Linda's story and get some great advice about fitness and type one in tell me something good. The dedication of a dad and in Innovations an update on the longest wear CGM yet this podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of Diabetes Connections. I'm your host, Stacey Simms, and I'm really glad to have you along. We aim to educate and inspire about type 1 diabetes by sharing stories of connection. I don't know about you, I am on the edge. What a stressful time. I mean, this year has already been bonkers. I find myself, as they say, Doom-scrolling through Twitter, I was already on my phone way too much before this year. And it's just multiplied to the nth degree. Now, don't worry, I'm not going to talk politics here. This is not the place for that you do not come here. I am sure to talk politics. And if we were going to have a show about that, because let's face it, sometimes there are issues you would know before you heard me start talking. This is not that. But I do think it's important to acknowledge that politics is exhausting us. Everything is exhausting us right now. And I thought it would just take a minute to share with something that is really helping me. And maybe you have your own version of this. Maybe I'll put this in the Facebook group when this episode comes out. And it's Diabetes Connections of the group. I really hope you can join us on Facebook. It's such a great group of super smart, wonderful people. But what's helping me is another podcast. It is pop culture, happy hour. It's an NPR podcast. It's been going on for years and years. I think they just celebrated their 10 year anniversary. And they just talk about pop culture for 20 or 30 minutes. It's fun, it's distracting. And what I have been doing lately because I just found this podcast this year. So there's a huge back catalogue to me. I'm going back and listening to podcasts from 2016 2018. You know, I'm listening to them talk about movies, and TV shows and things that were popular in the news a long time ago. And you know what? It's a great distraction, and it gives my brain a break. So I know you come here for diabetes news and not necessarily weird podcast recommendations. But man that is really helping me right now. Along with walking my dog. Maybe I should give a little nod to fitness since that was what we're talking about. Actually this episode. You know, I live in the Carolinas. I live in Charlotte, North Carolina. We're so lucky. We live near a Greenway and the weather is generally pretty nice. So I have been able to walk my dog almost every single day. She's actually right here under the table as I tape. She's usually pretty quiet and when she's not, We edit that out. But my dog's name is Freckles. She's not very friendly. She likes us but she hasn't met anybody else that she likes yet. Except maybe my dad. He does like when grandpa comes to visit because he also walks her every single day. But man, she's an interesting character. Anyway, we will get to Linda Franklin. That's why you're here. Linda Franklin, who is an amazing, amazing story, not just for her dedication to fitness and her passion for it her world records in powerlifting but her diagnosis story and what she found inspiring early on, and a teenage Bret Michaels how he makes an appearance. So we got a lot to talk about. But first diabetes Connections is brought to you by One Drop. Getting diabetes supplies is a pain. Not only the ordering and the picking up but also the arguing with insurance over what they say you need and what you really need. Make it easy with One Drop. They offer personalized test strip plans. Plus you get a Bluetooth glucose meter test strips lancets and your very own certified diabetes coach. Subscribe today to get test strips for less than $20 a month delivered right to your door. No prescriptions or co pays required. One less thing to worry about not that surprising when you learn that the founder of One Drop lips with type one they get it One Drop gorgeous gear supplies delivered to your door 24 seven access to your certified diabetes coach learn more, go to Diabetes connections.com and click on the One Drop logo. Like many of you, when I have question about sports and diabetes, mostly about my son, I head over to the type one diabetic athletes group. It is one of the biggest Facebook groups there is. But it's also largely drama free and full of support. My guest this week is a big reason why she didn't start the group. You'll hear more about that in our interview. But she is an inspiring and I think larger than life personality, who challenges us each week with flex Friday and other fun posts. Linda Franklin is a world record holder in powerlifting. And before that, she placed 14th Worldwide in the 2014 CrossFit open this interview was conducted live in that Facebook group, you can watch it there it's recorded and then playback in the group. Or you can see it on our YouTube channel Diabetes Connections over on YouTube, I will link all of that up in the episode homepage as usual, at Diabetes connections.com It was great to talk to Linda here is our interview. We don't normally take like this and who the heck knows how it's gonna go. But she's been such a great sport. And I'm so excited to welcome my guest someone a lot of you know quite a bit about but some of you may not and boy but a story. Linda Franklin, thank you very much for letting me in the group and agreeing to do this and fingers crossed, it all works out. Linda Franklin 6:22 Yeah, it will. Stacey Simms 6:23 Let's jump right in. Because this is a group for and about athletes. And I joined this group because of my son, who was a type one. And he's played a billion different sports. Most recently, he's more interested in wrestling. But I'm just so impressed with the amount of knowledge in this group. Do you mind just sharing how the group itself came to be? Sure. Linda Franklin 6:46 So Daniel Borba, who has been a lot a little inactive lately, because he's expecting his second child, which is super exciting. But I met him back in 2013, my brother said called me and said, hey, there's a type one diabetic in my gym, my brother on the CrossFit box. And we were both so excited because he knew I didn't know anybody. And so I met Daniel, we did a little tiny podcast that just disappeared, you know, was wasn't much of anything, but it was so great to get to know him. And he'd been thinking about exercising and not there just wasn't much knowledge out there for how to control blood sugars, exercise, being type one, taking insulin, it's very complicated. So he just got decided to start this group and invited me and here we are. This was seven years ago from June, and it's blown up. Well, unfortunately. Stacey Simms 7:44 Yeah. Well, I mean, there's good and bad, right? Linda Franklin 7:47 Yes, yes. Well, let's Stacey Simms 7:48 talk about the good and a little bit. I mean, we're gonna talk about your story and all of your incredible accomplishments. But I'm really curious seven years ago, and that's about when I started my local Facebook group to the diabetes community was interested in in kind of different things. The technology has changed. Now the knowledge has changed. Do you remember the first kind of questions people had I imagined it was just how do I work out without crashing? Linda Franklin 8:11 It was very small. We were like 300. To begin with, I would say for the first year, three to 500 people. So it got to be very intimate. And as the group grows, larger, questions become more voluminous. And you can start categorizing everything. But at first it was Yes, that was a big, big problem, or spike, what a really big problem was because it was really based around CrossFit to begin with was the spike after exercise. That was a huge, huge problem. And for me, too, because I was doing CrossFit at the time. And it was a that crashing and spiking after exercise was a big, big issue in the group, how to eat before you get started and when and how much and how much protein and I could go on? Stacey Simms 8:57 Well, I'm gonna ask you to so I made a note of that, because I think it would be great to get some of your advice a little bit later on. But you said CrossFit, now I'm looking at your bio, and I don't even know where to start your soccer CrossFit world record holder now powerlifting let's go all the way back before you were diagnosed in your 20s What's your sport in high school? Like Were you always athletic? Linda Franklin 9:24 I was a cheerleader. Okay, this was the 70s, early 70s back in what was cheerleading, Stacey Simms 9:30 the sport that it is now because the leader in high school in the 80s and it was not an athletic sport. Linda Franklin 9:36 No, it wasn't then, but I grew up with a bunch of boys and I climbed trees. I've always been a tomboy. And when I did sports in school and high school classes, I set the standing broad jump record in high school and you know, just stuff like that. I kind of excelled at every sport that I did. Except for basketball. I can't run in triple vault. So that was like, but I think my whole family's pretty athletic. Stacey Simms 10:04 So when you were diagnosed, first of all, what was the process? Were you given an answer immediately or at age 26? Linda Franklin 10:12 Was it? We don't know what it was strange. Like I've told someone before, or many people that women, it's typical when you have a lot of high blood sugars for a long time, or even a short period, yeast infections are a really big problem. And it was for me, and I was actually in the midst of bodybuilding, starting lifting weights. And this is what introduced me to weights which I found a real love for. And I started just eating a lot drinking a lot up on my ping and the yeast infections got super bad. I look like I walked like I'd been riding horse for. So I went to the doctor, gynecologist beat into a company says you need to go to the lab, like today. So I went the next day because I'm 26 living by myself and my back. Yeah, whatever. Okay, right. Yeah. And I drink in syrup all day at the lab. And by the time I was done, I was like, almost 800. So they said, we'll come back in a few days. And you're going to go see your doctor on Monday. And you know, but they let me go home. And it was really casual. I mean, they knew, obviously, I was diabetic, but they didn't put me in the hospital right away like they would normally now. And that's pretty much how it all got started. Stacey Simms 12:07 Did you immediately think? Did someone tell you you can go right back to the gym? Or were you told don't work out? Do you remember anything different? Linda Franklin 10:12 No, I just remember sitting in the doctor's office with a diagnosis on Monday morning. And he just literally went into a fog. He just said you know you're gonna, this is gonna cut your life short. And just all the old 70s routine. And he wasn't trained. I mean, it was an internist, or whatever you call them and wasn't really trained in depth about diabetes, treated mostly type two. So he did tell me not to do activity. But I didn't go back to bodybuilding because I wasn't feeling good. Stacey Simms 12:07 What led you back to your activities at all, though? Because you didn't ultimately wind up not exercising? Linda Franklin 12:14 Yeah, absolutely. So what happened though, is I got really active only to control my blood sugar. I refused insulin, I freaked out. Well, I didn't have parents looking over me gone for doing this. I didn't have Stacey Simms 12:28 an endocrinologist either. As you said, You know, I didn't. It was Linda Franklin 12:31 just pretty, pretty basic. And I just decided, Okay, well, after I eat, I'm just gonna I gotta jump rope. I jumped rope, or walked or ran after every meal for about three months, until I was down to eating out of a jar peanut butter and decided, I think I need insulin. I just couldn't do it anymore. But that's I just, it was ingrained in me to exercise anyway, before that. So I decided, Okay, I kind of laid off for a little bit. And then I got back into snow skiing and doing normal things. But I wasn't in great control or anything. But I still did stuff. Stacey Simms 13:10 Yeah. I mean, you couldn't have felt that great. But you also don't want to sit home and not Linda Franklin 13:13 feel great. No, I'm not wanting to sit behind and watch everybody do stuff when I know. So when did things start to get better? Actually, I would say right before my first pregnancy, I knew that I needed to get my ducks in a row before this happened. That was when I was 33. And I went to the sweet Success Program. But they were both my pregnancies were planned. And I decided I got my a one c under six and got pregnant, had my first baby. And then two years later, did the same thing. And then after that it got a little bit crazy again, you know, with kids and was hard to keep in control. But that's when I realized I need to do better. I didn't have a blood sugar meter, the first two years, I cut my strips into quarters to save money because the meters then would take cut strips, they won't know. So I did that. And I did all these things to save money. But I did a lot of injections to I was stacking insulin a lot up and down, up and down get really low get really high. And it was I was a mess. Before we move on, Stacey Simms 14:21 you mentioned something called Sweet success. Is that a local program to you is that a hospital program actually Linda Franklin 14:27 was a nationwide program, I believe for women type ones that get pregnant and they just start this program suitesuccess. I don't know if it's California based or if it is nationwide. I'm not really sure but it is I do know here in California and it was wonderful. He said he was at a more it was at a UC hospital. I was there every two weeks but they both went fairly well. Stacey Simms 14:54 It's such a different time I think it's hard to understand is Unknown Speaker 14:57 that Unknown Speaker 14:58 not only the insulins were different But as you said the blood sugar meters were new in the mid 80s. It's not like it is now at all. Stacey Simms 15:11 Right back to Linda answering that question and taking a look back. But first Diabetes Connections is brought to you by Dexcom. And we have been using the Dexcom G6 since it came out more than two years ago. And it's amazing. The Dexcom G6 is now FDA permitted for no finger sticks for calibration and diabetes treatment decisions. You do that to our warmup, and the number just pops up. I mean, do you remember back before where you had to wait in a two hour warmup, and then you calibrate then it would start populating? It's just a great advancement. We've been using a Dexcom for seven years in December, and it just keeps getting better. The G6 has longer sensor were now 10 days, and the new sensor applicator is so easy to use. Benny does this all by himself. Now. We love the alerts and alarms, and that we can set them how we want if your glucose alerts and readings from the G6 do not match symptoms or expectations use a blood glucose meter to make diabetes treatment decisions. To learn more, go to Diabetes connections.com and click on the Dexcom logo. Now back to Linda. And she's talking about what technology was like when she was first diagnosed. Linda Franklin 16:20 No, there were no cgms there were no cell phones. I mean. So it was Harry Caray. You know, I especially being diagnosed in my mid 20s. I know some people that were diagnosis, children, their parents kind of monitored them and got them through high school into adulthood with a lot of success, but also got them real regimented. Whereas me, I'm 26 I've already got my routine and this gets in the way. And here I am gone. Uh, well, I'm just going to make do till whenever until you know more good stuff comes along. And I I suck at technology. But I sure do love it. I'm telling you. Stacey Simms 17:00 Well, unless I'm laughing technology, I can't even get my your phone good wired things to behave. And you know when my lighting is insane, so we're in good company, sister. Don't worry about that. But let's talk about you said you started to turn things around a couple years after your second child was born. I'm curious, like, Did you meet somebody? Did you just say to yourself, Linda, I'm not feeling great. I want to do more. I got the CrossFit stuff going like Linda Franklin 17:21 I'm actually no, I never did know anybody until the dots started. So I didn't really know anybody that was type one, until I was probably well, until I met Daniel Borba the founder of the group. That's why my brother called me said I met a type one because I really didn't know anybody than other. I worked in endocrinology office, and there was another girl there that was, but it wasn't the same as meeting and talking about Stacey Simms 17:49 was it until you met him that you've got things. I don't see more under control. But you're such a success story. Um, Linda Franklin 17:57 it did help because it, it made me pay attention to it more, I was kind of brushing it under the rug for a lot of years, like, Okay, I'm just gonna just shoot myself through my chains and just keep doing what I'm doing. And he put it in my face. And I was trying to do CrossFit and coping with the crazy blood sugars. And I was really having a difficult time. So when I met him, it was really an eye opener for him and me to talk about, we were just so excited to talk to each other about things. But before that, my whole connection with type one, and any type of anybody else out there with it. What were diabetes forecast magazines, and I'll never forget when I was in my mid to late 20s. I got one with Bret Michaels on the cover on my porch. I had it I have a T shirt, but it was so cool. I'm like, Oh my God, he's a teenager with type one. Wow. Yeah, it was it was weird. But I had stacks of diabetes forecasts and I would read them. And that's how I connected to it. There was nothing else to connect to really for me. Stacey Simms 19:02 So tell me about CrossFit. This is not for the faint of heart. I don't even sure where to begin. I just think of people flipping tires. Right and to be ranked 14th in the world Linda Franklin 19:13 at one point. Well, that was 2014 CrossFit open. Yeah. What goes into that? I got in. Okay, well, it's at that point in time, I was training five days a week. And in between all that I was riding up and down to the CrossFit box on a bike that had no gears up and down hills, like so, you know, I'm a nut. So that's what I did. And I just trained five days a week and did everything I could I mostly trained with it was all younger people in the box. So you know, at my age I started like I was like 57. So there just aren't weren't that many people who were that age in my box. So all these younger people in there and I'm going I gotta keep up. Cuz that's my, that's how I think. Stacey Simms 20:03 So take us through a little bit of how you manage diabetes, though, for something like CrossFit, when it is it's cardio with strength. There's just so much going on. Linda Franklin 20:10 Right? Yeah. And there's a lot of variables and you don't know from day to day, and I actually had to talk to the owner there to give me the workouts the day before, which she doesn't know, CrossFit box likes to do that, because they don't want you to cherry pick their workouts, they want you to just come and do whatever is on the schedule that day. But I had told her, I can't keep doing this without knowing because I have to plan. And so she was kind enough to work with me and what I would do, I knew that what time the classes were, and after talking to Ronnie, my coach, back then he wasn't my coach, but he knew I was doing CrossFit. And he was actually an admin in the athletes group and said, you know, do some insulin and eat some protein and a small amount of carbs, but do half the insulin for it, and then go and take some Gatorade, put it in a bottle and have something to sip on, which is what I started doing, and it started to get better. But still, it was never perfect. It was really difficult. The ups and downs. And it mostly was the adrenaline afterwards kicked in. And I kicked in while I was working out. But afterwards, the blood sugar's were high for like 24 hours. And it was ongoing, you know, until I had to stop. Some days were different depending on the workout, but just some workouts just hit me really hard. So it was never stable. Stacey Simms 21:30 Did you ever figure out how to handle this? I gotta tell you and I'm only dealing with a teenager. Yeah. Isn't CrossFit that much? Like he hasn't workout like that is what I mean. But we definitely have those adrenaline highs after certain sports. Linda Franklin 21:42 Yeah, they're really tough alone. Yeah, soccer, I have really big problem with that, too. And my bigger problem, I think was all of it was that I would not eat. Like when I did soccer tournaments, I wouldn't, because I couldn't eat when I was out there running because I played striker. And it was, you know, a lot of sprinting, and I just can't eat and do that. So I wouldn't eat. And I think that is part of the problem was that I wasn't consuming enough food and taking insulin for it to get my blood sugar's down into a normal range. I think it's really important that people don't starve themselves around activities, just try to put your food in at a, you're not to stuff yourself, but eat the right things and take insulin for it, and you will get through it. It may not be perfect, but it will be better than if you don't eat at all, because your liver will raise its ugly head. Stacey Simms 22:37 How then did you go to powerlifting, because that's just a natural progression, it's something happened to just see something or set a goal. Linda Franklin 22:43 It was not a natural progression. I CrossFit, well, long term diabetes complications actually probably caused it I did with CrossFit, you do a lot of excessive gripping exercises, a lot of things are like do 100 days and then 50,000 level bar and you do the pull up thing. And with all the gripping that I was doing my overtime, your tendons thicken with diabetes when it's out of range. And so that's what happened and my fingers started to trigger all all of them all. But what happened for people who weren't familiar, Linda, I'm sorry to interrupt you. Can you explain what that is? When you say okay, triggered? Yeah, so trigger finger is you have tendons and all of your fingers. And there are two that go up to side. And there are little if you can imagine a fishing pole with a line on it with a little I don't fish but me there's, you know, there's a little you know, the little things that you thread the, the wire the line through, okay, so those are on your knuckles, and those of your tendons sliding up and down. So the line so when you when they get thick, and like weedy and stuff, then they don't slide as well, they get caught. So with the thickening tendon, it can't slide through the little shields that are on the side there on your knuckles, so they get caught and they get stuck, and then you pop your finger open. But it's a it's a really common problem with diabetes and in women that are my age. So I went to UCLA doctor, he said, No, all your fingers are involved, and we're gonna have to do surgery. So I had a lot of hand surgery. And so I recovered and then I had shoulder surgery several weeks later, so I was just a mess for about a year. But I knew that I needed to get back to lifting I just I missed it so much and I just couldn't sit still my blood sugar's were starting to was gaining weight. I'm like, Oh, I just don't like feeling like this. So I talked to my brother who's a CrossFit expert. He's been in the games four times, and he told me you know, you could possibly power left and went back to the gym, started working on it, put a video in the Athletes group and I said, Okay, I've kind of reached a point where I don't know where to go from here. What do I do? And Rodney saw my video and he's like, let's talk. So we talked. And that's how I got started. Wow. What Stacey Simms 25:11 is appealing to you? About powerlifting? I can think of a lot of things. But I'm curious, like, why do you do it? What do you get from it? Linda Franklin 25:21 Oh, man, that's a really tough question to answer. I think it's a rush of, and there's obviously adrenaline involved, too, but just lifting heavy, it's mental. You know, obviously, there's a physical benefit for it. But the mental part of it for me is that I like feeling strong. I just love the feeling of being strong, or getting stronger. And I don't care about, you know, records are great and everything. But to me, it's just the feeling of being strong is wonderful. Stacey Simms 25:54 What was it like, though? I mean, I know it's not about the records. There's a tremendous picture of you. I think you're breaking a record. And there's a crowd of people. I don't know if it's a video screen. I couldn't tell from the photo that I was looking at. And everybody's kind of cheering and robbed me, especially as cheering. Oh, you know what I'm talking about? Yeah, just Philadelphia Linda Franklin 26:13 meet that. I went to, I believe, yeah. And in fact, that was me. And Roz, such who is in our group and does the daily workouts on the weekends, we did a meet together, Rodney coached six or seven of us out with a group, but there were seven type ones that did that. Wow, that meet in Philadelphia. So I flew out there from California, never flown that far in my life. But I did it. And we It was a blast. And it was a huge type. One thing was so awesome. Stacey Simms 26:46 I'll come back to the other questions and about the records. But what was that like for you? I mean, as you said, You've never flown that far, you came all the way east to be with a group of type ones power lifting. I mean, that must have been an incredible situation just to be around everybody. Linda Franklin 27:00 Yeah. Well, and, and in fact, I hadn't met half of them. But we had talked, you know, over social media and stuff for some length. And although Roz, I knew before that she had come out and handled me for a meet in California, which was amazing. Another one of us flew out from Portland. And it was just, I can't even explain how crazy it was with the blood sugars and all the beeps. And it was just insane. But we were all there cheering each other on. And you know, Rodney had his hands full. Let me tell you. That's awesome. It was pretty incredible. Stacey Simms 27:35 What's different about managing blood sugar's when you're powerlifting? Then CrossFit, do you mind if is like a little bit of advice, maybe to for people who are looking to get into it. Linda Franklin 27:43 What I found is consistency is key. And it doesn't have to be every day. Because when I first when I first started getting really back into exercise, after being diagnosed, I tried to do something every single day. And I don't do that now. And I don't feel that I really have to other than I don't sit down all day long. But what I find with it is, it's more of a weekly pattern, versus a daily pattern. And if you do, train over time, you'll start to see changes in your blood sugar's at first when I first started, it wasn't great, but I started to learn how to treat. I knew what my weak plan was. And I could say, Okay, today, I'm gonna have a little snack before I go. But typically, I know how to combat highs better because it's not random stuff. I know what I'm getting into. Because it's just easier for me. It's more predictable. And now my body feels that it is to Stacey Simms 28:45 Is it a matter of keeping track and logs or looking at your CGM data? Linda Franklin 28:50 A CGM data is important. I used to keep logs ridiculously back before anything was around, so I can't do that anymore. I tried it last two days, and I'm done. But I do keep a workout book. I don't record my blood sugar's though. But I do know that when I go out there, I'm in a range. I either put my exercise mode on, I take my pop off if I see it start to fall, but I typically run fairly flat. Unless I just for some odd reason. Something goes awry. And that happens. Stacey Simms 29:23 You mentioned exercise mode. Do you use control iQ? Is that what Yes, Linda Franklin 29:27 I do. Stacey Simms 29:28 Tandem Dexcom. And it works pretty well for powerlifting. Linda Franklin 29:32 It does when you're doing high reps. When I do heavier weight, lower reps. I don't mess with it. I just leave it alone. But I do. You know I have an exercise bike in the garage. I get on every once in a great while. I do it Stacey Simms 29:47 a couple of minutes ago, you mentioned complications. And I feel like sometimes especially we as parents, we're so afraid to talk about that kind of stuff. Right? And the only way we want to talk about it is did you do it Right, with what did you do? What was your a win? See? How did you eat? Or did you at hell? You know, we were so narrow minded on that, that I just want to ask you, and I guess I'm, I'm trying to figure how to ask you. But first, let me say thank you for talking about complications in the first place, because it is something that happens. It's not something obviously, you have always taken great care of yourself, even when you were saying earlier that you didn't, you're active, healthy person. Is it hard, though, to share those experiences with the diabetes community? Linda Franklin 30:29 Actually, it isn't. And I feel that I'm being helpful when I do that. Because it could be diabetes, it could be anything else. To me, it's part of living life. And I look at it as I've done the best that I can, I don't look at it as a bad thing. I just try to let people know as not to be afraid of it, I do as I get older, I do have some anxiety around it now like seeing my blood work. When I go to the doctor i get i get real anxiety around lab work and stuff like that, I it's just part of getting older. It's not just part of being diabetic. You know, my mother died from type two kidney disease. And I helped her go through the process. And it was really, it left a real whole, you know, and I but it also made me aware that I need to, I really need to be careful. And so when I wait for my labs to come, I'm always like, how are my kidneys, you know, that's the first thing I worry about, because of what she went through. I saw what she went through. But you can only be the best you can from day to day. And I just hate to see people beat themselves up day after day. And I have adapted to what my hands are now they're not pretty and they're not, you know, my palms are strong, my fingertips are weak, but I found something I could do to keep me healthy. So you just adapt around these things. It's what we have to do as human beings, regardless of what we're dealing with. And I think it's good to know. I mean, I had someone reach out to me the other day about trigger fingers. She's been diabetic for almost 20 years, maybe I feel so good that people can reach out to me and talk to me about it. Because it's it's a real thing, just like frozen shoulder and all that other stuff in the end being type one diabetic. And I just think that it's okay. There are ways to handle it. I had a great surgeon, he fixed me up not perfect, but it's another chink in my armor. Now, and now I've got stories to tell right? down Stacey Simms 32:22 it's life with or without diabetes. Yes. You had mentioned before we got started that your daughter had learned a lot from you, in terms of being able to spot diabetes. Can you share that story? Linda Franklin 32:35 Yeah. So you know, with my kids, obviously, I've had two kids while being pregnant at 33 and 35. And both of them have had to give me glucagon. Unfortunately, I know, there's a lot of people that have lived as long with diabetes as I have and have never had to use it. But here I am. And they recognize signs just from being around me. Are you low? All the typical questions, but she worked at a daycare center and in a gym, and the couple brought their daughter there. She was 18 months old, and they dropped her off and she was not well, and my daughter was holding her and said, I think she's diabetic. I don't know what clued her in but there was some symptoms that this little girl was having that, you know, she recognized. I can't really tell you but I'm so thankful in a weird way that she did. Stacey Simms 33:25 And and the 18 month old did wind up getting diagnosed. Linda Franklin 33:28 Yes, she was the youngest in the county. Yeah, at that time. And actually she was it was in the hospital for quite some time and we ended up nannying her after that first my daughter, and then I did and I gotta tell you, kudos to you because I nannied her for six months, and I was a wreck. Oh, the literal wreck. I'm like, I can't do this anymore. Stacey Simms 33:52 There is truly I mean, every there's no good. There's no bad he didn't do the type one right? It all stinks. But there is truly something unique about toddlers and very little ones. It is a it's a circus. Yeah. It's just it you have to laugh. Linda Franklin 34:07 Because thank God, I know. Well, you know, the parents were super cool. And they just wanted her to be they loved having us there. And they knew that I handle it. But the thing is, and they were regimented, but not to the they want her to live a normal life. And it was so great to know that not to restrict her so much that she couldn't have fun. That's great. That's, that's funny. Stacey Simms 34:30 So a world record holder, all this wonderful stuff. You are in your early 60s. Now what do you have any any other goal or is there anything you're working on now? I mean, you've done enough You don't have to. Linda Franklin 34:44 Actually I am signed up for me to November, but it's November 7, in LA there's COVID there's the election. I think I may just pass on this. I'm really giving it some serious thought and I think it might just I might just do a mock meet at home. You know, I'm a little scared about the COVID thing, because I've had diabetes for so long and, and my age, even though I'm healthy, I don't know how much vascular disease I have. And they do say that that's an issue with it. So I just want to be careful. And there's no point in me really stressing out about something like that right now. It's not that important to me to go do so I figured I could just do a fake one in my garage. Hey, Stacey Simms 35:24 I've seen some pictures of your garage, though. Linda Franklin 35:26 I'm not what I was Stacey Simms 35:28 gonna say you. Did you put that together this year? Linda Franklin 35:31 Yeah, actually, some young kids here at the gym locally, the gym shut down. They had it at the gym, back up, and they sold it. And I bought it. Oh, I was very blessed in that regard. But yeah, so it's little tiny, single car garage. But I got it all in there. Just what I need. And it's working great. Stacey Simms 35:49 I'm curious. After all this time, it must be just such a part of your life. But do you still have to get psyched up to work out as often as you do? Are there days where you're just like, I'm laying in bed on none of this nonsense? Linda Franklin 36:00 And not very many? Yeah. I have them every now and then I had one just I think it was Sunday. Actually. It was like, yeah, I'll just put it off to tomorrow. But no, I have to set goals. Oh, to stay motivated, you know, but I I'm always looking for a goal. I can't not have one. And I think it's really important for people to have goals, but not to get so hung up on it. It's not a failure. If you don't meet it, it's the fact that you're working on something is the success. Stacey Simms 36:30 Before I do let you go here. I'm curious. There's so many people in the group here for support here for advice. If somebody is just kind of dipping their toe in the water as an adult with type one or a parent of a kid who's you know, playing high school sports, any advice for them? I mean, I would assume that with the technology that we have, things are easier, but there's still some basics that you have to think about. Linda Franklin 36:50 Yeah, well, there's always a couple things I preach about. And one is when I did have that really bad, low blood sugar, my daughter's boyfriend's a firefighter. And he said, Hey, you need to get up a box of and put on their low blood sugar type ones, snacks, or whatever you want to put on there. But make it bold and let everybody know where it's at. So when you go to sleep at night, and you start to have a low, it's always so important to have something on you or near you all the time. It doesn't have to be like if you're in the house, big deal. It could be across the room. But when you're in bed, and you're sleeping, you should have something by your bed, it gives your parents peace of mind. Or if you go play sports, you need to let everybody know that you're diabetic. I when I first joined a soccer team, that's the very first thing I did. I'm actually proud to be diabetic. Not that I like having it. But I'm proud to tell people look at this is me, this is what I'm going to do. And I want you to support me because I'm going to do this. So I think it's important to embrace it. Just let people know, don't hide it from anybody. And because they'll feel guilty if something happens. It's not fair to them, either. Stacey Simms 38:00 It's a good point. Yeah, it makes it easier for everybody. I always feel bad when people or kids are shy. Linda Franklin 38:04 And it's an educational point to you know, you bring it up and didn't tell people I had a guy asked me the other day goes home. You got it bad. Unknown Speaker 38:12 Yeah, you had the bad kind. Linda Franklin 38:15 Okay, so we sat for about a half an hour after about the night school. Stacey Simms 38:20 I just curious too, is anything ever happened? Where like it's popped off? Or somebody hit it with something? You know, My son has all sorts of crazy stories. Oh, Linda Franklin 38:28 actually, no, I've been pretty lucky. I'll just you know, knock it off on a door jamb or something. But you know, that's happened a couple times. But other than that, I'm pretty careful Stacey Simms 38:37 with a thanks so much. This was so fun. Thank you. Linda Franklin 38:39 You've asked questions I've never been asked before. I love it. Unknown Speaker 38:48 You're listening to Diabetes Connections with Stacey Simms. Stacey Simms 38:54 You can find more information on Linda and articles on her and find that picture that I mentioned with Rodney Miller and I will put that in the Facebook group as well. But you can find everything at Diabetes connections.com. Every episode has its own little little almost like a blog post. But every episode has its own page with a transcript as well. You can listen you could download the episodes. You can listen on any podcast player. I mean, at this point wherever there is audio on Stitcher, Pandora, Amazon, we're all over the place. You can find Diabetes Connections. Up next Tell me something good with a very devoted diabetes dad. But first diabetes Connections is brought to you by Gvoke Hypopen. Almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. And that's where the Gvoke Hypopen comes in. It is the first auto injector to treat very low blood sugar. Gvoke Hypopen is pre mixed and ready to go with no visible needle. That means it's easy to use in usability studies 99% of people were able to give Gvoke correctly. I am so glad to have something new find More go to Diabetes connections.com and click on the G voke e shouldn't be used in patients with pheochromocytoma or insulinoma. Visit gvokeglucagon.com slash risk. In Tell me something good This week I want to share with you this story. This is so adorable. I found this on Facebook and I think it do need to see the photo. So I'll link that up in the group as well. But I will describe it the best that I can. Let me read the caption first from Andrea and she says yesterday we went to Mayci's endocrinology office for our first of three pump training classes. Mayci was given the opportunity to put a trial failing pump on to get the feel of it and become used to it. She was a bit afraid and apprehensive at first. Now looking at this photo, I want to say Mayci is maybe three, maybe four. She is a preschooler, I know that much. And the pump that they're talking about is the Omni pod here. Andrea goes on to say, Daddy stepped up and volunteer to also get a trial sailing pump. He's not type one to help support and show me see it is no big deal. And this is the cutest photo of the dad right next to me see, and they're both showing off Omnipod on their arm. And she looks a little nervous. Still, you know, preschoolers are doing that smile, and they're a little nervous. But then it's got to be great to have her dad next to her doing that. Kudos. I think by the time this photo has posted the time has gone by maybe two weeks, and she may have already been live with the Omni pond pump. And I hope things are working out great. I tell the story in my book, the world's worst diabetes mom. But one of the things that made me the world's worst diabetes mom is that I never tried on any of the technology. I never, you know, I never tried to make Vinny feel less alone. It sounds terrible when I put it that way. But I never put on a pump instead, I never put on Dexcom several reasons why. First of all, we're so lucky Benny has been surrounded by friends with diabetes, since he was diagnosed. No, we didn't have anybody close to us. We didn't have any people in our town or our school until at the end of first grade. And he was diagnosed at two. But we didn't know people through jdrf. And we didn't know people that we could hang out with and see one of my best friends started a little diet buddies thing for little kids. So we always knew people who had the same tech on that he had. And the other reason I never did it is because I was so afraid that if it hurt me that I would never be able to put it on Benny again. And that's true. I was terrified that if a pump in set hurt or a shot hurt or late by the time I had Dexcom he was he was nine years old, it didn't really matter anymore. But if that hurt, I had hardened my heart in the way that you do in this terrible way that you have to do when you are doing medical things necessary things to your child. And boy that sounds so dramatic when I put it that way but I think a lot of you understand what I mean. And we had caregivers who did it for themselves just because they wanted to experience it and said oh it's no big deal. It'll be fine. I was never sure it would be no big deal. Is that interesting how we as parents do things so differently? But back to this fabulous dad if you have a Tell me something good story, you can always email me Stacey at Diabetes connections.com or just drop it in the Facebook group I every so often, and they are always such great story. So thank you so much. quick look at innovations this week a segment I added this year Sensionic holdings which is the company behind the eversense implantable CGM, they have announced they are filing for a supplement application to extend the wearable life to 180 days. What does that mean? It means Hey, the FDA is now considering letting the eversense CGM system expand 280 days in the US that is quick math six months. And that is up from the three months that it is currently allowed for, you probably haven't heard too much about ever since recently. And that's because honestly earlier this year, wasn't clear that they were going to make it with COVID. Everything else that had happened, it really seemed like the future of the company was in doubt. But they cut a deal with asensia diabetes care, which used to be part of Bayer diabetes. So very, very big company here, which I think is a good move for the ever since we've looked into it because with many wrestling and who knows what will happen with wrestling with COVID. But workouts are starting again pretty soon as I can't imagine they're doing actual wrestling. I'm guessing this is more just fitness workouts. But wrestling is a really tough sport for diabetes technology as you can imagine, because everything's fair game, so somebody could put their hands pretty much on you almost anywhere that you could put a Dexcom or a pump in set. So we've got a lot of great advice from people who've been there. And we've got lots of good methods but we are looking into ever since as a possible backup plan. It's weird to think about because you know, full disclosure here you know, we use the Tandem X to with control IQ which means we need the Dexcom G6 right now. So that kid could have the ever since under his skin and then the Dexcom has Well, not during wrestling season, I don't know what we're going to do. But as always, I will keep you posted on that. But if you have any news for innovations, and that does not have to be a big technology news story, it can be your hack your tip your trick for diabetes, please let me know as well. I said a couple of weeks ago, this was going to be a very busy time in terms of news stories in the diabetes community always seems like fall has a lot going on. And that is definitely the case. podcasting is really hard for breaking news. But I do my best when something happens to kind of go more in depth and give you a perspective on it by talking to the actual players involved. So I hope you're in the Facebook group or follow me on social media, because that really is the best way to stay on top of what we're doing here. I don't mean to be cagey. But in terms of the timing of the podcast, there are a few things that I have that I've taped that I hope to release in the next two weeks. And as I'm talking to you here, as I'm taping this episode, I've got like three different news stories that I'm working on that I don't know, maybe they'll be old news by next week. So got to do the best we can with the weird time shiftiness of podcast, or maybe someday somebody will pay me to do a daily diabetes news show. If that's you, let me know. Ah, thank you, as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself. Benny 46:28 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged
It's been a busy fall already for Medtronic; they've acquired Companion Medical and the FDA approved their 770G pump. Stacey catches up with Diabetes Group President Sean Salmon to talk about that and much more. Find out the difference between the 770G and the upcoming 780G, their plans for longer-wear pump insets and when they might have a no-calibration sensor. In Innovations this week, a new study showing the benefits of once a week basal insulin. It's called Insulin Icodec. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's new book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke hypopen, the first remixed autoinjector for very low blood sugar, and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:21 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:27 This week, catching up with Medtronic, we're talking about the newly approved 770 G, looking ahead to the 780 G, their acquisition of In Pen and how they think they've cracked the code on longer where pump in sets, Sean Salmon 0:42 the things that are in insulin to keep it from going bad. The preservatives, if you will, are behind a lot of that sort of site actions that you get. So we're able to take that stuff out and have just filtered Insulet. a queue will deliver to the site. That's really the magic behind getting the extension of use. Stacey Simms 1:00 That's Sean Salmon. He heads up Medtronic diabetes group. In innovations this week, a once a week basal insulin, how would that even work? This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I am so glad to have you if you are new welcome. Glad you found us We aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed right before he turned to back in 2006. And we have his high school sophomore 504 meeting this week. Yeah, it's virtual. His whole school is virtual. I've shared on the show before he is part of a very large school district in the Charlotte, North Carolina area. And the whole district has been virtual. younger kids are starting to go back to school in October. They're staggering it right now High School won't go back in person until January at least that's the plan. So I'm really interested to see how they handle this 504 meeting. He's had one, you know, we've been diagnosed since he was two. So he's always had one. In our district. We have a separate DMMP a diabetes medical management plan that covers a lot of the basics that are maybe in your your child's 504, but I assume this will focus on testing. I don't know. I mean, he's home. So you know, he can go to the bathroom when he wants he can drink water when he wants. I'll share more about that though. Mostly, I think this is about keeping our place in the 504 for things like the ACT and the PSAT and all that testing and he is so thrilled, but it's going to be coming up. Another thing I want to tell you about real quick is Hey, in September, we saw a big boost of sales of the audio book of the world's worst diabetes Mom, you know, this is my book, it's part memoir, part advice, stories, real life stories about raising a child with type 1 diabetes. And the audible version has been very popular. And I'm telling you September, I don't know maybe end of summer and everyone decided to get an audiobook, but audible loves when that happens. And now I have two free copies to give away, you do not need to have an audible account, you don't even need to really start one here, you're not going to be signing up for something you can't get out of you do need an Amazon account. So if you want the copy, I'm not doing a fancy contest on social media, I probably should. But all you have to do email me Stacey at Diabetes connections.com put audio book in the subject line and I will give you the first two people who do so a free book will make it very simple there. If you're interested in perhaps the paperback or the ebook, you can head on over to Diabetes connections.com or it's on Amazon, whatever is easiest for you. One more thing and it's an apology. Last week I apparently mixed up when I was talking about Medtronic 770 and 780 G. We do clarify that in the interview here with Sean Salmon. But to be clear, the 770 g was recently approved in the US. It is basically the same as the 670 g except for the addition of Bluetooth connectivity for data sharing and remote monitoring. And as you will hear, you'll be able to update the 770 G and future Medtronic pumps at home just like your phone. Alright, Sean Salmon. With that and a bunch more we go down a laundry list, but first diabetes Connections is brought to you by One Drop, and I spoke to the people at One Drop, I was really impressed at how much they get diabetes. And it makes sense when you think about it. Their CEO, Jeff was diagnosed with type one as an adult. One Drop is for people with diabetes by people with diabetes, and the people at One Drop work relentlessly to remove all barriers between you and the care you need. Get 24 seven coaching support in your app and unlimited supplies deliver no prescriptions or insurance required. Their beautiful sleek meter fits in perfectly with the rest of your life. They'll also send you test strips with a strip plan that actually makes sense for how much you actually check One Drop diabetes care delivered. learn more, go to Diabetes connections.com and click on the One Drop logo. My guest this week is Medtronic Executive Vice President and President for the diabetes group, Sean Salmon. And we spoke just as the deal for Medtronic to buy companion medical makers of the In Pen was closing. So that is a done deal. Now, In Pen is a smart insulin pen, you're probably familiar with it, it keeps track of dosing and recommended dosing, sort of like what you'd get with an insulin pump, you still have to inject, but the dosing can be automatic, the app will tell you exactly what to do. And keep track just like an insulin pump does as well. We talk about that. And a lot more here. Here's my talk with Sean Salmon. Sean, thank you so much for joining me. There's a lot going on at Medtronic these days, I appreciate you spending some time with me and my listeners. Sean Salmon 5:44 That's my pleasure. I appreciate the opportunity. Thanks, Stacey. Stacey Simms 5:46 We're gonna go down pretty much a laundry list of technology and questions from listeners and things that they want to know. But let me start slow. And just ask you, how are you feeling about everything these days, we've got delays because of COVID. We've got, you know, a year like no other it's a cliche at this point. But you know, in your own words, how are things these days at Medtronic, and in terms of, you know, what you're looking at going forward? Sean Salmon 6:09 Well, it's interesting, right? I think we're all living through some unprecedented times, just everywhere in the world right now. And it's certainly challenging. But at the same time across Medtronic, you know, I think we've got such a rich pipeline, and just about every single business, it's, it's exciting to see what you know, what the future is gonna bring, we get past some of these near term challenges. I've been here for 17 years, I can't remember a time where we had so much innovation all stacked up, ready to go Stacey Simms 6:34 Well, let's jump in and talk about it. One of the first things I want to ask you about is the acquisition of companion medical. And this is the startup they've got the in pen. This is the I think my listeners are very familiar with it. And we've done episodes on it. So tell me a little bit about what the plan is, for companions in pen product with Medtronic, what are you gonna do with it? Sean Salmon 6:59 Yeah, sure. Well, maybe I'll start out with, you know, why did we decide this was a good idea? And yes, I came into this role. Yeah, you whenever you start a new job, it's been about a year from now, the first thing you do is you formulate a strategy of how are you going to serve your patients in the market? And it's really, you know, strategy is really a question of, what are you providing for who, when you start asking those questions, it really narrows down what your focus should be in, and didn't take that long to sort of Peel apart? What is it that are people living with diabetes are seeking and how are they? How are they being treated today. And if you look around the world, it depends on the country you're in. But multiple daily injections is the most frequently chosen therapy, it's something that ranges between 60 and 90% of the treatments that are out there. So you know, really the philosophy app is that for us to know, what are provided for whom we need to know, you know, where do people where are they on their journey? And where do they want to go. So, you know, injection in and of itself is a fine therapy. But there's just really variable outcomes that patients are being able to get from that. And a lot actually about just the, it's made difficult by the fact that you really don't always know how vigilant you are, how much insulin you've taken, how much you have on board. And it's very hard to keep track of all that. And what companion has done with the implant system, of course, is to track that insulin, so you know exactly how much is given at the right amount of time and have some estimation for carbohydrates, the ability to load that up. And then of course, the CGM data is there. So when you have those components, a lot of that difficult math calculation about how much insulin Do I need to take at a given time is made simpler. And we can extend that by adding a lot of what we have within our automated insulin delivery systems, algorithms, personalization of those algorithms into that experience with a pen. So if you will, we're trying to close that open loop, or at least close it down some and what we do with automated insulin delivery systems as we have this track record, right, have you just recording CGM data over time, and knowing what the influent amount is, you can really get to an understanding of how individuals kind of respond to insulin, and more personalized, the amount of dosing that happens. So get an even tighter connection to how much insulin someone needs to take at a given point of time. Of course, on meal handling, that's the place, we're really pushing a lot of our technology, we have a very large and capable group that does data science and artificial intelligence. And all that really means is that we're able to take large data sets, and then put them into actionable insights that really simplify how people can get better control without having to do anything. And one of the really interesting areas we're investing in right now is around meal handling. So we can with our technology have a really good sense of when you're going to eat. And we can confirm that some gesture control technologies that come from a wearable like a Fitbit, or an apple watch or something like that. That tell us can confirm that some is eating. So in that instance, you could, for example, remind people, there's been no bolus given that it's time to bolus. And if you miss just two boluses a week in a meal, that equates to about a half point increase on the A1C. So obviously, outcomes can be made better. But the important thing is that it's done in a sort of an invisible way or helpfully in the background way. We're not asking somebody to anymore, which I think is really the sort of driving principle behind what companion medical set out to do within pen spec, this least burdensome as possible? Well, we can add a lot of technology that isn't visible to the user, for the most part, but can really drive a better experience and better outcomes. So what we're trying to do with a closed loop we can bring to this open loops, I said, and that's really, I think how the two fit together can help it a lot of ways. Stacey Simms 10:58 A couple of questions about You just said you. You mentioned the gesture technology. That's Klue, right. You all acquired Klue this year. Sean Salmon 11:03 Yes, exactly. Stacey Simms Is that going to be part of a companion medical system? Sean Salmon Yes. So the idea is, we're going to have that for any means of insulin delivery, right. So it's the ability to detect that somebody is in the process of eating. And the absence of any kind of bolus is a great opportunity to say here, let me give you a helpful tip here and remind you to bowls, whether you're pushing a button on your pump, or you're, you're reminding yourself to bolus we can drive some improvement there. And it was evaluated in a recent study that we did. It's a small study. But we showed that we could fact drop a one suit by a fairly sizable amount just by bolus reminder. Now, ultimately, I think we can use Klue and that technology in a way that can actually automate the delivery of bolus so nobody has to do anything within a sort of closed loop system. But you know, that's, that's some more work than where, or whatever to do it. Absolutely. It's Stacey Simms 11:53 you heard me laugh, because, you know, just by bolus reminder, parents around the world have children with Type One Diabetes would argue with you that a simple bolus reminder in the form of a parent does not make that much of a difference. Yeah. But I hear you, I Sean Salmon 12:07 think it Yeah, I mean, the difference here is the bolus reminders, and just it's time to bolus what we can do. Knowing the history of how much insulin is on board. Get a quick estimation is the medium small, large amount of carbohydrates being consumed, we can tell you how much to bolus not just that you need the bolts, right? which we think is a helpful insight. Stacey Simms 12:28 When you talk about Klue. It also makes me laugh as you listen. As I talked about Klue, we did an episode with them in the past if you'd like to learn more, and Sean , I laugh because every time I talk about Klue I do the gesture of eating food. I don't you can't see me but every time I mentioned it, I think that's because that's how it was explained to me when they first demonstrated it. It's a really interesting technology. But that'll be in not just pens, you're planning on using that in pumps as well. Sean Salmon 12:53 Yeah, so you know, Klue actually runs on on a wearable. And then it talks to the algorithm that's either you know, on your phone for your pen, or can be the algorithm that's driving the automated insulin delivery system. So think of it like a sensor, and the sensor gives input so that the algorithm knows what's happening. And it lends itself to any means of insulin delivery. Stacey Simms 13:15 One of the big concerns and you know this when a large company buys or acquires a small company or product the big concern is that you know, it'll be shelved or there will be big changes to make it more proprietary. The in pen is now used with Dexcom and the ever since implantable CGM. Can you reassure people who are using it right now that you're not going to change that I assume it'll be used with a with a Medtronic sensor, but will you continue with the sensors that it is integrated with right now? All right, right back to Sean answering that question. But first diabetes Connections is brought to you by Gvoke hypo pen, and almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary. That's where Gvoke hypo pen comes in. It's the first auto injector to treat very low blood sugar Gvokek Hypo pen is pre mixed and ready to go with no visible needle. That means it's easy to use in usability studies 99% of people were able to give Gvoke correctly. I'm so glad to have something new. Find out more go to Diabetes connections.com and click on the G voke logo. gvoke should not be used in patients with pheochromocytoma or insulinoma visit gvoke glucagon comm slash risk. Now back to Sean , talking about Medtronic plans to continue in Pen with its current partners. Sean Salmon 14:44 Yes, we have no plans to take away anybody's sensors from them. But we're not entirely in control of that. So if if sensionics and Dexcom plan to maintain that access and then we're game we want to make sure that people have the support they need Stacey Simms 15:00 When you say you’re not in control of it, you’re talking about what Dexcom and Eversense would do, you're not talking about something on your side. Sean Salmon 15:07 No. So the way all this works is you have to have, depending on what platform of phone you're dealing with, you have to have a thing called an API, which is basically a hook of software into the algorithm. So somebody on Sony decides they don't want to have that access to the longer they can turn it off. But we're not going to turn it off. We don't have control over that. So our belief is that, you know, if we're meeting patients where they are, and they're on a Sensionics device, we should maintain that access for those patients. Of course, we want to open up access to our own CGM. So we have a lot coming in the pipeline for CGM, which is pretty exciting. But no, I understand the sentiment that when you a large company buy something that they want to shelf it This isn't like big oil buying biofuel. Right now we're, we think we're gonna bring a lot better experienced to patients by combining the best of what companion has developed an impact with what we're endeavoring to do with things like Klue and neutrino and a lot of other personalization algorithms that be used in the closed loop side. Stacey Simms 16:08 So let's talk about sensors. Let's just pivot right to that first, though, before we let this whole thing go within any timeline and integration with the guide. assume it's with the Guardian, CGM. Sean Salmon 16:17 Yes, so initially, we'll have Guardian, but there's no we have three or four, five actually different generations of sensors coming and it's going to be compatible with everything we develop going forward as well. Stacey Simms 16:30 Let's talk about Guardian Connect. This is the standalone CGM doesn't need to be paired with an insulin pump. Tell me a little bit about the reception of that, what the plan is for it. And you know, Who is it for? Sean Salmon 16:41 Yes, so I think a standalone Guardian has been sort of an on ramp to be able to use an integrated CGM with our pump. But frankly, I think the experience that we've provided with that needs a lot of improvement. That's what we're endeavoring to fix with the pipeline. And there's two parts to that one is finger sticks, you know, to, to calibrate or to confirm before dosing as required finger sticks, and that's something that we are trying to remove in the next generation. And the other one is on just the, the ease of putting it on. And it takes a lot of overtaken steps to insert, and generates a lot of trash in the process. So all of that's problematic. And we're, we're moving to an integrated platform where the sensor, and the transmitter all in one, easy to apply three step, just press it on your body kind of approach. And in the interim, reducing or eliminating the need for finger sticks. That's what the near term pipelines about and then longer term, we can take the size of that down even further, we're already taking about 50% of the volume down from one move to next, we can get a lot smaller than that we have some really interesting technology that uses something called a wafer fabrication, which just means you can make very small electronics in a very highly repeatable way. So you take a lot of variation out. And then of course, you know, making sure that we're continuously improving the reliability and the wear life of these devices. There's a lot of technologies we have aimed at to to ensure that that happens. And simple things like we spend a lot of time money and effort developing patches is going to stay there, you know, the adhesive that won't interfere with the skin, but will stay there through very difficult conditions. And it took a lot of engineering, we actually did a lot of work in the fields in South Florida, just you know, high humid, very hot heat to make sure that we would have this he's up just right. So there's a lot going on in the CGM side of things. That's pretty intriguing. Stacey Simms 18:40 I'm curious, and this is a very specific question. These future generations, any plan to go straight from a CGM sensor to a watch, that's something that just seems to be very difficult, you know, no phone involved in between? Nothing like that. Sean Salmon 18:55 Yeah, no, it is difficult. And it's difficult for a lot of reasons, including power management of how that that Bluetooth connection is different than one to a phone. So I think as as watches evolve, and maybe that technology changes and the ability to kind of talk a lot of this on the kind of wearable side of things. It's not entirely just what can you do with your CGM, your algorithm said some, it is more complicated than you'd think, you know, hopping from phone to watch that takes the processing power and the connectivity that's already there. But think of it like a highway, right? There's like so many lanes have a highway that you can drive a car on. And if the watch is already tethered to one, one connection by Bluetooth to your phone, you've got fewer lanes available, other connections. So that's really, you know, it's I don't get too technical about it. But that's really the the near term challenge. But you know, I think there's strong interest in this. And as the wearables progress, I think we'll have the opportunity to to do things like that. But right now, it's just complicated. Stacey Simms 19:56 All right, let's talk 770 g This was approved by the FDA in August, and it's down to kids as young as two, my understanding was for the approval. Now I'm this is gonna pardon my take on this. And this is for all of the pump companies. I wish you guys would call your pumps, something that told us more about it. I don't know if it's a medical device thing, and I have this problem with Omnipod and Tandem and everybody else. But you know, it's all numbers. So tell us a little bit about what's different from the 770 g to the 670. And then to the 780. Like, right, what's different about this pump? Sean Salmon 20:33 Yeah, so the the biggest difference other than age education, which does, you know, it's still indicated for people over the age. I think there was some confusion at first said it's just for kids, and it's not Oh, kids. Yeah, so I, you know, I think that the biggest difference is really the inclusion of Bluetooth connectivity with this with this device. And that does a number of things. So first and foremost, it allows a person or a parent or caregiver to see the CGM pump date on a film. So we we've been lagging in that competency. Now that's available. It also allows the carelink system which is our management system glucose to automatically update so that you can do things like telehealth visits, right. Or if somebody's going to the doctor's office, rather than that, that kind of interruption to the workflow where the pump has to be connected and then downloaded, that really slows down that visit for for the person that's, you know, at the visit, it slows down the workflow for the health care providers. So the ability to take that connection and automatically upload it at your convenience without having to do anything, is what that connectivity brings to us as well. And then finally, it goes all the way to we can when software becomes available, make upgrades. Or if you have to patch something knows you know how to get out of your phone, where they'll have a new version to patch up something, you can just push that over the air. So we have that capability to upgrade future algorithms without having to connect anywhere. Stacey Simms 21:59 So just to be clear, this is like what we do with the Tandem X2, you plug it into the computer, you get the latest download, it changes the software in the pump, and then you're off and running. Same thing, plug it in, Sean Salmon 22:09 that was what one big difference, we'll plug into the computer, it goes over the air, just like you can update your unit up to your phone over the air today. If you changing your operating system, it's the same idea. You can do this without having to have a computer or having to plug cable in, Stacey Simms 22:24 do you need a doctor's prescription for changes? Or is that a change by change? I would assume there might be? Sean Salmon 22:30 Yeah, it depends on the change. So if you're talking about, you know, a security patch, you don't need a prescription for that, if you're talking about moving to the next algorithm, like the difference from 770 to 780 is really an algorithm change. It's the same hardware platform that would require a prescription. Stacey Simms 22:45 So let's talk about the 780 which is the I assume this is the next thing in the pipeline and following the numbers. Sean Salmon 22:52 Yes, so we we have released the adult data for the 780G, which at is about the algorithm now at the American Diabetes Association began this year virtually. And really, there's a couple of differences here. What this device does now is it takes the Ability Beyond just basal insulin, but also to bolus where you can the situation where there's rising glucose, the algorithm can bolus every five minutes to control. Somebody maybe missed a meal bolus, so they miscalculated how many carbs they ate, for example, and blood sugar still rising, we can predict where it's going to go both correct it without stacking up insulin. So what all that means is we can drive better time and range when there's there's missed boluses or miss calculations on carb counting. That's one big difference. The other big difference is the target that you set these two, so you can set a target, as you may know, on the 670 G, the target you can set is 120, we can still set a 120 target on this algorithm. But we can also set that target of 100. And the clinical results that we showed, were clear that you could take the target lower without increasing the risk of hypoglycemia. In fact, it was so numerically lower rate of hypoglycemia. So this, this algorithm, I think really gives a lot more freedom. And that's, I think the biggest thing that we were looking for all these are great, you know, time and range, we've been leading that the industry and being able to provide the best time and range, but the user experience got a lot better. And a lot of it had to do with alerts and alarms and all the things that we did. And I think To put it simply, there was a belief as the first hybrid closer algorithm out there, that whenever something goes awry, that you should kick somebody out of what was called auto mode and have them go confirm something with like a finger stick. Because I think the belief at the time was that you know, you can't trust his algorithms take care of somebody, and a person is better off better able to manage their diabetes than a machine. And I think that was probably a fallacy. As it turns out the algorithm that what we change here is we just aren't kicking people out. We are waking people up in the middle of night do things the algorithm pretty good at smoothing things out without causing any new troubles prevention. So a lot of that, I think out of abundance of caution safety alerts, kicking people out asking for fingerstick calibrations was unnecessary. And we're seeing a big reduction in all of that and very high satisfaction among the people in a clinical trial. And we've launched it in a limited way in Europe so far, and feedback has been really tremendous. This is a very big improvement of what we had been offering a couple Stacey Simms 25:25 of just questions for clarity, Sean , the you're talking about the algorithm in the 780? Right, the 770? Sean Salmon 25:32 Yes, that? No, that's 770 is basically the 670 algorithm. The big difference is really that indication of age, as well as the the ability to upgrade Stacey Simms 25:44 software. If you want a pump right now that you can then upgrade when the new 780 algorithm is available. It's got to be the 770 you can't upgrade. Yes, Sean Salmon 25:54 yes, you're correct. Okay. Stacey Simms 25:56 Um, to that end, just again, just to clarify, are there other ranges you can set? Is it totally customizable down to 100? Or is it 120, or 100. Sean Salmon 26:06 So you can choose, you can choose either target, but you can adjust other settings like the part ratio like insulin sensitivity factor. So there's some customization that can get there. And we ran, I think, three clinical trials. And we're currently doing what we call a continued access study in the US where we're trying to optimize those settings, to make sure that we can get the very best experience for people with the pump. And I think what we've learned is there's a lot of these other settings that we can give more help to the endocrinologists to be able to set those but right now, those settings are, are the endocrinologist job to go fix, we can give them suggestions. But the user themselves can't make those adjustments as easily. Stacey Simms 26:46 Wait, I'm confused. The endo can make some changes, but the users can't. Sean Salmon 26:50 Yeah, so there's certain things again, it's about making sure that people are safe, where we could recommend changes, or the algorithms can change things along the way. But there are certain settings like these carb ratios and everything else that need to be dialed in. Yeah, but Stacey Simms 27:03 the user can do that. Right. I don't have to bring the pump to my endocrinologist and say, I Well, Sean Salmon 27:07 they can, but they should they should make sure that you're talking to Stacey Simms 27:11 Got it, yes, no, no with it with the guidance of an endocrinologist, but you're not going to make me get a prescription to change my carb ratio. Sean Salmon 27:17 No, no, no, I think it's just that we can really fine tune the system. But rather than experimenting on yourself, I think we can give some help to know what are the optimal settings for you. And that's know something we call personalized closed loop is, we could do that automatically in the background without anybody talking to anybody. That's one of our future pipeline projects, we can also tell you from the history of your glucose and insulin data, how you can get a little bit better precision for somebody. And I think that's what we're trying to do on the carelink side of things. Here's the ability to really dial this in the right way. I think that for some endocrinologist, that's not going to be helpful, right? They're very, very good at this to do it all the time. And then there's others who don't really have large type one populations. And they could use a little bit of light called the teachers edition of the textbook, to help them make sure that they're doing the best for patients. Stacey Simms 28:08 I think that sounds wonderful. I just think, you know, this podcast audience is a little bit different, or I shouldn't, it's a lot different. This is an incredibly well educated audience that is going to get a pump like this, and mess around with it themselves at home and see how much they can change it. In fact, as you know, part of this audience is going to physically try to probably break into the pump and see what they can do with it. So I know you can comment on that you don't have to comment on it. But that's why my hackles went up when you said the endocrinologist can, but I get what you're saying for the vast majority of people with diabetes, the endocrinologist or even their general practitioner, which is different story altogether, is really going to be the guiding hand here. Just another question you mentioned with the 780. The change from, you know waking people up kicking out of auto mode, fewer calibrations, is that really in the works in terms of fewer or no calibrations or that's a hope for a future sensor? Sean Salmon 28:58 No, that's absolutely in the works for the sensors. So we we have a product in that's complete as clinical trial and other ones very close to doing that. That eliminates or vastly reduces fingerstick calibrations? And then yeah, so it depends on the regulatory claims that we make on that specific device. And then we have two others in the pipeline that absolutely eliminate finger sticks altogether. Now, that doesn't mean that you know, if you get a reading, it doesn't make sense to you that you shouldn't go confirm it, the glucose, the blood glucose, then calibrate No, no perfect sensor. But yeah, our algorithm itself that goes into 770 cuts down by about half the number of requests for finger sticks with the same sensor. And then when we change the sensor, we can, we can largely eliminate that unless there's something that needs to be confirmed, because the reading doesn't make sense. Stacey Simms 29:53 So is the hope that the 780G would launch with, I hate to compare it to Dexcom but let's just go ahead and do that. Cuz that's what we're all talking about here anyway, obviously, most people who use a Dexcom understand that it's not infallible, you do have to double check, sometimes, you know, you'll get a sensor error when it doesn't understand what the you know what it's getting the information that it's taking in, it'll stop working, that kind of thing. So is the hope to launch the 780G system with a sensor that's comparable to what I just described. Sean Salmon 30:20 So it's gonna depend on where you are in the world. But the 780 is going to be compatible with past and future sensors. So you know that they may be on different timelines. And we really try to think about this like it's a system to so we've got the pump, we've got the algorithm, we've got that sensor. And the other thing we have is the tubing set and reservoir. And there's another innovation we're bringing that allows you to extend the use of that on label of that tubing set from the typical two to three days. At the seven days. We call that the extended wear infusion said that's also known as clinical trial. And the goal is to have that also compatible then 780G algorithm. So the algorithm that's on that pump, which can have all that connectivity Vantage can work with this current and future pipeline of sensors, and be upgradeable on the infusion set is all sort of in a suite of what we're trying to bring together. Stacey Simms 31:14 Well, Boy, am I glad you brought that up. Because I have said for years, and my son has been using an insulin pump for I don't know, 13 years now that the inset is the weak link of pumping. And I know, you know, a couple years ago, we were all excited about the BD flow was supposed to be this the latest and greatest, it didn't work out so well. So that went away. Can you tell us a little bit about what you found? When I hear longer? Where insets? I think, Oh, my gosh, you know, we've all been warned about infection and scarring and don't use the same site for that long. What are you finding? Sean Salmon 31:47 No, it's a really good question. And you know, what is it that's so magical about it? How do you get to extend it? And without getting too much detail to the simple answer is that things that are in insulin to keep it from going bad, the preservatives, if you will, are behind a lot of that sort of site reactions that you get. So we're able to take that stuff out and have just filtered insulin if you will deliver to the site. And that's really the magic behind getting extension of abuse. And you know, we did a study where we, we measured this and about 80% of the study participants were able to get seven days your body is going to react a little differently being who you are. You see that with CGM, right? Some people can wear those things for two weeks, and other people can't. Because their body's more aggressive at attacking that foreign body response, just by comparison, for three days, which was our control arm 70% of people got to three days, right? So we've got a higher proportion of people able to make it seven days, we think it's largely due to getting out those preservatives that are the insulin to keep it fresh. Stacey Simms 32:50 That's fascinating. It's simple as a filter. I've always thought that yeah, Sean Salmon 32:54 it's not it's no, it's also your insulin is a very sensitive molecule too sensitive to temperatures, you know, and it's also sensitive to you know, how it's contained in the reservoir. So our rigid reservoir system doesn't like mechanically damage the molecule either. So that's, you know, an advantage that we've always had with our reservoir design, then you add to this, the ability to filter out the preservatives, and you get this extension to where so you can preserve a lot of insulin, use a little more judiciously, and of course produced it. You know, the difficulty of having to change your set every day. Maybe it's a fusion set Sunday, you change it once a week, and maybe same time of changing your your sensor as well. Who knows? Stacey Simms 33:34 Well, I think that would be pretty amazing to have a longer wear inset. That works. Because a lot of people have trouble as you said, getting to three days. Yes. One of the big questions that came up in with my listeners when I told them I was talking to you, and we've covered most of them. But one of the big questions came up was Medicare, in terms of this technology is great. Will it be covered? Can you speak to that at all? Sean Salmon 33:53 Which which part of Medicare you asked about? Are you asking about the Well, let's talk Yeah, more of a? Stacey Simms 33:59 Well, I think the real question is everything. But let's talk about the the system. As you mentioned, you talked about it as a system, the 780 will the system be covered? Or will it be piecemeal? Sean Salmon 34:09 Yeah. So the rules of Medicare are really around the designation of the sensor, can you make a claim of what's called non adjunctive, meaning that you know, you don't you don't have to confirm the CGM ruling before you dose insulin. So when you're 64 years old, and your pre medic quick care and you're on like a 670 g system today, your commercial insurance pays for the sensors, the tubing sets, the reservoirs, of course, did initial investment in the pump. When you turn 65 and you move to Medicare, you no longer can get the Guardian sensor paid for because we don't have that designation. For Non exempt. They've even though it's clearly driving the pump all day long every day. So we have to get that labeled claim for the sensors for everything to be covered. And that's what we're trying to do right now with the Guardian sensors and of course, the future pipelines. themselves. But like I think it's a, there's a couple different efforts on that. But it is a little bit of an idiosyncratic thing that that exists in Medicare itself, just the way the payment law works. And we're trying to get that changed, Stacey Simms 35:14 has COVID, delayed studies, submissions, things like that for you, while Sean Salmon 35:19 at the branch of the Food and Drug Administration that regulates diabetes face is also involved in a lot of things COVID related, including like the in vitro diagnostic testing, and that sort of stuff. So yes, I'd say on the medical reviewer side, in particular, there's been just a difficulty for them to service all the kind of pre market or new devices that are coming through while doing this difficult work of making sure that all the COVID tests and things related to that are done. So yeah, there's been something that has been a little bit challenging. And of course, in the clinical trial environment, we actually had a couple of trials going on during COVID. And some of them have gone pretty well. Honestly, I think people are stuck at home and not willing to participate the trial. It's not been like that. In other parts of Medtronic, we've got a lot of the hospital based studies have been very difficult and highly impacted by understandably, people's fear of going to a hospital for for anything right now is pretty high. So I'd say it's been a mix. Like we've had really good collaborative conversations with FDA making sure that we streamline and make it as simple as possible as we submit new dossiers. But there is really a constraint at that medical reviewer level that's been, you know, difficult for the entire industry. Stacey Simms 36:35 You've been so generous with your time. I really appreciate it. I just have one more question for you here. And that's about tide pool, about a year ago, maybe more now, Medtronic and tide pool announced that they'd be working together on a, you know, a future interoperable, closed loop. And it would be a separate system from the seven at any update on that. Sean Salmon 36:55 Yeah, we're worth continuing to work with tidepool. There's a joint steering committee that we participate in. Our goal here is to create a Ace designated pump that runs the tide pool algorithm. But yeah, that collaboration is ongoing. We're working well with them. But I don't really have an update on that. Stacey Simms 37:13 Well, Sean , I really appreciate it. There's so much going on. Do you know to talk about and thanks for keeping us straight with the numbers and everything else. I hope you come back on and you know, continue to explain all of these developments. But I really appreciate it. Sean , thank you so much for spending so much time with me for sure. Unknown Speaker 37:28 Thank you, Stacey. Announcer 37:35 You're listening to Diabetes Connections with Stacey Simms. Stacey Simms 37:41 We talked about a lot of stuff there. There is a lot more information as always over at Diabetes connections.com. You can learn more on the episode homepage about everything that Sean talked about. I'll link up some stuff to Medtronic into some other studies. I said a couple of weeks ago, there's something about September, October. It's like all summer long. Yeah, we have the ADA and we have the different conferences. But then every year at this time, I feel like oh, it's kind of slow, nothing's happening. And then I get all the tech companies in the fall. So I'm excited to continue to bring you as much information as I can. I have more interviews coming up. We just talked to Dexcom. I'll also be talking to Abbott. I'd love to get Omni pod that folks from Insulet back on here. So we'll we'll see what we can do. But in the weeks to come. definitely let me know if there's particular technology you want to hear more about. I love talking to these companies. It's always fun to get a kind of a peek under the hood. And I like hearing the voices and the stories of the people who are in charge of this stuff. I appreciate them coming on not everybody does you know that but it's great when they can answer your questions. And I love doing that. So let me know if you want to hear from and let me know what you want to know. All right innovations in just a moment with that once a week basal insulin that's being tested. We'll we'll talk about that. But first diabetes Connections is brought to you by Dexcom. And when you have a toddler diagnosed with type one, you hear rumblings for a long time about the teen years when it hit us full force a little early. I was so glad we had Dexcom you know Benny's insulin needs. I've shared this. They started going way up around age 11. And when I say way up, I know some of you parents out there with little ones think maybe we increased by point two or something like that, because I remember those days Benny's first basal rate was 0.025. That's how much basically got an hour. But by the time between ages 10 and 12, his basal rates doubled. And between 12 and 13, they doubled again. So along with the hormone swings, I really can't imagine managing diabetes during this crazy time. Without the Dexcom continuous glucose monitoring system. We can react more quickly to highs and lows. see trends adjust insulin doses with advice from our endocrinologist. I know using the Dexcom g six has helped improve Benny's A1C and overall health. And by the way, he's almost 16 and those insulin needs have already started going down. This is wild. If your glucose alerts and readings from the G six do not match symptoms or expectations. Use a blood glucose meter To make diabetes treatment decisions to learn more, just go to Diabetes connections.com and click on the Dexcom logo. Innovations this week, a once weekly, basal insulin. This is something that was announced earlier this summer. I don't know about you, but it's snuck by me It was announced at the ADA Scientific Sessions, Novo Nordisk announced that a once weekly insulin Icodec had performed as well as Lantus in a 26 week trial. Now, this particular study was done with people with type two diabetes. But before you dismiss it, there has already been a trial of people with type one diabetes, and novo expects to submit and get this and hopefully FDA approved for people with type one and type two diabetes, I couldn't find a lot of information about the previous trial with type one, there is another one that completed over the summer, hopefully, they'll release the information on that maybe some of you who are more savvy in the ways of clinical trials can dig it up the Can you imagine once a week basal insulin, I mean, obviously, the benefits of that would be incredible. And also thinking about it for people who like to go untethered using basal insulin from an injection along with an insulin pump, which is something we did for two years. And even with control iq and you know, more advanced hybrid closed loops. Just talking to Medtronic about there's, I know a few people who like to use untethered with it, who find that there's just something about getting that always constant, steady, basal insulin smooths everything out. And certainly when you get into the enormous elephant doses that Benny was taking for a while, it helped tremendously to take that load off of the pump. I mean, between his weight loss and you come in at a puberty and I know he loves when I talk about this stuff, his insulin needs have come down incredibly, and certainly to the point where we didn't need to stay on untethered, but I think it's fantastic, it's a great option to have and once a week, basal insulin makes that a lot better. So I will keep you posted if I find out more about the type one trial, but is called insulin Icadec. If you have something for innovations, please let me know this can be a hack that you thought up a tip or trick something with technology or new influence. You can always email me Stacey at Diabetes connections.com. I mentioned Benny's 504 Review earlier in the show. And that happens later this week. He's also got an endo appointment this week. lots going on. I don't think the endo appointments going to be too exciting, hopefully. But you know, we do check in every quarter. And I think to mix it up, my husband is going to take him this time. Slade rarely goes to the endo usually because he's working in busy and and it's been on me for the last couple of years, which I love to do. I really like catching up with our endocrinologist who's become a friend. But I think I'll let the boys go. And gosh, you know, another reason not to go. I'm looking at making sure my door is closed. So Benny can't hear me. You know, the kid has this permit, and he's gonna be getting his driver's license if he passes in January. And I know Slade will let him drive to Charlotte, which is like a 40 minute drive. So he can do that. I don't need that stress of sitting in the front seat and putting the mom's seat belt right throwing my arm out, which I cannot believe I do. But I've done it with both of my kids. Oh, I remember my mother doing that clear as day. I don't even know if they're doing driving tests here. They haven't been. I know plenty of kids who got their licenses this year, because of COVID. They're not actually giving them a driving test. They're just saying, oh, did you do your hours? Alright, here's your license. And it's a graduated system here in North Carolina. So they can't get their afternoons they can't drive at night until they take an actual driving test. I don't mind goodness. All right. So let's keep you posted and updated on next week. We'll see how much he lets me share. Thank you so much to my editor John Bukenas from audio editing solutions. Thank you so much for listening. Don't forget if you want the free audio book, email me Stacey at Diabetes connections.com subject line audio book, and the first two will get that promo code. Thanks so much for listening. I'll see you back here next week. Until then, be kind to yourself. Benny 44:03 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged
Dexcom's CEO Kevin Sayer checks in with Stacey to answer your questions. He talks about their new pharmacy benefit for Veterans and why Dexcom would love to move everyone off of durable medical. Plus, a follow up on their hospital program we first discussed this spring, adhesive issues with the G6 and looking ahead to the G7. Stacey also takes some time to talk about the interview process & which companies we feature on this show. There is a video of this interview - you can watch it here. Check out Stacey's new book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription (Note: straight from the computer! No human has corrected this yet. Check back in 24-48 hours for a cleaner transcription) Stacey Simms 0:00 Diabetes Connections is brought to you by one drop created for people with diabetes by people who have diabetes by evoke hypo pen, the first premixed autoinjector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:21 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:27 Welcome to a bonus episode of Diabetes Connections. I'm so glad to have you along for this. When we talk to the technology companies, especially Dexcom, we get a whole bunch of new listeners. So if this is your first episode, welcome, we aim to educate and inspire about type 1 diabetes by sharing stories of connection. Week after week, I talked to lots of people in the community sharing stories from athletes and celebrities and tech companies and regular people just living with diabetes. My son lives with type one. He was diagnosed almost 14 years ago when he was a toddler. And we've been doing the show for more than five years now usually release episodes on a weekly basis, we throw in some bonus episodes when the time is right. And this is one of those times Dexcom had some interesting information to share. So I jumped on zoom with the CEO with Kevin Sayer. We talked about the new pharmacy benefit for the Veterans Administration. A follow up on their hospital program we first discussed this past spring, I answered your questions about adhesive changes for the G six. And looking ahead to the G seven. I'm going to come back at the end and do some inside baseball stuff about the interview process. And about which companies I feature on the show why we feature them when we talk to them? What kind of questions I asked that sort of thing. I got some good questions about that in the Facebook group that I would really like to address. So I will do that at the end. As you heard just a moment ago. Dexcom is a sponsor of the show. As longtime listeners know I say this every time we talk to a sponsor, but it's really important to get this out there. I do not allow sponsors to dictate the content. So they will not tell me what to say during an interview. They will not ask me to edit that's not part of the deal. They are a sponsor. We believe in them, they get a commercial, we like the product. It doesn't mean we don't ask questions. And we probably speak to Dexcom the most frequently. But I like to point this out every time we talk to sorry if you get tired of hearing it. But those disclosures are really important. You should also know there is a video version of this interview was a zoom interview, we taped it, it's on our YouTube channel Diabetes Connections, and I shared it on social as well. Toward the end, my son Benny stops by and we make reference to some appearance issues. All you really need to know if you don't want to watch it you just want to listen here is that his hair is now dyed. It's this crazy bleached blonde, and he's wearing a giant purple Snuggie. He makes quite the impression. All right, let us get to what is important here. And here is my interview with Dexcom Kevin Sayer, different kind of way to tape an episode of Diabetes Connections, but we're going to give it a try. And joining me is the CEO of Dexcom, Kevin Sayer. Kevin, thanks for doing this. I appreciate it. Kevin Sayer 3:01 Oh, you're welcome, Stacey, good to talk to you again. Stacey Simms 3:04 So normally this time of year, you'd be in Europe for a SDXC. That conferences is happening. But virtually, Kevin Sayer 3:11 it was happening virtually. It's not quite the same. But I get notes from everybody who's listening to the presentations, gathering papers to find out what went on during the day. So are what we're trying, everybody's trying to do different things. Stacey Simms 3:25 Well, I have a laundry list as usual to go through what is Dexcom presenting anything at this conference, because there are a few Unknown Speaker 3:31 papers, supporting the strength of CGM and treating diabetes. Some of the results in the type two studies that have happened recently and some of the results and some of the studies with the senior community and things like that. Nothing earth shattering, but again, all supporting CGM and how well it works and helping people take care of their diabetes. So you know, a good show for us. Just typical. Stacey Simms 3:56 Well, we've got a lot to cover just today as our speaking and news release came out about a new agreement with University of Virginia. And this is for as you're watching or listening University of Virginia as a bit of a history with Dexcom in terms of the place where type zero was developed. So what is this agreement all about? Unknown Speaker 4:17 Well, and you're correct, yeah, we've had a relationship with the various teams in Charlottesville for quite some time, the type zero group that we actually acquired in 2018, or the algorithm for the control IQ system, and then control steady resided, we felt that was a tremendous asset predicts him going forward, not only in developing automated insulin delivery technology, but possibly for developing decision support tools. For those who don't want an automated insulin delivery system over time. In conjunction with that acquisition. You've got also always really smart people to still stay at University of Virginia and do Diabetes Research and they're very access to clinical trials, clinical networks, all the other things they've done. We've had an informal relationship with them for a long time and we discuss could you guys help us with this or that and as our companies became more mature, and they got more involved in diabetes research that we felt was important to fund the things we were asking for, and give them an opportunity to do some good work on our behalf. So over the next five years, we'll target some leading edge new diabetes research project and use those brilliant minds. So we're gonna be avidex calm ultimately, on behalf of our patients, is there anything specific that you can tell us that they're gonna first, you know, we have current generation, automated and some delivery algorithms out there will certainly work on next generations, and ones that will just fine tune what we've already learned and, and do better. On top of that, I think you'll see us work for decision support, like I spoke about earlier, what tools can we offer somebody that is treating their diabetes and using insulin that are meaningful, and not getting in a way all the time? So what constructive? Can we do there and predict now that we have all this data from all of our patients, because the data has been uploaded from the phone, we think that analytics capabilities of the team at UVA can certainly go through this and find a lot of things that could be helpful for us to offer to our patients. And you know, as we look at even over time, they develop simulators and all sorts of things and looking at diabetes data that we think it'd be applicable for the future with respect to working in the hospital, or gestational diabetes, even the type two non insulin take taking patients. So now that we signed this agreement, it's up to us and VBA team at the type zero team to figure out and say, Okay, here's the things we want to work on. And we're we're just excited to have the agreement in place. Stacey Simms 6:39 For people who are hearing things like we have all the data from the phones for the first time you and I've talked about this before. But can you talk a little bit about dex comms use of data. In other words, you know, My son has used Dexcom for seven years now. So you guys know everything about him. But you don't really know about him? Well, blinded, right? Unknown Speaker 6:57 We know that they're from transmitter 1765 G, here's the glucose signals that we received. And you can look at what is going on with your son. And we actually have data regarding how it performs as well to come to the app so we can service it. And we can use that information to make our product better. But we don't share anything with anybody without a patient opting in and saying, I would like to share my data with x, or I would like to share my data with the Southern Company. There's no data sharing, there's it's absolutely kept very confidential. we comply with all HIPAA requirements and keep things very buttoned up. Stacey Simms 7:34 All right, again, like I said, there's a laundry list here. So the next thing I wanted to ask you about, and this is wonderful news for veterans that Dexcom g six available at VA pharmacies, at no cost, it will, it's covered by the VA Unknown Speaker 7:47 covered by the VA. You know, in the past, as many of your listeners and followers know, we've been trying to move away from durable medical equipment. As far as the coverage vehicle for our product, one of the things has been one of our biggest roadblocks is getting access to this product where people can get it easily and affordably. And within their normal course of their work. Rather than filling out a bunch of paperwork and having a bunch of Doctor notes and medical records and blood glucose logs and everything. And this coverage by the VA is going to make it accessible to veterans as long as they are on intensive insulin therapy type one and type two diabetes as a Pharmacy Benefits. So they would pick it up where they would typically pick up their drugs and and no copay. So this is a wonderful improvement for a group that really is troubled with diabetes, I think there's something like four times more incidence of diabetes in this group than the general population. So we really believe we can have a good impact here for this group of patients. Stacey Simms 8:46 You know, again, I hate to ask stuff about our personal experience, because it isn't applicable to everybody. But I will say when our insurance switch to pharmacy for Tech's comm It is so much easier for whatever reason than going through Durable Medical, I don't know if it's the billing or just they're more efficient. I am now on a new insurance and in fact a durable medical so I'm not Yeah, thanks a lot. I got spoiled for a long time. But is is that the idea then to try to switch as many people as possible and as many insurers as possible to pharmacy and then my guess my question would be well, why? What's it for you guys? Unknown Speaker 9:20 Why is it good? for us is it's easier if we are going to have this therapy be used by all as one users and then later even type two knives when using patients. One of the keys is making it accessible and to meet patients where they are. It is not during the normal course of operations for anybody to go through the durable medical equipment process not only the patients but their caregivers. You know, endocrinologists are used to working with all the paperwork associated with durable medical equipment. While it's a hassle they understand it. Many people with diabetes using insulin don't see endocrinologist and in fact A good friend of my wife's she knew from childhood came and stopped by business not long ago. He's a year younger than me. He has type two diabetes, he went to his doctor and he said, I I'd like index calm, I can do really well with that. And his doctors and internist general practitioner, he goes, Yeah, I've heard the paperwork on that softball, I'm not going to do it. And that was the answer that he got. And that's not a good answer ever. So the easier we can make it on everybody in the network, then the easier it is for patients to be compliant and easier to get patients on a system. And so we pushed very hard we have over 65% of lives in the US, covered lives and commercial insurance can go to the pharmacy now, but not all of them do. Most insurers insist that we have dual past durable medical equipment and the pharmacy but the most of our new patients and the majority of the new patients going on to Dexcom now are going through that channel. So we made a lot of progress. Would the advice be as people are watching or listening to if you are currently Durable Medical, call your insurer and see if it has changed. Or you can even call Dexcom or even call your insurance? See, we went again, when we get a new patient into our system, we try and determine if it's pharmacy. First, we try to determine where they can go and give them the path of least resistance to get their sensors, transmitters and everything else. So we do run a benefits check oftentimes for new patients, but not for the existing ones. They're buying product. Stacey Simms 11:30 Well, I just went through that whole process. I won't bore you with the details. We have limited time. Unknown Speaker 11:35 I'm sorry. Stacey Simms 11:36 Thank you very much. I appreciate it. Your condolences are welcome. But it leads me we were talking about the VA and G six. This is a question you know, I'm going to jump to my listeners. We have lots of questions. And one that came up everyone of course is especially our listeners are so well educated, they're so up technically on everything. They're already waiting for the g7. I'm not even sure they want me to ask you about the G six anymore. But the question that came up, and I think it applies to the VA as well as will Medicare cover the G seven? Or should we anticipate issues with production? And all that that happened last time? Unknown Speaker 12:07 know that? You know what? That's a very fair question. So I don't feel at all beat up by that we, we got an approval on G six months sooner than we'd planned. We knew how much better it was in G five, we were planning on launching a system in the fall and instead lost it in the spring when we weren't ready. And we literally spent a year and a half trying to catch up. We have enough capacity now to build enough g sixes to handle what we need very comfortably. And the factory looks so different than it was before. I mean, everything is literally automated robotic arms put every single thing together. And off we go. We are building that same infrastructure with G seven long before its approval. And the equipment we bought for G six is not going to be applicable to jisa. So we're starting over. But we aren't getting automated lines up and running for G seven. Now we have equipment scheduled to come in over the course of the year. And in all fairness, we're not going to do that, again, we're not going to watch it for a group of people because we only have this much capacity, we're gonna when we go, we've got to be ready to roll the thing out, we will continue to produce the six because there will be use cases and geographies, then we won't flip to G seven immediately based upon our planning and our capacity, but we are going to we want to be ready to slip everything immediately. That's our goal. Right? Stacey Simms 13:24 So the you're not anticipating a production issue. But in terms of and again, I know it's complicated when you're working with CMS. And when you're working with the VA, there's no reason to expect that there would be issues with those groups. Nope. Separate Unknown Speaker 13:37 notion. We have been structuring our contracts in a matter whereby the G 67 conversion, the simple what was difficult in the past are the durable components, the transmitter and the receiver, which he said and there's no transmitter everything's in the sensor, so we don't have to deal with that much anymore. And, and yet receivers, we will continue to sell them but it's getting much simpler, the same rules will be applicable. So we do not believe there'll be a big problem going from one sensor to the other reimbursement wise. Stacey Simms 14:10 All right, so let's get to these questions. And some of these guys are very technical. So now I'm putting my classes. Okay. I know you can't I don't know if I want to get it right. Okay, so Chris wants to know, what about plans for integrating data with reporting systems their partners use, for example, I have CGM going to my pump and the Dexcom app. Tandem has released t Connect. And the only reason that he's using the Dexcom app right now is the clarity, goal tracker. Any any ideas about further integration with the T Connect especially because people are going to start using that from their phones maybe next year. Unknown Speaker 14:46 Yeah, we work with all of our partners, we were what we would like nothing more than to have all the data log into our clarity system to give patients that option. The the issue we have with it is we're all still Companies, you know, some companies believe this data is theirs, and they, they need it proprietarily it's been slow for us, quite honestly, to get data from all the other pump companies into our clarity system. We do have agreements in place where we're working on that we have that with Insulet. We're talking with Tandem about that. Now we're talking with other companies about it, we reciprocally are more than willing to give our data to be displayed into their app and their their education systems. So we do share data with those who want it we have API's to whereby they can pull the data and display it if the patient gives them permission. And our criteria for accepting companies to take the data is not extremely difficult. If we view the something our patients want and need. We absolutely let them pull it through through the API's. I think over time, you'll see us continue to share data and hopefully others will give us theirs. It isn't simple. Everybody has their own opinions. Stacey Simms 15:53 Well, and that's another question that I've received in the past was kind of the API. I may not even be using this correct verbiage here, well, they remain open. Because there are lots of people who've developed secondary apps, some are fun, some are very useful to people. And I know that there has been a lot about open source in the community Unknown Speaker 16:12 know our API interfaces are still there's a process one goes through to get that information. But by and large I there's a lot, I don't have a number 60. But I know it's certainly more than 50 could be over 100 companies who pull data from our API's into their system. And we have kept that relatively open and shared. Do I think you'll remain open? Yes? Will there be times when we say no? Sure. You always say no to something. So for example, if somebody says I want to dam the API, so I can compare you to all your competitors and say Dexcom isn't any good look at the other guys. giving you access to our API's, we don't we don't need that. We do view the data as the patients but we also view the infrastructure we build and the money we spent as investment we make for our shareholders. So it is a fine line to walk and we'll continue to look at it. Ultimately, we hope to have a live API and or whereby if you're running the Dexcom, Apple want the live data on your app, we can offer that option as well as certain partners. And you know, that's on fire with the FDA, we'd like to get approved relatively soon. So once that that's out there, we'll pick some companies and do it. But we also want it to be up to Dexcom standards. So don't we don't want to offer data to companies that are going to make horrible looking apps and great experience. We could tarnish our brand. So it's a balancing act. Stacey Simms 17:33 All right. I may regret this. And we may I may run out of time, we'll have to see. Do you have a question? No, you want to say hi, my son has come in. And I'm on headphones now. So if you want to say hi, for real, he's just beautifully dressed for the occasion in his smile. And you say hello, real quick. This is the CEO of Dexcom you're making a wonderful. Unknown Speaker 17:51 Hey, hey, how are you? I'm good. How are you? I'm fine. You got to ask me at least one question. Mmm hmm. Stacey Simms 18:00 Not the Dexcom since you were nine years old, really? No questions. Unknown Speaker 18:03 What's your favorite Dexcom story that you could share with me my favorite Dexcom story? Oh, my friend. And I were like messing around one time and we horseplay and he ripped the Dexcom off on accident but like just the the transmitter and like the the patch stayed on. So like the middle of it ripped off. But the the patch around it stayed on. And he freaked out and I like pretended to like die. Unknown Speaker 18:31 That's awesome. Oh, wonderful. Thank you for contributing. Hey, it's nice to see you. Nice to see you. Mom's actually pretty cool. My mom would never let me grow my hair like that. So I'm gonna give your mom Unknown Speaker 18:45 your mom, your cool. The CEO of Dexcom said you're cool mine. You have to use that. Stacey Simms 18:50 Yeah. Yeah. I think quarantines gotten all of us. But I love you, sweetheart. I didn't mean it. That's what happens when you have a kid who takes care of everything he's supposed to take care of you let him wear a purple dinosaur. noggin got his hair get crazy. You pick your battles. I appreciate that was very nice of you. Oh, see? We'll see if I don't cut any of it out. All right. Let me get back to the questions here. Unknown Speaker 19:12 All righty. Question about compression lows. Somebody asked me if they're if you are addressing this, I assume this will be as much of an issue with g7. But you know, you'll lean on it or we don't think that it will. That will be determined when we have more real world use than what we've had in clinical studies. Right now. We've got a number of of thoughts and technologies we're considering for compression. I can't give away all of it. But it is something we're working on addressing over time. Again, we have some ideas, I don't know that you can ever eliminate it because you're going to lean on it. And that's going to happen. We've looked at alternative platforms. We've looked at other technologies we've looked at longer insertion depth, shorter insertion depth, what is what are all these things do and some of the things that you think might fix it actually make it worse. So we'll look at it which Seven, you know, we are going to have an arm indication in addition to the abdomen with G seven running on both and for young children, the back of the box as well. So maybe there might be less patients on the arm for other patients, there might be more, but we we are looking at it, we do have some technology ideas that I won't give away, that might be able to fix it. So give us a little while and we'll see. Stacey Simms 20:21 I just curious when you do these things, please tell me that you've got guys in the lab like taking naps laying on it. You know, it's not just a robotic snowflake? Unknown Speaker 20:30 Absolutely do we actually make go away on it for half an hour? Let's see what happens. We we do that, particularly at our feasibility studies, go away on us and see what we learn. Stacey Simms 20:41 Tim wants to know, any plans for every minute data instead of just every five? Unknown Speaker 20:47 I guess my question with that, and we've looked at this for years, what problem are you solving? Unknown Speaker 20:53 is passing it along? Unknown Speaker 20:54 When my no I'm so I'm gonna ask you the question I asked my team. So I'm letting your friend Tim be are the guys that work with me here? What problem you're solving by reading every minute? Well, you are solving a major problem, we would do that. And we've looked at that. Certainly you can possibly fine tune the algorithm better by recording video every minute or by transmitting every minute. Are you fixing anything for the patient? If we determined that that was a better experience for patient, we would absolutely address it. But right now, our patients are comfortable with five minutes. We haven't gone below that if you have an alert, you get it on a timely basis. Our alerts are very accurate in that timeframe. And so we're comfortable where we are we continue to research things like that. But our market research indicates that five minutes is absolutely fine for our patients right now. Stacey Simms 21:44 I will devil's advocate by saying the response was from this is not Tim's case, but another person to chime in and say for very young children. They thought it would be helpful as someone whose child went ages two to nine with no CGM, I had don't have that perspective. Unknown Speaker 21:58 Well, they're highly variable. And that could be a marker where it would be would be very helpful. Although that I learned every time we talk, Susie? Stacey Simms 22:06 Well, you're more than welcome to use the Facebook group as a focus group anytime you'd like. We have some people you met one of them who thinks you know, looking at the Dexcom only when an alert is okay. And you have other people who have gone around the system because they don't like the two hour warm up. So some people can't get enough data. And some people who are 15 don't need any data. Yeah, there's a happy medium in there somewhere. I'm sure. I know we're gonna be running out of time. But I do have to ask the adhesive. It just seems that this year, there were changes. We've talked about it before. And while for some people it is getting better for some people, it is not. I know you're working on it. Unknown Speaker 22:40 So let me walk you through that. We did change our adhesive. So let me be clear where and we talked about this before, we had what we felt was too many sensors fall off before the 10 days were up. And you know, if I bought a sensor, and it fell off today, and I want to I want to replace, and we replace a lot of sensors, we looked and studied a number of adhesives and arrived in one way arrived at based on numerous studies, we've not seen the irritation in our our trials that we've seen in the field. And in all fairness, the number of sensors falling off is decreased dramatically. And it is there many more sensors not falling off, and there are complaints about etc. So the trade off business wise, has been good, it has not been good for those patients who have that issue. We do have on the website, clinically proven alternatives and things that you can do to try and minimize that. There's anti allergy things you can put on your skin. There's a tape you can put on first and our tape over the top. We have studied the adhesive and the chemical composition of the adhesive a great length, we are doing some trials, just some in house studies to try some new patches to see if that helps. We've identified literally two agents that may be causing this. If we take those out, do we still have the same sticking power that we do now? So we'll look at it and if we can find a way to revise it, we will Stacey Simms 24:06 when we talk to a couple of months ago, you were announcing CGM in hospitals. A lot of this was centered around COVID. Hoping to make it safer in hospitals. There's some newer information on that. Unknown Speaker 24:18 How's it going? It has gone extremely well. You know, we've had over 200 hospitals reach out wanting CGM and we're in the process of getting it to tell them that eventually want to buy it. We're in over 100 now, we've now set up a registry so we can gather data from these patients. This was such for lack of a better words of fire drill, we started because there were so many people in hospitals, so many people so sick that we had to get it out there. And we literally learned new things every day. For example, the receiver really doesn't work because it's still there with the patient. They they needed phones. You don't want any individual nurses or caregivers PHONES WE HAD TO GIVE phones to the hospitals and we had to get through the IT systems and hospitals. Now that we have a pretty good idea how this works, we're creating a registry whereby we can gather data on these patients, you have to consent for us to gather your data, although you want to gather data about their healthcare experience in a hospital that came in with COVID, what drugs are they on? How are they treated, if they leave the hospital sooner or later, we want to gather that data. So we can use that to give us a basis later, at some point in time to go to the FDA and say, this will be a great hospital product. Stacey Simms 25:26 This has nothing to do with hospitals, but it just occurred to me, there are a lot of diabetes camps over the last few years that have talked about maybe we could get every kid's Dexcom and put them on a screen in the infirmary or, you know, a generalized or, you know, a place where we could look at something like that. I'm curious. I don't know if that sounds like something that would even be possible. Unknown Speaker 25:46 That's exactly what the hospital systems would want. They would want although CGM is going to one place, you know, we have to use the tools that we've got. So they would put sensors on patients, we'd hang phones next to them. And if they wanted to share follow on the hall on iPads or computers, they could and that was, that was literally all we could do. We got the clarity to whereby it could accept real time data. So we got that change as well to make this easier. But the right answer at the hospital, one of our learnings is we need that day to go to the place where it best impacts the workflows of the caregivers. And that would be a centralized app where you could watch numerous people at the same time. Stacey Simms 26:25 Well, if you want a pilot camp, I could probably find several Unknown Speaker 26:29 time we can try that. Maybe Stacey Simms 26:31 before I let you go, I always have to nag you about follow, because Benny is now very responsible doing most of his care. And yet, when I look at the follow app, I would love to note transmitters dying, change this do that any plans to update follow to give a little bit more Unknown Speaker 26:50 where we writing follow as, as I speak, I don't have released a party, but we are and put more of those same features in it. All right, Stacey Simms 26:59 well, we'll circle back on that. Unknown Speaker 27:01 We'll circle back. And I'm sure you'll have requests on follow even when we release the new one. And that's okay. I'm free is very clear, though. And your follow comment is perfect. This truly is becoming an experience, a consumer experience side product, what can we do to make this most engaging for you For you follow would be to have all that data. And I'm confident we can create that experience at some point in time, we need to find the experience that keeps people engaged and keeps them the safest. You know, we took a shot in the dark boy for started because nobody ever done this before. And here's what we can get done. And here's what we'll get out. I think over the next several years, what you'll see what next comments will create experiences that you can create more like your other apps whereby you can click on File, do you want the transmitted information? Yeah. Do you want that? No. Do you want in and literally create a menu and tiles and stuff similar to other software experiences that you have? So that you know that's a longer term goal? We can talk about that on another show. Stacey Simms 27:57 I really appreciate it. I mean, Kevin, you've been accessible for many years to this podcast, and always answering our questions, whether they're the answers that people are hoping for or not, you're really upfront in a way that not every company is. And I do appreciate that. So thank you so much for spending time with me as usual. circle back around, we'll get Benny a haircut. And we'll talk soon. Unknown Speaker 28:17 He can work do whatever he wants. But yeah, thanks for having us again. You're killing me. Announcer 28:31 You're listening to Diabetes Connections with Stacey Simms. Stacey Simms 28:36 Lots more information about Dexcom. And some of the other things that Kevin talked about at Diabetes connections.com. And as always, there is a transcript. We've been doing that for every episode in 2020. So if you want to share this with somebody who maybe doesn't want to listen would prefer to read or if that's you, and you're thinking, I want to go back and read all the episodes this year, you can do that, go to Diabetes connections.com. And click on any of the episodes from this year, I mentioned at the beginning of the show that I would share a little bit of information about how I pick the guests book the guests and ask the questions. This came up in the Diabetes Connections Facebook group, it is Diabetes Connections of the group. I think it's a really good and fair question. And it came up because I posted Hey, dex calm has asked if they can come on and talk about I believe it was the VA program and the hospital update. Do you have any questions for them? And a listener said if they're telling you what they want to talk about? Isn't that an announcement and not an interview? Great question. I've been in broadcast journalism since I was 19 years old. And almost every time unless you're enterprising a story unless you're you're coming up with an idea and following it through. What happens is they will send a news release to you saying, here's what we want to talk about. Here's our big news. Here's what we want to announce. We are making the people available. And then you email back and say, great, I'm going to also ask about other questions. And if you don't agree to that, I'm not doing the interview. Sometimes you have to agree sometimes if you're going to get a particular kind of guest You know, everybody has their own guidelines for this. They make their own decisions for this. I don't think once on the podcast that I've had to do that. And that would be kind of silly. And I would certainly tell you if that was the case, you know, no one has ever said to me, You cannot ask about this. I do give. And again, this is a little bit more inside information. I do give when I talk to the like, the real life people, when I talk to ordinary people living with diabetes, I tell them off air, hey, if something comes up, that's too personal. Just let me know. And we'll change direction. We won't ask about that. I don't believe I've ever had someone tell me No, I don't want to talk about that. But you know, you understand if I'm talking to just off the top of my head years ago, we talked to this great guy, he has type one, he owns an ice cream shop, his daughter has type one as well, they had a really interesting and kind of cute story. If I get too personal with him, if I started asking personal questions about his daughter, who was a young girl, and he may not want to share everything about their diabetes routine, or their school routine. I mean, we can think of anything he wouldn't want to share, that doesn't really matter to the issues at hand that I'm talking about with him that we're hoping to learn from him. But I don't do that. When I talk to the technology companies or the insulin companies or you know, leaders in our community when you have pressing questions. They don't have to answer the question. But I have to ask the question, and I don't edit that out. In terms of who comes on the show. I regularly email when there's something in the news. Certainly, all the technology companies, if you have a question for you know, somebody, I'll fire it off to them. I'll say, will you come on. And you know what, I don't hear back from a lot of them. I have been trying to get Abbott to come on the show. Since the middle of the summer. I think we're gonna do it soon. But when Libra two was approved, I tried to get them to come on. I think Libra three, they're coming on. Omni pod has told me no, we don't have anything to talk about right now. So we don't want to come back on the show right now. And there's nothing really wrong with that. It's frustrating for me, but I do reach out. And I try to get them on as much as I can. So you've let me know, I could do a tech diabetes podcast every week, ignore everything else, and still do great. I don't want to do that. I like talking to the into the wide variety of people that we do. But trust me, I know, they're popular episodes. And I try to get everybody on as much as I can. As I'm ticking off the names, I'm realizing I have to follow up with Tandem. We talked this summer about doing a second episode about best practices with control IQ. And we need to follow up on that as well. So I'm not trying to single anybody out and say they're the bad guys. It's just a matter of following up. And if you don't know, and this is not an excuse, but just you know, again, as I'm just telling you everything here, this podcast is just me, I do have an editor who's wonderful. I don't have a producer, I don't even have an intern right now. It's just me trying to do everything I do and run other parts of my business as well. And you know, be a mom and do all those cool things. So no excuses. It's wonderful. I love doing it. But I think it's important to be open and honest about the process. I also do know there are groups that will not come on this show, because I asked tough questions. I mean, I think I'm nice. But it has gotten back to me that there are other outlets that are friendlier. There are people that will stick to a list of questions that will blur the line between sponsorship and content. And that's not what we do here. And I can't pretend otherwise. Alright, if you have any other questions, let me know. I'm happy to answer them Stacy at Diabetes connections.com. I hope all of that made sense. I hope it was interesting to you. I think it's important information. Thank you so much to my editor john Buchanan said audio editing solutions and thank you so much for listening. We will be back in just a couple of days. Tuesday is our regular release day and hey, we have a new episode with Medtronic coming up. We went through all of the recent approvals What's Up next, what's up with their purchase of companion medical the makers of the in pen. So lots of info coming up in that episode, which will be released on Tuesday. Until then, I'm Stacey Simms and be kind to yourself. Benny 33:54 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged Transcribed by https://otter.ai
There's new help for doctors who want to treat the person with diabetes and not feel overwhelmed with data. The people at DreaMed Diabetes are behind the brains of the Medtronic 780G system, but they're hoping to help thousands of people who may never use an insulin pump by making diabetes data a lot easier for doctors to use. This week, CEO and Founder Eran Atlas explains their Advisor Pro system to Stacey. Study in Nature Medicine about DreaMed Diabetes Join the Diabetes Connections Facebook Group! In TMSG a big award for a doctor you all may know better as an Amazing Racer and I learn the word Soccerista. Read about Emerson in her own words here In Innovations – women and diabetes tech design. Read the DiabetesMine Article here Sign up for our newsletter here This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's new book: The World's Worst Diabetes Mom! ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription (beta transcription - computer only) Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke. hypopen, the first premix autoinjector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:23 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:28 This week, there is so much data when it comes to diabetes that even your doctor would like an easier way to interpret numbers and make dosing recommendations. A new first of its kind technology called DreaMed may help Eran Atlas 0:43 with the use of your system. I can stop being a technician I can learn to being a mathematical or an engineer, I learned how to be a physician and I wanted to continue to go and practice medicine. I don't want to go and practice engineering. Stacey Simms 0:55 That's DreaMed co founder and CEO Eran Atlas, talking about the reaction he's getting from people who use their system will explain what it's all about and how it could help in Tell me something good. A big award for a doctor you all may know better as an amazing racer, and I learned the word soccerista. innovations. Let's talk about women and diabetes tech design. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of Diabetes Connections. I'm so glad to have you along. I'm your host, Stacey Simms, we aim to educate and inspire about type 1 diabetes by sharing stories of connection, as well as stories of technology. And that's what I'm talking about this week. And I went into this episode, I gotta tell you sort of thinking it would be one thing, because I know many of you are very familiar with the technology and these companies. DreaMed is behind the algorithm that's inside the Medtronic 780 G, which was just approved in the US. And we actually are talking to Medtronic and our very next episode about that many other things. But the agreement with Medtronic and DreaMed was it was done several years ago. And DreaMed while I'm sure very proud of that algorithm, they've moved forward, they moved on they want to talk about something else. It was very interesting for me to go through this interview, and I hope you enjoy it as well, for more of the mundane, less technology and more basic, how much more basic can you get with diabetes and insulin? I'll give a quick update at the very end of the show. I had mentioned in a previous show, we had some insurance changes, a bunch of you wants to know how that was going. Hey, yay, insurance changes are always fun. So I will talk more in detail about that at the end of the show. But in terms of insulin, yeah, we're switching types. Don't you love that? We had been on novolog for many years. And then when Benny was I want to say about eight or nine. We switched insurance and they switched us to human log and we have been on that ever since he's 15 and I guess it's time to go back to no vlog. So I'll talk more about that at the end of the show. Luckily, we don't have any issues or haven't had so far I know a lot of people do. Fingers crossed. So yeah, insurance update and more at the end of the show. All right. Interview with the CEO of DreaMed in just a moment. But first diabetes Connections is brought to you by One Drop. One Drop is diabetes management for the 21st century. One Drop was designed by people with diabetes for people with diabetes. One Drops glucose meter looks nothing like a medical device you've seen this. It is sleek, compact, seamlessly integrates with the award winning One Drop mobile app, sync all your other health apps to One Drop to keep track of the big picture and easily see health trends. And with a One Drop subscription, you get unlimited test strips and lancets delivered right to your door. Every One Drop plan also includes access to your own certified diabetes coach have questions but don't feel like waiting for your next doctor visit your personal coach is always there to help go to Diabetes connections.com and click on the One Drop logo to learn more. My guest this week is the co founder and CEO of DreaMed and is really company with the slogan we treat the data you treat the person Eran Atlas talked to me about everything from their partnership with Medtronic. As I said they develop the algorithm that's inside the newly approved 780 G to their newer technology. And this is all about helping doctors better interpret the data they're getting from CGM and pumps. He mentioned a brand new study on this, comparing their algorithm very favorably to outcomes from Yale and Barbara Davis diabetes centers. And I will link that up in the show notes at Diabetes connections.com. I learned a lot from this conversation. I really hope you enjoy it as well. Here's my talk with Eran Atlas of DreaMed. Eran, thank you so much for joining me. I'm excited to learn more about this. Thanks for coming on. Eran Atlas 4:49 Thank you very much for having me. Stacey Simms 4:50 All right. Tell me just generally, what is DreaMed What does this mean for the diabetes community? Eran Atlas 4:56 Well, you know, for a certain amount of years A lot of effort has been invested on, let's get more accurate glucose measurements, let's get more continuous glucose measurements, let's get those glucose measurements and insulin measurements being connected. And everybody told us that if we will have more data, more accurate data, more accessible data, all the problems about managing people with diabetes will be solved, right, because the patient will be more knowledgeable, the providers will be more knowledgeable, will have the tools to get into a better decision. Now DreaMed started as a technology team within one of the biggest Institute's that treat people with diabetes, Type One Diabetes here in Israel. And what we saw there is that data is not all and and sometimes in order to make this analogy, these logic thinking between data and decisions, there is a lot of gap that you need to jump in order to make that move. You need to be experience, you need to know what is important, what's not important, and you need to be able to make the right decision in the right time for the right patient. So what dreamed is taking on is we would like to take the responsibility of allowing providers and patients to make better decisions about insulin dosing. When we started in 2007, the Holy Grail was okay, let's try to develop these automated insulin delivery algorithm that will make these decisions in real time. And we managed to do a prototype and we published these results as were the first publication in New England Journal of Medicine. And finally, after didn't several clinical trials send people home, we were the first group in the world that sent people home with automated insulin delivery, we licensed that to Medtronic diabetes. But the cohort of people that are going to be using are currently being using automated insulin deliveries pretty small depend on the amount of people with diabetes type one type two that needs to make decisions about insulin. So what dreamed is now focusing is on developing those and commercializing those algorithms that will be able to take all the vast amount of data that's out there, and it can be accessible from cloud to cloud, mobile and everything. And how do we get into the most accurate, personalized decision about how much insulin a specific person with diabetes need to infuse? Not just in terms of real time, but more about looking on the treatment plan? How to optimize carb ratios? How to optimize basal treatment, how to optimize insulin sensitivity factor? What is the difference between a patient on an insulin pump to a patient that is using multiple daily injections based on only different kinds of types of injection regimen? That's what DreaMed right now to do. So we would like to make sure that we will treat the data. So a person with diabetes can continue to live in a provider can start dealing with the person that is in front of them and not just looking into the computer, making himself a technician with numbers and decide what to do. Stacey Simms 8:04 you have heard the podcast. So you know, I'm easily overwhelmed by data and information. I listened to everything you said. And here and I'm trying and here's what I heard. We want to make life easier for you. There's too much information that comes your way even with accurate CGM. Even with automated insulin delivery, there's so much data and information that unless you are a numbers person, you know, you may not be able to crunch it yourself. And I know you, you mentioned already a lot more down the road. But if I could focus on that the automated insulin for just a moment and come back to some of the other things. Can you just tell me as I'm listening and please correct me if I'm wrong, Vinnie, my son is using control IQ with the algorithm that's inside the Tandem pump using partnering with Dexcom. Is this sort of that? Is that the first step that you're talking about when you talked about automated insulin? Is it the algorithm that controls the pump in the CGM together? Eran Atlas 8:56 Correct. We started in 2007. Building such an algorithm at the time we called him the medical doctor, the MD logic artificial pancreas. And the idea of what is different between the algorithm that we developed back then and the one that you have right now in control IQ, is how do you make these real time decision about how much insulin to infuse and, and while control IQ, as you may know, is using MPC technique, a Model Predictive Control, and you have that model of Medtronic that uses a different kind of type of control. It's coming from the engineering world, we were strong in understanding how physician analyze data and what we did is we took a technology called fuzzy logic, and I thought you know what fuzzy logic is but I'm sure you have it in your washing machine, and you have it in trains in China and everything. And the idea behind fuzzy logic is that you know why the world is not one and zero black and why there has to be a mathematical way to make decisions based on gray areas. And it's pretty much the way that we're thinking as a person. So, we took his the way that physicians analyze data, make a decision and automated using dispatches fuzzy logic. And we develop these automated insulin delivery algorithm. And we tested it and when he got the the ability to communicate with Medtronic pumps, and now, we have our some part of our algorithm is going is inside the Medtronic 780G that they announced that they got to see mark for that in June DC or in there, I'm sure that they're going after that the FDA, the main difference between what we did and what happened in control IQ and Medtronic 670 G, is the fact that we were the first that play with the changing automatically both the basal and bolus. And we have the ability to predict glucose into the future and dose insulin based on the predicted glucose. Some of the elements that we have, you have also in control IQ. And I noticed Ctrl Q is working pretty well. But one of the things that we had in that time is the understanding that there's a lot of sensitivities off the patient that these AI D algorithm will need to use. So for example, when you are using your control IQ, you still need to go through your meals, right? So you need to optimize your carb ratios. And some of the safety limits are still dependent upon the insulin sensitivity factor off the pump or the open loop basal rate of the pump. So the algorithm is like riding on that basal rate. So we had a similar methodology. And we developed these what we call today, the DreaMed Advisor. It's that algorithm that optimize the sensitivity factors. So I back into the time we have two pieces of our technology. We only licensed one of it to Medtronic. And we continue to develop the other one because we believe that the other one will have a much more larger number of people with diabetes. Stacey Simms 12:01 So tell me about that other one, where will it be used? Or you're talking about people with type two or people who use insulin, any type? Eran Atlas 12:08 So that's an interesting question. So we just we started with an algorithm that basically optimize open loop pump therapy, and we took data from CGM at the beginning. And history of pump delivery basically did an automated way what any physician is doing in the clinic right now. And we developed that technology we got we won a grant from Helmsley Charitable Trust back then in 2015. I out of 70 applicant applicants got $3.5 million to evaluate the performance of this algorithm versus doctors from Joslin Diabetes Center, the School of Medicine yell, Barbara Davis in Colorado University of Florida, within three sites in Europe, with the intention to show that if you are a physician, any kind of type of physician that uses all algorithm, you'll get into the same clinical outcome as if that patient data was analyzed by doctors from these leading academic diabetes centers. And yesterday, the results of the study were published in Nature medicine, showing that we are doing the same outcome. As expert Doc's. If you can think about it, 60% of the cohort, we type 1 diabetes, the adults one are being treated by primary cares where we can do to the to the glucose control of these patients, if we will equip those primary cares with a technology that helps them analyze data and get the same performance as special endocrinologist, what we can do to the touchpoint of changing the insulin treatment of a patient, if instead of the patient will need to wait 3, 4, 6, 8 months to see his endo will have some sort of virtual place that he can send the data and share the data with the algorithm the algorithm will make all the calculation and recommend how to change the insulin dosage or the insulin treatment plan of that patient. So that was the what we did so far. And when we approach FDA, we that FDA didn't know how to regulate such a device. Yeah, because there was no predicate to what we offer to FDA to do. So what we managed to do with a very strong partnership with the FDA team is to decide and we will regulate this device as a new product. So in 2018, we got FDA clearance based on 510 k de novo. So we are the first in the US system that regulated a product that an algorithm can take continuous glucose sensor data and make recommendations to our healthcare providers how to optimize insulin treatment for our patients. Stacey Simms 14:44 So I'm trying to break it down because that does sound like such a useful tool. I'm an adult with type one, I'm seeing a general practitioner who may not know the nuances of treatment, they take my CGM data, they take my dosing data either I'm assuming either from a pump or from me They send it to your service, the care provider, the doctor then gets the data back and can give the patient advice based on your technology using the expertise and you know, from the algorithm. And that new study said that advice is comparable to Yale and Barbara Davis and all the places that you indicated. Did I get that right? Unknown Speaker 15:21 Exactly. Stacey Simms 15:28 Right back to Eran in just a moment. And he's going to be explaining their agreements with other diabetes groups like Glooko, like Tidepool, but first diabetes Connections is brought to you by Dexcom. And do you know about Dexcom clarity, it's their diabetes management software. And for a long time, I just thought it was something our endo used, you can use it on both a desktop or as an app on your phone. It's an easy way to keep track of the big picture. I try to check it about once a week, it really helps Benny and me dial back and see longer term trends, and help us not to overreact to what happened for just one day or even just one hour. The overlay reports help add context to Benny's glucose levels and patterns. You can even share the reports with your care team, which makes appointments a lot more productive. managing diabetes is not easy, but I feel like we have one of the very best CGM systems working for us Find out more at Diabetes connections.com and click on the Dexcom logo. Now back to my interview with Eran Atlas Eran Atlas 16:27 And the way that it has been flowing in so we sign a data partnership with gluco. With Dexcom, we take all we have our own platform, so the patient can download the data at home, he doesn't have to get physically to see the provider, which is super important, especially now when it COVID-19 is and then the data is coming to our system, all the provider needs to do is just push a button request the recommendation here we'll get that recommendation and nothing's going to get you know, blurred the things you know, please consider looking on. He will get exact numbers that the algorithm will tell them listen at 6am change the call ratio, that specific patient from one to 15 to one to 10 exact numbers. Stacey Simms 17:11 All right, I have two questions. From a very practical point of view. I'm curious if you've run into a provider who says I can do this better? I don't need this. Sure. I don't know the difference between Lantus and Tresiba. I'm a general practitioner. But why do I need something like this? Have you run into resistance from providers? Or are they I could see the flip side, thank goodness for taking this off my hands because I don't have the time to learn all of this. Eran Atlas 17:37 So there are two types of providers. So first of all, that the approval that we have right now the clearance that we have with FDA is just for type one people on insulin pump, we are pursuing the advance of the indication for use for the injection cohort and with the intention to submit it by the end of the year. But in the study that we did, and right now we are we already deployed the system in several clinics around the US. You know, we are in Stanford University, University of Florida, New York University, Texas Children's so that we are already people who have already more than 1000 people that use the technology. And so when we heard for them, these couple of things. So number one, it became they curious, they want to check, we want to make sure that we didn't make any false recommendations. And they're not agreeing 100% with anything that we are recommending. So we always allow them to edit. If there's anything that they would like to edit, they can edit it before they share it with a patient. But as time goes on, and they building their confidence with a system, they are relying on the system, and they're really feeling how they've helped them. So for example, Dr. Greg Forlenza from Barbara Davis said, you know, what would you use of your system, I can stop being a technician, I can learn to be a mathematical or an engineer, I learned how to be a physician. And I wanted to continue to go and practice medicine, I don't want to go and practice engineering. So this is one of the feedbacks. And I think that when we'll code to the mass numbers of providers, there will be different kind of providers, some of them will be resistance, but I think that one thing we'll see the clinical benefit and the response of their patients, I think that it will endorse that and it will build our confidence with it. Stacey Simms 19:17 I love that that he doesn't want to be an engineer, he wants to be a physician. We should all be so lucky to have a doctor who wants to do that. My other question on this and I'm apologizing just throw things at you to mess up the system. But the first thing I thought of was somebody like my son who's a not an unbiased person, but he's a great kid. He is not a perfect diabetes person. Perfect example that I think would mess up your algorithm. This morning. He had I don't even know coffee, hot chocolate glass of juice. I don't know what he had. But he had something as he's going to virtual school to. He's he's right down the hall for me so I could go ask him, but I can see that his blood sugar has already gone up to 140 it'll drift back down thanks to control IQ. I don't know if he bolus for that drink. If or If people just after, what is the algorithm do when people aren't, quote, perfect diabetics, because you can adjust the carb ratio and the basal rate all you want, but most people with type one aren't automatons who are going to fit an algorithm? Eran Atlas 20:14 Oh, that's an excellent question. I think that at the end, if you are creating something for the use of people, you have to understand that nobody's perfect. And you have to make sure that the recommendation that you are providing will be a right on the spot, because otherwise it will cause safety issues. So what we are doing, when we're taking the data, number one that we are doing, we are trying to split that data into events, and understand, okay, that's a meal event, that's a bonus event, that is events that usually debatable could make an influence because there's no BOCES a meal. Before afterwards, we also apply different kinds of techniques to automatically detect places where the patient ate, and the bowls for that, or didn't report the name use these calculator in order to calculate the amount of light and and then for each one of the events, we are trying to ask the algorithm is asking himself Okay, is it a issue of dosing problem? Or is it an issue of behavioral problem? Do we see the high glucose posted meal because the carb ratio is wrong, or because the patient just deliveries, bolus 1520 minutes after the meal, and there's no way that the glucose could be down? So we are from our experience, because we are so much integrated with doctors that understand data. And because you know, I'm here, ces 2007 is closing my 14th. year on February, we know so much about people with diabetes, how they behave. So we programmed the algorithm in that way. So the recommendation that we are delivering is on the spot. If we're saying that we don't have enough events that imply on changing and dozing will not issue that we can personalize even the behavioral messages and calculate what is the most important behavioral that will improve the timing range. And we're not issuing 20 types of behavioral messages. Learn to be have a message note, we're issuing no more than three. And we're very specific. So if we're seeing something that happened specifically on the breakfast of Benny world, tell him listen, Benny, please pay attention on breakfast, deliver the insulin, 10 minutes before the meal, because that's what's set what makes your entire day being hot. Or if we're seeing that when he has an iPhone, you just eat whatever he finds in the refrigerator. And we see it from from the dynamics, we're trying to teach him how to compensate for a high pole in a better way. Stacey Simms 22:46 It's absolutely fascinating. I think that's tremendous that you're building in the behavior as well. And you can really account for it back to the automated systems. And forgive me, Eran, you used a term open loop rather than closed loop and pardon my ignorance, you explain what that is? Eran Atlas 23:02 Sure. So open loop is what we call using pump therapy with CGM or with self management blood glucose meters without any ID system. So though some people call it sensor augmented pump therapy, some people say just a regular insulin pump therapy. Some people say it's open loop, there is no algorithm that closed the loop in real time and command in real time how much insulin to infuse on an insulin pump based on CGM data. Stacey Simms 23:33 Okay, if we go back to the algorithm that is more closed loop and kind of looking ahead for what you're planning on that we've already talked about mealtime, boluses, and how challenging they are for people, whether it's estimating correctly or remembering to do them or doing them late. What's your plan for that? I know there were a few AI systems that are looking to try to do away with a manual mealtime bolus is that in the cards here. Eran Atlas 23:56 So for us is not on the cards at a moment. I think that what we are trying to look is is beyond the AIP system. It is how to help those with type two on insulin, how to have those on injections because think about it a couple of years ago, nobody knew what's going on with people that still doing injections, right? None of them knew CGM you didn't know what's going on with injections because they didn't record that or they just cheating and when they sat in, in the reception area of the clinic, they to complete the paper and and try to make lottery on when they did at those doors. They're instantly now these days been available thanks to the hard work that Dexcom you know avid Medtronic is doing on the CGM space and companies like companion medical and others they're doing you're connected to and and we know other efforts of other companies. You know, no voice is doing that Louie's doing that. So all of a sudden the same problem that we had a couple of years ago when people on CGM and pumps for the type one persons and depression And the amount of data, we're not going to have it in a much, much broader population, you have about 12 million people that dose insulin in the US, but only 1 million of them are on pumps with type one. So the question is, what are you going to do with these 11 million people? And that's where our focus on that's number one, another focus that we are looking at is going into contextual data? And how can we know and combine the fact that we can know where you are from your personal life in terms of you know, if you are driving or you are walking, or you are going into a restaurant? And how to combine that information with the glucose data? And what predictive real time notification we can give you in order to improve that, and the glucose control? Stacey Simms 25:49 Alright, wait, wait, you're gonna know where I'm driving? I'm walking to a restaurant. Wait a minute back up? Are you in my this is something in my phone? Are you using cell data? Eran Atlas 25:58 That's easy. You know, when you're driving? Do you have a Bluetooth in the car? Yes. So the phone knows that you are connected to the Bluetooth of the car, right? Yes. So for example, if you will give the permission, our application will be have the knowledge that you are driving? Are you using navigation software? Stacey Simms 26:17 Yes. Do you have to lift or no, I don't mean to interrupt your train of thought here. But for some reason, I just thought of the Pokemon Go app from a couple of years ago, because it knew when my kids were in the car and not walking, right. I mean, I know I sent you're probably laughing because I sound so ignorant with this stuff. But yeah, with our cell phones, I'm sure that everybody knows where we are at all times. It's Eran Atlas 26:37 amazing. That's right. But I think again, so I'm not talking about you know, poking your privacy and everything. And it's have to be on a certain things that that the user will need to authorize, or the benefit of the user, but but potentially, many will learn driving, like they will go into any driving license, I'm sure that nobody wants a person with diabetes, that these glucose is going down or predicted to be down in next 30 minutes to start driving. Stacey Simms 27:05 So would it give in your system, would it then give a reminder, um, you know, I'm walking into a restaurant time to bolus Is that what you're envisioning. Eran Atlas 27:13 So again, your glucose is dropping in the next 30 minutes it please take something before you start to drive. Or we're seeing that you're going into a restaurant and you're using glucose is sky high, or going high and the high trend, please correct your glucose now before start eating, because then it will be much more difficult to correct your glucose. These are the types of things that you know are examples of how you take context and combine it together with glucose and insulin data. Stacey Simms 27:41 It's so interesting to me, because I think, especially with the type two community who use insulin, it's a very different world than the type one community where most people well, I'm biased, because my podcast audience is so well educated. But people are thinking about it so much more often. I have lots of friends with type two, who dose insulin who don't really think about it, who don't really know, just because they're, as you said, they're seeing a general practitioner, they're not as educated. It's not a it's not a personality flaw. And I could see where this would be so helpful. Just these reminders with people with type two, have you already learned any nuances of how they want to use this kind of system? Is it different than people with type one? Eran Atlas 28:22 So I think that within the type two population is very much dependent when there are on multiple daily injection therapy, or they're just doing basic only. So that's one big difference between type two and type one another big difference is Yeah, like you said, they're thinking about the condition differently. They are denying the fact they have a condition. I think that's much stronger than people with type one, especially teenagers with type one that you know, try to break the system and try to see what's going on. But it's still you need to find other ways to do that. And we're still studying eighth, what is the best way to deliver that to people that have type two diabetes. And that's why initially we're focusing on their providers, and try to better understand what people that are treating people with type one diabetes would like to see how we can help the providers provide a better treatment for them. That will be our first step, then when we will get these endorsement and understanding about the actual users will be much more comfortable to offer something that will go directly to the user because as you said it truly it's a different population. I remember Stacey Simms 29:31 years ago, there was a big push and I know you were you were around. If you started in the mid 2000s, there was this big push to almost gamify type 1 diabetes, right with apps that kind of gave you rewards for checking or here's a game that would help kids learn or even adults. And it turns out that most people didn't want to think that much about it. They just wanted the system to take care of it like stop reminding me to log stop reminding me to dose handle it. Talk to me about how DreaMed will do that. Even though You are talking about reminders, Eran Atlas 30:02 because I think that the difference between the reminders that are in the market, they used to be in the market. And what I'm trying to talk about is that those reminders were based on general timeframe. So for example, you know, you're logging into the app that you need to take your basal insulin between seven and 9am. And and now it doesn't matter if you are going just to go into deliver that it will be some sort of mechanism to just ping that, that reminder to you and will drive your crazy, right? I think that what dreamin is trying to do is a couple of things. Number one, we're not just giving them regular reminders, we're giving actionable reminders, so it will tell you to do something, because this is the right time for you to do these actions. And number two, we are trying to take off the burden of treating diabetes, you know, taking the burden off thinking about your glucose and thinking about what you need to do right now, for people that use a ID system. This is exactly what he gave them, you know, you know that there is something that looks on your glucose on a regular basis every five minutes, analyze the situation and provide your the actual dozy, but on people with with multiple daily injections are not using pumps. So there is the only way to make the insulin injected is to make some sort of a partnership with a user. So that's what we're trying to do. We're trying to create all the mechanisms that will bring this partnership between the person with diabetes on injections and the algorithms, we're trying to make sure that wherever we are issuing some sort of reminder, it will be an actionable one. And and hopefully it will be within a certain timeframe that the user is willing to accept such a reminder, because for example, if you're driving and then the system is shouting out, give insulin right now there's no way that you're going to give that insulin right because right now you're driving. But if we're able to capture the exact moment that you're open to get that reminder, and this international reminder, it's not a general one, I hope that people with diabetes will find it useful. And I think that's the thing that we are trying to learn together with the community. And to be are we personally diabetes at work for us, because at the end, it's a partnership between the person, the provider and the industry. And that's what we're trying to create. It's important for people to know that there are companies that are not in the US and might be a little bit small, but they are trying to make a difference for you. And I hope that together with what we're trying to do and what the community is trying to do, when we are partnership, we really, really be able to make that difference. Because the culture of dream ed is coming from a clinic. It's a company that the importance of making lives better is on our culture. Another thing in our countries, make sure that whatever we're issuing has a clinical benefit. We're just not not just want to have a cool product and just get more money. And I really, really optimistic about the impact that we can do on people with diabetes. And we're committed to do that Stacey Simms 33:14 around before I let you go. Do you mind if I ask about the population with type one in Israel? Sure. I'm trying to think I know in Scandinavian countries, it's very high. Eran Atlas 33:23 it's debatable, but it's between 30 to 50 k people in type 1 diabetes in Israel, this is it. But we don't have a lot of people with type 1 diabetes. If you're looking on the pieds all the peas are being treated by you know, academic centers, big hospital clinics, the clinic that I'm coming from, is pretty much treating a very large portion of this of the kids and adults are usually go in the same way either to a specialist, but the most of them are going into two primary cares. Where were very techie we were had a lot of a lot of people on CGM and insulin pump. We currently don't have control IQ and ease rail. It's not approved so and 670 G is not reimbursed so the majority of the cohort here in Israel are on regular pump and CGM. Stacey Simms 34:11 This is well as I said, before we started taping, my son is planning a long trip to Israel next summer. So maybe knocking at your door if you're just some hand holding. Eran Atlas 34:22 I will be happy to I will be happy. Don't worry. Yeah, I think I can vouch for that. Stacey Simms 34:29 Everyone, thank you so much for joining me in explaining all this. I really appreciate it. I hope we can talk again soon. Announcer 34:39 You're listening to Diabetes Connections with Stacey Simms. Stacey Simms 34:45 More information in the show notes Just go to Diabetes connections.com. And every show has show notes we call them I call it an episode homepage as well because not every podcast player supports the amount of stuff I put There, every episode this year has a transcript. Every episode ever has links. And so sometimes if you go to Apple podcasts or if you listen on, you know, Stitcher or Pandora, or wherever you listen, and we are everywhere, right now, they don't support the links. So if you're ever curious, or you can't get to something, just go to the homepage and find the episode, there's a very robust search, because we're up to 325 episodes. So I wanted to make it easy for you to find what you were looking for. But when you do that, you can find more information about DreaMed, and I linked up the study as well that he mentioned, comparing their algorithm to doctors at Yale, that sort of thing. You know, I'm curious, as you listen, what you think about something like this, I feel like this podcast audience is so involved in their numbers in a way that most people in diabetes land are not. I mean, let's face it, there's very few people who are interested in DIY stuff like this audiences. I mean, I know you guys, you're very technical, you're very involved, even if you're listening, saying, hey, that's not me, the very fact that you're listening to a podcast about diabetes puts you in a different educational plane, then, you know, 90 95%, let's say, of all people with all types of diabetes, which is not a knock on them, it's just the reality of diabetes and education. So I'm really curious to see how this can help. Because as he's saying, you have a general practitioner, who's treating people who's dosing insulin, right, they're given the prescriptions out. And an algorithm like this can make it so much more precise and safe for the people who are getting those recommendations from these doctors who, you know, might really want to do good, but do not have the experience of the education in at a chronology. So that's my stance on it. We'll see what happens I'd love to know what you think. All right, innovations coming up in just a moment. And I want to share this article I found about women in diabetes a device design, but first diabetes Connections is brought to you by a new sponsor this week. I am so excited to welcome g Volk hypo pen. You know, almost everyone who takes insulin has experienced a low blood sugar. And that can be scary. A very low blood sugar is really scary. And that's where evoke hypo pen comes in Jeeva is the first auto injector to treat very low blood sugar. evoke hypo pen is pre mixed and ready to go with no visible needle. That means it's easy to use, how easy is it, you pull off the red cap and push the yellow end onto bare skin and hold it for five seconds. That's it, find out more go to Diabetes connections.com and click on the G Vogue logo. g Vogue shouldn't be used in patients with pheochromocytoma or insulinoma, visit Jeeva glucagon.com slash risk. saw a great article that I wanted to pass along to you from the wonderful folks at diabetes mine. And the headline on this is where are the women in diabetes device design? And I'm not going to read the whole thing to you I will link it up. But the question here was all about our the shortcomings of diabetes technology a result of just the the functional design requirements the way it has to be made? Or could it be related to the fact that there aren't enough women in the medical technology design field, they did a whole survey about you know wearing this stuff, and you know where to attach it, how to put it, you know, dresses, things like that, which you know, at first, listen may sound kind of silly. But when you think about it, wearing the device, the comfort of wearing the device, the mental stress about wearing the device, these are so incredibly important, because people with diabetes men and women, as you know where this stuff 24 seven, I mean, you think about the difference between something that is clunky, that looks outdated, that, you know, just doesn't feel right in your hand. I mean, these things make a big difference in terms of how I hate to use the word compliant, right, but you know, how well we use them how much we use them how comfortable we are with them, in addition to focusing on the pump companies, and in particular Omni pod, very, very interesting take on women who work at Omnipod there, they also focus on women designed accessories for diabetes tech, because when you think about it, and they list all of these companies, you know, we've talked about a bunch of them in the past myabetic and funky pumpers spy belt tally gear pump peels, one of my book to clinic sponsors, thank you very much pump peels, these are all founded by women, because they saw the need and wanted to make life easier and better. So I'll link that up. I really thought it was a great look at a topic that we hadn't thought a lot about before. We focus a lot on what patients need to be involved people with diabetes who actually wear the gear need to be involved. But what about people who wear the gear differently and have different expectations and that by that I mean women. My daughter when she was in high school, wrote a whole paper on pocket equality and did hard research into why women's clothing doesn't have pockets and rarely has pockets that are big enough. I mean, my son puts his phone and his palm I don't know, you know, a lunchbox in his pocket, and he can fit everything in there. He doesn't think twice about it. But sometimes I think about where the heck would I put a pump, if I was wearing what I'm wearing today, right, I have any pockets. Really interesting discussion and hats off to diabetes mine for focusing on that innovations is also your chance to share hacks and tips and tricks that work for you, you know, just little things that make life better with diabetes. So you can post in the Facebook group, or you can email me, Stacey at Diabetes connections.com. Didn't tell me something good this week, a big award for a familiar face around here. Most of you remember Dr. Nat Strand from The Amazing Race. She was the in the team of Nat and cat. And that was The Amazing Race 17, which I can't believe was 10 years ago. We talked to Dr. strand, earlier this year about working as a physician. And during this time of COVID. And how she was treating her patients. She treats patients with chronic pain and that sort of thing. And we're talking about her on tell me something good, because she is the inaugural winner of the Lisa Stern's legacy Diversity Award from the American Society of pain and neuroscience. So congratulations, Dr. strand. Of course, the ceremony was virtual, but you could follow her on Twitter and see the pictures and see what nice things people are saying about her and I will link up her Twitter account if you don't follow her already. Also, in Tell me something good. Something that popped up in my local group. Brian shared a post about his daughter Emerson about diabetes and soccer. And he said I could share it. And it's actually a story about her. It's a story by her. It is Emerson's sucker rista story playing with diabetes. And this is a column that Emerson wrote that is published on the girls soccer network, I would really urge you to read it especially if you have a child who is a high performing or wants to be a high performing or elite athlete. She talks about no days off. And how well you know I'm sure your mind went to diabetes. That was her mantra in terms of sports. And it has really helped her she says deal with soccer. And with diabetes. I'm not going to read her words here. I just think it's a great column I would urge you to read it I'll link it up on the episode homepage and I'm going to put it in the Diabetes Connections Facebook group as well. Well done Emerson really great to see the incredible hard work that it looks like you've been putting in and what a wonderful column as well. So thank you so much Brian for sharing that and for letting me talk about it a little bit here. If you have a Tell me something good story could be a birthday a diverse serie, you know, your child has published in a national print publication, you know, anything you want to focus on, that is good news in the diabetes community, please reach out and let me know, just tell me something good. Tell me something annoying, could be the name of this segment, I just want to talk a little bit about our insurance changes, mostly to commiserate with with many who have gone through this. So as I said at the top of the show, our biggest change is now that they're going to switch insulin on us. You know, I talked to Benny about this, we are so fortunate to have a frankly, have a pretty good stockpile of insulin that we've built up. If you follow the show for a long time, you know that I've discussed his insulin needs went way up. And they have gone back down to almost pre puberty levels. But we never changed the prescription. So you know, I have unfortunately or fortunately, I don't know I have shared insulin in the Charlotte area with adults in need. We have some great local groups. And it is ridiculous that we need to do this, but we do share with each other. And I've been happy to help out on that. But we are basically out of pins. And I like to use pins as a backup. And Benny likes to have them for flexibility. You know, he'll take them sometimes. And if something's wonky with his pump, he knows he can get himself a shot, that sort of thing. But I hate the idea of changing insulins right everything's cookin right now everything's chugging along really well. I don't want to rock the boat. But I also don't want to pay $300 for a pen. So I'm going to be talking to our endocrinologist, Vinny has an appointment in two weeks, as I'm taping probably more like a week and a half as you listen. And we know we'll talk about it, then maybe have some samples, but most likely we will be switching and we did not have an issue when we switched in the past. So I have fingers crossed that it will be fine. It'll be fine. But that is annoying. And I know I don't feel like appealing and fighting if we don't need to. It's possible that novolog will work just as well for him. So let's at least find out and we'll go from there. The other issue was, of course, that we are now dealing with edgepark. And I will spare you all of the details. But I tried to do a workaround. And I'm laughing because I should know better by now. I tried to get the Dexcom prescription to stay at our pharmacy because man we've been filling it at the pharmacy for the last couple of years. And if you have already been able to do that, you know, it's like a dream. At least it is for us. It may take an extra day to get it but it's a day. It's not like they're mailing it out for you and it takes three weeks. It's been wonderful. And I just had on auto refill. And it's been great. But edgepark told me, we don't filter your pharmacy, you only can do it mail order. Well, I didn't want to wait. I didn't want to be cut short. So I let edgepark go ahead and fill the order. But then I did some detective work. And I kept calling and talking to people, because what else do I have to do, but be on the phone with these people? And I finally got someone at my insurance company to admit they would fill it at the pharmacy. But here's what she said. She said, Well, we don't like you to go to the pharmacy, because they don't often have it in stock. And I said, Come on, you know, that's not true. They can fill it in a day. They've been filling it for four years. And she said, Okay, well, you can you do a pharmacy benefit and, you know, blah, blah, blah. So I hung up the phone, and I will fill it at the pharmacy next time. I already have the order from edgepark through the mail. And I thought you know, that's just because my insurance company has a deal with edgepark. That's all that is. She's trying to discourage me from going to the pharmacy because that's their business. I get it. But how stupid is that? How outrageous is that? Oh, now you know why I saved it to the end of the show. I will keep you posted on our many adventures as this moves forward. Because Up next, I have to fill Benny's tandem pump supplies. And we've never been able to do that at the pharmacy. So I'm sure it'll be more adventures with edgepark my new pals. Ah, goodness gracious. All right. Thank you to my editor john Kenneth for audio editing solutions. Thank you. If you are still here, listening to me rant. I love you. Thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself. Benny 46:35 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All rounds avenged Transcribed by https://otter.ai
Broadcaster Stacey Simms tells us about having a son with type 1 diabetes and a funny story from her early news anchor days. Check out her book The World's Worst Diabetes Mom. Stacey thinks you might like Bosch on Amazon Prime Check out a couple of Stacey's guilty pleasures: The Wonderful World of Disney on Disney Plus Hollywood Squares on YouTube Stacey's son was diagnosed with type 1 diabetes in 2006, one month before he turned two. She started blogging about her family's experience with T1D a few weeks later. She launched Diabetes Connections podcast in 2015 to educate and inspire about type 1 by sharing stories of connection. Her book, "The World's Worst Diabetes Mom" is a memoir/guide book where she shares her parenting philosophy of "not perfect, but safe and happy." She spent the first 20 years of her career as a TV anchor/reporter and radio host for local news stations. Check out Stacey's website, Diabetes Connection Find Amy on Twitter and Instagram Things to Know: Join Fancy Free's private Facebook Group! It's so much fun! The question of the week is "What is your favorite phone app?" Click the Subscribe button so you don't miss a single episode! Leave a rating and written review! I will be forever grateful!!! If you have your own not-so-fancy story to tell, email me at notfancy@fancyfreepodcast.com! Do it. It'll be fun! The best way to help Fancy Free reach more listeners is to tell a friend about it. Share the laughter! Next week we feature Caroline Saunders cracking us up over her tendancy to be awkward with new friends. Thanks so much for listening, have a great week, and remember NO ONE is as fancy as they look! ~Joanne
Helene Cooper has type 1 diabetes, asthma, and she's Black. All of those factors increase her risks if she catches COVID 19. They're also exactly what the researchers behind one of the vaccine trials were looking for. She's now in that Phase 3 Trial and shares what it's been like. Check out Stacey's new book: The World's Worst Diabetes Mom! Helene is also a reporter for the New York Times, covering the Pentagon and has an incredible story that began well before she was diagnosed with type 1 at the age of 15. She and her family fled here from Liberia in 1972. Join the Diabetes Connections Facebook Group! In Tell Me Something Good, a few high profile birthdays and diaversaries Our episode with the Dooley Family Our episode with Dennis Goldensohn Plus, Innovations – see through is your organizational friend. Learn more organizing tips from Susan Weiner This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription: Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Real Good Foods real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:21 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:27 This week taking part in a COVID vaccine trial. Reporter Helene Cooper has type one and asthma and says she decided to apply after she met Dr. Anthony Fauci backstage at Meet the Press. She says at first, he wouldn't really answer her questions about her odds Helene Cooper 0:44 And finally, he just he was standing by the door to go on air as we weren't in the same segment. He just stopped at the door. He was like, Look, I'm not saying that you're a dead duck, but she just really need to not get it. Oh, God, I really need to not get this. Stacey Simms 1:00 Helene is now in a phase three vaccine trial. She's a New York Times Pentagon reporter and talks about what it's been like doing her job and living with T1D during this pandemic in Tell me something good a couple of high profile birthdays and diversities plus innovations. Why see-through is your organizational friend. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I'm so glad to have you along. I'm your host, Stacey Simms. We aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed with type one right before he turned two. That was back in 2006. My husband lives with type two. I don't have diabetes, I have a background in broadcasting. And that's how you get the podcast. There is so much in the news these days about the potential for a COVID vaccine. news about the trials political news about vaccines. This episode is a personal story about one woman's experience going through one of the vaccine trials. So I just want to let you know about that right up front. And a big thank you to Gillian McPhee, who in the Facebook group Diabetes Connections The Group shared the article that Helene Cooper wrote about her experience getting into the vaccine and a lot of what she shares here on the show, but I will link that up. I reached out to Helene on Twitter, and she graciously responded. Now Helene has an incredible story, even before she signed up for this trial. I mean, well, before she was diagnosed with type one at the age of 15. She and her family fled here from Liberia. And I'm going to link up that story in the show notes at Diabetes connections.com. It'll be on the episode homepage. I'd really urge you to read that. But one of the problems with the vaccine trials was all of the COVID vaccine trials is getting enough people into them. I'm also going to link up more information on that and I'm going to come back after the interview and talk a little bit more about it. I know you want to hear from Helene. And we'll get to that in just a moment. But first diabetes Connections is brought to you by One Drop. It is so nice to find a diabetes product that not only does what you need, but also fits in perfectly with your life. One Drop is that it's the sleekest looking and most modern beater My family has ever used. And it's not just about their modern meter setup. You can also send your readings to the mobile app automatically and review your data at any time. Instantly share blood glucose reports with your healthcare team. It also works with your Dexcom Fitbit or your Apple Watch. Not to mention they're awesome test strips subscription plans, pick as many test strips as you need and they'll deliver them to your door. One Drop diabetes care delivered, learn more, go to Diabetes connections.com and click on the One Drop logo. My guest this week is doing us all a huge service by participating in one of the trials for the COVID vaccine. As we recorded this interview, Helene Cooper had taken the first shot. She is due for the second in just a few days as this episode airs. Helene is a New York Times Pentagon reporter, but she says that's not why she was selected. She explains it is because she lives with type one, she has asthma, and she's black. There are not enough people from any of those groups represented in any of the vaccine trials. I tried to cover a lot with Helene and as this is an ongoing story. She was gracious enough to agree to come back on maybe a couple of weeks that she's further along and share more about her experience. So here is our talk. Hello, and thank you so much for taking the time to talk to us about your experience. I really appreciate it. Helene Cooper 4:35 I'm happy to be here, Stacey. I've never been asked to talk to diabetics before. So this is kind of cool. Stacey Simms 4:40 Oh, nice. Well, I always like to tell guests like you that you don't explain the difference between type one and type two. We speak the language. We get it. I'm just so interested in so many of your experiences. But let's start with the COVID vaccine trial that I saw that article came to my attention. How did you get in the trial to be If you could kind of start from the beginning, Helene Cooper 5:01 okay, I was watching Dr. Fauci on testify, I think it was before the House. It was either July 30, or the 31st. And he said that all of these vaccine trials were getting underway. And he said they needed volunteers. And he rattled off the name of a website that you could go to to volunteer. I don't know why I did it. But I just went on to the website, and I filled it out. I said, I was type one diabetic, I put that I have asthma I did. I filled everything out and went on about my business. And then a couple of weeks later, I was in the Outer Banks. So it was like, it was somewhere around August 28, the week of august 22 23rd 24, something like that. I got a phone call on my cell phone from GW from a clinical research associate, who said I had been picked for the Maderna trial. And then I got nervous, because it's like, it's one thing when you fill out the questionnaire, and you think they're never going to call you and then they call, she said that I've been picked because I was type one diabetic, they needed to see if the vaccine was safe for people like me, I asked her a lot of questions. Because my first fear that a friend of mine had put in my head was what if they give you the vaccine, and then send you to like a high risk area and ask you to wander around without a mask or anything like that. And I thought, Well, I'm not doing that. I've been super careful for the past six months, because I think we heard pretty early on, I still remember that sinking feeling in my stomach back in February, and March where they started talking about the high risk people and seeing diabetes. And it just said diabetes, it didn't say type one or type two, which drove me crazy, because it's like, these are two different diseases. And do they mean but whatever. When I saw I had run into Dr. Fauci back in on March 8, when I was in the green room for a Meet the Press episode. And the first thing out of my mouth, I walk in, and he was sitting on the chair, and it's like, wow, look, it's like I recognized it from TV. And I was I immediately started talking to him about COVID, because that's what he was there to talk about. And I was like, Well, I'm type one diabetic and blah, blah. I was like, you know, what happens if I get it? And he was like, he kept. He wasn't beating around the bush. But he kept saying, you need to not get it. And I was like, Yeah, but what happens if I do get it? And he was like, No, you really need to not get it. And he wasn't he wasn't answering my question, but not answering my question. And I wanted to know like, okay, most people get it and there's a 98% chance they'll be fine. My like a 93% chance or what, exactly what, and finally, he just seems standing by them. He'd walked out the door to go on air, because we weren't in the same segment. He just stopped at the door. He was like, Look, I'm not saying that you're a dead duck, but she just really needs to not get it. Oh, God, I really need to not get this. So I have covered the Ebola pandemic in Liberia. In 2014. I didn't Liberia for a month during Ebola I and at the time, I understood then that I really needed to not get Ebola as well being a type one diabetic. So I put into place my Ebola protocols. I think I called them on March 8, where I was washing my hands all the time, I was staying away from I stopped touching people. I was I've been and I've been really careful. I wear masks. I only just now recently stopped wearing gloves everywhere I went that I had been doing that for a while. And nobody's come into my house except my mom, my sister and my nephew. And brother in law. I'm like, so I'm probably much more careful than most people are. Because I think we kind of have to be because there's so much we don't know, I'm just rambling at this point, not letting you ask any questions? Stacey Simms 8:41 No, it's wonderful. A lot to unpack there as Yes. So let me go back when you said there's not a lot of information about type one and type two, we you know, in the community, we're talking about that all the time. Helene Cooper 8:52 Yeah. One of the things everybody I've asked about it has said they don't because I went to my normal diabetic doctor, and I was asking her about this. And she said the problem they don't know. All they know is that the people who showing up in the hospitals and needing to be put on ventilators and leading and having severe reactions and get you know, and you know, getting really sick and dying. A lot of them tend to be diabetics, but then I asked, you know, are they type one are they type two, and they're certainly type two, but she seemed to think that they're type ones as well. And that's what this is based on. This is at this point. There's so much about Coronavirus that we don't know COVID-19 that we don't know. And so the whole high risk category for diabetic that has been determined simply based on the fact that these are the people who are showing up in the hospitals. Stacey Simms 9:46 So let's talk about the vaccine trial, get the call. Helene Cooper 9:49 I get the call. I freak out. I call my friend first I called my normal doctor but she's very super cautious and her response was like Why does it have to You. So I was like, Okay, I'll Park this somewhere for a second. And I called my friend, Kendall Marcus, who's an infectious disease specialist. Her response was immediate, she was like, vaccines are super safe, you should do it. And for Kendall to be just complete, like, usually she's cautious, too. And she's like, you got to be careful. But it was just complete. No, you should do it. And so I got a, you know, we talked through it. And she, you know, explained some very complicated sounding stuff about how they work because I thought they were going to be putting a little bit of COVID in me, and but she said that the modern no one was not that is messenger RNA is basically tricking your body into making antibodies by feeding you a little bit of mRNA, that makes your body think that it has COVID. So she was like, there's no chance that you could catch it from this, when there's no chance that you could give it to anybody from this. And so I went, I showed up for my appointment, it was on a Wednesday, they give you it's, you're there, I was there for three hours, they gave me a COVID test, the nasal swab, because if it comes back positive, you're not going to be in the truck, because there's no point of you being in the truck. They gave me a lot of time, they gave me a full physical, took blood made me take a pregnancy test. There's all this stuff. And towards the end, then, is when I got the shot where the doctor was like, Okay, you've been randomized, you know, the blind woman is like the double the unblinded person is coming. Because of course I hadn't read they told me all of that in a sheet that they sent me that read talking about that, which is my own fault. And then the nurse came in with the vaccine, and she was not even looking at me and as a reporter, I'm, like, filled with questions. It was like, Are you kidding me? Like, is that what is that? Is that the placebo? Is that the vaccine? Which one? Is it? Going through all of this? I want to make sure I you know, I'm getting the vaccine, I know placebo, and she was just like, you need to just, you know, she said nothing. Stacey Simms 12:00 Well, yeah, if anybody else knows besides that person, then it can be, it can ruin the whole study! Helene Cooper 12:07 I got so much s--t from people when I put that in the article that I was harassing the woman about this dude, like you're violating the sanctity of the study. But it's just like, you kind of want to know if you got the placebo vaccine. When you posted your story in my facebook group for the podcasts. People were very well they Yeah, not pleased. No. Stacey Simms 12:30 But I can tell your personality, right? Yes, Unknown Speaker 12:33 you can laugh. No worries. Stacey Simms 12:36 One of the questions that actually came up in the Facebook group was whether you were the only person with diabetes in the trial. Now obviously, you don't know anybody else. Helene Cooper 12:42 But it was. I am not because ever since I wrote that story I've gotten a lot of people have tweeted me, including type one diabetics were in the trial who have been and there's this one guy who's been so great, because he's like, let me tell you what happened to me I'm in the same type of trial. It's like his was with Pfizer. I think mine is butchering it, but it's the same technology. And he was like, the first shot felt totally normal, just like you and then the second shot, my sugar level shot up, I was sick for 36 hours and then it went away. And he was like, but it was just as if I had you know, how you get when you're diabetic with a flu, your sugar level goes high and all that kind of stuff. I was like, that means you got the vaccine. And he was like, well, be careful. You know, because just the cuz you sound like you don't think you're You got it, but I didn't I didn't think I got it when I got the first shot. And the second shot was like, Huh, so now I'm worried about the second shot. Stacey Simms 13:32 Well, I was gonna ask you, did you have any kind of reaction blood sugar wise to the first one? Nope, nothing. I mean, Helene Cooper 13:37 just some aches and pains. Um, some muscle joint, which I don't, I think was because I was camping on the beach. And I got like the the I got the stuffing pounded out of me by these ferocious waves was Stacey Simms 13:51 curious if you asked your friend who said what if they give you the vaccine, and then they want you to test it by wandering around a hotspot? I can't imagine that's actually part of any clinical trial. Helene Cooper 14:02 I would think wouldn't you do that in phase one? It's not part of phase three. But what's the What is it? Wouldn't phase one be remember? Did you see Contagion? Stacey Simms 14:14 Right. But she did that on her own? Helene Cooper 14:16 Yeah, but they got it tested some kind of way. How are they going to find out if it works if they don't see if it works? If they don't expose people to it? Yeah, shape or form. I mean, he was getting at. I got a lot of grief for that for putting that in the story. But I thought that was a very legitimate question to ask. And as a non medical person, that's what you're gonna wonder. Stacey Simms 14:42 Okay, I'm gonna jump in here for just a couple of minutes. If you are wondering about that point yourself or maybe you are screaming at the two of us in frustration. Here's the real deal about how they do vaccine trials. Once participants get a vaccine will the researchers intentionally expose them, right? That's what we're talking about here. Will the researcher send a lien into a crowd of people as in the movie Contagion? Which, if you haven't seen it, it's a 2011 movie. It's all about if you haven't guessed, it's all about a pandemic. There were scientists who worked on that movie and made it very realistic and therefore quite terrifying. But to the question of did they send people who got the vaccine out into infected crowds? No, of course not. That is unethical. I did a little bit of looking into this. And so here's what most of the publications say, because there are still no effective therapies to prevent someone exposed to COVID-19. from falling seriously ill intentionally exposing patients is a no go. Instead, the idea is to observe the number and severity of naturally occurring infections. Among the many thousands of volunteer participants who receive vaccines, or placebos. If there are notably fewer infections, or milder infections among the vaccinated group, that's how they tell the vaccine is working. So I want you to take a moment and clarify that and we will go right back to my talk with Helene in just a moment. But first, diabetes Connections is brought to you by Real Good Foods. We've been enjoying Real Good Foods for almost two years now. And I got to tell you, I think with all of their new products, everything's great. But the pizza that we started with is really still our favorite. And we got an air fryer A while back. And that has really taken stuff like this to the next level. Although my I shouldn't say that because my husband still prefers to heat up the pizza, in a frying pan, or saucepan, kill, just heat it up that way. I don't know, maybe he doesn't wanna get the air fryer out. But to me, it's crisp beer, it tastes better, one less pan to wash at the end of the day, you can find out more about where to buy Real Good Foods. Our whole line is available in Walmart and local grocery stores. You can also find everything online, go to Diabetes connections.com and click on the Real Good Foods logo. Now back to my conversation with Helene, where we are finishing up talking about that movie Contagion. And obviously, that movie was worked on by experts. Stacey Simms 17:14 We've all heard all those stories but I haven’t watched it since COVID. Started, I can't bring myself out Helene Cooper 17:16 a good No, you gotta go do it. I did it. And I like it'll, it'll, it'll make you even more careful. I watched it in March. I was like, Oh, hell no. Stay. Oh, Stacey Simms 17:30 I will. Alright, I'll have to go back and look at that, then what happens? Is it a second shot? And then you're done? Or do you? I mean, they'll follow you. But are you done? Not Helene Cooper 17:38 that they follow you up? Um, there's an app that you have to answer. The first week, the app was making me answer questions every night, take my temperature and all of that. And then it's gotten bored with me, and it stopped now. So I haven't gotten any good. So then you have the second shot. And they follow up with you. They're supposed to call you every week. And you answer questions on the app, and they just track you. And so presumably, it's a two year study. But they're shooting for, you know, a few months. Yeah, very quick. Stacey Simms 18:11 And because they're they wanted to look at people specifically with diabetes. Are they also asking you to track blood sugars and things like that? Or they're just looking for safety? Helene Cooper 18:19 or remotely related to but which I find curious, because that's like, they have not the questions or fever, body aches, pains and all of that they didn't that none of the questions are because the questions are all for the 30,000 people. So they're no special. I'm not in a special diabetic subgroup. But Stacey Simms 18:37 it's interesting, because you are in three subgroups, diabetes, asthma, and being a black person. Yeah. So as you said, they were looking for people, you know, do you know if they were successful trying and this is gonna sound? I mean, I asked this question they were looking for Helene Cooper 18:53 they I don't know the answer. They at GW moderna paused its trial to expand it because at first they weren't getting enough black people. So they went and cast the net, even wider. And I think they believe they've now got a representative sampling. The people at GW said that they felt that the sampling that they were doing reflected the city of Washington DC, which means then that they had a high black population. Stacey Simms 19:18 So listen, you have a job that I assume you cannot do, only from home. No, I can't Pentagon is your beat. Helene Cooper 19:25 I'm home a lot. And the Times went to, you know, to send us home back in March, march 13. And they're really good about that. And I do a lot of my job right now I do at home, but it's so different. It's harder, and I do have to go to the Pentagon and I do meet sources. And so I wear the tie I was issued and 95 masks by the times and you know, full, you know, kit, full kit and 95 mask. And when I go to work, like during the protest, for instance, I did some a little bit of that went to the Pentagon when I go to meet for sources and all of that Especially when you're at the Pentagon where you have to wear a mask in the building. A lot of people don't wear masks inside their individual offices. I've been in to meet with top generals at the Pentagon who have you in the office, but they're not going to wear a mask, they will take your temperature, but I don't think I think that's pointless. Yeah, test your temperature. But once you're inside, and then they'll always say, Oh, don't you can take off your mask if you want, but I never do. And I, that's when I wear that. And 95 because that will protect me, not just because you wear a mask to protect other people primarily, but the N 95 will protect you. Even before COVID I'm curious, you know, a high powered career very busy, but also very much in when you work at the Pentagon, you're not fooling around, I'm curious if you would share a little bit about how you manage type one. Sure, your job, you have a son who's type one, so you know that it becomes like brushing your teeth, it's just something you do. I'm testing myself, you know, eight to nine times a day, I'm taking multiple shots a day. And that's just something and I've gotten really used to, I test in front of anybody, I don't wait, I don't like you know, I don't go, my sister laughs at me because I take my shots through my clothing, because sometimes you can't, you know, the needle, go through your clothing. And if you're on an aircraft carrier in the middle of something, you don't have time to go find a bathroom to you know, whatever. And it's a long time ago, one of a doctor, Dr. Joshua barzilay, in Atlanta, when I was I just moved down there in my 20s. And he said, you know, you have a choice, you can make the diabetes conform to your life, or you can make your life conform to your diabetes, and I made a choice, I was going to make the diabetes conform to my life. So I've done everything I was embedded in with the third infantry division for the Iraq war I was I've been, you know, with all special ops groups, you know, behind enemy lines, I do all of that kind of stuff. And I just I keep a tight rein on my sugar levels. But there plenty of times where I have problems, you know, I've had insulin reactions, thousands of insulin reactions there. Because if you keep in control, you're very close to low, right? You know, if you're keeping between 80 and 120. It's, I've never gotten to the point where I have figured out how to keep between 80 and 120 and not have 60s, you know, you're running around at 300 400, then yeah, you're not gonna have insulin reactions. But if you're keeping in control, then you're gonna hit lows. And so I hit I hit lows, lucky in that I still feel them. I can tell when it's coming on. I carry sugar pills around with me everywhere. They're sugar pills. In every pocketbook. I have their sugar pills in my fanny pack their sugar pills everywhere. And that's sort of how I deal with it. And so I feel fine. I've had it for what I'm 54 years old now. And I got it when I was 15. So that's a long time. I haven't had any of the my kidneys are fine. My You know, my eyesight. I can't see for s--t. But that's not because I mean, Stacey Simms 23:11 we're all wearing glasses. Helene Cooper 23:12 Yeah. And everything so far, knock on wood looks okay. But it's something that you just you just deal with you. I mean, which you know, I assume because you've got a son who's just dealing with it. Stacey Simms 23:23 Do you use any tech? Or have you seen either technology insulin pump CGM, stuff like that, not your style. Helene Cooper 23:28 I don't like the pump. I tried the pump. And I didn't like it. I tried the continuous blood monitor. And I didn't like it. So I still I use pens. I have a mantra for my long acting, and I'm on human log for my short acting. And then I have the one touch you know, and I it's five seconds. And it's really easy. My doctor is so pissed at me because she's been after me for two and I won't do it. And every year she's like, Look, it would be so I tried to Dexcom and I hated it. It's waking up in the middle of the night and striving you not. And so I stopped after one month. And so she's I mean, I'm probably gonna fold at some point, but I haven't pulled it yet. Stacey Simms 24:06 Well, I wouldn't call it folding if you want to try it jump into the group or I know you know what you're doing. But there's some advice on how Helene Cooper 24:12 to not make it drive you up a frickin wall. Because it? I mean, yes. Oh, I would like probably that advice, because I think at some point, I'm gonna have to just do it. Well, that's another story. Stacey Simms 24:22 Yeah. Tell me about your diagnosis story. You were diagnosed at 15. Helene Cooper 24:26 Yeah, I my dad was diabetic. And for some reason, I think he was type one. I don't remember his type one or type two. Because he died in 1985. And I think he was type two, but he was taking insulin regularly and fairly aggressively, which makes me think maybe he was type one and we just didn't, I don't know. Stacey Simms 24:46 So yeah, it's at that time, too. They didn't know about Lada and all the other things. Helene Cooper 24:50 He was diagnosed when he was like 40. So that's, I think that's why they But anyway, so that's a whole nother set. Let's not get in. Let's get into what I know. Anyway, My mom, as it turns out, now it's type two. I'm from Liberia, West Africa. And my family had moved here in 1980. I was living with my dad, my parents had split up. My mom was back in Liberia for a year and we're living my sister and I were living with our dad in North Carolina and Greensboro. And I started running to the bathroom and being thirsty all the time. I was like, 15. Then I was a junior in high school, and I started dropping weight. I was skinny. But then I got really skinny. But I thought I was but I was eating. I was so hungry all the time. And I was convinced I had blown up because I was eating like seven meals a day, and horribly hungry. And in the middle of night, I was going downstairs and drinking apple juice and eating food. And I was like, I have to be so fat. Why am I eating like this? And my mom showed up to visit us and she came to the house Liberia and she my dad came to the school to surprise me because we didn't know my mom was coming. And they came to the school to surprise me. And they got me out of my class. And I go running. I was like, why are you living with me? And he's not noticing because you're seeing the person every day to the doctor, and I was diagnosed and I was ended up in the hospital for a week in pediatrics. At 15 I was very outraged that they put me Yeah, true. Yeah, Stacey Simms 26:27 I bet but they're also at 15. You have no sense of your body, right? Your thumb. Oh, yeah, I'm eating Helene Cooper 26:33 That's amazing. Yeah, I was so convinced that I was a pig. I was like that it was like all whatever. But anyways, so that's when, and so I remember they put me on this is so far long ago is like the 80s. They put me on these three different types of insulin to start x rapid, semi tard, some other top monitored, and I was having instant reactions and then shooting up and they were trying to I would take one shot in the morning. And that was it. And I couldn't get it under control. I was I was hungry all the time. Because they had they started me on too much insulin. And so I was hungry and eating. And it was just really it was bad. And I was only testing that's back when you would test with urine. Yeah, this is all before, this is a long time ago. And so I took my insulin, but that was all I would do. I would take my insulin in the morning, but then I ate whatever I want it. And so I was completely out of control. And it took years for me to get my act together. I mean, I went through college, you know, I feel like on a wing and a prayer, I took my insulin. So I never got went to the point where I didn't take my insulin, but there was a lot of but I was eating whatever I literally whatever I want it. And it wasn't like it was that much. But it was like you need to be 10. And I wasn't testing I would go like here and test myself. And then when I got out of college, I started a job in Providence, Rhode Island. And I was working out a lot then. So things my sugar level was probably much better in was lower, but I was having insulin reactions all the time. And then when I moved to Atlanta, and I met this doctor barzilay. And that's when he told me you can do this, or you can do that. And what he did for me that was the most important thing was if you are comfortable with taking multiple injections a day, and with testing yourself all the time, you can do what you want. And that was the that was the breakthrough for me. Stacey Simms 28:30 Right? Well, somebody gives you a plan of action, rather than saying, here's the older insulins that really don't work to your life. Here's a man. No, you followed that. Helene Cooper 28:39 Yeah, better. No, it was great. Because once it's like, once I realized it was like if I know a knowledge is power, he if you're willing to take the shot, it's nothing I don't, it doesn't bother me. And testing my blood sugar doesn't bother me. And if he sees like, if you're willing to do that you can do you can live the way you want to live. So it's great. Stacey Simms 28:59 Before I let you go, I'd love to talk a little bit more about the clinical trial. Okay. very beginning of it. Are you so far happy that you did it? Helene Cooper 29:07 Yeah, I'm happy I did it. I want to be part of you know, I want to be part of the solution. No, I've none of us want to keep this going for it's like, we're all shut in and we want it over to right. And it's at some point with the you know, we're gonna have to take a vaccine anyway. So yeah, I'm glad I did it. Whether it's a placebo or a vaccine, I'd be if I dropped dead from it. I won't be glad but that I'm gonna be glad I did it. Right. Stacey Simms 29:33 Well, there was a lot of skepticism. Yeah, people of all political persuasions, yes. races of all disease states. I mean, let's be clear, not singling anybody out here. Helene Cooper 29:43 Any message for people listening who may have an opportunity like that to take part in a clinical trial and are hesitant follow the iron. You know, that's I'm I'm a big believer in science. So that's, I'm divorcing myself from the politics. I you know, the whole vaccine by election. De that's not even going to happen. That's irrelevant, you know, even if they have somebody, at most be an announcement, but that's not going to mean anything. And that's meaningless, you know. And so just stick to the just follow science. If we follow science, we'd be better off on COVID to begin with, and science is certainly what's keeping me alive. So, Stacey Simms 30:19 next step for you is the second part of the vaccine. And then maybe we can follow up with you in a couple of months if that's okay. Happy to wonderful Helene Cooper 30:28 and I'll be complaining that death they definitely gave me the placebo. Stacey Simms 30:32 And I can give you my review of contagion. Helene Cooper 30:34 My re review. Okay, you if you watch contagion, I will come on your show again. Alright, we'll do I've Stacey Simms 30:39 seen it, but it's been a very long time. So we watch it. Oh, you Unknown Speaker 30:43 won't sleep that night. Stacey Simms 30:44 I don't sleep now. Helene, thank you so much for joining me. It was a real pleasure and so interesting, I appreciate it. Helene Cooper 30:51 It was fun talking to you, Stacey. Unknown Speaker 30:57 You're listening to Diabetes Connections with Stacey Simms. Stacey Simms 31:03 More information about the Vaccine trials and about Helene story at Diabetes connections.com. Just click on this episode, click on the homepage for it. There is a transcript we do that for every episode starting this year, really excited about that people seem to really like it. And I started that in January of 2020. And I'll continue to do that. I'm also going to link up one of the many articles about the difficulty that scientists have had and researchers have had in recruiting black volunteers and other people of color to take part in these trials. And something to keep in mind is that the National Institutes of Health has suggested minorities be overrepresented in the testing at rates that are doubled for their percentage of the US population. So there's a lot more information on this as to why and how historically black medical institutions are getting involved. I thought that was very important. You know, of course, we're looking at this through the lens of type 1 diabetes. But this is something that as you listen, I think it's important to be aware of as well. And boy, do I appreciate her coming on and sharing her story. the good, the bad, the ugly, she got a lot of pushback, as you heard for that article. And I will follow up in a couple of weeks. And I'm assuming she will have the same amount of candor. Next time we talk. Tell me something good in just a moment. But first diabetes Connections is brought to you by Dexcom. And you know, we started using control IQ that is the Dexcom G6 Tandem pump software program back in late January of this year, and we're doing less work for better results. I'll say that again. less work better results with diabetes. And I say we but it really is all Benny at this point. I mean, he's 15. And you know, you think about when we first got the CGM just to show up on the pump. What was that 2017. And that was a cool feature, but it didn't do anything right. But that secret sauce in the control IQ that keeps Benny in range so much more. It really lightens the burden. I think that's the best way to describe it is a one C has come down it was already really good. We're just thrilled. Of course individual results may vary. To learn more, go to Diabetes connections.com and click on the Dexcom logo. In Tell me something good this week. We have some fun things to share diversities and birthdays. A very, very happy birthday to the Dooley family and I'm going to wish a happy birthday to the whole family because parents Christina and Greg celebrating with their triplets, Mia, Isa and Max. And I cannot believe that these kids are 10 years old. You may know the Dooley’s better. As the Inspired by Isabella family. Isabella was diagnosed with type one as a toddler. And she and her family have just been a huge part of the diabetes online community of friends for life. So many things. And boy, these kids are just knocking it out of the park, each with their own personality and strengths of course and different hobbies. But they all really seem to come together to support Isa. Christina is one of these very creative moms. She does all the stuff that I never did or dreamed of doing. You know very crafty, very, very fun with costumes, lots of lawn stuff going on since they've been stuck at home I mean this 10th birthday. I'll see if she'll put a picture too in the Facebook group but you know number 10s all over their lawn and big cutouts for the kids hobbies. So a big Happy Birthday to the Dooley triplets to Mia Isa and Max. A big congratulations and a big diversity to Dennis Goldensohn. Dennis is a longtime listener and I first talked to him he's been on the show. I talked to him about reaching the age of 65 when Medicare kicks in, and we talked when he had just finished his first year on Medicare so I will link that up but I mentioning him now because he is celebrating 50 Two years of type 1 diabetes. And he posted in the Facebook group he has that Lilly medal that they give for, you know, for big milestones. And he wrote, Hey, everybody, thanks because he was getting a lot of really nice comments about it. The objective here is not to brag about an award, but to say yes, it is possible to live with T1D and live a productive and long life. Now that is worth bragging about and what is really possible lead by example, Dennis is also very active in JDRF. I was gonna say his local chapter, but I think we're all one chapter now in North Carolina. So he's in the Raleigh area, I'm in the Charlotte area, but he's also active as a mentor. And I really appreciate it. So congratulations, Dennis. Here's to many more healthy years. And thanks for sharing that with us. My episode last week with Jeannie Martin, who was diagnosed in the 1950s and has lived with type one for 66 years got a lot of attention. And it was it was just very well received. I mean, why not? She's fantastic. And I heard from other people who have lived with type one for a long time, who shared their stories. And Ron Doyle is one of those. He was diagnosed at age four in 1959. I am living life well. I'm a full time employee at age 65. I'm going to retire in my 70s. My Doc's told my parents, I would likely be dead before age six, but it's been a great life. And he writes, I still have all my toes at other important extremities. And Ron also shared I showed him an email back and said, Hey, thanks so much. Can I share this? And he replied, absolutely. Most people do all the good news they can get. He works full time as an IT guy, and he has a monthly radio show on tech. I'm going to link this up because his podcast, he says is tech for us gray hairs like me, I like to stay busy, Ron writes, and I will link up gray haired tech because I don't have any gray hair yet, Ron, but I probably could benefit from your podcast. And I'll put that in the show notes as well. If you have a good news story, a diversity of birthday something cool, you've done a big milestone you know, a marathon or you've you've got up Mount Everest, whatever you want to share with the community. Just reach out and let me know you can always find to be Stacey at Diabetes connections.com. Or you can post in the Facebook group every once in a while I will ask for more good news stories. I love hearing from you. Thank you so much. My new segment innovation is all about tips and tricks, listener suggestions to make life a little bit easier with diabetes. And sometimes the innovations are big clinical trials approvals, that sort of thing. This week, I want to talk a little bit about organization with a great bit of advice I got from Susan Wiener. She is very well known in the diabetes community. She was the 2015 Diabetes Educator of the Year she's a registered dietician nutritionist, a certified diabetes educator, she's, she's the best I love Susan, I'm lucky enough to call her a friend. One of the things that she told me and she has a great book too. It's called the complete diabetes organizer. And well, that book has so much advice in it, we're just gonna focus on one little thing here. And that is being able to see what you've got in terms of diabetes supplies. So if that means you're taking the stuff out of the box doesn't mean we know we get pump supplies or Dexcom supplies or even insulin, it's in a box that you cannot see through. So her advice is to put it in a clear plastic box so you can see from the outside. Or if you really can't tell at least Mark what it is on the outside, you know, tape a piece of paper and use a sharpie and write on it or use a clear plastic shoe bag, you can put individual supplies there. I've seen people put snacks in it so the kids can get what they want, you know carb counted, snacks are separated, you know, however you want to do in your household, but everybody can see. And the one thing I would add to that is whatever you do if you're taking your diabetes supplies out of boxes, and I do this because I also use Gosh, speaking of organized, here's a little plug I use the T1Dgear, folks, there's a really wonderful small homegrown business, and they do 3d printing. And I'll link that up in the show notes as well but I use their stuff a lot. But you have to take everything out of the box, you've got to keep the labels if you need the lot number if you have an issue if you need the serial number of your Dexcom you know all this stuff. So if you don't have room to keep the actual boxes, and you're not a big like Ripper offer, a lot of people hate to keep those little strands of paper, you know, like I'll just shoot I'll rip off the front where it has all of the information or cut it out neatly. I don't cut anything neatly, I clawed off like an animal. But you could also take a photo, take a picture with your phone have the lot number and all of the information. And that way you'll know what goes with what and that way if you have to call in a Dexcom replacement or you have a box of pump in sets that are not working correctly. You'll have the information in front of you and you can call it in it's all well and good to get organized. But if you can't see when you're running out of something, and then I know the people with little kids don't get it yet, but when your teenager uses the left decks calm and doesn't tell you and leaves The box in the storage area, right or uses the last pump inset, and just hasn't said anything. I didn't realize it was the last one. That's where the yoga and meditation comes in. So you can use these tips maybe to avoid those kinds of situations. And thanks again to Susan Wiener. I'll link up that episode to Gosh, I think it's about two years, maybe longer. Now, since we've talked, it was a great episode about getting diabetes organized. I love her. Thank you so much for listening to this episode of Diabetes Connections. We have a lot of great stuff coming up. In fact, I have so much, I might have just more bonus episodes. I don't know I'm sifting through personal stories and sports stories and technology stuff. It seems like towards the end of the year, you know, we take a breath in August and the beginning of September, and then it's just a race to December. And that's how it's going this year. So I'll keep you posted. But please join the Facebook group. That's where I put most of my questions for you and pulling in that sort of stuff. Thank you to my editor John Bukenas from audio editing solutions. Thank you so much as you listen, I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself. Benny 41:11 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All rounds avenged
Jeanne Martin was diagnosed with type 1 diabetes at age ten, in the 1950s. Technology was very different back then, of course, but so was the medical community's reaction. Jeanne was told she would never have children and if she did, she wouldn't live to see her children grow up. Today, Jeanne not only has a daughter, she's also a grandmother. She shares what she’s learned along the way. We also talk to Jeanne's daughter Jessica, who talks about growing up with a parent who has type 1. In Innovations, find out why when it comes to keeping track of long and short acting insulin, a CDE says invest in rubber bands. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ---- Other episodes with amazing people living long and happy lives with T1D: Richard Vaughn was diagnosed in 1945 Judith Ball was diagnosed in 1941 ---- Check out Stacey's new book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes. By Real Good Foods real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:24 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:30 This week, Jeanne Martin was diagnosed with type one at age 10. Back in 1955. She's had to fight a lot of doctors along the way, including one who told her she would not live to see her child grow up. Jeanne Martin 0:45 And my reaction was I told my husband that guy can go walk up the street and get hit by a bus tomorrow. I'm not going to go along with that. That's was my reaction. I got mad. I didn't buy into it. I didn't get depressed because I Just thought he was full of baloney. Stacey Simms 1:00 Jeanne was right. She's now a grandmother. And she shares what she's learned along the way that made her question and stand up to doctors like that. We're also joined by her daughter, Jessica, who shares with like growing up with a parent who has type one in innovations this week why a diabetes educator says invest in rubber bands. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of Diabetes Connections. I am so glad to have you here I am your host, Stacey Simms, and we aim to educate and inspire about type one diabetes by sharing stories of connection. My son was diagnosed with type one right before he turned two that was back in 2006. My husband lives with type two diabetes. I don't have diabetes. I have a background in broadcasting and that is how you get this show. I spent 20 plus years and local television and radio news. I've been doing this show for more than five years now and I don't remember Ever putting the topic of the show to a vote, but I did that for this week, I put up a poll in our Facebook group, it's Diabetes Connections, the group, I have a couple of interviews. I'm usually a few weeks ahead with interviews in the can. And I asked the group to vote on which interview they wanted to hear next, and everybody chose Jeanne, I cannot say blame you. I am always amazed at the strength of these people, the stories of people who are living well with diabetes for 50 60 70 years. I mean, you think about it, before blood glucose meters were a thing. I mean, they weren't available to the 1980s. And this was a time that we're talking about with Jeanne before some doctors would even know about different types of diabetes. I was shocked to learn that that for a very long time, it was just diabetes and you treated it with a one shot a day, or then they would say juvenile diabetes. And you couldn't possibly have that if you were an adult and you're just on and on. And if you're new to the show, I've done several interviews with people who were diagnosed in the 50s in the 40s. And they've lived with type one for 70 years. And I will link those up with this episode. You can also search with a very good search engine at Diabetes connections.com. We're up to more than 320 episodes. So if you want to Google keywords like living long or 60 years with diabetes, that sort of thing. You can find that on the website. Before I get to the interview. I want to read something that was sent to me it's actually a review on Apple podcasts. I'm really bad at asking for reviews and keeping up with reviews. If you want to leave one up man, I would love it. Whatever podcast app you listen on, there is a way to leave a rating or review. This one came in from Shelley. Now her name is not on this but I know who this is because we featured her. We featured her son in a recent show. So Shelley wrote I love this podcast so much. I learned so much from listening especially enjoyed the tech episodes with Dexcom and Tandem etc. As the mom of a newly diagnosed four year old. I have found much needed encouragement and tips for helping and thrive with diabetes. Also, cannon was excited to hear you mention him swimming in the lake. Surely thank you for writing that. Yeah, we talked about cannon she had sent a picture into the Facebook group about him burning off the glucose. She said swimming in the lake pan swimming is one of those ways where Benny used to just those little kids just swim with every part of their body. They used to go low all the time in the pool. It's a little bit different. Now you know, a 15 year old does not swim like a four year old. But surely thanks for sending that review in. It's always nice to get reviews like that. And if you like the show, truly the best thing to do is to tell somebody about it tell somebody in the diabetes community. That's the best way to get the word out. All right, Jeanne and her story in just a moment but first diabetes Connections is brought to you by One Drop, getting diabetes supplies is a pain. Not only the ordering and the picking up but also the arguing with insurance over what they say you need and what you really need. Make it easy with One Drop. They offer personalized tester plans plus you get a Bluetooth a glucose meter test strips lancets and your certified diabetes coach, subscribe today to get the test strips for less than $20 a month delivered right to your door. No prescriptions or co pays required. One less thing to worry about. not that surprising when you learn that the founder of One Drop lives with type one, they get it One Drop gorgeous gear supplies delivered to your door 24 seven access to your certified diabetes coach, learn more, go to Diabetes connections.com and click on the One Drop logo. I feel like I've known Jeanne Martin for as long as my son's had diabetes. That's almost 14 years. And that's because while I have never met Jeanne in person, I have been friends with her daughter Jessica Graham for even longer than those 14 years. We met when Jessica was in public relations here in Charlotte, and I was working as a health reporter for a local TV station. And later we were on the board of our local JDRF chapter together. I cannot believe it has taken me this long to share Jeannes story. She is just incredible. I was able to talk to Jeanne and Jessica, about living well with type one for 66 years. Jeanne and Jessica, thank you so much for joining me. I've known Jessica for so long, but I don't know so much of this story. I'm so excited to talk to you both. Thanks for coming on. Jeanne & Jessica 6:17 Thank you for having us. You're very welcome. Stacey Simms 6:20 Jeanne, I got to start with you. Because you have lived with type 1 diabetes now for more than 65 years. Let me just start out by saying How are you? How are you doing? Jeanne Martin 6:30 I'm doing great. I think I'm doing just fine. Stacey Simms 6:35 What do you mind if I ask what technology you use how you manage anything you'd like to share? Jeanne Martin 6:40 Well, I checked my blood sugar with little contrast test strips. And I shoot nice. Well, I take shots Stacey Simms 6:49 you can say brands, we’re all friends here. Jeanne Martin 6:51 Yeah, I say I shoot myself four times a day. I see my doctor every six months. Well, that's about it. Jessica Graham 7:01 She does not use a pump or Stacey Simms 7:04 any of that. No, if you don't mind, let's go back. Do you remember what it was like when you were diagnosed? You were 10 years old. Do you remember anything about that time? Jeanne Martin 7:13 Oh, yes, I do very much. We lived in a very small town, not far from the Mayo Clinic. We just lived there a couple years. My friend's mother mentioned to my mother that I was drinking a lot of water and going in the bathroom a lot and she thought maybe my mother should have me checked out. So we did in the small town with the with the doctor there said, Well, she's either got diabetes or TB. Well, I didn't know what diabetes was. And I knew what TB was. So I thought, Oh, please don't i don't want TB. I'll have the other and so so the little basically country doctor didn't know what to do. So anyway, so they sent me to St. Mary's, which is public Have the Mayo Clinic. And they tested me and for sure that's what I had. So I had to stay there. I think it was five years. I didn't do all this stuff with the diets. And they wouldn't let me leave until I could get myself a shot. But I was active. And I don't really remember too much about it. The doctor were very nice, and everybody was very helpful. And back then you had glass syringes and needles and you couldn't check your blood sugar. You had to pee on the stick, and they sent me home and my mother had to weigh everything, and I had to watch what I ate. But other than that, that's about it. Then I just basically went on with my life. Did you Stacey Simms 8:46 really? Were you able to jump back in go to school, do all the things you wanted to do with that time? Jeanne Martin 8:51 Yeah, I did. Stacey Simms 8:52 Mm hmm. It seems like such a different time, right. I'm just trying to think, Jeanne Martin 8:55 Oh, yeah, it was a very different time and when I first got married, Remember, I had to boil my syringe once a week, we had to do that. And I was still peeing on a stick. And I only had one shot a day back then all through, you know, school. And of course, I didn't want to tell my friends when I was in high school. That's what I had. But of course, my mother told my best friend's mother. So everybody knew it, but I didn't know they knew it. Oh, wow. Stacey Simms 9:25 Anyway, moms are sneaky that way. But yeah. The you know, the regimen was so different. You had one shot a day, right? And then you had to kind of eat around that shot. Did you have problems as a teenager? Did you do remember, you know, any issues or were you able to buy I would assume by routine and by figuring out what to eat, you know, how did it work out for you? Jeanne Martin 9:47 Well, I didn't run into any problems when I was a teenager. And I do remember I don't know how I would go not very often, my friends and I and I would have hot fudge sundaes. Believe it But other than being bad like that, I lived at home and my mother, kind of watch what I ate. And I didn't need a lot of sweets. You know, it was my mother's management, not mine. And I came home for lunch all during school. And I didn't start taking more shots until about, oh, I don't know, maybe 45 40 years ago. Stacey Simms 10:23 Yeah. It's so different to think about because we're talking about I mean, if doing my math correctly, you were diagnosed right? In the early 50s 1950s. Jeanne Martin 10:30 Right? And 1955 Stacey Simms 10:33 Yes, so the routine was completely different. I mean, as you're listening, you got to understand not only one shot a day, but no blood sugar home meters, right. You're still checking. How often did you check done by check? We mean, pee on the stick. Jeanne Martin 10:50 I probably did it maybe once a day. I honestly don't remember that. Not a lot. It's very different now. And somehow, I think my pancreas has always worked a little bit because I don't take much insulin. And I'm very, I don't want to say touchy with it, but I don't have to take a lot. And when I was diagnosed at the Mayo Clinic, they said that yes, my pancreas was working a little bit. That's what they thought. And I still think that's the case because I just don't need much insulin. And and I watch what I eat. I do, but you know, I'm not 100% I mean, I do have cookies, Stacey Simms 11:30 but you're told us you were eating hot fudge sundae. So the cat is out of the bag… Jeanne Martin 11:35 That was in my youth. You know, I do take care of myself. Now. I check myself four times a day, shoot up four times a day and I watch myself better now because I know better. I'm more wiser. Stacey Simms 11:48 I'm curious to growing up. Did you know anybody with Type One Diabetes and if not, when did you meet somebody with no, Jeanne Martin 11:55 I never knew anybody. I didn't know anybody with any kind of diabetes. It wasn't in my family, so none of my relatives had it. No, during high school I did not know, as an adult. I have met very few type one diabetics, I know they're out there, but very few. And it's kind of fun when I do just to kind of say, Well, you know, compare notes, so to speak. Sure. Stacey Simms 12:21 Just let me ask you a couple of questions. Because the perspective of a kid, you know, we're all adults now. But a child growing up with type one in the house and the type one is in the parent is not something that I've talked a lot about on the podcast. What's your earliest memory of your mom and diabetes? Jessica Graham 12:38 Well, I don't ever remember it not being there. And that was more because I worried about her than it was her. There was never literally and I'm, I mean, this literally, there was never a day when my mom said, Oh, I don't feel well or Oh me, you know. My sugar is off, or I just don't feel good today, never. And so it was nothing that she did. I just knew that if mom started acting funny, I needed to get the orange juice. So I remember that I never had a problem with shots. And I think that's because I always saw you give yourself a shot. So it was just, it was always there. The other thing that I remember is that I was always told that it skipped generations. And so I do remember I don't even know if you remember this. But I remember at one point when I was little, I told mom that I didn't want to have kids until there was a cure, because I didn't want my kid to have type one. And I she got really mad. My mom never got mad. But she got upset at that and told me that was absolutely you know, the wrong attitude to have and that she had a great life and it didn't have any impact. And so that was the end of that but it was just always there. So just always a part of life. Jeanne, I'd love to hear your perspective. On when Jessica who now has a I want to say a tween a teenage Yeah, yeah. just turned 13 Yeah. Wow. Stacey Simms 14:07 I want to hear your reaction Jeanne to when she said that! Right back to Jeanne answering that question but first Diabetes Connections is brought to you by Real Good Foods. True story from my house. Benny came downstairs the other night, open the freezer door, looked in it close the door and said who ate the mint chocolate chip ice cream. And I had to say it was the I finished it off. Sorry, Benny. But they're Real Good Foods. Ice cream is really good. We had a vanilla chocolate and mint chip this last time I promised him I would buy more and I have to get the peanut butter kind as well. We haven't found the ice cream yet in our grocery store freezer so I get that online but our grocery store carries a lot of the meals and they are so good and super easy and basically just heat them up. If you have an air fryer. It's even better They have everything from pizza to breakfast sandwiches to bowls, these new bowl meals that are really nice entrees. Find out more, check out that mint chocolate chip ice cream for yourself. It stays frozen. They they package it up the right way. I was worried about that, but no need to worry should have known. Just go to Diabetes connections.com and click on the Real Good Foods logo. Now back to Jeanne answering my question about her reaction. When Jessica told her she was really concerned about having children. Jeanne Martin 15:33 Well, I didn't want her to dwell on it. And I didn't want her not to have kids. You know, it's so much more advanced nowadays. And there's so much more that they can do. And I always do hope for here. I mean, I've been hanging on that for a long time, but you never know, one of these days. No matter what your problem is. You just have to get along and do the best you can and get along with your life and not dwell on it. And I've never dwelled on it. Stacey Simms 16:02 Well, I'm curious too, because now we know and I've heard that too. it skips generations. We know it absolutely does not. But I'm curious Jeanne, you know, when you decided that you wanted to have children? Did anybody try to talk you out of it? This was a very different time for diabetes. Jeanne Martin 16:14 Well, I was told that I would have a hard time having a child. And so we put up for adoption. And we were waiting to hear and I went to the doctor and thought I had a tumor but the tumor was Jessica. So I thought, okay, so we said, you know, we were going to have a baby so we don't need to adopt and they said, Well, why don't you wait to see if everything is okay. And I said, okay, because the doctors told me that Jessica only had a 40% chance of being born alive. So we waited and she was screaming and kickin, so she was Fine. So we stopped the adoption because we didn't need two babies at one time. And I didn't see her for I think it was like two or three days. She was in an incubator because her blood sugar was low when she was born, but then after that, she was fine. And I was fine. And that's it. Stacey Simms 17:19 I'm sorry. I'm still on the tumor. Jessica Graham 17:24 Well, and I'll add to that, because, you know, she won't tell you this part, but because she was diabetic, she couldn't have any medicine or or painkillers. When I was born, and you were in labor, what, 24 hours? No, no, Jeanne Martin 17:39 it was, I don't remember 13 hours. So it was a Jessica Graham 17:42 ridiculously long and I was stuck behind a piece of cartilage. And so I wasn't coming out. So she went through hell delivering me. But it all worked out. Yeah. Stacey Simms 17:54 Oh, worked out. things really have changed. I mean, Jeanne Martin 17:58 Oh, yes. And I also was I would not live to see my child grow up. Now I've got a 13 year old grandson. Stacey Simms 18:07 But let's talk about that, because I've heard that from so many people diagnosed not only in the 50s, but even as late as like the 70s and 80s. This Doomsday of you're not going to live past 30. And I know that for many people, that unfortunately was the case, there was not the care. There was not, you know, whatever they needed, but it seemed as though in some ways, the doctors, I don't know, I don't want to editorialize here, but they seem to have this Doomsday approach. And when you were told that Jeanne, what was your reaction? I mean, I think a lot of people would have said, well, what's the point? Oh, Jeanne Martin 18:37 I'm kind of stubborn. And my reaction was, I told my husband, that guy can go walk out in the street and get hit by a bus tomorrow, and I just, I'm not going to go along with that. That's was my reaction. I got mad and he did die. A younger The age that I am now is a matter of fact, the guy that told me that I didn't buy into it. I didn't get depressed because I just thought it was full of baloney. I love it. Stacey Simms 19:10 All right, this is getting interesting now. I do love it. Jessica. I know your mom is sitting right there. But you're doing great Jeanne, obviously with with your shots and with your checking, but the technology has advanced. I'm going to assume, Jessica, that you guys have had a lot of discussions about this. And your mom has said no. And you're respecting that don't put words in your mouth. But I'm curious how have those conversations happened? Jessica Graham 19:36 Oh, yes. And I don't mind saying it with her sitting right here. So I don't mind that she doesn't do the pump because I understand. I mean, she's had incredible control for 60 some years and so i don't i don't blame her that but I want her to have a blood sugar monitor because she tends to go away Low, and she goes low at night. And it's been a problem as I call it a problem. Whenever she goes low it to me it's a problem. And so while she keeps great control, and I mean, it's her life, right, and it's her decision to make, I wish that she would get some of that electronic help with the monitoring of it. So yeah, we have that conversation a lot. But I lose. Stacey Simms 20:26 That's a difficult situation. You know, we, as parents of children with type one have these conversations, especially once there were certain age, and I'm going to say, as young as four or five years old, where it really has to be up to the person to buy into it and say, Yes, I want this technology. And I would imagine and I'm just imagining having this conversation with my mother, who I think you have a lot in common with with Jeanne. And I think it would go that well. Yeah, well stubborn, but also you're doing very well. Jessica Graham 20:52 Yeah, and Exactly. That's why I mean at the end of the day, what am I going to do right now I can only put in my two cents but that that is is the one thing that I wish you would do. And my dad to his credit. I mean, he's kind of grown up with this too, right? And so he's a great monitor strangely, he knows when it's the middle of the night and she's having a hard time. But I don't like to rely on that. Unknown Speaker 21:17 But again, I lose Jeanne Martin 21:19 stubborn. Well, let me cut in here. But the doctor prescribed a new kind of insulin that I've been taking. I don't know six months now and I have not had any trouble at night. Oh, good. Stacey Simms 21:32 We don't have to use it in the show. Are you taking Tresiba? Jeanne Martin 21:34 It's Tresiba. Yeah. And I have not had any trouble at night. Since I've been on that. Yeah, that's a good thing. Stacey Simms 21:41 But my son uses an insulin pump. But long story short, we had him on Tresiba with the pump for a while because teenagers use the most ungodly amount of insulin that you could imagine. He's coming out of it. So we did away with the trusty bow, but boy, it's like the best long acting we've ever used. I'm curious too, and the bridge kind of skipping around chronologically. Hear but I mentioned earlier that there were not blood sugar meters for home use when you were diagnosed. Do you remember when you started using one of those maybe the 80s Jeanne Martin 22:09 Well, I thought it was great because then I really knew what was going on. I mean it just it was very helpful because and that's why I checked myself a lot because you can't guess how much it's I mean, you can guess kind of how much insulin but you really can't without knowing what your blood sugar is to my mind. I mean, I think that's what's helped me keep control in Yeah, I don't like to stick my fingers but I mean, I'm so used to it now just comes second hand to me, so it made a big difference. What really made a big difference to is having plastic syringes that don't have to boil. Tell me Stacey Simms 22:49 more about that. When did that switch? Not Not Not necessarily like what year but tell me more about that. What do you remember kind of the transition? Did you just one day throw all the glass ones out? What happened? Right Jeanne Martin 23:00 Yeah, I did. I guess the doctor told me that these were available. And so I bought them and and use them. And then you know, he used it, throw it out. And it just, it made a big difference. It's just like, oh, gosh, you know, this is getting easier. Well, and you know, it was a lot easier. I mean, it sounds like a small thing, but it was a no to boil, you know, syringes once a week and needles once a week. And so this was great. Jessica Graham 23:28 When did you I don't remember you ever boiling? Was that in the 60s or Jeanne Martin 23:32 70s? No. Well, I must know. I don't think when you were born. Other times, I must have used the plastic ones. Yeah. Because I don't remember doing that either. When you were born. Stacey Simms 23:43 You know, Jeanne, it's interesting. You said it seems like a little thing. I think for someone who has my perspective. My son was diagnosed in 2006. When we basically have I think we have all of the technology. At least it was on the drawing board if not available at the time. It wasn't as good as it is now. Just 1314 years later, but it was there. And so to think about transitioning from peeing on a stick to a blood sugar, meter glass syringes, to plastic syringes, these are monumental changes. I don't think it was a little thing. I can't imagine how much of a difference that made. I mean, the needles had to even feel different. They were more comfortable, I assume. Jeanne Martin 24:20 Oh, well, it was it was like one size needle with the glass syringes, and they weren't that small. And now, you know, you can get all different kinds of sizes. Jessica, do you remember growing up? Stacey Simms 24:32 It sounds like your mom's diabetes was not front and center, as I'm sure she would not have wanted it. But are there any things that stand out? You know, when you were a teenager? I'm trying to think his parents are just super embarrassing to begin with? Jessica Graham 24:44 Honestly, no, because it just my mom wouldn't let it be the center. I mean, you're absolutely right about that. She she would never have wanted that. And I don't remember there being anything that happened when I was a teenager. That was odd. She She had one episode. I guess I was a teenager when you broke your ankle. She was we discovered that she couldn't drink champagne. She had a glass of champagne. I mean, literally a glass and the next morning passed out and broke her ankle because it messed up her blood sugar so badly that I don't remember anything ever. Embarrassing or weird or no, not not at all again, I I remember when I was a younger teenager, like if you started acting strangely, I needed to get you orange juice like I vaguely remember that but and that went for anybody. Like I think if anybody started acting strangely, I would have ended them. Shoes. But Stacey Simms 25:43 Jeanne, did you have a career did you work? Did you work at home? Tell me a little bit about what you you know what you did? Jeanne Martin 25:49 You know, I work during high school, I worked at clothing stores and I worked at a bakery. And then after school, I worked at a real The state office. And I guess that was it because it was the board of realtors, because I had to quit them when I got pregnant with Jessica. So that was it. And then when my husband started his company, I worked for him. I did the payroll and things like that. Stacey Simms 26:19 Jessica, what led you to JDRF? I mean, we had met Previous to that, but we connected again at the Charlotte chapter. Jessica Graham 26:25 I led community outreach for Harris Teeter, but didn't formally get involved. They were supportive of JDRF, but didn't formally get involved in a board capacity until I got to Time Warner Cable, and they were also involved with JDRF. And so I joined the board at that point, and was on the board for, I don't know, six or seven years, I think, and shared it in there. But I think I knew about JDRF through mom, like I think you just always supported them. Yeah, um, if I'm not mistaken, the world. organization was born the year I was born. Just another thing that has always been a part of my life. And I was really excited to get involved with the chapter because yeah, as you sort of already mentioned, the parents of type one diabetics are really involved. But there really aren't many children of type ones out there. There weren't at the time. It meant a lot to me to be involved and to be part of it. Stacey Simms 27:24 I'm just curious, your mom, Jeanne, you just seem so laid back. And I've talked to several people who have lived with diabetes for this long who are I want to say relax, because obviously you're not, but who are more of the, hey, I'm taking care of it. We don't need to talk about it. You know, I'm not surrounded by people with type one. And then there are people who are younger, or we've been diagnosed more recently, who are really a big, big, big part of that community and want and need to kind of breathe that air. And I was curious, Jessica, was it surprising for you to kind of be involved in JDRF and be around people who were more like well, I am talking about every day and I am going to tell you more about it. Jessica Graham 27:58 Yeah, I mean, it was it was definitely Different, because that's just not how it was in my house. I mean, it wasn't a big secret or anything. But Mom definitely didn't advertise it. And it certainly wasn't part of her identity. It was very, very different. And I really loved to one be involved that I really loved getting my mom in that community, like I would take her to the gala and that kind of thing. And she really is such an inspiration to a lot of people, especially those who are newly diagnosed because they can see somebody who really, I mean, has had a full, long, wonderful life with it. And so it's not this Doomsday message. And so she's really, I think, a real inspiration for that. And I think too, she's a great inspiration for how important attitude is an outlook is because she's never let it define her and she's never really Let it limit her. And I think she's really inspirational. So yes, it was very different to be around different people with it. But also it was really exciting to just to be able to share her with that community. Stacey Simms 29:12 Jeanne, what's your reaction to have your daughter sitting next to you and saying, what an inspiration she thinks you are? Jeanne Martin 29:17 Well, I think that's very nice. It's very complimentary. I never thought of myself that way. But I'm glad she sees me that way. Stacey Simms 29:26 I know my listeners are going to want to know, a few more little details. Jeanne, do you exercise a lot? Have you always been active? Are you more kind of laid back about that too? You know, that's one of the things that people always ask me about. Jeanne Martin 29:37 No, I say I'm pretty active. Well, since we've lived here almost the whole time. I would go to the why three days a week. I don't do that now because I suppose and when I was younger, I played golf, and did a little bit of tennis. I've always gardened Well, not always but for a long time I went out in the They are dug in the dirt and that type of thing. And I try to walk about a mile a day. I mean, I walk more, but I go for a mile walk, or more. I tried to do it every day, unless it rains. I do it early when it's hot, because the heat affects my blood sugar. I run into trouble easier. And I don't know if that's the same with other people. But anyway, that's what it is. Yeah, I think I'm pretty active. Stacey Simms 30:27 Yeah, you're very active. Jessica, I'm curious, have you. You mentioned that you were worried about your son having type one and he's 13. Now, do you still think about that? It's in the back of your mind. Is it something that you've ever had checked out? Anything like that? Jessica Graham 30:41 Um, yes. So I worry about it every day. But I don't I try not to think about it. And I certainly have never mentioned it and Unknown Speaker 30:49 we had Jessica Graham 30:50 it chat once and I forget why you've charged it. Yeah, maybe. Maybe you were the one anyway. I feel like I had it checked once and I don't remember why maybe he was thirsty that day. But I do worry about it a lot. And I mean, literally every time he says I'm thirsty, because I'm just a little neurotic that way, but I don't talk about it at all. Like he would have no Unknown Speaker 31:14 idea. I don't Jessica Graham 31:16 think anybody would know that. But yeah, I worry about it a lot. But then again, I think, well, if he ever were to develop it, oh, my gosh, he has the world's greatest teacher to help him navigate it. So that puts my mind at ease. When he was very, very small. I found a test that he could have done. It might have even been when he was born. I mean, it was he was really, really young. And I think it was down in Florida, talking about TrialNet Yes, that must be what it was. And we just decided Stacey Simms 31:49 not to do that. And I think I talked to you about it and talked to my mom about it. And she, I think suggested that we not do it and I decided not to so Well, Jeanne, let me then ask you about that because you would, as Jessica said, you know, he would have such a great role model and teacher, God forbid something would happen like that. So let me just ask you, what would your advice be for a newly diagnosed adult or a newly diagnosed family facing something like this now in in 20? Jeanne Martin 32:19 Well, it depends the age of the kid. I think when you're a teenager, I think it is be harder on the kid because, you know, you don't want to be and maybe it's because I'm a girl and maybe it's back then you don't want to be different. I mean, you know, you want to blend in as a teenager, you don't really have enough self confidence to just say, Okay, I've got this and I'm gonna deal with it. I mean, I'm not saying that kids don't but I would think that's a harder age. But I guess I would just be very positive and all the things that can help. At the same time, it was would be your his responsibility to see He does try to do what he should do with diet and exercise and taking this medicine. I have a niece who came down with it when she was 10. And she never did well with it. She didn't do what she was supposed to do. And over the years, she's had all kinds of complications. And she just got very depressed with it. And you have to be positive. But you the kid himself, has to take responsibility for himself to do what he should do. And I strongly believe in that. Stacey Simms 33:36 Thank you both so much for joining me today. It was amazing to learn about your story, Jeanne, and I'm so glad, Jessica that we were able to do this. Thank you for being on the podcast. Jeanne Martin 33:45 Thank you for having us. Yes, thank you. It was nice meeting you via the computer. Announcer 33:55 You're listening to Diabetes Connections with Stacey Simms. Stacey Simms 34:01 I shared some photos in the Facebook group that Jeanne and Jessica sent me, I was so happy to finally get a chance to talk to her. And you know what, after that interview, she sent me an email with some advice for Benny, which I thought was really, really nice. Now he is, as you've heard him here on the show, he maybe he's a little too confident, but he's very independent and very confident. But Jeanne has some really nice words just about you know, not letting diabetes stop you and keeping a good attitude that has served her well. And I really appreciate that she took the time to do that this community is just great. All right, innovations is up next. And we have a very low tech solution to a very scary problem. It has to do with rubber bands. All right. I'll explain that in just a moment. Diabetes Connections is brought to you by Dexcom. And we started with Dexcom back in the olden days before share. So trust me when I say using share and follow apps make a big difference. I made a lot of people who don't realize that when Dexcom launched you could not see numbers not only on your phone, but you could not share than with anybody else. But now it's such a great system. And Benny and I set parameters about when I'm going to text him or you know how long to wait all that it helps us talk and worry about diabetes less when he is at asleep over or goes on a trip. It gives me peace of mind. It also helps if I need to troubleshoot with him, because I can see what's happening over the last 24 hours and not just one moment. The alerts and alarms that we set help us from keeping the highs from getting too high and help us jump on lows before they're a big issue. Internet connectivity is required to access separate Dexcom follow app. To learn more, go to Diabetes connections.com and click on the Dexcom logo. As you know I am the queen of diabetes mistakes I wrote a whole book about why I think mistakes are great. It's the world's worst diabetes mom real life stories of raising a child with type one. But I will say that making mistakes is also incredibly scary at times. And the one mistake that I think almost everybody with time wonder who's a caregiver for someone with type one has made is mixing up the long acting and the short acting when you're on MDI, whether it's the beginning or you've been doing this for a while, I've been enough Facebook groups where I see this happening. It's once in a blue moon for the individual. But it seems like almost every week somebody is coming in and saying, Oh, my gosh, I did this. I'm so scared. What do I do? Right? Well, one of the best tips I ever heard on is so simple. And I heard it from a CDE. And I'm so embarrassed that I don't know their name. And I'm so sorry, if this was you, email me Stacey at Diabetes connections.com. And I will give you credit, but what you do is this, whenever you have a new vial or a new pen, have long acting and do this on the long acting only take a rubber band and wrap it around the pen or the vial. Just wrap it around a couple times. You know, make sure it's not loose, it's not sliding around. And then every time you pick up your long acting, you will know that it feels different. It's got those rubber band bumps on it and If you do this often enough, really doesn't take that long, maybe two weeks, your fingers will start to associate that feel with the long acting. So if you make a mistake if you accidentally grab the wrong pen, your hand and your brain will instinctively know that something is wrong. Now, this is not proven. I haven't seen any studies on it. But this is advice that was given to me that I've heard other people use. And it really does make sense. It is incredible that after all this time was different kinds of insulin, that the pens are pretty much exactly the same. The Lantus vial, I remember might be a little skinnier, right? It looks a little bit different. But when you're moving quickly and automated, like a lot of us are, I mean, I could do that Tandem cartridge in my sleep, whereas when we first got it, I thought, oh my god, this is so complicated. I've got to lay everything out on the table. We did the Animas pump for 10 years, I could definitely feel that thing blindfolded. You just get used to your routine and how things are Feel so if you just wrap the rubber band around the long acting, you will get used to the feel of it. Let me know what you think. Does that make sense to you? Has anybody tried that? And if you've got an innovation like that This segment is for everything big and small. That makes living with type one just a little bit easier. Let me know I would love to hear from you. Just a little personal update before I let you go, this has to do with insurance. We've had some employment situation changes around my house, which means I have already spent far too much time on the phone. I decided to start taking advice from one of our previous guests from Melissa Lee, who said when you have insurance issues, you should start with the diabetes companies and work backward. So I called Dexcom and Tandem and I said hello, I have changed insurance. What do I need to do? And they were very helpful. The bad news is my new insurance means we have to order from a third party supplier and it's Edgepark. Edgepark. If you're listening, please, please handle this. Well, we were with Edgepark years ago and I hate to disparage anybody. But let's just say let's turn this into a positive. I felt that it was such a gift for the last five and a half years to order directly from Tandem and directly from Dexcom. I am sad to see those days in my rear view mirror. So I will keep you posted on how it goes. I'm currently as I'm recording in the limbo of an Edgepark representative, we'll get back to you. We have plenty of supplies. I have a great support system if I need anything, so I'm not worried about Benny. But man, although I'm a liar, because I did say to him, you know, before you rip anything off your body, so bad before you take off that sensor or that inset, come talk to me, and make sure that it's okay to do so. Isn't that terrible? I mean, I'm laughing because we really are fine. But it just makes me crazy how expensive this stuff is, and how difficult the process is to order what you need. So I will keep you posted on that. Hopefully, it'll all go smoothly. But this is not my first rodeo. So I'm anticipating navigating a not so smooth road. I'll let you know. Thank you so much to my editor, John Bukenas from audio editing solutions. Thank you all so much as you listen, I'm Stacey Simms. I'll see you back here. Next Until then be kind to yourself. Benny 41:07 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All Wrongs avenged
When Shaina Hatchell's little brother was diagnosed with type 1 at age nine, she knew her life - and her life's goals - had changed forever. She decided she would teach everyone about diabetes when she grew up. Now a registered nurse and certified diabetes educator, Shaina has written "Shia Learns," a children's book to teach families about diabetes. In this episode she shares her story and answers listeners questions about teaching kids with T1D all about acceptance. Watch Shaina's JDRF FB Live here Check out Stacey's new book: The World's Worst Diabetes Mom! In Tell Me Something Good, cheerleaders and a lot to cheer about and.. our newest segment.. Innovations.. new studies and approval for the latest hybrid closed loop pump systems. .. More information here about Semglee insulin This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode transcript: Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes. By Real Good Foods real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:21 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:26 This week when her little brother was diagnosed then 12 year old Shaina Hatchell knew her life and her life's goals had changed thanks to their diabetes educator. Shaina Hatchell 0:38 It was in that moment of her teaching my entire family teaching me allowing me to trial everything that I realized like this is what I want to do with my life. So at 12 I already was telling my mom, I'm going to be a diabetes educator one day because I loved it so much. I love learning. Stacey Simms 0:54 Shaina is now a registered nurse and a certified diabetes educator. She's also the author of a new children's book about type one. And she's answering your questions about kids and T1D In tell me something good cheerleaders and a lot to cheer about, and in our newest segment, innovations, new studies and approval for the latest hybrid closed loop pump systems. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of Diabetes Connections. I am so glad to have you along. If you are new Welcome. My name is Stacey Simms. I'm your host and we aim to educate and inspire about type one diabetes by sharing stories of connection. My son was diagnosed with type one right before he turned two. He is now 15. He's a sophomore in high school. So we've been doing this for a while. My husband lives with type two. I don't have diabetes. I have a background in broadcasting and that is how you get the podcast and I'm laughing a little bit because as I was recording that, I don't know what I said, but I activated the Siri I just said it again on my phone, don't say anything, okay, didn't activate it. And he started talking. So if you heard that I apologize. But it's funny sometimes. And I promise I'll get to the guest to the diabetes stuff in just a minute. But I was talking about my radio days recently, I worked a long time in radio, and I'm taking part in a podcast festival, a virtual podcast Festival, which is all about learning and sessions and panels and stuff, kind of like diabetes festival, or I guess, more like a diabetes conference. But it's all about information and podcasting, and we were talking about my time in radio. And it's amazing to me to think about how many people worked on that show that I was on. I did a four hour morning news show with a co host and a sports guy and you know, reporters and lots of moving parts and running around this little studio. But we had sound engineers and we had producers and you know, we had interns that we had so many people working on that show. And so to do a podcast, of course is usually I mean unless you're NPR or You have a lot of corporate power behind you is usually a one person or maybe a two person show. I do have an editor who helps me out after the fact. But it's when little things happen like my phone going off that I remember those days. Not that I'm really itching to go back to spending five hours because we did also have an hour show prep in the studio, which was the size of the room that I'm in right now about the size of a, let's call it a standard bedroom with four or five, six people every day, starting at four o'clock in the morning. So I can't say I recommend that. Oh, my goodness, sorry to get off on such a tangent, but I am taking part in the Charlotte podcast festival. If you're at all interested in podcasting, I will link it up. I'm sure you could attend. It's free. And then later on in the show, I'll get back to diabetes conferences and tell you what's on tap because there's some interesting changes happening. Of course, everything's still going virtual, but some new announcements and I will get to that a little bit later on in the show. Okay, Diabetes Connections is brought to you by One Drop, and I'm really impressed at how much they just get diabetes. It makes sense their CEO Jeff was diagnosed with type one as an adult. One Drop is for people with diabetes by people with diabetes. The people at One Drop work relentlessly to remove all barriers between you and the care you need. Get 24 seven coaching support in your app and unlimited supplies delivered. No prescriptions or insurance required. Their beautiful sleek meter fits in perfectly with the rest of your life. They'll also send you test strips with a strip plan that actually makes sense for how much you actually check One Drop diabetes care delivered. learn more, go to Diabetes connections.com and click on the One Drop logo. My guest this week is the author of what is meant to be a series of books for children and families about type one. The first book released is called Shia Learns, author Shaina Hatchell is a registered nurse and CDE and her brother was diagnosed when he was nine. The book is adorable the illustrations are really top notch. It's gorgeous. But the substance, of course, is what this is all about. Shaina talks about her family's story. And she answered some listener questions that you sent in about kids and type one. And she gets these kinds of questions every day in her practice. She meets a lot of new onset families. She talks about that and a lot more. Here is my interview with author Shaina Hatchell. Shaina, thank you so much for jumping on. I know, it's been a really busy time for you with the pre sales, but the book is out now. Thanks for spending some time with me. Shaina Hatchell 5:32 Thank you for having me. I'm so excited and it's been busy, but I couldn't miss this interview. Stacey Simms 5:37 Oh, thank you. All right, let's just jump right in. But we'll talk about your background and your brother and everything. Let's start by just talking about the book itself. What is Shi'a learns, tell me the story of the book. Shaina Hatchell 5:50 Oh, right. So I have been wanting to write a book that does some sort of diabetes education for many years, even before I became a diabetes educator, there have been a lot of experiences that I've had in my home with my brother and my parents that I felt like when we were going through certain situations, it would have been great to have a book that would have kind of given us a little bit more guidance, because we only see the doctor every three months. So now that I had the time and I felt like you know, I had enough knowledge to really create what I wanted to create. From the beginning I decided to go ahead and start writing some books. And in the beginning, Cheyenne learns wasn't the title was just me writing honestly, more so like poetry style books about diabetes education, because I love poetry, and then it kind of just dawned on me like okay, this is turning into a series and this should be about a child and let me just go ahead and title it Shai learn. Shi'a is the name of a child that I lost during gardening. decided that, you know, this was another way for her to be bored. And then just having her be the title of the book she learns, which is actually perfect for me. So the reason why I wanted to make her a young African American Girl is because I wanted to help with the disparities and care that some African American face. And I do that by increasing education with the book in the topics that will come in not only this first book, but the books to come, as well as increasing representation. So that is the reason why we're starting with preDominantly African American characters, but that is going to grow, because I want everyone to feel represented in these books, Stacey Simms 7:39 a lot to unpack there. But let's start with the book itself. That first, as you said, it's a series what's the story of the first book? Is it her diagnosis? Your take me through it? Shaina Hatchell 7:49 Yes. So in the first book, it's actually going to be explaining in following Shia and her parents in their journey for a new one set in the hospital. So basically in the first one Shia is going to start to have some films that the parents notice are not normal. And so they take her to a hospital. And mom explained to the providers, what she's been noticing about Shia. And then they do a couple of tests and they diagnosed her with type 1 diabetes. Then in comes the diabetes educator Dom who will start to explain to the family, you know what type one diabetes is how insulin works in the body, and give them everything they need for discharge. So it's literally just that first story that anyone who has a loved one with type one or if they're the type one themselves, have experienced, you know, that first new onset experience. Stacey Simms 8:45 I gotta say, the illustrations are just beautiful, but one that caught my eye. Oh, yeah, one that really caught my eye is the depiction of insulin as a key, right where we're explained a lot. Can you take us through what that illustration is showing, and I know As you're listening, I'll put some things out on social media and in the show notes, you can see these photos. It's an adorable depiction of what insulin does. Shaina Hatchell 9:08 Yes. So anytime I educate because as a diabetes educator, I do preDominantly new onset education. So this first book is literally what I teach almost every single day. And when I'm explaining to families, what insulin does in the body, I always draw the picture on the board. And so I sent this to my illustrator and she did an excellent job. Thank you, Candace Bradley, you did an amazing job in actually bringing this to life. But what I always say is that when we eat carbohydrates, we eat food that has sugar. So your carbohydrates are even if we had like a regular juice or soda, which is sugar in the simplest form, you know, the carbs broken down in the stomach turn into sugar and then the sugar that pure sugar goes to the bloodstream. And when there's more sugar into the bloodstream, the body sends a message to our pancreas that sends a message to our body. To sell to release the insulin, and insulin is the only key that can unlock ourselves so that sugar can go inside and be used for energy. Stacey Simms 10:09 Our endo use the exact same analogy with the key and I I wish I had a book like this to show my two year old. I don't think he even has that analogy in his head to this day. Tell me a little bit more about your story. Your brother was diagnosed when you both were kids that has to have influenced you. What do you remember about his diagnosis? He was nine. Shaina Hatchell 10:28 Yes, he was nine and I was 12 years old. I remember when he started to lose weight. And I remember when he started to drink a lot of water and go to the bathroom a lot. And that was probably for like, I want to say two weeks before we my mom, I say we but I was too young to be a part of that before my parents decided that they needed to take him to a doctor's appointment, but I remember just seeing him like the weight and then at nighttime, he started to put sheets from off of It started with sheep into his pants into his pajamas. So that if he went to bed while he was sleeping at night, it would like be on the sheets and not all over the bed. And I remember like, of course, as an older sibling in older sibling fashion, like making fun of him about it. And I think that's when my mom was alarmed because my brother was upset with me. And I told her why he was upset. And you know, I made a joke. And then I went to school. And when I got out of school, I got in the car with my mom. And usually my brother was first to be picked up. So I was expecting him to be in the car with us. But he wasn't and my mom was sitting and says, We're on our way to the hospital, your brother is in the hospital. When I got there. I just remember being really confused and feeling really bad about the joke I made and learning that he has type one diabetes. My family had never heard of a kid being able to get diabetes. And we had no idea that this was even possible for our family because we didn't have a family history of it. So we were kind of confused and then we of the day, the next day was a diabetes educator who explained everything. And it was in that moment of her teaching my entire family, teaching me allowing me to trial, everything that I realized, like, this is what I want to do with my life. So at 12, I already was telling my mom, I'm going to be a diabetes educator one day, because I loved it so much. I love learning. Stacey Simms 12:22 But today, kind of pat you on the head and say, Sure, sweetie, are they Yes, we understand. And this is Shaina Hatchell 12:27 something you're gonna do. My mom is like, amazing. She actually is like, Yeah, well, you know what? We need you. So yeah, you do this when you get and it was like it. From that point forward. It was kind of like a thing like Shay is going to become a nurse and she's going to be a diabetes educator. And I went to vocational high school and got my LPN at 17. And it was like, we're gonna make sure you get there. So they were actually super supportive from the beginning. It's fantastic. Stacey Simms 12:56 And your brother is in the book, right? Am I he's one of the characters Shaina Hatchell 13:00 He is he is a diabetes educator. So Dom is his actual name. And Dom is the name of the diabetes educator in the book. And he is the educator, because he taught me way more about diabetes management in the home and you know about diabetes in general, and how it affects the person then, than anything I've learned in any textbook or any other experience. I got that firsthand knowledge directly from him. So it was only right that he'd be the educator in the book. Stacey Simms 13:31 You know, you you talked about how you want more representation for the African American community. We want to see more black characters in these books, and curious, there's so much misunderstanding, even in the middle community about diabetes and I hear stories of people who are Latino who are black, who have been told you can't have type one, you have type two, or you know, you don't understand what's going on. It just seems like there's a lot of medical disparities. Do you recall the Did you and your brother face that When he was being diagnosed I know right back to our chat but first Diabetes Connections is brought to you by Real Good Foods. Real Good Foods is all about making delicious foods you feel good about eating high in protein, low in carbs and always made from simple real ingredients you feel good about eating. their newest products include these bowls they have these great meal bowls, Mongolian beef, lemon Chicken, Chicken lasagna, all low carb and in a handy little bowl. You can get all of their items delivered or find out where to buy. They're in our local Harris Teeter I know they're in the Walmart here as well. And you can find that in their store locator right on the website. While you were there. I highly recommend you get some ice cream. They do a great job of shipping the ice cream I was a little nervous about that. But it comes fully frozen. They do a terrific job and it is so good. My whole family loved the peanut butter I am always partial to chocolate and I thought the mint chocolate chip ice cream was top notch. Find out more go to Diabetes connections.com and click on the Real Good Foods logo. Now back to Shaina answering my question about whether there were any questions of the doctors minds that her brother had type one. Shaina Hatchell 15:22 So when my brother was diagnosed we didn't face that. Personally, I think that his signs were pretty clear that this was type one. There was never a question for type two. But this is something that people of color do experience and I do have a friend of mine that she started to have the increase in, you know, thirst and urination and all of the crystal clear signs. She is an athlete, very thin and always healthy. And she went to the doctor's when she was experiencing these things and she was older and they automatically put her on That format and told her this was a type two diabetes, they didn't even try to test to test her for like any sort of type one. They didn't do any antibodies, any labs. It was just this was a type two diabetes because you are an older teenager, and you're African American, like that's what this is. And of course it ended up being type one. And so seeing her experience that and the frustration of thing I'm taking this Metformin on eating healthy, I'm exercising like you asked me to, and I still don't feel good. And not being heard initially was it was very difficult for me to see that because you know, me, I'm like, No, I know my brother is like, no, it's not it's got to be. And so to know that, that is an experience that many people of color with diabetes have is heartbreaking for me. And so just for like, if there are books that are available, that people of color that do not have diabetes at all can read, that will give them more of an understanding of what is happening in the body of someone with T1D, that if they see someone experiencing it their cousin, family member friend, that they'll be like, Oh my goodness, this is what I read in this book when I was a kid. And so you should ask them to check you for type one diabetes, or you know if they're experiencing it themselves, but they'll think you know, what I remember, these were the things that were talked about in that children's book. And so I should definitely be pushing more toward them. Checking for type one specifically, I Stacey Simms 17:28 can't tell you how many listeners I have who diagnose themselves because of the baby sitters club books. So you know, it does work. Right. Exactly. It really does. So my listeners had some questions for you, if that's okay, if I could jump in and ask some advice questions, because you do work with families. Thank you so much for letting us do that. So I like this one a lot. Um, Valentina asks, how to handle remarks about what it is that you eat. She gets asked, What is that on your arm? Why do you get to keep that Your phone and nobody else can use she feels overwhelmed by the questions her friends are asking any ideas to help kids deal with that? Shaina Hatchell 18:07 Yeah, you know, that can be it can be overwhelming to constantly get these kinds of questions. And so a part of why I created the book is that this will be something that children again, not living with diabetes can read, and start to understand a little bit better what's happening to their friends. And so being able to give them a book that is entertaining, that has these, you know, great illustrations and allowing them to read this content will help to decrease the questions, right, because there'll be able to get some of those answers in the book. But the other thing really starts in the home with the parents and the child. I find that the same way that we prepare for job interviews, adults, prepare for job interviews, we look over the questions if we can, you know, we have them and we think about the best ways to answer them so that when we are in that interview, with Parents, and we feel less stress and less anxiety because we prep for these questions is the same way that family should look at how they can prep for questions that may be x, you know, of their child or you know, is a child of yourself. So I think that it's really important for parents to sit with the child and say, Okay, let's talk about the kinds of questions that you might get asked, let's talk about what you would say if someone actually why you get to have your phone, or let's talk about the kind of answer to the question of why you're eating certain things or what's that when your body? How would you like to answer that, that way the parent can hear the child's response, and maybe there is some uncertainty and help really guide how that answer will be. A lot of times children are diagnosed and I know this because I do it. Sometimes, you know, you try to involve the child but depending on the age, maybe the child isn't as involved. And so as they get older and they start to understand a little bit more what's happening in their body. Sometimes the parents have those better answers and have never thought about having that discussion, you know, because the child's had diabetes now for, let's say, five years. So we think, you know, they understand but the reality is that the real understanding is with the parents who was really alert and and listening to what was happening from the beginning. So I think that that's really important. Stacey Simms 20:17 That's a great point. I'll reach back to my son. When my son was diagnosed, he was only two. So he learns nothing, right. We learned to ride a bike. He used to say, when he had something your question, I don't know, his friends asked him a question, or they just pointed out or pulled at it or whatever. And he would say, that's my diabetes, you know, leave my diabetes alone. got older, we would teach him and he had different words for it. Now he's 15. And he has actually told people you know, hey, that's Skynet. I'm robot controlled. It's a tracking device. I mean, 15 year olds are a little bit more snarky. I would not recommend that. That's what you teach your children to say they will come to that themselves, but that's good advice you do you kind of roleplay and talk them through it. And it's okay to say it's a medical device. Leave me alone. In a polite way, Shaina Hatchell 21:00 of course, of course, in a polite way, and just being able to be prepared for those kinds of things, and from some people are not ready to talk about it. And that's okay, too. I think that it is also important to understand that it's okay to just have healthy boundaries and say, you know, I just, I don't want to talk about that. Please do not touch it. And when you're ready to have that conversation, that's all right to Stacey Simms 21:24 another question was, and it kind of goes hand in hand. There are children. And as you said, there, there are children who don't want to talk about it. My son is very open. We're so lucky that way. But there are kids who don't want to, and they get embarrassed by it. How do you help children get over that feeling of I don't want to call it shame. That's a bit of exaggeration, but they're more private. They're a little bit more embarrassed by diabetes. Shaina Hatchell 21:45 It's actually funny that that's a question. So I like the liaison of my family and my brother, Matt, very fond of being open and talking about diabetes. Honestly, growing up A lot of his friends did not even know that he had diabetes, it's just not his thing. And he will even say it to me now, like, you know, this is not just not my thing. Like, you know, it's not my family like talking about it, I'm like, okay, you know, I think that it's just, again, I feel like everything starts in the home, if you make them feel comfortable and confident in it being okay that they that want to share all of the information that does help you know, them establish again, really healthy boundaries at school, building healthy boundaries with with friends, but I also feel like the war that we normalize conversations about diabetes, the more that we normalize, discussing, it's kind of like a kid with asthma. I'll give this example because I grew up with asthma. And I remember as a kid, my inhaler, having my inhaler, having to give my inhaler to my teacher at the beginning of class, and I remember you know, all the kids, we had our inhalers and baggies or names and we would just hand them over and no kid thought twice about it because there was a normalized conversation about being a child with asthma. So, kids Oh, that's your inhaler, because you have asthma, okay? My friend has it or I saw something about that, or my mom talked to me about that. And it became just so normalized that there was, I didn't feel ashamed, you know, I kind of felt a sense of pride in like handing over that inhaler like, yeah, I'm one of the special ones. What I have. And so I think that if we have increased in the type of content that talked about type one diabetes, I think we'll see that kids will feel a little less shy about it, because it's going to be normal conversation to have so with me creating these books, I'm doing a lot of marketing to people that are not living with Type One Diabetes, I'm trying to market it to children in general so that it becomes more normal to know someone that has type one diabetes, I tell people all the time, you probably have met someone or you know someone or your your waiter or waitress, or somebody that you've encountered is either living with type 1 diabetes, or someone really close to them is, and so it's closer to home than we think. And if we start to have this be something that we just talked about, as usual, it really does decrease that feeling. Stacey Simms 24:16 Yeah. When my son was in elementary school, especially for the younger kids, they used to always ask, you know, for your kid's birthday, maybe don't send in cupcakes send in a book. I mean, this was not because of diabetes. This was just because we had great teachers. I loved that. And so we would always send in a book about diabetes, like, um, you know, one of the Lilly diabetes books, or one of the books that we enjoyed is when Benny was little, and it was always a really popular book for other kids in the classroom. You know, they keep it a little classroom library and the other kids would bring it home and I would get emails from parents, like, Do you know my child brought home Is this okay? It's like, yes, it's for them to read. It's not like it's book like they didn't take it from him. Oh, my goodness. Okay. So let me ask you another diabetes educator type question that I get all the time. The tech analogy is wonderful, but it can be overwhelming. Especially I think when a family is first diagnosed and just trying to learn the basics, how do you kind of coach your families and educate them through, you know, they're gonna go home and get on Facebook and everybody's gonna say, you've been diagnosed for three days, get it on Dexcom get control, like, you know, get this one. So how do you get you deal with that? Shaina Hatchell 25:21 That's a really good question. So one thing that we used to do so before working our children's national I worked at Children's Hospital of Los Angeles as a diabetes educator. So I have been on both the West Coast and East Coast with diabetes education and one thing that is the same as that, you know, for someone who is newly diagnosed if they want to start to look into technology, they have had to have been living with Type One Diabetes for a minimum of three to six months, give or take. And so that was kind of like a thing at Children's National but we've been actually just made a change where, of course what for insulin pumps is still three Next month, because you really need to know the basics before you can hop on to that kind of technology because it's man made. And if an insulin pump fail, you have to know how to jump right back into your manual mode. And so for that one, we still make it the same. And we tell the mat at New onset, like, Hey, you know, I know you might read some things about insulin pumps, but this is definitely something that we would discuss further with you, after your first follow up appointment with your endocrinologist. And then even then, you know, you have to have a conversation with them. And they may not think it's time yet, because honestly, influent pumps is a lot more work when you think about it and making sure that you understand again, how that pump works. And also remember, you know how to do things in manual mode, just in case things don't work with the pump, but as far as continuous glucose monitors, what we've started to do is really introduce it at New onset. If the family is really interested in it, or they know someone that has a CGM and they've already heard about it. Then we will introduce it It'll tell them that it was linked to them things. And the family then is calling every single day. So we might start the process of them getting a CGM at new one set. But of course that took time insurance has to approve it. There's so many different steps. And then after it's finally approved, and it's sent to the home, we have been talking to them every day on the phone. So if they had more questions about it, they have plenty of opportunities to discuss it with a nurse practitioner who was also looking at how their blood sugar's have been. And then once they receive it, they have to go through an entire class, either myself or another CDE. We will do a class with the family before they put it on, and really teach them everything about the CGM. So I just think that those technologies take a lot more education a lot more understanding in the very first day is always sounds great for families, but then once they start realizing how much more work is entailed with it, how much more they need to know about it. They either decide to go ahead, let's continue move forward. Or they might say you know, nevermind. The other thing is like the kids usually don't Feel that great and it sounds good while they're in the hospital because it sounds like something that'll take away them having to do finger sticks. But when the child is actually feeling a lot better realizes that this is a device that's going to be on their body for days, sometimes, not all of them. But sometimes the kid decides that that's not something that they're ready to do yet. And that's okay to sort of make sure I always tell families like, this is not like if you decide to start the process of getting a CGM. That doesn't mean that you have to wear it, it doesn't mean that it becomes the only way that you can do things, you know, the manual way we've taught you if you have your meter if he or she decides that they don't want to have that on their body, even if they've had it on for three months, and they just say, you know what, I just really don't like it. Take it off. It's no love loss. It's totally okay. And they can always come back and visit it later. If they like. Stacey Simms 28:50 Going back to your book. I know that you've been in pre sales for a while and you've got some reaction to it. It's about to kind of go as we're speaking it's about to go live. What has that The reaction been hasn't been what you hoped. Shaina Hatchell 29:02 It has been beyond my hopes and dreams. When I created Cheyenne learned, and I thought about combining my love for poetry with my love for diabetes education, I thought it would be more of like a local thing. I thought that people that knew me were kind of spread the word around the DMV area, maybe you know, Delaware, which is where my family is that Philadelphia, which is where I'm from, I thought those areas would take a liking to it and it would kind of just be there but it there are people that I have never met. There are people all over the world that are buying this look at pre sale and sending mixed messages and are so excited and that just makes me feel great and not for the sales or anything like that. But truly because I know that Cheyenne learns about insulin is going to be a book that really reaches people and really accomplishes my goal far better than I do. Did it to do so. I'm grateful. I'm really grateful and excited. Stacey Simms 30:04 So let me ask you and you mentioned right at the beginning of our interview, that Shia is the name that you were planning for your baby and you had a miscarriage. We don't talk about miscarriage at all. Right. And I was not going to ask I feel like I'm prying but I also you named the character after her. So I hope you'll forgive me for being nosy or prying. But was it hard to make that decision to use that name that means so much to you? Tell me just a little bit more about that if you don't mind? Shaina Hatchell 30:34 Oh, I don't mind at all. I am so open about having this conversation. And even in the acknowledgments, I mentioned that she's you know, shy is now my rainbow baby. She's born she's here. So for me naming the book shy learned was like this is it I have talked about since I was young that like, Oh, I'm gonna name I could show you because my name is Shaina. And it just felt right back. About his name Shia for years for years and so when I found out that no I was with child I was pregnant. I was like, Oh goodness Shia and it for me, it didn't matter if it was boy or girl like the meeting was shy like this is it. And so once I miscarried, I was actually in the middle again of writing the books in like poetry form and so it just kind of like dawned on me like, Okay, this is it. This is how Shai is supposed to be born. This is how my baby is supposed to be put into this world, I kind of felt like it was destiny, that shy of the birth a different way, you know, and so now, Shia lives forever. And I think that that is so awesome for me. And I'm just I'm excited about having another way of bringing forth this name that I've held on to for so long. Stacey Simms 31:51 This is not a show about pregnancy or miscarriage, but at the same time, I can't pass on the opportunity. You have found a way To deal with something again, we never talked about it. And I know that women listening are relating to you. So I have to ask, do you have any advice for somebody who has gone through this and hasn't hasn't said anything or doesn't know what to do with all this emotion? Shaina Hatchell 32:13 I think that it's all about, you know, making sure that you talk about it. But you know, think of healthy ways to get those emotions out. It's, it's different. It's definitely a feeling that I never thought I would have, you know, feeling sad, and then you're like, can be a little frustrated. There's still grieving process that you go through, you know, regardless of what how far along you are in the pregnancy doesn't matter when you know that you were going to be bringing life into the world and then you know, it doesn't happen. It can be an entire grieving process. So give yourself time, be kind to yourself, love yourself. Let your family love you know, those are all things that made the difference for me and allow for my coping to be one that turns in to something so beautiful. And so for me, it was just like, you know what, being kind to myself and letting my family and friends be a part of my journey of healing through this. And it's been great for me, I just say, you know, tap into yourself tap into your loved one, and you will make it through. This is not the end, you know, you can absolutely a lot of people feel like once they miscarry that they will never have children. And that's not true. You know, our bodies can do amazing work, and it will happen for you. Don't give up. Just be kind to yourself. Stacey Simms 33:33 Be kind to yourself, indeed. Hey, you have already mentioned I always ask people what's next? You have already mentioned that this is a series of books. Yeah. What is the plan here? So when it you know, is there another one in the works? Is it already planned out? Shaina Hatchell 33:47 Yes. So you this is exclusive right here, this is elusive. So there are actually two more books that I already have in the works. I'm going to of course release them one at a time. So the next book is going to be Shai learns about home management, and Shia is going to meet her very first friend. And her friend's name is Trevor Garcia. And Trevor is going to have type 1 diabetes as well, Trevor will have been diagnosed earlier than her. So he'll have diabetes since he was three years old. And they're going to meet at her first clinic visit, the first follow up in the waiting room. And the families of course, are going to connect, and they're going to talk about some of the things that they've been doing in the home. So the very first book again, I'm just going over the journey through being diagnosed, I don't yet start talking about the treatment, right, the whole management, that aspect of it, so I'm gonna give that in the second book. And then the third book, I'm like, super excited about the third book. I'm excited about the second one, but the third book, I'm going to be introducing type two diabetes into the series, and it's going to be Cheyenne learns about type two diabetes and it's going to be shy and meeting her bye babysitter so the family is going to need a babysitter. And they're not going to be wanting to trust just anybody right because Ryan needs a lot of care and so they end up getting a young lady as a teenager by the name of Kenny and Kimmy is going to have type two diabetes is going to have had been on you know, for favorable influence therapy but has been doing really well with eating healthy and exercise, lifestyle modifications that she's going to be on just like basal insulin and Metformin, and she's going to teach Shai about the difference between her type one diabetes and you know the type two diabetes that she has. So I'm really excited about introducing Kimmy into this Shire learns world and starting to kind of merge type one and type two diabetes so that we have an understanding of each other. I've heard a lot of mean things being said about type two diabetes, like you know, they don't have as much work or things like that and i i Don't like that that is kind of like the conversations that are had or that they're even compared in that way. I think it's time that all types of diabetes, you know, what the the main two types of diabetes really start to understand each other a little bit better. So I'm really excited about that one. Stacey Simms 36:14 Oh, that sounds fabulous. I'm with you. I think we're all stronger together and a lot of misunderstanding. Shaina, thank you so much for spending time with me. I am so excited about this project. I know how important these books are to families. And I'm thrilled that you've done this and it looks beautiful. So again, you mentioned the illustrator at the beginning, kudos to her as well. But thank you so much for joining me. Shaina Hatchell 36:35 Thank you so much for having me. I really enjoyed having this conversation with you today. And I am super excited for everyone to continue to see what Shailene has in store. Announcer 36:51 You're listening to Diabetes Connections with Stacey Simms. Stacey Simms 36:57 More information about Shia learns and their whole story. I'm gonna link this up in the show notes. The episode homepage is always at Diabetes connections.com. There's also a video that she did with jdrf. I'll link that up as well, really nice explainer. She did a live on Facebook a couple of weeks ago. So if you want more information, we will put all of that there as well. And right now her book is not on Amazon is my understanding, but still shipping from her website. Again, Diabetes connections.com. For all of the details. tell me something good in just a moment. But first, diabetes Connections is brought to you by Dexcom. It's hard to think of something that's changed our diabetes management as much as the Dexcom, share and follow apps. The amazing thing to me is how it's helped us talk less about diabetes. That's the wonderful thing about share and follow as a caregiver, a parent, a spouse or whatever, you can help the person with diabetes managing the way that works for their individual situation. Vinny and I have had multiple conversations over the years about how to use share and follow what you know what works best for us when he was nine. It's a lot different. When he is 15 and these conversations really help us have fewer conversations if that makes sense. You think Dexcom internet connectivity is required to access Dexcom follow separate follow app required. learn more, go to Diabetes connections.com and click on the Dexcom logo. All right, we have some terrific Tell me something good stories. If you've got one, you can always send it to me through social media or Stacey at Diabetes connections.com and Mandy writes in hi Stacey, I have something good to share. My type one daughter Maddie entered high school this year and she made the JV cheer team. She is beyond thrilled and excited. me I have to say I'm a bit nervous considering our current pandemic situation and in type one and managing the ups and downs of physical exertion on her blood sugar, but I'm also excited for her to have this experience safely. Have a great day. Mandy, thank you so much. And I hear ya you know, no easy decisions, the stays, but she sent me a picture of Maddie. I asked for cheerleading picture and it hadn't started at the time. So hopefully Mandy, you can send me another one and we'll do a follow up in the Facebook group because I'd love to see that. I do have a true confession sort of thing about cheerleading. And this is kind of embarrassing, but I'll tell you anyway, when I was in high school, I tried out for the JV cheer squad. I was a freshman or sophomore year. I don't remember that. But I was in high school. I can't do and I couldn't do at the time split, a cartwheel, and anything that required cheerleading skill. It might have just been my school, but I think it was also the time. It truly wasn't the incredible sport that it is today. Did I make the squad? Absolutely. Was I captain of the JV team? You bet. Why? I don't know. Looking back. I think it was just force of personality. Because it certainly wasn't my skill. I had fun but I was also on the swim team all throughout high school and it was just a little too much for me to do so children was one and done but it was a really fun experience. Another Tell me something good comes from bond Who says here's my new meow Miss Charlotte and posted a picture of her cat. She said I needed a companion doesn't alert like my dog Sammy could but it is love funny that cat is beautiful. So welcome Miss Charlotte and if you want to see these pictures, you can go to Diabetes Connections, the group in Facebook, if you have a Tell me something good just send it to me You can post there or send it to me as I said at Stacey at Diabetes connections.com in innovations this week, last week, we talked a little bit about listener made hacks. But this week is all about the pros. I want to tell you about FDA approval and some new studies about hybrid closed loops. big announcement for Medtronic recently FDA approved the mini med 770 g for people with type one diabetes down to age two and it lets caregivers See real time CGM and pump data this is on the smartphone. Interestingly, I didn't think this made a big splash when it was announced last week, I would have thought that a share and follow system from Medtronic would have made a bigger punch through of the news that we've been hearing lately. Maybe I am missing something. The whole system is the pump, The Guardian sensor, three, the mini med mobile app, and it is compatible iPhone and Android and the Accu check guide link meter with Bluetooth and that if you talk about the mini med 770 g system, that's what you're talking about. So I will link up more information about this. They are taking orders already for this system. So if you're a Medtronic person or want to learn more, I've got information in the show notes. Another system already approved, but more information about was in the news recently as well and that is the Tandem control IQ for younger children. So this study was for kids ages six to 13. In this study, they spent about three tene hours in range, which is an average gain of about two and a half hours after four months of the study, which was supported by the National Institutes of Health and published in the New England Journal of Medicine, there were also no severe cases of low blood sugar and there were no cases of decay. The city basically confirms what came before because the FDA has already approved a control IQ for kids as young as six years old. And again, more of this study in the show notes as well. Doesn't really matter how high tech the pumps are if we cannot afford the insulin to put in them. So I'm always on the lookout for insulin pricing stories. This one is not about fast acting, which would go in the pump. This is about a lower priced insulin that is basically a knockoff of Lantus. I never know how to pronounce these new insulins. I think this one is pronounced Semglee. It was launched here in the US at the end of August, and it will cost nearly three times less than the list price of Lantus. DiabetesMine points out and I'll link There article that this is the first time in a decade in more than a decade that the United States has any insulin with a list price lower than $100. I should note that is for a box of five pens, so it's $100. For five pens, it's not $100. For one, I really want to make that clear. At the same time, little editorial. I mean, how much does it cost to make So while we're celebrating a lower price, and a lot more work still needs to be done and there's a it still remains to be seen. If the pricing changes, right? Will the other long acting insulin prices come down? Or will simply price go up? I know I sound cynical if you're a newer listener, I apologize. But it's been a long time since we've had any actual good news in this so I will wait to be seen. I would like to be impressed. So let me know if you buy Semglee if you're if your insurance covers it, if you have experience with it. I would love to know how it works, how it compares to Lantus. I'm sure we'll hear more about that it gets out into the real world and what the price actually turns out to be when you go get it at the pharmacy. So let me know, if you have something for innovations. It can be something as complicated as these large studies and approvals. Something as simple as a hack that you do something that you have created to make your life easier with diabetes, definitely let me know you can email me or you can drop into the group or just ping me anywhere on social media. Before I let you go, I mentioned at the beginning of the show, couple of diabetes events coming up that you'll want to make note of TCOYD is having a big virtual conference in October, take control of your diabetes is a terrific conference. It was mostly geared for adults with type one, I went to one of their in person conferences A while back, but they have added more for parents of children with type one. So something to look into. If you fall in either group, I highly recommend TCI D it's also for people with type two, and I think we just could use more events that crossover and really help the entire diabetes community so kudos to them Plus, they have so much humor that they Using their presentations, really great people and friends for life, which usually has a conference in the fall in Falls Church, Virginia, they have moved that is this virtual Of course, it will be in December, I will link up more information about both conferences at Diabetes connections.com on the episode homepage for this particular episode, but definitely check out friends for life, they did a terrific job of their large their big, big July conference making that virtual, this more regional conference, although this year, it's probably worldwide because anybody can join in virtually, but it is a smaller scope. It's not gonna have as many days, it probably won't have as many speakers, but I'm still learning more about it. And I hope to take part in that as well as a speaker or a presenter, but I'll definitely go as an attendee. So check that out as well. All right, thank you to my editor, John Bukenas from audio editing solutions. Thank you so much as you listen, I really appreciate you being here. I'm Stacey Simms and I will see you back here next week. Until then, be kind to yourself. Benny 46:04 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All rounds avenged Transcribed by https://otter.ai
It didn't take long after my son was diagnosed for someone to tell us, "Kid first, diabetes second." Benny was diagnosed in 2006, but that phrase has been around a long time in the diabetes parenting community. I get it. We shouldn't take away all the things that make childhood fun and special, because of a diagnoses of T1D. We also don’t want diabetes to be the first thing people think about when they consider our children and we don’t want diabetes to dictate every decision we make. But the more I think about it, more I think that phrase misses the mark. Check out Stacey's new book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription: Stacey Simms 0:00 This episode of Diabetes Connections is brought to you by The World's Worst Diabetes Mom: Real Life Stories of Parenting a Child With Type 1 Diabetes available at Amazon as a paperback eBook and audiobook. Learn more at Diabetes connections.com Announcer This is Diabetes Connections with Stacey Simms. Stacey Simms 0:26 Welcome to a mini episode of the show. I'm your host, Stacey Simms, and I'm really glad that you joined me for this now these episodes I do occasionally are more. I'd call them more editorials. I do interview shows week by week if you're a longtime listener, you know that but this year I added in these mini episodes these minisodes just me, I am not a medical expert. This is more mom to mom advice. Just from my experience as a longtime parent of a child with type 1 diabetes, what I've learned and what I think can help. My son was diagnosed with type one when he was 23 months old. Stacey Simms 1:00 that was back in 2006. He is now 15 and a sophomore in high school. Oh, my goodness, he is he's very comfortable with diabetes is very confident. He's very independent. And while we are far from perfect, we are doing a great job according to our endocrinologist, and that's all I really need to hear. This subject has been on my mind for a while. So let's just get into it. I want to talk about the saying, kid first, diabetes. Second. It's been around our community for a very long time, probably longer than I've been a part of the community almost 14 years now. But I just don't think it works. It doesn't work for me. I don't think it works for anybody. So let's talk about it. What is kid first diabetes second all about? I think we know what it's supposed to be right? You hear this most often right after diagnosis. And it means that you know, your life shouldn't change that much. Stacey Simms 2:00 From what it was before, or you know, you shouldn't take away all the fun things that make childhood childhood. And we don't want diabetes to be the first thing people think about when they consider our children. And we don't want diabetes to dictate every decision that we make. Now for some people, kid first diabetes second means letting them have a giant Sundae, or go to a pizza party. Now it doesn't have to be all about food. I did say it to myself years ago when I let my son go to regular sleepaway camp, not diabetes camp for two weeks when he was eight, and he has gone a month every year since then. So I've said that to myself, right kid first, diabetes, second, let's do this. But the more I think about it, the more I think it misses the mark. Kid first diabetes second, isn't right. It seeks to separate the diabetes from the kid, which is impossible to do. Or maybe it's not impossible, but it doesn't sit right with me. Stacey Simms 3:00 Here's why implies that you're sort of cheating on diabetes. We're going to put diabetes aside, we're going to put it second. So we can do this other thing that every child should be able to do. Put the kid first, what we're saying is that kids with diabetes, shouldn't be able to do that shouldn't be allowed to do that. You're just letting this be a special case, because it's fun. And it's about being a kid. It's as though we're saying diabetes can't be part of a real childhood, a good fun, a wonderful childhood. take it one step further. And we're actually implying that diabetes can't be part of a good fun, wonderful child, or ultimately a person. It sounds dramatic. I know. But I really don't think it is. Looking at this a slightly different way. I talked about it just a bit in my book, the world's worst diabetes Mom, I use the analogy of the Hulk there. Alright, so when Benny was very young and ready Stacey Simms 4:00 He was diagnosed just before he turned two. We couldn't explain to him exactly what was going on, you know, you know, when your blood sugar is high, you can be so grumpy, you can be unreasonable not that a three year old is always reasonable to begin with. But it was so hard to explain to him what was going on. And it wasn't until, I mean, really till about age four or five, that we were able to start working on a few strategies to help and one of the best involve the Hulk. We started telling Benny that he was a lot like the Hulk. I don't have to explain to the Hulk is right, the Marvel superhero, big green guy, comic book, TV show, movies, that whole thing. Okay, so we started telling Vinny that he was a lot like the Hulk when his blood sugar was high, and he felt angry and mean. But unlike the Hulk alter ego, Dr. Bruce Banner, we said he could learn to control the big green guy. So we started by having him recognize that he was high. This was before the days of Dexcom for us, so we would just test blood sugar, and then Benny would work on removing himself from the situation. He could go Stacey Simms 5:00 It was room and beat up a stuffed animal. Or he could yell into a pillow. He could sit quietly with me, he could color he could drink water, he could be mad. But he couldn't release the Hulk on other people. It wasn't perfect, but it really helped him process what was going on in language that he could understand as a little kid. So fast forward to the Marvel Cinematic Universe. And this is, of course, the movies, the Avengers movies, and we're big comic book people. We have seen every MCU movie together by family, we all have our favorites. This was really as an aside us such a fun part of our, I don't wanna say our family history that sounds very high and mighty. But my children really were old enough to see these kind of movies just as they were coming out. And now they're older and they don't want to be with us as much and we were able to see all of them together. And it was fun in between arguing about the theories and talking about the characters and we saw the last I want to say four or five movies on preview night I would get tickets on the Thursday before they were released and we always will Stacey Simms 6:00 A big deal about it. So it was great. And if you're familiar with the movies, or even if you're just familiar with the character that you know, the Hulk is always struggling, but the character is right. He has two distinct sides, Bruce Banner, and the big green guy, and they work in opposition. And that's kind of what we were telling Benny right this side can't understand that side. Or you know, when you're high. You're not you. You've got to get control over that part of you. Then we saw Avengers endgame. And I almost fell out of my chair when smart Hulk showed up. I What is he? I guess he's called Professor Hulk. But whatever he is called. Bottom line is that Dr. Banner has figured out a way to embrace his Hulk side, and the two are at peace. I looked this up. Yes, I did some research into Professor Hulk. Marvel says equal parts intellect and brute strength. The professor represents banners ideal version of self. And that's it. That's my hope for Benny. Now I have to stop for a second and say I can Stacey Simms 7:00 Knowledge I am saying all of this as a person without diabetes, I'm the mom, I'm not the one living it. So I understand he has to find his own ideal point. This is exactly what I'm working toward. My son can't take diabetes and pretend it's somebody else. Yes, that worked when he was three or four. But in his young adult and adult life, he can't take his bad moods and its highs and lows and push them off on the other guy. I'm of course not saying highs and lows are not real. Obviously they are, they need to be acknowledged. And they in many cases need to be accommodated for by the people around the person with diabetes. But those highs and lows are part of diabetes, so they're part of him. And if Benny is able to embrace the side of him that he sometimes wants to reject, he will be that much stronger. And that brings us back to kid first diabetes. Second, it needs to change. It needs to change in our thinking to simply kid with diabetes. So what is that Stacey Simms 8:00 That mean in practice, birthday cake? Yes, that is a life with diabetes, sleep over sure that's a kid with diabetes, soccer practice without me there. Same thing. I think if we treat these events and foods, like we're somehow cheating on diabetes, or somehow separate from it sends the wrong message. I mean, think about for us without diabetes. I am not eating birthday cake every day. But I sure I'm gonna have it the next party I get to go to knowing that. Do I then have to say, woman first birthday party attendee second? Or maybe mom first mom who really needs to eat more salad and fewer desserts second, I mean, you share that right? There's that guilt. Right mom, first mom who shouldn't be eating cake second. And it's not always about food. As I've mentioned, milestones and events are very relevant here too. So if you're saying kid first diabetes, second about, let's say a trip with the grandparents, you know the older sibling when Stacey Simms 9:00 The grandparents did a special trip. And then a couple years later, the younger sibling with type one wants to go insure kid first diabetes. Second. Well, you're really telling your family that kids with diabetes shouldn't be able to do that. You're just allowing it, because it's fun. And it's about being a kid. It's just being a kid with diabetes. It's not easy to change our language about diabetes. I've been saying kid first, diabetes second for years. I looked it up. And it first shows up in my blog, in 2011. But words matter how we talk about diabetes matters. And our kids are listening, even when we think we're being careful. So I'm gonna stop saying kid first diabetes. Second. That is not how I actually parent and teach. It does not work for us. And it's not how I want Benny to think about his life with type one. So what do you think? Agree? Disagree? Remember, I am the world's worst diabetes mom. I'd love to know what you think you can email me Stacey@Diabetes-connections.com, or find me on social media, I'm linking up everything in the episode homepage. The show notes for this will be at Diabetes connections.com. You can find all 320 episodes of Diabetes Connections there. We also have an extremely robust search. So you can search by keyword by topic by date, and find whatever topic you are looking for. But I'd love to get your reaction here, especially if you've listened this far, and you're an adult with type one. What do you think about all this? The World's Worst Diabetes Mom: Real Life Stories of Parenting a Child With Type 1 Diabetes is available on Amazon in paperback eBook and audio book. I hope you check it out and read some reviews. It is all about our journey with type 1 diabetes, but it also features some mom to mom advice. And it gives you some suggested questions to bring to your next doctor visit that always confused me. How am I supposed to know what to ask if I don't even know what I don't know. Hopefully I can help you out there. All right, I will see you back here next week for our regular interview episodes. Thank you so much for joining me. Stacey Simms 11:00 I’m Stacey Simms, until then be kind to yourself. Benny 11:08 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All rounds avenged Transcribed by https://otter.ai
What do you use to treat lows on the go? One of the newest options is a flexible necklace, filled with 15 grams of fast-acting glucose. The Thrive Glucose Gel Medical Alert Necklace is easy to take with you, rip off and open if you need it. The idea came to first responder Kris Maynard after his own severe low had to be treated by paramedics. His family had tried to use the "red box" emergency glucagon kit but missed a vital step. More about Thrive Necklace from Glucose Revival Kris also shares that one of his teen sons has been diagnosed with type 1 via TrialNet and explains how their family is coping with that knowledge. Listen to our first episode with Kris when the necklace was a prototype in 2018 Check out Stacey's new book: The World's Worst Diabetes Mom! New segment this week! Innovations – focusing on hacks and tips and tricks to make our lives easier. Happy Bob App on Facebook And Tell Me Something Good! Join the Diabetes Connections Facebook Group! This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Real Good Foods, real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:20 This is Diabetes Connections with Stacey Simms Stacey Simms 0:26 this week, what do you use to treat those on the go? One of the newest options is inside a necklace. The idea came to first responder Kris Maynard, after his own low had to be treated by paramedics because his son didn't know how to mix up the glucagon correctly. Kris Maynard 0:44 Why am I not carrying this for something that we know that works, and as an EMT, for 100% of the calls that I've been on for low blood sugar 100% of the responses have always been glucagon is just too much and it expires, Stacey Simms 1:00 we'll talk about Kris's solution, the thrive necklace, and his son recently was diagnosed with type one. He shares that story new segment this week innovations, focusing on hacks, tips and tricks to make our lives easier and tell me something good. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I am so glad to have you on. You know, we aim to educate and inspire about type 1 diabetes by sharing stories of connection. I am your host Stacey Simms. My son was diagnosed with type one right before he turned two back in 2006. My husband lives with type two diabetes. I don't have diabetes. I have a background in broadcasting and radio and TV news. And that's how you get the podcast. Quick birthday shout out to my mom. If you are listening today. This goes live on September 1. It's My mom's birthday. And she had a great line recently that I wanted to share with you. I was talking about how amazed I was with control IQ. We traveled back and forth from New Orleans recently to drop my daughter off at college. And Benny came with us. We rented an RV. I told this whole story last week, but it was basically you know, 11-12 hours in the car there. Same thing on the way home. And if you've done a long trip of any kind, you probably know that you need to raise your basal rates. We have done lots and lots of car trips. My parents are in Florida, we're in North Carolina, they spent the summer in Delaware. So we're all over the place. Except, you know, in the times of COVID, where we haven't traveled at all this was our first trip. Gosh, since everything started since March, probably but we've always had to raise Benny's bazel rates at least 50% that may seem like a lot, but he's very active kid and you know, sitting still, we really needed to increase basal rates by quite a bit over the years. And of course now with control IQ, we don't change them at all and it does all of the work for us. I was absolutely amazed. For the two days that we were on the road. I only grabbed a screenshot of our trip there. I didn't look on the way home. But he was 84% in range for that time with an average glucose of 139, which I will take hands down any day, which it would translate, I guess to a one see if like 6.4 or 6.5. I mean, it's only two days. But that's if you're if that's how you look at the numbers, that's what you would get. Now, of course, when we got to the hotel, he fell asleep and didn't have insulin and his pump. He wasn't in my room. He was in my husband's room, so I'll blame them for that. I wait a minute. I know that. Nope. We got two hotel rooms. So I stayed with my daughter. My husband stayed with Benny and it was kind of nice to just have it was two days that we stayed there and it was really nice just to have some time alone with my daughter. But yeah, that's that sounded weird about the separate hotel rooms. So that 84% range didn't last for another 24 hours but it was pretty close. I mean control IQ once you put insulin in the pump control Q does some incredibly heavy lifting for us. I was telling my mom about this, he was texting her about how great it was going. And she said, quote, sh—y disease, great technology. And I said to her, you know, I'm gonna send that to Tandem, because I'm sure they'd want to use that slogan. Anyway, thanks, Mom and Happy birthday to you. We have a lot to cover. This week, I've added a new segment called innovations which will be coming up after the interview. So let's get to it. Diabetes Connections is brought to you by One Drop, and One Drop is diabetes management for the 21st century. One Drop was designed by people with diabetes for people with diabetes. One Drops glucose meter looks nothing like a medical device. It's sleek, compact, and seamlessly integrates with the award winning One Drop mobile app, sync all your other health apps to one drug to keep track of the big picture and easily see health trends. And with a One Drop subscription you get unlimited test strips and lancets delivered right to your door. Every one drug plan also includes access to your own certified diabetes coach have questions but don't feel like waiting for your next doc Visit your personal coaches always there to help go to Diabetes connections.com and click on the One Drop logo. I met Kris Maynard more than two years ago, it was July of 2018. We did an interview on the floor of the friends for life vendor area. I mean, you know what I mean? on the floor of the vendor area, that big open area, we were sitting at a table, but doing the interview various how I realized my microphones were not meant to be held. I will link back to that first interview, and you will hear a lot of that (microphone noise). That's why I bought microphones standards. But Kris Maynard's product that he brought to friends for life in 2018 was the prototype for what's become the Thrive Glucose Gel Medical Alert Necklace. He was there to get feedback, see if there was a need for the product. Kris is a first responder who lives with type one. At that same conference. His family went through trial on that testing. One of his teenage sons was found to have the markers for T1D, we've got a lot to talk about with Kris Maynard. Kris, thanks for coming on with me. It's great to talk to you again. I can't believe it's been two years. How are you? Kris Maynard 6:11 I'm doing good. It's I'm excited to be here. Stacey Simms 6:14 So much has changed. And I want to talk about not only your product and your family, there's a significant change there as well. But you caught my attention recently, because it looked like you were on Mount St. Helens. Can you tell me a little bit about what you've been doing? Kris Maynard 6:29 Yeah, well, it's something I've always wanted to do. I mean, it's really a way that I really wanted to be at a test or product. And I've learned over the last couple years, how much I love diabetics. I love being around other people that's living with the disease. So I wanted to be able to just challenge other diabetics to join us into making that hike. And I mean, it was something that physically was the hardest thing I've ever done in my life. But at the end of the day play it was so enjoyable. absolutely loved it. How long Stacey Simms 7:01 was it? Kris Maynard 7:02 round trip? It was a total of about nine to 10 hours. Stacey Simms 7:06 Now pardon my ignorance, but when I think of Mount St. Helens I only think of I think like so many people. I think of it as a an active volcano. Kris Maynard 7:15 Yeah, yeah. Okay, just make sure I'm not wrong. No, you're exactly right. 40 years ago is when it exploded here in Washington State. And we live about five hours away from it, and it just covered our city with ash. And so I was I don't remember five years old or so at the time. And I just remember wearing the masks really, of what we see being worn around today. Stacey Simms 7:41 I'm a child of the 80s I remember it's one of the the significant news events of my childhood like when they say what do you remember when you were a kid? You know, that's one of them. So living around the area, and again, pardon my ignorance, but people are allowed to climb now and you can go up there, there's no restrictions, Kris Maynard 7:56 correct. But you need permits to go there. We actually bought Tickets before co started because in April's when they start selling the permits, and those permits sell out within the first day or two. And so we got ours then to where they only allow 100 people to go up per day. And so it just happened to be that last week was our magical day. Stacey Simms 8:22 And you had a look at the pictures. You had young people, you had diabetes educators, was almost everybody in the group, part of the diabetes community. Kris Maynard 8:30 Yes, well, the most encouraging thing to me was two things is one person during the first mile was ready to call it a day. It was just too complicated in that first mile, and we'd kind of just gathered around and saw where she was struggling and she continued on was able to finish it, which was amazing in itself because when we look back, that first mile was 100 times easier than the rest and then 13 year old who's got type one. And I just physically think how hard and how exhausting it was for me. And to think that that 13 year old, was able to do it, because he had his struggles along the way as well. But for him to be able to enjoy that with his dad was just, I mean, encouraging and motivating. For the rest of us. It was amazing that he was able to finalize that exhaustive day. Stacey Simms 9:29 Did anybody need the thrive necklace, Kris Maynard 9:32 three people used it. In fact, the 13 year old ran out of supplies. That was the last thing that he had on the way back in about two and a half miles left, which was amazing because the cell service on that mountain was better there. And sometimes in the some houses or buildings that we go in and out. So he texts me saying, Hey, we just ran out of supplies. I'm worried for my son. Who just ran out of his food, his drinks and everything else. And so he said he just used the necklace. I don't know what his number was, but and then afterwards, he said it bounced back up to 157. But there was also other problems that he was also going through between the cramps running out of water. So it really wasn't about the necklace. It was being with other diabetics making that climb. Stacey Simms 10:28 Well, yeah, and I guess that's a good point. It's a good place to run out of supplies. If you're surrounded by people who also have their own. I assume that they shared with him or he got down. Kris Maynard 10:37 But I mean, by that time, we were separated, we were actually done. And so I we had to drive back to the finish line. And a friend of mine that was with me, I couldn't make the trek back because my legs were just cramped up and stiffened up and the buddy of mine who's in better shape, ran that last two miles to be able to get supplies. So, the buddy was amazing. He was the former firefighter. And another person was able to call 911, just in case, and then to see him walk that finish line to where you wouldn't have noticed that he was tired at all, or that his legs were stepped up at all. So yeah, I mean, it was fun to be able to embrace at the end and just cheer him on. And that's really beyond seeing him at the top of the mountain and then seeing him finish no one the struggles that he went through. Stacey Simms 11:30 Alright, let's talk about the thrive medical alert necklace. Give me your elevator speech. What is this? Yeah, Kris Maynard 11:37 well, it's funny because when I saw it a couple years ago, at the friends for life conference, really still at that point, it was just an idea. And we needed to figure out if it was something that was wanted or needed on the market that kind of helped formulate along with messaging that we're going through with other diabetics on now we need to make something out of it. And so learning that 80% of the diabetics Don't carry glucagon. And from the EMTs perspective 75% of the EMTs cannot administer glucagon can't give injections or can't give IVs. And so I look at it from the EMT side and from the diabetes side. So really the elevator pitch for us is we have the only wearable product to be able to help with the most common issue that diabetics face which is low blood sugar by using what EMTs use, being able to use it for any level of low blood sugar from a low to a severe state. Stacey Simms 12:35 No, let me just clarify that because I've always confused when I hear that one of the EMTs do how do they treat low blood sugar if they come across someone who needs that kind of help? Kris Maynard 12:44 Well, I'll take you from a time that I was unconscious camping with my kids is that they take the glucose gel, bring it and rub it on their finger and just massage it on the gums to become absorbed. And it was funny because that But it happened to me. I've administered it many times throughout my career, but I just never thought of carrying it myself because we always had glucagon. Well, that time that the ambulance was called for me, my son administered the glucagon for me called 911. What I thought that he knew was how to properly put it together. He didn't mix the two together. And so that was our failure on teaching him. But that's when I thought, why am I not carrying this for something that we know that works, and as an EMT, for 100% of the calls that I've been on for a low blood sugar 100% of the responses have always been glucagon is just too much and it expires. And so at that point, we're just thinking of a cheaper alternative that's really easier to find. Stacey Simms 13:53 So what was the reaction when you went from idea to product because when I last talked to you, we're not shipping as He said this was something more of a concept. What was the reaction? Right back to Kris. But first diabetes Connections is brought to you by Real Good Foods, introducing real good entree bowls, real ingredients, high protein, gluten free and low carb. So what are they're talking about here they mean Mongolian inspired beef, lemon chicken, lasagna, chicken. Real Good Foods is here to make delicious foods. We feel good about eating. And by adding these entrees, you can really see where they're going here. They want to make nutritious foods across every meal, snacks, even desserts, but they're delicious ice creams readily available at the local grocery store. We can get our products at the Harris Teeter, they have them at Walmart. Now not everything is in every store so you can find their guide. Just go to the website. You can even get a great coupon right now. And you can order online for everything that they've got. Find out more about Real Good Foods. Just go To Diabetes connections.com and click on the Real Good Foods logo. Now back to Kris and he is answering my question about the first reaction he got to the thrive necklace. Kris Maynard 15:14 overwhelming. Because again, I was thinking and an idea that day worked for me. And that's really where it was going to go to until my endocrinologist came back and said, You ought to make that available to all diabetics because you don't know how many or who you can help. And so that's when we took it to friends for life after that, and then seeing the reactions of people touching it. There was fun to see, in really all of this. The most exciting thing for me is being able to meet diabetics because before I went to that conference, there was only one other diabetic at that point that I've ever met or known. And now since then, I've met thousands. Each one of them. I get excited to meet because I love hearing their stories. I love seeing what works for them. And I love being able to share how we can help them as well. Stacey Simms 16:07 So tell me what the necklace actually is. Can you describe it because obviously, this is a podcast, we're not looking at it, although I will link up the website so people can see what it is, Kris Maynard 16:15 yeah, thrive glucose aid. It's implemented as a medical alert necklace. And as it's pulled off, I mean, it's held on by magnetic connectors. So it can really I just say rip it off, and then it becomes uncapped, like a toothpaste container. And it's just squeezed out. And you can put the tube right onto the gums, if that's the state that the diabetic needs to be able to get the help. Or I can just take it off and put it in my mouth and really just squeeze it out myself to just get my blood sugar back up. Stacey Simms 16:48 And when you say it's also medical alert, it's got the medallion on it. Tell me about that. Kris Maynard 16:52 Well, I went through a two year process, we put the blue circle on it as the symbol of diabetes because I wanted people to be Got to recognize it knowing that this is for diabetics to be able to help diabetics. And I mean, it took me two years to be able to get permission to be able to use that from the International diabetes Federation to whereas on the backside, is where it says type one diabetes or diabetes, so that again, it signifies if an EMT or someone looks at it, if they don't recognize the blue circle, they can see that it is a person with diabetes. Stacey Simms 17:26 I know you've heard this, so it's not criticism. But what do you say to people who tell you? Look, Kris, this is great, but I can just throw some Smarties in my pocket. Or, you know, I've got the icing with me, what do I need this for? I wouldn't argue with that at all. Kris Maynard 17:43 Because I mean, when I learned that only 58% of diabetics carry something to treat with hypose that concerns me that concerns me that 80% of the people don't carry glucagon. So it's that 80% that I'm scared for and I want to To help if people can eat something, or drink something, that's what I want them to do. Matter of fact, if they're conscious enough to be able to take something else, we don't want them to use the necklace because there's more cost effective alternatives. Matter of fact, with me, I carry a, like a eight ounce juice really wherever I go to where I'm saving the necklace for my wife, kids or someone else to where if I can't administer it to myself, they know where to find something. They don't need to go look in a duffel bag, a drawer, a car, wherever it might be. They know where to find it, they can rip it off and now administer it to me. Is it refillable? It is and that was another process through our FDA attorney from the get go she said it cannot be bought. Why is the question Stacey Simms 18:48 in the way I did you heard me like bracing. Can you kind of Yeah, because I remember it couldn't be at the time but Kris Maynard 18:53 yeah, it took about six months to be able to figure out that on being able to have them Make it refillable, because from the get go when we initially started about, we wanted it to be refillable to be more cost effective for the diabetic. So that was hurtful news when our FDA attorney told us that it cannot be and then once we figured out how to make it refillable, then we got back on track with what our goal was. Stacey Simms 19:22 So while back, you were making these available for healthcare providers, and now I see you're making them available for teachers. Yeah. Tell me about these campaigns. How did you decide to do this? Kris Maynard 19:34 It's funny because you give me the chills when I hear that the health care workers as soon as COVID started, I'm all about the diabetic from the business side. I don't look at it, unfortunately, and I hate to admit that I don't look at it from the business side. I've never looked at coming into this business trying to make money from it. When COVID started, I wanted to be able to provide a way to all diabetic healthcare workers so that they have something And just because at the time and still today, we didn't want them to have to worry about a low blood sugar at a time that they're working their tail ends off on to helping us in our country trying to get it back to a normal state. And so I mean, we ended up giving about $70,000 worth of product during about a four month period. And now as schools are starting to begin now our goal is because the lack of school nurses and and the ones who can actually help administer anything, because ours is FDA a food product. Now, teachers, principals, friends, family, anybody can help with this. If it's needed. They don't need to wait for the EMTs fire trucks ambulance crews to arrive. Now they can help administer what's within our necklace knowing that that's what EMTs are going to use anyways. Stacey Simms 20:57 Alright, so tell me the secret. How are you? able to afford all of this and how can we help? Kris Maynard 21:03 I still have my firefighting job. And so time if you can afford me more time, I would love it. Fortunately, we did get some good press out there. And we are able to match really one per one on what we gave away versus what we're selling. And if I can continue that match in one for one, I will do this for the rest of my life, being able to get this out there until there's something else out there that can do better. And I know there's other products. In fact, one product I just picked up and I've been in deep discussion with with xirrus because I think their company that's offering one of the best solutions for low blood sugar, or a severe unconscious with their new GE Volk auto injector. I absolutely love that product. I brought that with me when I climbed Mount St. Helens just so I can have Security so other people can have that security as well. I don't look as a business that I'm trying to compete with anyone. I just want to be able to provide something for anyone that wants to wear a wearable or to have a product to where they feel more comfortable with. And I compare it to some people like apples, some people like peaches, some people like great. And that's what we are. We're one of those. Stacey Simms 22:25 I love it. It's interesting when you're talking about xirrus and the G Volk hypo pen, you mentioned at the beginning of this, that your son didn't mix up the glucagon, the traditional that red emergency box right that glucagon correctly. And so many studies show that people do not do that correctly. I went to a training, it's probably four years ago now. And I'm, you know, I'm so well educated and every year I take out the old glucagon and mix it make sure I know what I'm doing. And the CDE laughed at me because he said I was holding it wrong. I had my thumb on the back of it. So I would have actually have pushed it too early, you have to throw it like oh, throw it you have to hold it like you're throwing a dart Do not throw your look. Yeah. So I was shocked that I would have been one of the many, many people who use it incorrectly. I kind of ask you, is your son okay about what happened? I mean, I know that you probably are fine. And you know, and you've got to reassure him, but after all this time is he is he's still upset about it. Kris Maynard 23:23 Oh, he wasn't upset about it that next day. Oh, great. He knew and I knew that it was an educational thing that I neglected on, leading to him. But I mean, at the end of the day, nothing happened. I was able to after I got the glucose in my mouth, everything was fine. And so fortunately, he was able to move up and move on with his day, the next day. Wow, Unknown Speaker 23:47 that's great, though. How's everybody doing? Now? You've got two sons. They're both just they're both off to college. Kris Maynard 23:53 Yes, one just moved out this last few weeks and the other ones getting ready to move in about three weeks. And the scary part from my end is the one that's moving across the country is expected to be a type one within the next two years. And that's really something that motivates me encourages me to try to get heavily involved with the diabetes side. There's a lot of things that I don't think being done enough for diabetes, and I want to make sure that I understand the full spectrum so that I can get him the help he needs. Because really, when I was young into my firefighter career, I lost my job for two years because of a low blood sugar. I want to make sure that that doesn't happen to him. And that doesn't happen to any other diabetics. Stacey Simms 24:41 When you say he's expected to become type one. I assume you've done trialnet correct. Wow. Tell me about that experience. Had you always taken the kids through or was it something you did that you tried newly Can you can you share a little bit about that? Kris Maynard 24:57 Yeah, the friends for life conference really changed. Many things about me personally, and for the rest of my life, because that conference to me taught me so much. And that's where we were introduced to trial net. And that's where we brought our kids to get tested, including my wife, she got tested as well. And that's where we found out our son had to have the indicators that he's going to be a type one at that point was within the next five years. Stacey Simms 25:24 Has he shown any signs? Is there anything that you have to do now? Or is it just something that you kind of monitor? Kris Maynard 25:29 No, it's something we monitor, and he could have gone through some trial testing. But we left it up to him to decide if he wants to partake in that. So really, what I do is I'll take my decks and have him wear it for a few days so I can monitor him to see if his numbers are elevated at all. And fortunately, he's a good sport about it. He still doesn't like to get poked or prodded at but fortunately he's had me to figure out the ups and downs with a diabetes. So he's up for, I almost think that he's an expert in it just as much. But getting him to really, as I say, play my game so I can monitor him and see how he's doing. So the scary part for me is when he goes to college, because now we're apart from him. And so we've been in great discussions with the school nursing program, so that I mean, I'm asking them to test his blood sugar every time that he comes in for a doctor's appointment, so that they know and he knows where he's at. Stacey Simms 26:35 Are you and your wife, glad that you went through trial net, knowing what you know now? Kris Maynard 26:40 Yes, whether it's good news or bad news, I always like the truth. That just helps us to be able to prepare and educate him in the process, because I'd hate to find out in two years from now, without knowing that he's a type one thinking that we could have prepped him in some way and so He's really prepped now to become a type one at any point. I love the, of what trialnet is doing and what they offer. Stacey Simms 27:07 Thanks so much for sharing that. I think people worry about doing trial net, you know, they're not sure what they're going to find out, but I would want to know, so what's next for you? You go on up any more volcanoes you coming up with any other products? Or are you just trying to get your kids off to college? Kris Maynard 27:22 You know, going up that mountain, I said probably a good 20 times remind me never to do this again. Because of how hard it was. But now that I'm past it, I would love to go do another mountain climb. It's weird how the mind works and how forgetful it can be once you get past something. But at this point, I mean, the the group that we're with, they are more experienced than what I'm in on the mountain climbs. They want to start doing some annually. Whether we do that or not, I don't know at this point. The fun part of this journey too is that somewhere along the line Shark Tank, found us and reached out to us and interviewed me and said, Hey, would you like to be a part of the show? And thinking immediately, I would love to broadcast diabetes on a national stage. So, yes, and so they gave me one week to make a video. And that video that we made, we shared on social media and got tons of viewership tons more than what we normally do. The hard part that we've learned from that is that they said they would contact me by whatever date that it was, and we'd never heard back so we assume we didn't make it to the show. But again, what a fun experience to be able to go through trying to figure out how to put something together answering 50 questions, getting it done within one week and a video getting it back to them. Stacey Simms 28:55 So you never know they may call and now you know for the next time too. had to do that even better. But we'll keep an eye out for you. Yeah, that sounds great. And I'd love to, is that video still online? Kris Maynard 29:06 Yeah, we have it on our YouTube channel. I don't think it's on the website anymore. Stacey Simms 29:12 I think Listen, it's a great experience, right? And you never know, they could call. But we'll leave that video up, you know, maybe somebody listening will see it be able to pass it along to the right people you never know. Kris Maynard 29:23 Yeah. And again, it really I mean, two things is one I want to get diabetes on that national stage and to the blue circle. I've been in contact with the CEOs that beyond type one jdrf and the ADA on hoping that they will just put the blue circle around their emblem, I don't want them to lose their emblem, but really, each one of them has told me that they want to brand themselves and from that from the diabetes side. That's not comforting to me, because I know outside of the diabetes community, what I've learned is that the jdrf is really known as the wall And the ADA is known as illegal. And most people don't know what beyond type one. And I think if the diabetes community got on the same page, how much efforts we can make, because the pink ribbon for breast cancer, I mean, it took them about 15 years to be able to build up that, but the funding for that from the government agencies skyrocketed. And so that's what my hope is with the blue circles to get the diabetes community whether it's type one or type two, because the power numbers coming together, and recognizing that blue circle is what's important to me. So that the fundings there so that I mean, if one out of every three in our world is going to eventually have diabetes, now's the time to come together so that it can get the funding that it needs. So that one out of three doesn't need to get diabetes. Stacey Simms 30:51 I hear you. Well, Kris, thank you so much for jumping on and sharing your story and the update with us. I really appreciate it. It's great to talk to you again. Kris Maynard 31:00 It's great talking to you, Stacey. I appreciate your time so much. Announcer 31:08 You're listening to Diabetes Connections with Stacey Simms. Stacey Simms 31:14 And you could find out more about Kris and about the necklace. There's a couple of different kinds, mostly about sizes there. And there is a promo code, you can find that all at the episode homepage at Diabetes connections.com. Kris is generously giving my listeners 15% off using the promo code, blue circle, and that is all one word. And I really wish him the best. It's not easy to have both your kids going off to college, certainly in a year like this. And certainly at a time when the younger one you know, they're kind of waiting to see what happens in terms of diabetes, but I'm a huge fan of trial net. I really do think as he said, you know, you want to know and I have a lot more information on the website as well. If you want to search that up. We have a very robust search box if you're new to the show. This is Episode 320. And you can search by episode type. You can search by Subject keyword or by date, and we've done a couple of episodes on TrialNet that I would highly recommend. Alright, my new segment Innovations coming up in just a moment. But first diabetes Connections is brought to you by Dexcom. And when Benny was very little, and in the bathtub or at the pool, a kid could have spent the whole summer in the pool. I always noticed his fingertips. I mean, you know exactly what I mean. They were poked so much, they were just full of little pinprick holes. You can really see when they got wet, although I don't know if people actually know this anymore. I mean, they were like little Franken fingers. But when when you have a little kid now, so many of you are already on Dexcom so quickly, I'm not sure if you've gone through this. This is fingertips basically look normal right now. We have been using Dexcom for almost seven years. With every new iteration we have done fewer and fewer finger sticks. The latest generation the G six eliminates finger sticks for calibrations and diabetes treatment decisions. Just thinking about doing the 10 finger sticks we did every day in the past makes me so glad that Dexcom has helped us come so far. It's an incredible tool. If your glucose alerts and readings for the G six do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions. To learn more, go to Diabetes connections.com and click on the Dexcom logo. Alright, let's talk about innovations. This is a new segment I'm starting because I have heard about so many fun things over the years that you are so smart to come up with. And I want to help spread the word. So let's start talking about your innovations. Now this segment will include everything from probably cool stuff coming down the pipeline that we hear from industry and tech companies and I really want it to include your innovations and that can be everything from the woman Gosh, I wish I remembered who this was years ago. She gave me the advice of if you're in a hotel and you have insulin in the fridge or if you're leaving your home and you have insulin in the fridge you want to bring on a trip. She leaves a shoe in the refrigerator the shoe she is going to wear in the morning So she does not forget. Now I use that but I put my car keys in the fridge. Because I'm not putting a shoe in my refrigerator. I'm not even putting my shoe in a hotel refrigerator. But I do put car keys in so that you don't forget, it really helps. You can't go anywhere without the keys. And when you get the keys, if you forget where you put them, hopefully you remember you put them in the fridge. There's the insulin. So that's the kind of stuff I'm thinking of for this segment. This week. Although I guess I just gave you one there. I want to talk to you about happy Bob. Happy Bob is a new app. And it was created by a mom of a child with Type One Diabetes. Her son was diagnosed at age six. She lives in Finland, which by the way has the highest incidence of type 1 diabetes in the world. What is happy Bob, it is an app that connects to Apple Health kit, it streams CGM data. Now it gives you you know, stars that you can collect. And I think there's a bunch of apps out there that have tried to gamify diabetes, which really hasn't gone over that well because most people they just want to do less. They don't want collect points. Although that is a popular aspect of happy Bob, the big deal about it is that it gives you editorial for where you are. It'll say things like your blood sugar is 110. You are awesome. Or your blood sugar is 138. Your numbers today has been on fire. If I had a buddy, I'd be dancing right now. He was silly things like that. But the best part about happy Bob, in my opinion, is his alter ego snarky Bob snarky Bob enjoys making. I wouldn't say rude comments, but more sarcastic comments. And they're always changing. They're funny. It's just such a smart idea. Now I did mention that it links to Apple. I just found out that they are testing the Android app. So of course they are developing this. There's even a Facebook group I think or a Facebook page for sure. For happy Bob. So I will link all of that up in the show notes. I tried to get Benny to put it on his phone. But he as of this point is not interested although he did think that the snarky Bob It was pretty entertaining. kudos to them for doing this. I think it's fantastic. If you have an innovation like that, send me something I'll post in the Facebook group as well. You can always email me Stacey at Diabetes connections.com. I'm very interested to see what we come up with as a community. You've got some great fun hacks out there and some really useful stuff too. So let's help each other and spread the word. All right, time for Tell me something good. And this one is really a nice one. We don't have any huge milestones. I don't have any marathons or 50 year diversities. These are all kind of a day in the life kind of things you'll understand what I mean. Caitlin says my tea Wendy got to have her first playdate with her best friend. Since lockdown began in March. They were so happy to see each other and only had to be reminded once to keep their masks on, which was pretty amazing to me. She writes since they are four and five years old. When we left she said it was her best date. Mike Joyce said the wild flowers on the Pacific Northwest trail are pretty great. And he sent a beautiful picture he posted in the Diabetes Connections Facebook group. Also Mike writes, I've walked a third of the trail to the Pacific Ocean from Glacier National Park. Mike keep the pictures coming. That said our six year old T1D jumped off a small Cliff into a mountain Cove this weekend. She has no fear of man, everybody's getting outside. I mean, that's one good thing. We're all spending more time outside and Shelley said the rain is finally filling up our new backyard lake. If you look closely in this picture, again in the Facebook group, you can see my four year old and his new favorite way to burn that glucose and this kid is splashing. So if you have a Tell me something good. I think these are all great stories. Send it to me Stacy at Diabetes connections.com or post it in the group. Just something that makes you smile. I love sharing these stories. Before I let you go, I am working on a new episode. This will be out probably by the end of this week, and I'm a little nervous about it. So I really hope you give it a listen, I have a feeling. I've been working on this for a while that the philosophy of kid first diabetes second is really not working, actually never worked. So I'm going to be talking about that what I mean explaining it and dipping my toe into I think some pretty controversial borders. So I'm not asking you to agree with me. I mean, you haven't even heard it yet. I am asking you to give it a listen and let me know what you think that'll be out in just a couple of days. And then back to our regular you know, interview type episodes next week. big thank you to my editor John Bukenas from Audio Editing Solutions. A big thank you to you as you listen, I absolutely adore doing this every week. It is such a privilege to create the show for the diabetes community. Thank you so much for listening. I'm Stacey Simms. I'll see you back here in a couple of days for that bonus episode. Until then be kind to yourself. Benny 39:07 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged Transcribed by https://otter.ai
There's a lot of overlap between type 1 diabetes & celiac disease, including how hard it can be to get a diagnosis. People with T1D are thought to have ten times the risk of developing celiac and even more have a sensitivity to gluten. Ann Campanella went for years knowing something was wrong with her little girl and being brushed aside until she finally found a doctor who took her seriously. Ann shares her story in her new book ““Celiac Mom”” and takes some time to talk to us about her story Check out Stacey's new book: The World's Worst Diabetes Mom! In Tell Me Something Good, The Renegade Run is back and we share a bunch of diaversaries, with some interesting ways to celebrate. Join the Diabetes Connections Facebook Group! This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Sign up for our newsletter here Find out more about The Virtual Renegade Run ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode transcription Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:22 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:28 This week, if you live with Type One Diabetes, you have about a tenfold chance of developing celiac and there's a lot of overlap in the communities, including how hard it can be to get a diagnosis. Ann Campanella went for years knowing something was wrong with her daughter until she finally found a doctor who took her seriously. Anne Campanella 0:47 I mean, he listened to me which was wonderful for the first time I was not nervous mom or you know somebody who was just like, she's always got some issue with her child but the child is fine. So it was just great. Have somebody listen and go Yes, you're right. Stacey Simms 1:03 Ann shares the rest of her story in her new book “Celiac Mom” and take some time to talk to us and tell me something good. The Renegade run is back I'll explain. And a bunch of diaversaries with some interesting ways to celebrate. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I am so glad to have you along. I'm your host Stacey Simms. We aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed with type one, right before he turned two he is now 15 and a half my husband lives with type two diabetes. I don't have diabetes. I have a background in broadcasting and that is how you get the podcast. A little bit of a different focus of the show this week in that I'm talking about celiac, which does not affect everybody with type one, but I felt like Anne's story in particular really resonated and really reminded me frankly, about our own story, I think you'll hear a lot in and that perhaps you have gone through, even if you do not have celiac if you do not have a gluten sensitivity, and that's why I want her to come on the show. She's a terrific author as well. And we talked about some of the other books that she has written. Speaking of authors, I'm just gonna take a second, I have to tell you some news about my book, “The World’s Worst Diabetes Mom”, huge thank you, to those of you who have told a friend about this, who've purchased the book and then posted it somewhere on Facebook. Because you know, with the book tour being totally canceled this year, it really changed what we had expected. Although, gosh, I gotta say, I'm so grateful. I'm going to knock some wood here. It's just been going great. We already hit the year long sales goal a couple of months ago. I mean, it's very exciting stuff, but that's not why I'm bringing it up. I'm bringing it up because I just want to mention the book to clinic program. That is something new and different that I started earlier this year. I had a pediatric endocrinologist and CDE certified diabetes. Educators asked me about the book because a couple of groups purchased books and provided them to their local peace endo clinic, so that a newer diagnosed family would get a free copy of the book. I mean, how cool is that? I kind of wish I thought of it. I didn't. But once I saw it, I knew we could help. I have some wonderful sponsors who have signed on to make this work. Most recently, I want to give a big thank you to Glucose Revival. They make the Thrive necklace, a big thank you to Pump Peelz, our very latest sponsor. And of course, the people who started me on this Frio and T1D3DGear, I'm going to link up all of their stuff in the show notes, please visit these wonderful sponsors. I'm looking for groups like that people who are small businesses, let's say in the diabetes community, and this is a very affordable way to get your message out. And of course, I'm now in the position where we're looking for clinics as well. So if you’re a health care provider listening, if you see families touched by type one, we want to give you some free books, so please Reach out and let me know you can find me on social media Of course, Stacey at Diabetes Connections.com. Okay, let's talk about celiac in just a moment. But first Diabetes Connections is brought to you by One Drop. And it is so nice to find a diabetes product that not only does what you need, but also fits in perfectly with your life. One Drop is that it is the slickest looking and most modern meter My family has ever used. And it's not just about their modern meter setup. You can also send your readings to the mobile app automatically and review your data at any time. Instantly share blood glucose reports with your healthcare team and also works with your Dexcom Fitbit or your Apple Watch. Not to mention their awesome test strips subscription plan, pick as many test strips as you need and they will deliver them to your door. One Drop diabetes care delivered, learn more, go to Diabetes Connections comm and click on the white drop logo. My guest this week is the author of “Celiac Mom” and full disclosure She's a friend of mine, formerly a magazine and newspaper editor Ann Campanella is the author already of two memoirs and four collections of poetry. Her first memoir, motherhood Lost and Found has won numerous awards. And it was named one of the best Alzheimer's books of all time by book authority. I've known Ann and her husband Joel and their daughter, Sydney since our kids were young. Of course, I knew Sidney had celiac, but I never knew the story behind her diagnosis. And it turns out, she was diagnosed the same year that we found out that Benny had type one diabetes. Now look, obviously everybody who listens to this show and lives with diabetes doesn't live with celiac, thankfully. But there is a lot of overlap here in terms of having to advocate for ourselves to trust our gut, no pun intended there and to transition to a new type of life after diagnosis. So real quick, just to make sure we're all on the same page here. If you don't know celiac disease is a genetic autoimmune disease. It's not a food allergy. It does cause damage to the small intestine. It interferes with the absorption of nutrients in is a serious deal. It's not a joke. I think that's another overlap that we have with diabetes and celiac that people just don't take it seriously. I was really happy to talk to. And so here's my chat with author Ann Campanella, and thank you so much for joining me. This is gonna be so much fun. It's nice to talk to a friend for the show. Anne Campanella 6:19 Absolutely. I'm so excited. Stacey Simms 6:22 You know, I was struck reading “Celiac Mom”, how difficult the beginnings of this story are. And I want to talk about that and how you got to where the great place where you are now. But let me start by asking what prompted you to write the book in the first place? Anne Campanella 6:34 Well, you know, I think one of the reasons that this book just poured out of me was because, as you said, I don't think most people had any idea what I was living through. And, you know, you can talk about, oh, I wasn't getting sleep. Oh, my baby was not happy. She was crying, and people just sort of pat you on the head and go, Oh, you're a new mom. Everything will be fine, but writing that book was a way to go, you know, I want to get this whole story out, really for others who may be coming after me and experiencing this. Stacey Simms 7:10 So let's talk about what happened early on, as I said, even having known you, and I know and I know Sydney as the healthy happy Sydney that she is now. Yes. What were those signs? Anne Campanella 7:20 Oh, my goodness. Probably the first one was as a baby. She did not sleep. everybody around me who had new babies. They were like, Oh, my baby's sleeping 12 hours a night, 11 hours a night, 14 hours a night. Sydney would she would barely sleep six to eight hours, and then I could not get her to nap. And at the same time, I was caring for my mom who had Alzheimer's. So I was I didn't even know if I was coming or going. And in the beginning, she woke up like every hour on the hour. And again, people said Oh, she's teasing. thing or it's this or it's that. So that was one of the earliest signs, but I had no idea it was a sign right when she got a little bit older. Joel love to eat cereal, he pour a huge bowl of cereal so they would do the exact same thing. And five minutes later, she would be on the couch holding her stomach. In addition, I could see that she was bloated most of the time. And she just she had these teeny little arms and legs in this big stomach. And I thought, is she eating too much? You know, it was that big bowl of cereal more than she should eat. And as a new mom, I just had no clue. You know, was this normal was this not but then as she got even older, I knew that something was really wrong because she wasn't growing properly. She was basically head and shoulders shorter than all of her classmates and all of her friends would be growing in by inches and she was barely mean she was In the same clothes for like three years, so those were some real good signs. Stacey Simms 9:05 You know, it's, it is obviously very different from type 1 diabetes. But we, so many people in different communities get these doctor's visits where they'll say, oh, it isn't that it's this or, you know, we don't need to check because this is just the flu or she just needs to grow into it. Or, you know, every kid grows differently. And I'm curious, I know, you heard that a lot. I did. What was the tipping point for you, though, where you finally got the answer? Anne Campanella 9:33 You know, I guess I was, I was on alert constantly. And I did. I loved my family practice doctor. She was fantastic, with so many things, but she just didn't have the knowledge about celiac. And Sydney also had one of her symptoms was constipation, and that sort of the opposite of what a lot of kids have have diarrhea. So that didn't tip her off to it. Every single visit, I would ask I would talk about stuff. I was also searching on the internet. You know, day after day, when everybody went to bed for the short times that he was asleep, I'd be checking things out. But I actually had a friend who had, I think it was her niece had growing issues. She knew Sydney, she had known her as a baby, and she would hear me talk about my concerns. And she said, you know, and there is, you know, a doctor in Charlotte, who can deal with some of these things. He was an endocrinologist, and there were various factors that she felt like it might be worth seeing him. And as soon as I got that information, I was like, we are going to that doctor. And he is the one who very quickly I mean, he listened to me, which was one Wonderful for the first time I was not nervous mom or you know somebody who was just like, Oh, she's always got some issue with her child, but the child is fine. And so it was just great to have somebody listen and go, yes, you're right. If this isn't dealt with, she's going to be four foot eight. And thank goodness, he was able to rule things out. And then he sent me to a pediatric gastroenterologist who did an endoscopy. And that is what set us on the course to know for sure that she had celiac. We had blood tests done and the blood tests were so borderline that they did not show anything definitive. So that was something that was just dismissed. But when she had the endoscopy, the doctor said she had severe scarring. So even though the blood test, which everybody's like, Oh, just get a blood test, you know, you'll find out that did not give us the information we needed. The endoscopy, told us everything, and that they took samples of her small intestine. And the doctor knew from the moment he got in there and started looking. He didn't even have to wait for the test. He's like, she's got celiac, Stacey Simms 12:15 obviously, look, you and I are not doctors, we can't give medical advice. Right? Every borderline blood test is not going to lead to a positive result from the endoscopy. But I think it's a great point to bring up that if you're still not certain if you know, this is something that, again, we don't have this experience. But if you get the blood tests back, even though it was borderline, did you have to push for it or did the doctor say you know, to be sure, you know, I'm curious how you still got the endoscopy. Anne Campanella 12:41 I definitely had to push for it. Now, the doctor that the endocrinologist he was happy to do it. But in order to get to see him through the medical system, I definitely had to push because they were ready to just dismiss it. Which I guess you know, maybe that's the For a lot of people, but it did make me think, goodness for all this moms who know intuitively that something is not right. It's so important to just keep pushing and you know, to go for what you know, will help your child. Stacey Simms 13:15 So tell me about the transition. Obviously, when you get a diagnosis, we want to help our kids, we want to do what's best for them. But I laughed out loud when I read in your book, and here's a quote from it. She says, I have never been a cook. In fact, Joelle or husband and I survived for years on a diet of microwave dinners and take out food. So a woman after my own heart, I was the exact same way for many years before I had children. I didn't cook at all really, how do you make the transition from going out for Italian food bringing home big bready subs to what I imagine was a lot of food prep and cooking after this diagnosis. Anne Campanella 13:56 You know, it was horrendous. To be honest, it was so hard and I love hearing that you are not a cook either. Because you get this. And I feel like it's sort of like, God has a sense of humor. You know, I went in thinking went into motherhood thinking, well, I don't have to cook, I can get through this. And then he just turns things on. It's his head or my head. And it's like, no, you're gonna have to cook every single meal for the rest of your life and just see how that is. But how did I do it? I will tell you Stacey. It took me a good year before I felt comfortable at all. And I think I started the transition with just going oh my gosh, I have got to find something to feed my daughter. You know, I literally thought she was going to starve because I didn't know what to put on our plate. I figured out five meals. Okay, what are five meals that I can Give her that she will eat. And she actually she was starving. That was another symptom that she had. She was always starving, she would eat one meal. Five minutes later, she'd be asking for a second meal. And I'd be thinking, what is the deal? You know, am I creating a child who's going to have eating disorders because she, she wants all these meals. So we went from, I tried to find the meals that I used to pick up. Like, if it was Italian, like spaghetti, okay, spaghetti can't be too hard. And I found rice pasta and had to go searching the labels on spaghetti sauce to make sure that there was no gluten in them. Stacey Simms 15:46 So we should also jump in and say this is 2007 Yeah, while it was probably better than 1987 Yeah, certainly isn't what we have now. Oh my gosh, Anne Campanella 15:56 no, it's it's so much better now. You can actually go to regular stores and find gluten free food. Back then I went to the one health food store. And, and it was funny because it's health food. But basically the thing that they had most that was gluten free was cookies and brownies and cake and still defined actual meals. That was a challenge. I mean, you really had the search. And like one of the things I learned was, chicken is not always safe. It's often processed with gluten. And so for a couple of months, I was feeding Sidney chicken for several meals thinking, Oh, I'm doing so well. But she still was bloated. And as I was reading and researching, somewhere I ran across Oh yeah, chicken and there's a couple of brands that are safe, but most are not. So once I got her off of chicken, she actually sprouted that summer like three years. Four inches. Unknown Speaker 17:01 Wait, I did I miss something? Anne Campanella 17:02 Why would chicken have gluten? fresh chicken has a processing and it's processed with some kind of wheat flour or something that's in it. And if you read real carefully and it might be modified food starch or some other name that denotes wheat or gluten. Chicken is dangerous for people with celiac. Stacey Simms 17:24 I mean, I have to ask even closer you're talking about plain old naked chicken, not chicken nuggets, right? Anne Campanella 17:31 What? Chicken out like Purdue chicken is safe. But I don't even know what other brands but basically brands of chicken that you find wrapped up in the supermarket, and they haven't been cooked yet. Most of them are not safe. So if you go to a restaurant, and you order chicken, and some restaurants, they don't even know and they'll say oh yeah, things are gluten free and they're not And again, it's not a huge amount. And I should back up and say, people with celiac, it varies how allergic allergic is not really the right word, but how sensitive they are to gluten. But for Sydney and most other people with celiac, the tiniest crumb will set off an allergic reaction or the reaction that causes the immune system response. That's amazing. Who would think Stacey Simms 18:27 so what were your five meals? Do you remember? I can imagine you'd ever forget. Anne Campanella 18:32 Oh my gosh. Well, it's funny because we branched out since Oh, yeah. But spaghetti. Spaghetti was probably three of them. is sad to say. And when Sydney started going to school, because I'm not a cook, I would just make a huge pot of spaghetti and feed her meals of spaghetti like for lunch and it was so sad, poor child. That spaghetti was one chicken pox. pie that was like my big thing but I would make two of them at once and I could find gluten free pot pie crust for the bottom. And then I would just dump chicken and broth and vegetables into the pot pie. So it's it was not like this fantastically tasting, good tasting potpie but it was decent and Sidney loved it because she didn't know any better. And then I would roll out a crust made from like rice flour. So that was one and what else hamburgers. I could get Joel to cook hamburgers on the grill and I would just steam up some vegetables. I did have a chicken and rice meal. That was my mom's and I just changed a few of the ingredients that that's probably that about covers it maybe scrambled eggs. That was another really easy one. Stacey Simms 19:54 What happened to her once she started eating gluten free you had to have sort of a big physical Anne Campanella 20:00 Oh my gosh, the change was incredible. And it just, it made me feel like no matter what I had gone through, it was worth it. She went from being this child. And I didn't even know that this was not normal. But she went from this child who would hang out on the couch, reading all the time doing puzzles, being very sort of quiet to somebody who like would run around the house. She couldn't wait to get to the park. She had so much energy, her face went from this pale expression where her eyes look bruised to this sort of just a constant joyful quality in her face and in her skin. And then her growth was just incredible. She went from being so tiny to just being normal sized. She's not super tall now, but Within the normal range is five, three. And she started playing basketball. She had energy to do things. We used to take her to the park before this and like we bring her bike and she ride for a little bit and be like, I'm tired. I want to stop. She just was irritable. Oh, the other thing, the biggest thing she slept on the first day that I was able to eliminate all the wheat from her diet. She slept through the night, for the first time. I knew that. I will actually I didn't because I was so used to waking out. And I went and checked on her like, Is everything okay? But I was gradually able to sleep which was just like, oh my goodness, this was amazing. So that was that was probably the most wonderful other than it I mean, everything else was wonderful too, but to have her sleeping and just thinking oh my gosh body is working normally now. And it was incredible how quickly that happened Stacey Simms 22:04 during this time and your wonderful writer and you've written about your experience with your mother and all timers disease, this was all pretty much going on at the same time was it How were you handling all of this? Anne Campanella 22:17 It was, oh Stacey, I was a mess. I was truly mean I was caretaking both ends of life. And oddly, my mom and Sydney had the same sort of needs. Like I remember having to bave Sydney having to wash my mom, having to feed Sydney, having to feed my mom trimming their fingernails at the same time. And I was going back and forth. Part of the time my mom lived at the coast near my sister, and then eventually we brought her here and I was bringing Sydney with me to visit my mom. And that was a sweet time because Sydney would like To push her wheelchair around, and my mom would, you know, Pat her on the head and they could play ball and do little things like that. But it was so tough. And I think maybe that was part of what made the story hard for me because I, I was so concerned about my mom, because she was close to death for a long time. She had Alzheimer's for 14 years. And the last, gosh, seven years of her life, we kept thinking we were about to lose her, and then she would hang in there, but I feel like I wasn't really thinking straight, wasn't sleeping. Well, I was just existing. But at the same time, when Sydney came, there was this incredible joy and, you know, this new light a new life. And so it really helped balance the two I guess. Stacey Simms 23:52 Your book about Alzheimer's disease is very well received. You know, you've won awards. It's a beautiful book. I know you've been kind of in that world for a while. I'm curious. When you're writing a book about your child, it's a different experience altogether. Were you nervous about sharing that story? I mean, you've shared such personal things already. I guess that's what I'm trying to get to. But when it comes to your child, it's a little bit different. I'm curious what your reaction to your own writing and sharing it about Sydney has been. Anne Campanella 24:22 You are so right Stacey and I'm sure you have had the same experience. It is so different and as I was writing this, Sydney was she's now 18 but as I was writing this, she was 15 1617 and not as mature and not really wanting me to share very much so I just felt like I had to be so careful not to share things that she wouldn't be comfortable with my dash n even the book became “Celiac Mom”. Because I wanted it to be about my experience of parenting her, rather than me trying to say everything that she went through, even though I included that, and we have a place up at Lake George New York. And last summer, when I had the whole manuscript written, I read it to her out loud out loud. She's a busy teenager. And the last thing she wants to do is sit and listen to mom's writing. So she was a captive audience when we were driving up to Lake George and I thought, okay, I'm just gonna read this and this will also give Joel a chance because he's in the book to, to hear it. And it was a great time to do it because we were having sweet family time, but I was able, wherever there were any places that she was uncomfortable with, I could take them and edit them a little bit and, you know, just askers Are you comfortable with this? And amazingly, now that she's a teenager She is fine with it. And she's excited that the story is getting out and she wants it to help people. So I'm just so relieved about that. That's wonderful. Stacey Simms 26:10 How is she doing? I mean, she must be very independent. I know that college doesn't look like it's supposed to for anybody. So instead of going to school, she will be virtually learning at home this year. But I imagine that no knocks on your current cooking. I don't know what's going on. I imagine that she can pretty much take care of herself. Anne Campanella 26:28 Yes, she's actually learned where she can go get take out and she's sort of led the way for the family. And it's wonderful because I've been hanging up my apron and just not having to make, you know, meals that she didn't really care about. But she is doing great. And interestingly, when we were looking at colleges, in my mind, a place that was going to offer great gluten free food was like top on the list, but that was very far down the list for her. She cared about it, but it just wasn't the top thing. She had other sort of normal things that were important to her know like, what kind of programs the college offered where it was, was it a city or was it a country setting? You know how the size of it, it was really interesting going through the process of looking at schools with her and me being it's funny you call yourself “The World’s Worst Diabetes Mom”. I'm probably the most obsessive “Celiac Mom”. So I'm just watching every little thing and telling her Oh, did you see this? Or, oh, this, they didn't have any gluten free food here? And she'd be like, Mom, it's fine. You know, don't worry about it. I can handle it. And eventually I just had to believe it and trust that she could and she has really shown that she can. That's fantastic. Stacey Simms 27:51 Before I let you go, any advice for families who are newer diagnosed with celiac and listening because I've got to imagine like, just like you You have already said it's a devastating diagnosis. You're so happy to know what's going on. But you really do have to change everything about how you eat and even, you know, down to household appliances, things like that. I assume, right. You have to get rid of yesterday Anne Campanella 28:14 that yes, new toaster oven. Yes. I mean, we went through our cabinets took everything out and had to replace, I would basically say to take it in steps and stages because it is overwhelming. I mean, we were basically wedded to wheat, my husband and I, and to suddenly step back from that was huge, and it's really a grief process. Because, you know, every single thing in life seems like it's connected to food, and to suddenly think, oh, we can't eat our favorite stuff. We can't do this. You know if you can find support, you can find even one other person who is Going through this. For me, as a writer, I always love to read books. And I love memoirs, because they do take people through, you know, the real experience of somebody's life. So there's that. But finding a real person, a friend, once Sidney had one friend who didn't eat gluten, it just made a world of difference because she was no longer alone in it. So those are some steps as far as the cooking. There are, there are websites and there are so many more resources than there used to be. So many restaurants do offer gluten free menus, and some are safe and some are not. And I would suggest reading the reviews to make sure that people who have celiac feel safe with them. But Gosh, find somebody who can kind of hold your hand as you take those steps. Stacey Simms 29:55 Well, and thank you so much for sharing your story. I really you I knew some of it having known you. But you know to hear the whole thing is just remarkable. I'm so glad you wrote it. I know it's getting a great reception. So thanks for talking to me today. Anne Campanella 30:09 It is totally My pleasure, Stacey just enjoyed it so much. Unknown Speaker 30:18 You're listening to Diabetes Connections with Stacey Simms. Stacey Simms 30:24 More information about “Celiac Mom” and about celiac in general over at Diabetes Connections.com. And I know as you listen, you probably have more resources to so if you're in a good celiac Facebook group, if you've got good supportive resources for us, please let me know you can post it in Diabetes Connections of the group or just message me and I'll pass it along. But I think just like there's a really great diabetes community. I know there's a wonderful celiac community as well, that can help. So I'd love to get the word out about that as well. Tell me something good coming up in just a moment, but first Diabetes Connections is brought to you by Dexcom. And we have been Using the Dexcom g six since it came out points more than two years ago now, it's amazing the Dexcom g six is now FDA permitted for no finger sticks for calibration and diabetes treatment decisions. If like us, you have used Dexcom for many years that when you do the two hour warm up, and there's no finger stick, you know the number just pops up on your phone. It's amazing. I mean, it really is a big difference. We've been using Dexcom since he was nine years old, so it's six it's almost seven years now for the seven years in December. It just keeps getting better. The G six has longer sensor we're now 10 days and the new sensor applicator is so easy to use. Benny does it himself. He says it doesn't hurt. Of course we love the alerts and alarms and we can set them how we want. If your glucose alerts and readings from the G six do not match symptoms or expectations use a blood glucose meter to make diabetes treatment decisions. To learn more, go to Diabetes Connections.com and click on the Dexcom logo. Tell me something good. This week I want to let you know about an event. We talked to these folks a couple of years ago about the renegade run obstacle course race. This year. It's a little different on what isn't different this year. It's the renegade virtual run. This is happening in mid September the 12th to the 27th of September from anywhere in the world. You just complete the different obstacles the different run, jog, walk back in I think series of exercises, and you can complete them anytime you share your photos, your videos, it's a really neat idea. Very creative. I've seen some other things that have switched to online this year. And if people just get so creative with this stuff, you can find out more very easily. I'm linking it all up on the episode homepage Diabetes Connections.com. And when you register, or you donate or you know, whatever you want to do, they will send you all of the information including the list of exercises, so they're trying to make it super simple for everyone. This is a fundraiser as well. They raise funds to support the research that's going on for diabetes at Massachusetts General Hospital. So again, just find out more at the episode homepage. We have a lot of diaversaries to talk about. We had a woman I'll get her in just a second, Christina posted about her diaversary earlier this month in the Facebook group, and then a bunch of other people chimed in. But the funny part about this post that Christina started, it's all about soda and or pop or whatever you call it coke. It's actually about Pepsi for her. So Christina celebrates her diaversary every year by drinking a Pepsi Diet Pepsi, a real Pepsi. It was her 14th diversity, 14 years with type one and her blog post which I will link up as well. And you can read it if you're in the Facebook group was really great because she talks about how hard it was to make lifestyle changes. And the key was really well it was her but it was sparked by an endocrinologist who didn't scold her or make her feel bad for her lack of compliance. He just urged her to make a few small changes. And he didn't expect her to be perfect. So she talked about how she made these small changes over time. But the thought of never having regular soda again was really hard. So she decided to try to do it once a year. That's what she does every year on her diaversary, she drinks a regular soda. I think it's just an amazing way of looking at things. So I'll link up her blog. You know, when we think about all of the big stuff that we have to do to stay healthy, it can be overwhelming, I mean, whether without diabetes, but if you take it one little thing at a time and try to make that change, that's really the way to do it, and the only way to last, okay, so within the group, other people started chiming in with I want to try to do this or I think this is a great idea or here's my diaversary Beverly says she's going to do it with a root beer float once a year, and she is marking 55 years with diabetes. Tamara is talking about her three years with type two and she also had to give up diets. Soda her kidney specialist said No way. So they talked about that for a little while. Janice, who I've talked to many times before, has had type one for 65 years and Bonnie with 54 years. 37 years for Robert, I gotta tell you as a parent of a child who's lived with type one for now, 14 years, in just a couple of months, it is incredibly heartening to see all the amazing hard work perseverance and resilience, not perfection of the people who chime in when they talk about living a long life with diabetes. So thank you all so much for sharing that. And I'll share a quick story about soda for me. I used to love Diet Coke, big time. I never kept it in the house. It was my going out. We're going out to dinner, going out to lunch at work, that kind of thing. I would drink Diet Coke. I never wanted my kids to drink soda so I'd never kept it in the house. A couple of years ago. Vinnie noticed this was probably four maybe five years ago. Gosh, it's been so long, and he noticed how much Diet Coke I was drinking and he knew that it wasn't good for me. And he challenged me to give it up for a month. Could I give up Diet Coke for a month? And I challenge I don't remember what I challenged him, but I gave him something back. And so we agreed we would do it. And I easily gave up Diet Coke for a month I switched to unsweet tea, which is what I still drink, which is hard. I mean, it’s the south everybody always drinks sweet tea and I’m like no unsweet unsweetened tea, please. I can't say I haven't had a diet coke since but it is rare. It is few and far between because you know why? I don't like the taste that much anymore. It's weird how things change, right? It was hard at first. And I really kind of felt that craving. But after a month, it was totally gone. And I know if you're a longtime listener, you know me and Benny, I wasn't gonna let him win that bet. No way. So I thank him for it now because I really don't remember the last time I've ordered one in a restaurant. And certainly the last time I had one, it's got to be months and months. And just another real quick story. Don't get long here but about sweet tea. So my husband used to own a restaurant he owned and operated a restaurant for many years and He once told me if I ever saw how they make the sweet tea, I would not that I ever drank it, but I would never let anyone I knew drink it again. Because the amount of sugar that goes in there, it's not like oh, a little teaspoon of sugar per glass. I mean, it's bonkers how much sugar goes in sweet tea. I'll try to actually get a measurement of it and ask him about it. Maybe I can post that in the group too. I mean, I know that you're not drinking a lot of sweet tea. I mean, let's face it. This is diabetes podcast, but I don't know about you. I'm always fascinated by that stuff. Okay, back to the diversity. Sorry, I got off on a different tangent there. But if you've got a way that you mark a diaversary or a milestone or something like that, please let me know. You can always email me Stacey at Diabetes Connections.com or post in the group and tell me something good. Okay before I let you go quick school check in for our family because oh my gosh this year, so so far Tulane is doing pretty well as I am taping this. It's been just a week for my daughter on campus classes did start they have switched to weekly testing. They as I had said in previous episodes, everybody had to be tested before they could step foot on campus. Then it was going to be random daily testing then mandatory monthly testing. They have switched that daily testing continues but mandatory weekly testing They haven't really put out too much about why they said it was in, you know, in consultation with health officials locally. My thinking is also that they saw all of the schools that have already sent kids home, so they decided to step it up. So I'm grateful for that. My daughter seems to be holding up just fine. Of course, everybody's nervous. But you know, fingers crossed. What a bananas year. This is in terms of online school. Benny's ginormous school district with 150,000 kids is a virtual, and he is doing just fine. He just as I'm taping, he knocked on the door and said, I'm going to take a walk. He has a half hour lunch period. And he's decided to get out of the house for a little while and get off the screen. And I'm grateful for that. But he seems to be doing as well as can be expected. He's a sophomore in high school. He's got some really hard classes this year. He's got an AP class. I am optimistic, but he's a self starting kid. And I think that he'll do fine. But gosh, there's so many kids to worry about this year. And you know, my local district is doing a fundraiser for hotspots and computer access and it's really hard this year. So my heart does go out and We're to do what we can to help out has been a really hard time. But you know, I'm proud of him. And diabetes wise, I think we're seeing the numbers go up a little bit. It's not for the reason you think he's not stressed out about school, but it is because he was sleeping through breakfast and often sleeping through lunch. And so we're in that nice steady range. You know, he'd wake up at 90, but he was 90 all night and until noon, because he wasn't eating anything. And now he's getting up in school starts at 755. So he's eating breakfast, and he's drinking coffee now and he's eating a little bit of lunch. So I'm just laughing all as well, and I'm really trying not to hover Haha, but I really am in control, like you helps an awful lot too. So I think he's going to do just fine. But it was really funny to see that. You know, if you sleep through your meals, and you don't have to vote this for him, there's a lot less room for error And supposedly we will have a 504 meeting with the counselor at some point. That should be interesting. I will let you know what the heck that entails when we have virtual at home school, but I understand there's still needs to be accommodations. I'm not joking about that, but I am fascinated to see how it goes. Alright, thank you to my editor john Kenneth from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then be kind to yourself. Benny 41:19 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged Transcribed by https://otter.ai
Have you heard of Bolus Maximus? Behind that great name are two men with type 1 looking to bring new resources to the community talk about the tough stuff. This week, Stacey talks to Brandon Denson and Matt Tarro. They share their stories and what they hope to achieve with Bolus Maximus. Check out Stacey's book: The World's Worst Diabetes Mom! Previous episode with Brandon Denson (from 2016!) In Tell Me Something Good, we have a few artists in our audience and some good news for the podcast. Join the Diabetes Connections Facebook Group! This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription (Beta) Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:22 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:27 This week, the name caught my attention, but it's the people behind Bolus Maximus, who are looking to bring new resources and talk about the tough stuff. Brandon Denson 0:37 Type 1 diabetes or the diabetes community in general, is a very, very tight knit community. But there's still a lot of work to be done. One of the main things that is going to separate us is that we're not focused on pulling you out from where you are. We're more focused on coming to get you from where you stand. Stacey Simms 0:58 That's Brandon Denson. And he and Matthew Tarro, the creators of Bolus Maximus shared their stories and what they hope to achieve here in Tell me something good. We have a few artists in our audience. And hey, a big honor for the podcast. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I'm so glad to have along. I'm your host, Stacey Simms, and we aim to educate and inspire about type 1 diabetes by sharing stories of connection. I have to tell you I'm taping this episode a little bit more in advance than I usually do. Because as you're listening, it's last week, we took my daughter to college, as I'm taping it is this week, and the plan is to take more time than usual. I mean, nothing is usual this year. But as I shared in a previous episode, we're far from this college. This is an 11 hour road trip we normally would have flown but with things being how they We are driving, and we have to stay because every college is doing this a little bit differently. Her college is testing the students upon arrival for sequestered in a hotel. And then when they get their negative COVID test back, they can move in and you have two hours. I think that's the window to move her into the dorm. So I'm kind of thankful she's a sophomore this year. I was so nervous last year when we moved her and not just about she was leaving, but are we gonna have time? Are we gonna do everything right? And what about making up her bed and she didn't need any of that. But you only recognize that in hindsight, so if you haven't moved your freshman college student in yet and you are doing that, as you're listening, some point in the future really will be okay. They really don't need you there. You really don't need to do a lot. My husband did move some of their furniture around. I mean, it was very limited what they could do, he did help with that. So he is the one moving them in this year. I will not be going for that two hour window. But we're all going together. I will report back I'm sure if you follow me on social media. I'll be talking about it as well. I don't have any words of wisdom about schools this year, Benny, who's my son was type one, he is going to start the school year virtually because his whole district is going virtual. And you know, we'll see what happens. I am optimistic that next semester will be in person. But I don't know why I'm optimistic. There's no signs that point anything changing, demonstrably. But I'll keep my fingers crossed. All right, a lot to talk about this week, I reached out to the guys behind Bolus Maximus, because how could you not with a name like that? I saw them on Instagram. I thought What are they doing? And I found out and I'm going to share that with you in just a couple of minutes. And this is an effort that is really much needed in our community and I think these are the guys to get it done. Diabetes Connections is brought to you by One Drop, getting diabetes supplies is a pain. Not only the ordering and the picking up but also the arguing with insurance over what they say you need and what you really need. Make it easy with One Drop. They offer personalized tester plans plus you get a Bluetooth glucose meter test strips lancets and your own certified diabetes coach. Subscribe today to get test strips For less than $20 a month, delivered right to your door no prescriptions or co pays required. One less thing to worry about. not that surprising when you learn that the founder of One Drop lives with type one fake get it One Drop gorgeous gear supplies delivered to your door 24 seven access to your certified diabetes coach, learn more, go to Diabetes connections.com and click on the One Drop logo. A couple of weeks ago I attended I guess attended in quotes the virtual friends for life conference. And one of the topics that came up just in the conversation we were having in the equivalent of the hallway, right? We're just talking to other parents and other people with type one diabetes was men with type one and dads have kids with type one. How come there aren't more forums and places for those people to talk amongst themselves. And you know we kind of batted that around for a little while you know guys don't want to talk and you know they keep it to themselves or they want action. They don't want to talk about feelings and we've had the the dads and diabetes podcasters on the show. I think they are a great resource. There's lots of episodes I've done with men, certainly who live with type one, but just a place to like knock issues around and forums to do that. Well, that's what Bolus Maximus is all about. And yes, we will talk about that name and how it came to be. And if you haven't guessed you might be right there several reasons and things behind that name, which was fun to kind of tease out of them. So who's behind that? Well, Brandon Denson is one of the pair here. And Brandon has been on the show before he was diagnosed with type one as a high school senior, and he really wants to play college football. He joined the Michigan State football team. He earned a full scholarship there. He's a walk on and he earned that scholarship to play at Michigan State. He's played professionally and he has also been on American Ninja Warrior. Again, I'll link up our past episode with Brandon. The other half of this pair is Matt Tarro. He was diagnosed with type one in 2002. his sophomore year in high school and he will share that story in the interview. He works at tandem diabetes and one of the things that comes up when you Google Matt of like Google, everybody I talked to because I'm very nosy. One of the things that comes up is this column he wrote for beyond type one called the guy's guide to type 1 diabetes. And I will link that up as well, because as I said, There just isn't a lot of stuff. bullous Maximus has weekly discussions, they say talking about the tough stuff. And I should mention, it really isn't just for guys, I know that they're trying to walk this line here. I think they're doing a very good job of it, that these resources are mostly for men. But there are many chats where women are welcome because they really want to hear all perspectives. I will let them explain more. Here's Brandon and Matt and Bolus Maximus, Brandon and Matt, thank you so much for joining me. Welcome to the show. Unknown Speaker 6:41 Thank you. Thanks for having us. Yeah, appreciate it. Stacey. Thanks. Stacey Simms 6:44 Alright, so I've talked to Brandon before, but I haven't met Matt. And before we jump in and talk about Bolus Maximus, which by the way is fantastic. Let me just ask you, Matt, What's your story? Matt Tarro 6:57 Thanks this Yeah, I appreciate that. Thanks again, for for having us on today. So I was born in a small state of Rhode Island, East Coast. And I've migrated out to the west coast now after years of working in digital advertising. I started it, you know, Time Warner and ended at Snapchat. So wow spent, I spent a career in digital marketing and advertising. And now I work at Tandem in San Diego. So I've been out here for the last 10 months and for the release of control IQ. And so it's been awesome to be here and working in that space now, doing something that I truly enjoy. And we'd like to do. When were you diagnosed with type one I was diagnosed is a sophomore in high school. And 2002 and I was 16 years old, living in Rhode Island, going to high school, swimming, you know, doing the normal stuff that I was. I played a couple sports growing up but I really just focused on swimming. So while I was playing When I was diagnosed during that season, Stacey Simms 8:02 we're able to turn around and get back into the season. Matt Tarro 8:05 Yeah, yeah. And that was something that was Yeah, that was really cool. There's another guy who was diabetic on the team. So I felt kind of comfortable getting back in there. And 16 Stacey Simms 8:13 were you driving? Did you do remember wondering if that kind of stuff was going to continue for you? I mean, it sounds like you went right back to things pretty easily. Matt Tarro 8:23 Yeah, I did. Mostly because I felt like there was a need to do it. I think the delivery when I was diagnosed from my parents and the educators was that this is your disease. You can choose to live with it or not. I did tune out I mean, I don't want to sound like oh, yeah, took care of that. It was really easy. But we never really easy it just really no, true. So I came from medical family and my background. I wasn't going to go to medical school. But my background, you know, in my family's background was was medicine. So For me, I heard that every day at the dinner table it was always around my house. And it wasn't specifically diabetes, but it made it easier to deal with such a difficult thing. And yeah, then I then I started getting used to it. Stacey Simms 9:16 Yeah, and Brandon, we as I said, we talked we talked for an episode a while back and you were diagnosed as a high school senior. Gosh, and then you but you went on to play football in college and then professionally, how are you doing these days? How are you keeping busy during an active physically during a time when we're all supposed to pretty much be staying in and staying by yourself? Yeah, it's been Brandon Denson 9:39 it's definitely been challenging. You know, it's been a while since the last time we talked a lot of things have changed. The good worse in for better, but, but I would say just with staying active and walking a lot in always on the blades. You know the blades is I find that you know my for cardio versus running or anything crazy like that. So that's kind of homestead stand fit trying to Anyway, Stacey Simms 10:09 when did you start? I'm assuming this is rollerblades. Pardon me. I'm an old lady. When did you start with rollerblades? Brandon Denson 10:15 Man I started rollerblading. I actually let it people don't know I actually used to play roller hockey going on my brother. But by far you know I'm from if somebody Michigan but Metro Detroit, Detroit is not that far from where I grew up at. And I was a huge Red Wings fan. So Steve Iser, me and Chris, I'll tell you, all of those guys, I grew up watching those guys. I never played ice hockey. But I have I definitely have a passion for hockey. And also definitely roller hockey for sure. Unknown Speaker 10:50 Alright, so tell me what Bolus Maximus is all about. Let's start before we get to the great name. What's the need here? And Matt, let me ask you what what did you two ideas defi as the need that you could fill, Matt Tarro 11:02 when Brandon and I started to connect, it was through Instagram. And we started to communicate because I was volunteering for a nonprofit. And I didn't see what I wanted. So I didn't see somebody that I thought I should be working with President. And so I felt like I had to go out and find that person. And that search led me to Brandon Denson, because he displayed himself in such a way that it was easy for me to go, yeah, him, him and I will get along, put me in a room with that guy. And because of our personality, we're extremely outgoing. We're very charismatic, personable, and just happy individuals. It doesn't mean we don't have bad days. We learned about those bad days from each other through the conversations we started to have. And so this whole relationship really grew. From 2018 the first time we met after, you know, just kind of here in there, the diabetes space to like how many people have you met in person randomly? You like, Oh, yeah, I remember you from so so I wasn't that involved. So I never really had a chance to meet Brandon. And then by the time I did get involved, he was like the person that had to meet. And I'm glad I did. Unknown Speaker 12:23 Yeah. So then Brandon, let me ask you. So what is the need, then that you guys are getting together? You're helping each other you got good days together bad days together? What what needs are you looking to fill here? Brandon Denson 12:36 So So I think it's something as simple as if we thought that we needed that. Why wouldn't other people need that as well? Why wouldn't they need somebody to talk to? Why would they need somebody to engage with why would they need somebody to help them do their highs and lows and lift them up? We all go through the same thing we live with live with diabetes is stressful. It's a 200 to 365 24 hour a day job seven days a week. And you know, it can be very, very tough. Like, I know your son has it and I'm sure you know, you're his rock, you know, at the end of the day when he needs you or you need him, but you know, to have a community we wanted to establish in the community that we're here for everyone living with with diabetes, obviously, yes, a focus, we'd like to focus or we begin to get our focus with males. But you know, as a male there not a lot of knows that come on in this space, and I'm just gonna be completely transparent about it. The women are winning. They're winning down, you know, because they're, they're not, they're not and I wouldn't even say from a male perspective, a shame to show it. I think that men sometimes they wear this badge of honor that they don't have, you know, they don't have to let this worn out. It's okay to let that worn out and talk about the ups and downs that you're having living with diabetes. It's nothing to be ashamed about. You know what I mean? Doesn't matter if you're black, if you're white. If you're old. If you're young, none of those things matter, we just want to give a safe space. So people feel comfortable. And that's what we're starting. But we'll be working on a lot more things than just kind of bridging that gap in the community to cover everyone. Unknown Speaker 14:13 Tell me a little bit about what you're trying to do, because this is such a huge challenge. As we've said, Men don't really like to talk about stuff to begin with, which is why there aren't more resources like this, it seems What are you doing to kind of help them Matt Tarro 14:30 showing up in their space and being loud about not being quiet? And I think it's important especially now with what's happening in the United States and around the world to use your voice where you see fit and this for Brandon and eyes, but after we first met, really Hey, man, we we just communicate better with each other than we have with other people. So I was driving around I had you taken some road trips around the western part of the United States, and I was on the road for like four or 567 hours at a time. And I would use chunks of those time to call Brandon. And then we would have conversations while he was on the East Coast after work, and I would talk his ear off while I was like, I need somebody to help me stay awake. But like, we got a lot of stuff out and talked about a lot of different things where we, we understood how similar the need was, regardless of where we came from, how we were raised, who our friends were, or what we were taught, the needs still remains its support, and you need someone to show up and tell you that they're there for you to to help you. Stacey Simms 15:44 So what do you actually what are you doing with bullets? backspace. You mentioned some zoom calls. You mentioned some other ways you're trying to get guys to kind of reach out because right now nobody's doing anything in person, but you're able to communicate. Cool. Matt Tarro 15:58 Yeah, yeah. I mean, I So we've started with zoom calls, because obviously that's, you know, everybody's family. And that's how everyone's communicating. And we saw it as the easiest way for all of us to get together. And then we've been using Instagram and Facebook as a platform to start to advertise. And we've really been feeling it out. But that we knew, like I said, what we were talking about as far as a knee A while ago, sorry, my dog is encroaching on my space. Unknown Speaker 16:30 That's what zoom is all about. I wish we could show that on the podcast. Matt Tarro 16:36 He He's Yeah, he's usually with me. But so. So the, the idea was, you know, let's, let's start with zoom calls and put people in a position just to open up and see how that goes. And to say it's been rewarding as someone who knew that that was a need. And they're like, hey, let's try this. It's been great to see the reception. So we're going to start There, but our idea is to is to go and travel and find people in places that maybe they thought they, they had nobody coming to see them. So small communities, and then underserved communities, most importantly, the places that other people haven't been. And for whatever reason, won't go. So we feel like that need is a lot larger than just the male communities need to be addressed. So if we start with men, and we can address them, then I think we'll be able to, to start to maneuver our way around it to some different communities and make an impact Stacey Simms 17:40 and branch it you've already had some experience with this, I would assume just because when you've been at conferences in the past, you know, people want to talk to you about playing football. And I'm sure you've been looked at as a role model. What are a lot of the things that that guys whether they're teenagers or adults with type one, I'm curious, like, what do they ask you about, you know, what are they curious about? Brandon Denson 18:00 Um, to be honest, I like to, uh, after I speak or anything like that, or engage with anybody, anybody or share my story, I just say, you know, all bets are on, you can ask me about school, you can ask me about football, you didn't ask me about culturally how I came up with diabetes, you know, I don't really hold back from anything. And you know, I think when you when you kind of say like nothing is off limits, and that's kind of when the teenagers get DAX, and questions. Some of them raised some questions about girls or what should I do? When I play sports? What should I do on my pump? Do you wear your palm? You know, what teams have you played for? Things like that, but you know, I use my you know, I just try to use everything that I've been through, you know, as something to share, like, what would I be if I wasn't able to share that story? Yeah, maybe my story isn't this glamorous story like I you know, I had to walk on at Michigan State. I didn't What I was going to do when I when I was first diagnosed, but I knew deep down in my mind that I could still do everything that I set out to do. And you know, I wasn't going to let anybody in, especially diabetes get in the way of that. So I think when you're talking to individuals, whether they're 40 years old and just got diagnosed, or they're 12 years old, when you can share that story of everything that they that they're going through, or going to go through or have already been through that connection is, is unexplainable, you know, is is something that's very, very remarkable. Matt Tarro 19:30 And I think just just to add to that, our ability to cater to different age groups, you know, just through conversations is something that Brandon and I discovered about each other, he, him and I both have shared a lot of experience working at camps. And then we've got backgrounds working with kids in general, right through camps in school programs. Riding on insulin now. We've both been coaches for writing on insulin camps, you know, at the same time on different parts of the country and that that's a really cool part to know that there's somebody else. At any given time, who you feel like you're connected with, we want to give more individuals that opportunity to feel like that. Stacey Simms 20:13 talks to me about the name, I think people people think of the movie Gladiator, right? They think of Maximus or you know the name of the general or maybe it's maybe it's just large I don't really know. So we're just polis Maximus come from Brandon Denson 20:29 you, you must be in like both of our heads. Unknown Speaker 20:34 Like that. I like the way you broke that. Yeah. Matt Tarro 20:39 And I appreciate you presenting it like that without us ever talking or like mentioning it to you. So to reference that movie, that is a perfect example. That was personally a favorite movie of my father's love growing up. So when when I would understand what people talked about as being like a man for some reason, like all these Other images kind of fade out and then this is like Gladiator looking dude standing there with the with the wind with a sword. He's like, Who's asked, we go on a kick. And so that mentality is, you know, as a diabetic, something that you would want to carry around. It's it's almost impossible though, to always be that person in this day and age. You can't be the big bad wolf all the time, yet you have feelings, especially as a man. And so there's a play on that to be certain. The easiest way to explain it is Brandon and Matt is Bolus Maximus bnm. And there's a max bolus setting on a pump, which is a real thing. 25 units, it's the most amount of insulin you could take at any one given time. And so you should put the maximum amount of effort into your diabetes at all times. I knew my high school Latin would pay off. Stacey Simms 21:51 That's really funny. I mean, that's a wonderful explanation. I love it. In that movie, I can see that I can definitely see you as a kid, which kills me because I was a grown adult when you're away from having my first child when that movie came out in 2000. I just looked it up while you were talking. That's what happens. We're all the same age on a podcast. Yeah. But I love that because it's really, it really gets a lot of different points across. So what's your dream with this? And I know you're working together. But I'd like to hear from each of you, you know, you said when we can, again, traveling, getting in front of lots of different people who are totally underserved right now. And I think that's so needed. But it just sounds like this is a big project that you hope will will continue. So Brandon, let me let me start with you. You know, what do you really hope happens here? What's your big goal? Brandon Denson 22:48 Like you said, it sounds like a big project. But at the end of the day, you know, Rome wasn't built overnight and there's a lot of holes and gaps in you know, in the diabetes community. And when we say community we mean community as an everybody as a whole. No matter where you're from, no matter what you look like, no matter your culture, none of those demographic, none of those things matter to you. The only thing that matters is that we bleed the same color. And we go through the same ups and downs. When we speak of the community, though, I think the main goal is to bring the community even tighter. I believe that the type 1 diabetes or the diabetes community in general, is a very, very tight knit community. But there's still a lot of work to be done. One of the main things that is going to separate us is that we're not focused on pulling you out from where you are. We're more focused on coming to get you from where you stand. And that's something a lot of organizations don't do. They expect everybody to come to them. And you know, like I said, it's a lot. It's a lot of work. It's even a lot of work up to this point. We've This will be our 10th week, hosting costs. But we understand what people get from those calls, you know, and it's, it's one of those things, we've gained that momentum, and we're going to continue to gain momentum. But there's going to be a lot, a lot more legwork that has to be done. But we're willing to do the end goal is to make sure everybody in the community has a safe place, not only just to be inspired, motivated and educated around diabetes, but they feel that they're a part of this. Matt Tarro 24:35 In reality, when I look back between 2017, late 2017, around 2018, when Brandon and I started talking and the end of 2019, so almost like a two year time, end of 2017 to end of 2019. I traveled a lot around the western part of the United States. I would leave Los Angeles on two to three weeks with my dog and we would go out camp Every night and go to places we had never been to just learn about how to interact with people that you've never met before. And that how can you appreciate what they do different from where you grew up, and how you've lived. So after the years I spent on East Coast, New York City, Boston, I was there was an easy escape to get out to Montana in Nevada or Washington, Idaho. Some of my my favorite places are all in the states I've only been to in the last few years. So we're intending to go back not only to those places, but everything east of it, and start working our way into the communities to help bring people to places they've never been. And then to bring things to people that they've never seen. Stacey Simms 25:45 Brandon mentioned, and you both mentioned the zoom calls that you've done, which I know isn't exactly the way you thought to kick this off, but we've all kind of had to adjust over the last couple of months. Do you mind me asking what you talk about? Are there particular topics that have come up Matt Tarro 26:00 Our Our idea was that hosting calls was creating the safe space that Brendan mentioned before. So for us having topics that require the safe space, were obvious. Stacey Simms 26:15 That's great. Matt Tarro 26:16 Some of the things that we talked about during May was we had an opportunity to bring Mark Ayman and who, you know, is working as far as mental health is concerned during Mental Health Awareness Month, in a space that we asked him to come partake in a meeting, and he said, Yes. And that was awesome. Brandon Denson 26:38 Because we got to grow to two females that were able to join. They reached out to us to make sure it was okay. Of course it's absolutely okay. If one of them was actually from South Africa, yeah. So, Matt Tarro 26:52 so we we, you know, we probably could have made this clear in the beginning. While we do host calls for men, they are open to everybody. We spoke the Brandon Denson 27:01 last two weeks. In regards to caregivers. That was a really huge topic that we saw. And we got a lot of feedback from in regards to caregivers joining and then also people sharing their stories about about their caregivers. We had a guy put his name out there, it's I don't know if he wants me to reference him, but he has a six year old son. And it was awesome to hear from him, you know, the things that he goes through, but he also invited one of his partners, a buddy of his and in the duel between that Father Son is unique because they both have type one diabetes, which I thought was amazing, but for him to come in, to get, you know, to listen to other people in the caregiving realm and you know, also be able to also be a caregiver for himself, but then also his son. You know, I think there's a lot of weight on that. So with that, Matt Tarro 27:59 yeah, there's So caregivers, we've also talked, we did a couple of things in the beginning when we first started to host the calls that were more of skill shares. So hey, let's have the room, there's a soapbox in the middle of it, you want to stand on that you tell me you can. And it's not us making judgment or anything, whatever you want to bring to the group. So we had guys talk about graphic design, we have individual works with writing on insulin, who had a lengthy journalistic successful journalism career. And so that type of stuff really brought a different element. We talked about art, talked about different styles of art. We talked about movies, we did movies and music one week, you know, guy stuff, but in reality, that is also a way for us to bridge the gap between a difficult conversation, which we spent two weeks having, how to approach difficult conversations. laughter. You know, things really took a turn for the world. In the United States, after the death of George Floyd, and it's not something that we wanted to just bring people into a room and go, alright, let's talk about it. But that's actually what we did. And it was two of the best conversations to date. Yeah, Brandon Denson 29:15 I'll say, I'll say hands down. You know, I think you never want to jump in, like, you know, and kind of discuss the things that are going on around the world. But the things that are going on around the world and in the United States affect us directly. Was it the easiest conversation probably to open up? and not so much was everybody willing to share they did, you know, and that was very, very important because, you know, you have different cultures, different races, not looking at it from a different perspective and only seeing it and then you have people saying that they're going to work to do better. And that's all we ask. We just want better, you know, better, better, better in sports, better in school better in the community and ultimately better with diabetes better But, Unknown Speaker 30:00 you know, and Brandon Denson 30:02 I do think it's it's so important because we, so many of us are worried and nervous to talk about race. I mean, let's just put it on the table. I've had these conversations before. There's such a lack of diversity at diabetes events and on panels. And, you know, I'm always so grateful that when my son was diagnosed, I could go to a conference and see people who looked like him. And no, people had the same traditions were Jewish. I met people right away that had the same traditions and background as us. And so I know it's so important when people, people who are black people of color to see people who look like them. It's as simple as that. But it's so hard to talk about, right? We don't want to say something stupid. We don't want to say the wrong thing. Yeah, and I think that's, you know, you hit it right on the head, you know, that's, that's a big, a big hole in itself. You know, I was a volunteer for jdrf for 12 years. And then I also was a worker for close to two years. And you know, you see this this big, get caught within the workplace outside of the workplace, and you see that nothing has changed, you know, nothing has changed. Like nothing me, I'm comfortable talking to anybody. But I can't say that if I took one of the kids that I knew from the school in Detroit that had diabetes, and I took them to jdrf event that they will feel comfortable there, because they wouldn't, you know, I'll be lying if I said that, that they would, or I took them to another community event and to say that they will feel comfortable, they will feel left out because nobody is interacting with them. Like they need to be interacted with, you know, and that goes a long way. You know, I didn't have somebody when I was growing up to talk to about my diabetes, cannot sit here and say that I may be needed someone. Yeah, I could probably say that. But at the end of the day, I knew it was my disease. I knew what I had to do. Everybody doesn't have that mindset. So you know, we want to make sure we create that space. No matter how old you are, what you look like, where you're from your culture. None of those things matter. Because we just want to help you do better in whatever it is that you want to do better. Stacey Simms 32:04 Well, I appreciate you addressing it. I want to have a difficult question for the two of you, you have big goals. It sounds like when we can move around the country again, you want to get right out there. How are you paying for all this? What do you need? Brandon Denson 32:19 actually gonna see if you will sponsor you know, in a band, we'll put the logo on the side and we you know, a we will put the animated character on there. We were completely fine with that, you know, so, you know, we have a lot of work to be done as far as forming our our nonprofit and things, things of that nature. Obviously. Any nonprofit getting started from ground zero, takes a lot of work. This is grassroots, you know, but understanding the process of everything and what the process is going to be. As we look as we try to complete things they'll never be complete. It's never complete over the never be complete. And we understand that but we know that the steps to make it great are really rely on us and our board members and and, and everybody in the community. Matt Tarro 33:14 Also we are offering videographer and photography services at a super good price in San Diego, Los Angeles. That's real because that's what Brandon and I do. And that is the type of thing that we would use to help fund this project. The easiest way for us to get information back and experiences and share experiences is to tell story and stories, many of them as many as we can. And the idea would be to do that through video and photo and to go and do that. Now. I've been doing freelance work for a couple years now. It is super inconsistent. If you get a couple of good gigs and you can, you know, put your best foot foot forward and get some more work based on it. That's what we're looking to do is is to have people see what we're already doing. We're making a lot of strides in the right direction. And I think, if anything, you know, we're going to work on our nonprofit, you know, getting everything set up, but at the very least, if we want to plug anything, it's the fact that Brandon Knight take really good photos and video, and we'd be happy to do it for anybody. Stacey Simms 34:26 Everybody, okay. Matt Tarro 34:27 Yeah. Oh, no, that was just my phone. Beeping. Stacey Simms 34:30 Alright, just sounds like a Dexcom alert. Unknown Speaker 34:34 All right, just checking the mom instincts kick right in. Okay, but so it sounds like you're gonna set up a nonprofit. You're but you end and Matt you already work at Tandem? Unknown Speaker 34:45 I do. Yeah. So that and so. Unknown Speaker 34:47 Okay, but I guess my question is, so tell me more about the photo and video. Is this a business you guys have as you said freelance kind of on the side? Matt Tarro 34:55 Yeah. I never planned on even saying that on this call. We just We know that that's something that the both of us do in our own worlds that Brandon and I have operated in, you know, independently for the last 30 something years, we've put ourselves in a position now, to be in the same room with a bunch of cameras, drone tablets, I'm hosting some gallery space downtown San Diego. That's, that's what I was doing. And that's where a lot of my focus event. So for me, it's been everything, like just find what it is that you can do really well and that other people might like you to do for them. And that's been photography for me for a while. And so I've got photos and art up in there, we've created some art, we've got some t shirt designs. So the ideas have just been flowing every time we talked, like cool is another page in my notebook full. Well, I really, I've got you know, I've got a pretty good sized chunk of pages already full in that notebook of ideas, the direction we'd like to go and then reminders to ourselves about why we're doing that. Miss. Unknown Speaker 36:01 I'm so glad to learn more about this. I'm looking forward to see what you guys accomplish. You know when, like I said, when you can get out and about but even before that, it sounds like you're already feeling a great need. I really appreciate you coming on and sharing it. I hope you keep us posted. We come back on and talk about it. Matt Tarro 36:16 Most definitely, we definitely we're honored to do so. Stacey Simms 36:19 Thank you. Very cool. Thanks again. Unknown Speaker 36:27 You're listening to Diabetes Connections with Stacey Simms. Stacey Simms 36:33 Lots more information at the episode homepage go to Diabetes connections.com. The episode should pop right up it's on the main page. Otherwise you can use the search box as well. We have a very robust search. I like to mention that all the time because there's a lot to go through especially if you are new. Tell me something good coming up in just a moment. But first diabetes Connections is brought to you by g bulk hypo pen. Almost everyone who takes insulin has experienced a low blood sugar and that can be scary. A very low blood sugar is really scary and that's rich evoke hypo pen comes in Jeeva is the first auto injector to treat very low blood sugar. GMO cocoa pen is pre mixed and ready to go with no visible needle. That means it's easy to use. How easy is it, you pull off the red cap, push the yellow end onto bare skin and hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the G folk logo. g folks shouldn't be used in patients with pheochromocytoma or insulinoma visit g fo glucagon comm slash risk. Tell me something good. I was really pleased and kind of surprised to find out that we have several talented artists in our Facebook group. Suzanne shared that she finally made time to work on my art. I've missed my pencils she wrote so I asked her a little bit more about it and she shared a picture. She's a portrait artist cartoon and realistic and a graphic designer. She's been type one since 2004 but she had gestational diabetes two times prior to that. She says she's been on the pump since 2006. Her dad lives with type two. And her grandfather and his cousin lives with type one and you can see an example of Suzanne's artwork at Diabetes Connections. The group on Facebook thank you so much for sharing that. It's just beautiful. And Callie nordgren who I've known for a long time just online you know, it's part of the we are not waiting community. She said I sold a painting and that's the calling posted when I asked her tell me something good stories like you know, oh, we'll do that sold the painting. So of course I had to ask her to share more. And she does watercolor paintings. She said sometimes people ask for specific painting. Sometimes they purchase one that she's already done and she posted one which is just beautiful and she has a Facebook page as well. And I will link that up. Calling son was diagnosed with type one at one year old, very tiny, maybe 1112 months old, and he is now a happy healthy tween and Colleen and Wes are a huge part of the we're not waiting community but I didn't know calling painted until now. So thank you for sharing that. And I have a Tell me something good. And that is that the podcast Diabetes Connections has made the top 10 for health for the fifth year in a row for the podcast awards of the People's Choice. This is a podcast award for independent podcasters. Right. No NPR, not the big Corp casters, not the ones that have 25 people working on a show. This is for the independent podcaster like myself, and I am so excited to make this list. Again. It's just a thrill. They will vote on the final winner each category. I believe that comes out in September. I never expect to win that. I mean, we are a tiny little operation here, but it's such a vindication. I don't know if that's even the right word. But you know, we work really hard on this show and it is a labor of love. It's also a commercial enterprise. You hear the commercials during this show. Man I work really hard on it and to be recognized by my peers like this by my listeners who nominate Thank you all so much for doing that. It really, really helps. It's really important to me and I'm really excited to have made this list again, when we when I don't know maybe we've lost some really interesting podcasts before my favorite was the guy who puts you to sleep. He has a podcast where he literally is boring and drones on and whispers and you go to sleep to that. And you know if we can lose to that, hey, what am I going to do? I can't compete with that. If you haven't told me something good story posted in the Facebook group, send it to me, you can always reach out Stacy at Diabetes connections.com and tell me something good. Diabetes Connections is brought to you by Dexcom. When you have a toddler diagnosed with type one, you hear rumblings for a long time about the teen years. But when it hit us at full force a little early. I was so glad we had Dexcom Benny's insulin needs started going way up around the age of 11. He's grown I don't know how many inches since he was 11 years old at this point, probably eight in the last couple of years. Along with the hormone swings. I cannot imagine managing diabetes during this crazy time. Without the Dexcom continuous glucose monitoring system. We can react more quickly to highs loz see trends and adjust insulin doses with advice from our endocrinologist I know using the Dexcom g six has helped improve Benny's agency and overall health. If your glucose alerts and readings from the G six do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions. To learn more, go to Diabetes, Connections comm and click on the Dexcom logo. As you listen to this episode my kids are back in school if all has gone well we have dropped me off at college Benny has started school as you're listening this is scheduled to air the day after he starts school are virtually at home. I offered to make him like a homeschool virtual school nook in my house right I see all these beautiful pictures that people put on Pinterest and Instagram and their their kids desk is nice and it's like twinkly lights and a pillow or a little thing that says you know learning is great or whatever. And of course I wasn't serious because we don't do any of that were terrible parents and Benny laughed at me and said Please leave me alone. Unknown Speaker 41:57 So if you've got Stacey Simms 41:58 some interesting stories About your child is going back to school. And I think we all do. I'm not trying to make light Look, I know it's a serious situation. But I have only control over a few things. And that's what I'm going to concentrate on, on what I can control in my house with my kids in my community. And beyond that all we could do is vote diabetes wise, we're kind of in a groove. And with the weirdness of school this year, I don't see that changing too much. Of course, he's gonna be getting up earlier than he has since March. But other than that, I mean, we went on control IQ in January, he went off the receba and you can listen back if you're not familiar with our whole story on that he went off the trustee but in May and his blood sugar's just are great right now. Time and range is up, agency is down, predicted agency is down. I'm really really happy his independence is still really up. He's still a doofus and makes mistakes because he's a human being. And we're still compiling more world's worst diabetes monster. every couple of weeks we have a new one. That will never changed. Thank you to my editor john Kenneth from audio editing solutions. Thank you so much as you Listen, I'm Stacey Simms. I'll see you back here next week until then, be kind to yourself. Benny 43:10 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged Transcribed by https://otter.ai
Stacey Simms is the host of the award-winning podcast, Diabetes Connections, and the author of "The World's Worst Diabetes Mom." Stacey's son was diagnosed with type 1 diabetes in 2006, one month before he turned two, and Stacey started blogging about her family's experience with T1D a few weeks later. For more than a decade, she hosted Charlotte's Morning News on WBT-AM, the city's top-rated morning radio news show. Stacey's been named to Diabetes Forecast Magazine's "12 People to Know" as well the Charlotte Business Journal's "Forty under 40" and as one of the "50 Most Influential Women in Mecklenburg County" by the Mecklenburg Times. The Diabetes Connections podcast was won numerous awards, including: Diabetes Forecast Magazine: Top Diabetes Podcasts And The Podcast Awards - People's Choice - Top Ten Health. Stacey lives near Charlotte, NC, with her husband, two children and their dog, Freckles.
The Baby-Sitters Club comes to Netflix! The beloved series features a character who lives with type 1 diabetes. How did the show do portraying life for a 7th grader with T1D? We talk to New York Times Bestselling author and winner of the National Book Award Robin Benway. Robin loved the books as a child and was diagnosed with type 1 as an adult. Also this week, Mike Suarez turned his son’s story into an adorable picture book called Year One with Type One Join the Diabetes Connections Facebook Group! In Tell Me Something Good – she had a huge goal for the JDRF rides this year – of course so much had to be cancelled this year but her story took a wonderful turn.. on and off the bike. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's new book: The World's Worst Diabetes Mom! Sign up for our newsletter here The Guy's Guide to Diabetes ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode transcription: Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Gvoke HypoPen, the first pre mixed autoinjector for very low blood sugar, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:22 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:28 This week, it's all about books and a TV show that's based on books. We're talking about the Baby-Sitters Club with a New York Times bestselling author who loved the series as a child and was diagnosed with type one as an adult. Robin Benway 0:43 Oh my gosh, I'm now something that I was a fan of for so long. I can now watch on television. You know, I was thinking about Stacey when I did start to watch it. I thought it was nearly perfect. Stacey Simms 0:54 Robin Benway is the winner of the National Book Award when we talk about Stacey and the babies sitters club, what we liked what we didn't, and about diabetes in media. Plus a dad turns his toddler story into an adorable picture book about type one. in Tell me something good. She had a huge goal for the JDRF rides this year, of course, so much had to be cancelled and changed. But this woman's story took a wonderful turn on and off the bike. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I'm so glad to have you along. I'm your host, Stacey Simms, and we aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed with type one, gosh, ages ago now he was almost two and in December it will be 14 years. Yeah, he's 15 and a half 15. And more than that, I don't even know anymore. My husband lives with type two diabetes. I do not have diabetes, but I have a background in broadcasting and that is how you get the podcast which we've been doing now. for more than five years, and I have been wanting to talk about the Baby-Sitters Club for a long time, I mean, we have talked about it because many guests over the years have said that it was very influential to them, either. They read it and really were touched by Stacey's story, the character who lives with type one, or somebody else read it and diagnose them because of it. That happened at least once to one of my guests. It's really incredible to think about these books, and the impact they've had on our community. So when I saw column in Elle magazine recently, about the Netflix adaptation, I really wanted to talk to Robin Benway, the author, I knew she'd be fun to talk to just by her writing voice in the magazine, and she really was and Robin also had some unique insight about the books and about the adaptation, and I was really excited to talk to her. We also talked about diabetes in other media, you know, I think a lot of us cringe when we know there's going to be a depiction of diabetes and a show or they mentioned insulin and we Oh, we know what's coming. So it was fun to talk to Robin about that. And to kind of spotlight some good stuff that's actually out there. All right, I'm going to talk about my reaction in more depth to Baby-Sitters Club in a little bit of a review, but I'm going to do that later on. Because this is a longer episode. We've got two interviews, we've got Robin. And I also spoke to a dad who wrote a picture book rhyming kids book for about his little boy, and it's called year one with type one, and that is with Mike Suarez. So that's coming up in just a bit but first, diabetes Connections is brought to you by One Drop, and I spoke to the people at One Drop was really impressed at how much they get diabetes. It makes sense their CEO Jeff was diagnosed with type one as an adult. One Drop is for people with diabetes by people with diabetes. The people at One Drop work relentlessly to remove all barriers between you and the care you need. Get 24 seven coaching support in your app and unlimited supplies delivered. No prescriptions or insurance required there. Beautiful sleek meter fits in perfectly with the rest of your life. They'll also send you test strips with a strip plan that actually makes sense for how much you actually check. One Drop diabetes care delivered, learn more, go to Diabetes, Connections comm and click on the One Drop logo. My guest this week is a National Book Award winner and a New York Times best selling author. She wrote a column about the Baby-Sitters Club and her reaction to it in Elle magazine. That's what caught my eye. I reached out and said, Would you talk to us but to come on the show? She said sure. And we had a great conversation. Now she grew up with a father who lived with Type One Diabetes, but she herself was not diagnosed until she was an adult. So her perspective on the Baby-Sitters Club, which she loved, as you'll hear as a kid was very different because she wasn't relating to the type one aspect about it right away. I'm also curious to know what you thought of the Baby-Sitters Club. I'm going to be putting more about this in the Facebook group. We've talked about it a little bit, but we'll put more posts in there and get your take. And as I said earlier, I'm going to put a little bit more of my review, although you'll you'll hear much of it in the interview. But a little bit more later on. Here is my talk with Robin Benway. Robin, thank you so much for jumping on to talk about this. I really appreciate it. It's I'm looking forward to talking with you. Yeah, same here. Thank you so much for having me. All right before we jump into the Baby-Sitters Club, and I have a lot to talk about with that. Let me ask you just the basics. You were diagnosed as a young adult, right you were in your in your mid 20s? Robin Benway 5:28 Yes, I was 26 it was July of 2003. I was diagnosed I was diagnosed with celiac disease at the same time I was having really low iron problems I was having anemia so they started doing a lot of bloodwork just to find out what was going on and started noticing that I had elevated blood sugar levels. And my father, who was my biological father was also a type one diabetic. So once they saw those blood sugar levels being elevated, they started to put things together pretty quickly. And so I in a, you know, a very strange way felt very lucky that I was diagnosed that way that it didn't progress to the point where I had to be hospitalized or my blood sugar's were, you know, four or five 600 or something like that, that I was diagnosed sort of accidentally and was able to catch it pretty early and could start, you know, meeting with an endocrinologist and started taking insulin pretty soon after that. So there was no mistaking at that age, oh, maybe it's type two, maybe it's something else because of your father, they pretty much went right there. At first, they were like, maybe it's type two. There was a lot of I think, you know, this was 17 years ago. So I think now, the way that people are diagnosing type one and people in their 20s and 30s is very different than it was 17 years ago. I think that was when people were just starting to see that, at least based on my experience and the responses that I was getting from doctors at the time. You know, I had grown up knowing that my dad was diabetic, but in our family, we had always sort of been under the impression that once you hit 12 or 13 years old, you're sort of out of the woods of that, you know, I think a lot of they used to call juvenile demise you know, because they were diagnosis of young. So I think it was a real shock because I had always thought, okay, I'm out of the woods. I'm fine. And that wasn't the case. But they definitely did think it was type two. They started me on oral medications at first Metformin, but nothing worked. And I remember I still remember the first time I took insulin, it was just like, oh, that was the problem. You know, that's what I need because my blood sugar's just came down to right where they should be. So, you know, it was a little disheartening knowing that I was going to have to go on insulin, but at the same time, that relief of knowing that now here's the drug that works was it balanced it out? Stacey Simms 7:36 Do you remember I've been told this by other adults that I've talked to that what that first dose of insulin feels like, Do you remember that? Robin Benway 7:44 I do. Remember, I was staying at my mom's house. I was living alone at the time and I thought I don't want to be alone when I take my first dose of insulin just in case. And I remember it dropped. My blood sugar's a little lower. They were like maybe in the mid 60s, and I just remember, I didn't feel shaky but I just remember feeling less. It's that feeling of a sugar rush basically, you know when your blood sugars are high I for me personally, I definitely feel a little agitated, a little edgy, you know a little bit more, I don't know Piper's the word but just a little fuzzier. And I just remember that feeling going away. And I remember also being so terrified of like having to give myself an injection like having to give myself a shot. And I was incredibly amazed at how easy it was and how painless it was. I had always imagined that it would just be a torturous experience, you know, mostly because your experience with injections is like vaccinations or inoculations. You know, it's Earth flu shot. It's a very different experience. Give yourself a shot of insulin. And I remember feeling that relief also of Oh, I can do this. Okay, this is something that I can do. Wow. Yeah. So Stacey Simms 8:50 the article that I'd mentioned, you start out by talking about this high spot in your career, the National Book Awards Gala and then the reality of being an adult with type one, which is go to the bathroom, I get up your formal gown, you know, giving an injection. And, you know, certainly a great way to start the article. But I'm curious, do you share your diabetes experiences with your friends and family? I mean, not everybody has to be giving themselves injections at the table. Right? I know. I'm sure you're not hiding things. I don't mean to imply that. Oh, as a mom, that was the first thing I thought of was, oh, my goodness in the bathroom. She okay. Yeah. Robin Benway 9:29 You know, I obviously all of my friends and family know about it. I'm not someone who would ever conceal that part of me. It's not something that I ever feel ashamed of, or feel like I need to keep secret. That's certainly not it at all. I think. For me, it's more about I'm very conscientious of other people's reactions to blood and to syringes or needles, and I just don't want to ever make someone I definitely have known people and I've heard of people who just give themselves an injection right at the table, you know, or will check their blood sugar under the table. And for me, I'm just not comfortable. That just in terms of making other people uncomfortable, but also sometimes things go wrong, you know, like, sometimes, you know, there's a little bit more blood than you thought there would be or you hit a blood vessel when you're injecting yourself with insulin. And, you know, sometimes it's just easier to be in, even if it's a public restroom, you know, it's still a confined space. And sometimes just the privacy is sorted out is something that I prefer but in terms of being open, I definitely I talk about it. I do a lot of school visits with my job, you know, writing for young adults and young people, I do a lot of school visits. And I always talk about how I was diagnosed and how that changed the trajectory of my life. And I always say to kids, who here knows somebody with diabetes, and almost every kid raises their hand you know, whether it's type one or type two, it doesn't really matter to me, I just, I know that they can make a connection with what I'm saying and relate it to either themselves or someone that they love in their lives. No doubt. Stacey Simms 10:53 Yeah, I think that's to is the difference between my my personal experience of type 1 diabetes is my 15 year old who has made a career out Have trying to gross out his friends. Yeah, no, since the third grade watch this. Yeah, slightly different experience than a grown woman in Robin Benway 11:09 that dress. You know? It's expensive. You just really don't want to get anything on this. Stacey Simms 11:15 So let's talk about the Baby-Sitters Club. Now I'm a little bit older so my guilty reading pleasure as a kid was worse sweet Valley High then Babysitter's Club, also say, okay, okay. But were you a fan of this as a kid, this was something that you read and you look forward to. Robin Benway 11:32 Oh, I cannot even describe to you like how much I love the Baby-Sitters Club. Like, I can just remember going to my local bookstore, you know, the Walden books that was in the mall at the time when there were still Walden books in malls and scanning the shelf and just looking for the new one and either being so excited when there was a new one or so disappointed when, you know, they came out every month and you know, on day 30 I'd be like, Where's the next one you know, and sharing with your friends or your Got the new super special, so then they would loan it to you and super specials were bad. But yes, I mean, just when I think about the Baby-Sitters Club, because I've also talked a lot about, you know, what is sort of my formative reading now as a writer, like, what did I read as a child and a young adult that sort of made me a writer? I think the two things about the Baby-Sitters Club is that they were so funny. And I think I learned how to write humor and really good dialogue from those books. I think you can't really teach how to write humor or write something funny, but I think if you can see it, you can see how either rapid fire dialogue or really smart responses or interrupting each other like, that was formative for me as a writer was seeing how they did that. And then also just as like a 11 1213 year old girl, you know, that is where, and I'm sure a lot of women and girls have had this experience, your friendships just kind of implode. And nobody really knows why. But suddenly, your best friend in sixth grade is your biggest enemy in seventh grade. And the factions are changing all the time and who's friends with who and who's not friends with who and who Did what to whom it's traumatic, it's a really difficult experience. It's a big part of growing up, but it's still difficult. And the thing with the Baby-Sitters Club was that at the end of the book, they were always friends. So you could see the sort of regeneration of friendship again and again and again. And for me, it was very comforting. You know, when sort of my female friendships were in turmoil, it was so lovely to see these girls work through things and stay friends in the end. So those were, I think the two things that kept me coming back to the book, but a great way to look at it. Stacey Simms 13:29 Yeah, but you as a reader, your type one experience was with your dad. So I imagined Stacey McGill, the character in the book who has type one wasn't somebody who could really relate to that wasn't what you were reading the books at the Robin Benway 13:42 time? Absolutely not. Absolutely not. You know, I actually I shied away from Stacey as a reader. You know, I loved I moved to New York when I was 18 years old. I've always wanted to live in New York. So reading her as a 12 year old I was like, Oh, that's she's a sophisticated city girl. You know, that's how they always portrayed her. She's From New York City, but that was my favorite part of her but there were books where either she was just diagnosed or I think there's a book later in the series where she was hospitalized. And I had a hard time reading those just because at the time my dad's health he had been a diabetic for 30 years at that point, so his health had gone up and down, you know, just the nature of the disease and the nature of treatment at the time as well. It wasn't as advanced as what we have now. So you know, it was scary to see my dad go through that and I, Baby-Sitters Club was my safe place. You know, that was my fun, safe, circular path of Stony Brook Connecticut. I didn't want a hospital or an insulin shot coming into it. So I don't say I didn't like Stacey as a character. I love Stacey as a character but in terms of what she went through, I just I really shied away from that. That wasn't I was much more a Claudia dawn girl. So yeah. Stacey Simms 14:54 How did you approach the Netflix series you've lived with type one now for a while. We all know that they never get it right in In media, I really looked looked at the show. I look very much forward with a lot of trepidation. I was almost afraid to watch it. What was your reaction? Robin Benway 15:09 I mean, I literally had an alert set on Netflix to remind me that the Baby-Sitters Club will be on Friday, July 3, and then I got the notification. I was so excited for it just because I had loved the books. And you know, I don't know any of the creators personally, but I was familiar with their work and their backgrounds. And I had read a lot of articles by that point about how they had approached the material and I just had a really good feeling about it. You know, I just thought that this is possibly in really good hands. And honestly, I wasn't even thinking about it in terms of Stacey and diabetes. I was thinking about it as oh my gosh, I'm now something that I was a fan of for so long. I can now watch on television. You know, I was even thinking about Stacey, so when I did start to watch it. I mean, I thought it was nearly perfect. I thought that they kept the spirit. I love that they kept the girls young, you do feel like you're watching 12 and 13 year old girls, b 12 and 13 year old girls, you know, and all of the struggles that go into that, but all of their I don't say immaturity, but just that feeling of they're still young, they're still figuring things out. They're not 17 years old in high school, you know, they're still little girls and I thought that was really important what the books were and to the show, and I just thought the way they modernized the material was perfect. You know, they talk about Claudius grandmother being in bands and our you know, Claudia is Japanese American and talk about her grandmother being advanced in our when she was young. And you know, at one point Marianne is babysitting for a kid who's transgender and that would have never been in the past 30 years ago, and I just thought they did a beautiful job of modernizing not only the characters, but the storylines while still staying true to what the spirit of the books was. They did Stacey Simms 16:45 a nice job with that too. And they did this many times where they would put something in like that, you know, the child who was transgender, but the storyline wasn't so much about that child. It was the babysitter character's reaction to it and reflection of it. But I thought was going to throw this word up. I really thought it was masterfully done. Yes, she learned more about her. And yes, there was a there was a lesson there. And, you know, I know there's a lot of criticism from people who get uncomfortable with those kinds of issues, but I thought it was so well done. And they did it many, many times over. And my 18 year old who's really conscious of those things right now, I was really impressed. I thought it was really well done. But I was very worried about the truth about Stacey, I was like, Oh, no, because we see this happen so many times in media, and I think they got a couple of things that adults would notice kind of wrong. Boy, did they hit it out of the park, in terms of what younger people would see. Robin Benway 17:41 What did you see in Stacey, what I see in myself. Here's a girl who has many, many things. But one of those things is diabetic. It is not the arc of her life is not the big picture of who she is. It's one thing and there's a scene where she goes to babysit and her blood sugar feels a little bit low and she pulls out a juice box and I realized that I had never seen that in media before. You know, I hadn't seen this girl or any girl or any woman just do that she feels better she keeps going. I mean, I have had literally hundreds of juice boxes on the road working, traveling, you know, so many so many juice boxes go down in bathroom stalls and downstairs bathrooms and you know, just you do what you have to do that's important. And then your blood sugar's come back up and you move on. And I was shocked to how blown away I was by that because it's such a simple act, but it is such a big part of managing your blood sugar and managing diabetes. Stacey Simms 18:35 Yeah. Didn't you expect her not to do that and faint or have to go home from a babysitting job? That's that's what I think we all expected her to do. It was such a nice normal. No, I'm fine. Robin Benway 18:45 Yeah. And I also I did like there is a scene I think at the end where it's sort of like a neighborhood meeting with all the parents of the kids that they watch and though the girls are explaining what it what this means for Stacey and how this works, and I liked that they introduced the doubt of the parents. Because I think that's, it's the pushback that you get like, are you okay? Can you handle this? You know, there's this feeling of, are you just gonna collapse at any moment? Are you safe and I like that they were like, this is how we this is how Stacey manages that this is how she handles it like these are factors in her daily life, but she's also smart enough and mature enough and knowledgeable enough to take care of herself. And I thought that that was a really good message as well to see that some people may not understand it. And here we are explaining to you what this is. Really, if we had had that exact discussion, not as a group of parents, because we aren't lucky enough to have a Baby-Sitters Club in my neighborhood. Stacey Simms 19:37 One of our babysitter's when my children were younger, has type one. And when Lauren would come over we the first couple times we talked about, well, what would happen if you had a low blood sugar and what would happen if this happens, and we talked about all of that, and it was funny, I saw a few adults in the community commenting on the show, and they that would never happen. parents wouldn't talk about it that way. And then they also and I said yes, well, I'm sorry, but we did. Mother's overreaction, right? No mother would overreact like that. I was like, Hello, I mice my son's very first low blood sugar when it was a bad enough low sugar that we had to treat with more than just a juice box. We were about three weeks in, I called my endocrinologist convinced he was gonna send us to the ER, Mm hmm. Right? Okay, we treated it. His blood sugar's coming up. What do we do now? They were like, What do you mean? But I thought we were gonna go in for tests or something. So that kind of confusion really made me laugh, because in the show, she actually did wind up going to the hospital for the day. But in our experience, I mean, I did call I can't say that I didn't. So it was pretty funny to see our real life reflected in that way. I did also like the mom turn around by the end, but it was more as we mentioned earlier, it was more about Stacey and less about the other character. She turned it around. Robin Benway 20:52 Well, going back to the mom, you know, I was diagnosed at 26 I know how much my mom still worries about me to this day like she would never Say that you're stupid ever say it explicitly. And I'm sure the way you worry about your children and your son, you know, there's just always going to be the worry. I think that's also very much based on who Stacey's mom and her parents were in the books as well. They were very anxious about her disease. And I think that was really important to see that, you know, Stacey is managing many different facets of this disease, including what is other people's reaction to it, including, what is her? What are her parents reactions to her? And it and I like that they were able to have that conversation and the confusion between this is who I am versus this is how you're making me feel. I mean, I think those are things that every young person feels even if they're not dealing with a chronic disease or not diabetic, how are you reacting to me versus how I want you to react to me, so I thought they did a really good job with that, but it's just tricky because every person you meet is going to react completely differently to your diagnosis and regardless of how you react to it. And so that's another thing that you're always navigating is, I mean, I'm sure your son has heard this. I'm sure every diabetic has heard this, but we Hear the Oh yeah, my uncle had it. He lost a leg or he now he's blind. You know, everybody write tragic stories and you have to sort of put up a barrier and remind yourself okay, well, that's not me that is your uncle or your dad or whoever. So I think that was for me as I bet seeing Stacey navigate the reactions of other people I thought was really important as well because that is a big part of it. Stacey Simms 22:22 Robin Well, I have you and as you listen, Robin is a National Book Award winner New York Times bestselling author, six novels for young adults. I want to ask you, Robin, why is it so hard to write genuinely for young people? Robin Benway 22:38 I think for me, you know, six books in now at this point is empathy. It's the very first thing that it has to be the biggest part of every book is empathy. I think it's very easy to like see young people today and be like you kids with your tic tac toe and your snip snap, you know, like they don't, you know, people it's very, very easy to look at what is this? What are we in now, generally See, I guess and look at them and think, well, in my day, we had this and not that we weren't on our phones all day. I mean, I'm on my phone all day. I'm a 43 year old woman. So I don't you know, I'm not gonna judge a 15 year old for being on their phone all day. But I think for me, the biggest thing is empathy, because nothing really changes, right? Like we're all still figuring out how to get along with our friends. Who do we want to be? How do we get along with our parents? How do we move through the world? You know, I as you get older, you hope you get wiser you hope you have more experience that makes you grow mentally, you hope that you maybe have a little bit more agency and a little bit more ability to vocalize how you feel and how to stand up for yourself but the struggles are still the same. You know, the way you get along with your teachers the kind of the same way we all get along with a boss or sometimes in a classroom, you have to be with people you don't really want to be with same as in an office space. You know, sometimes you have co workers. So I think the feelings are always the same. The technology doesn't matter. The place doesn't really matter for me. It's just The feelings whether it's love or family or friendships, Stacey Simms 24:03 have you ever considered putting type one into one of your books? Yes, Robin Benway 24:08 I have. I've definitely over the years, I've had conversations with different editors or people in publishing. And they've said, like, hey, you're diabetic, would you ever think about writing a book about diabetes? I think the thing is for me, and this is something that I've really, really, it's why I don't speak publicly about being a diabetic so much is that I don't want it to become the only thing that people think of when they think of me again, I'm not ashamed of it, I'm very open with it. But at the same time, you don't want to just become Oh, that's Robin, she's the diabetic, you know, we we are all more than just one thing. And so I know that if I do a book about being a diabetic or a character who has diabetes, I will have to talk about that book for years, you know, hopefully, you know, one to two years. You know, it will become the defining part of every interview that I do every, you know, work conversation that I have, and Worry sometimes that it will dilute down to just me being the diabetic when I like I said I am so many other things as are pretty much every other diabetic out there we are more than just that disease. And so I do think about it. Also for me fiction is such a wonderful escape. I don't write books because I have to I write because I love writing books, especially for young people. And I think that for me, I love that escapism of it. I love that I am not having to figure out a character's blood sugar situation. I'm already I've got enough doing that for myself. So I don't know I think about it. Maybe as the years go by, maybe in a few years, I'll engage it. There would have to be a really good idea. It wouldn't just be Oh, this character has been diagnosed with diabetes, there would have to be more at play for me so. So I think about it, never say never, but if someone else wants to do it, go for it. Stacey Simms 25:52 You know, it's funny, I don't want to put too fine a point on it. But the first part of your answer there, which is you didn't want to be defined by Diabetes Connections. What Stacey's story is all about to Yes. And I think that's why we like it so much, because that's how almost everybody I know with any kind of diabetes feels. Yeah, right. Agreed. I think anybody with anything Robin Benway 26:11 like that, you know, it's very easy, especially in sort of these wild modern times to focus on maybe what is unknown or scary or, you know, baby, if people don't understand it, that's what they kind of go to first. But that's just not how I view and that's not how I view being diabetic. It's just so it's just a thread that's woven into my life, you know, I, it will always be there. It's something I will always manage. But it's so inherent to me. I don't want someone just to pull that thread out and only look at that rather than the bigger picture. Stacey Simms 26:41 Is there any depiction of type one in media that just makes you mad? Like, can you think of something where you're like, Oh, I hate that one. When people refer to that one, Robin Benway 26:48 I can definitely think of one thing but I can't say Robin Benway 26:52 but I it was fairly recent and yeah, it just I for me, it was sort of like that thing where you're just like, Are you serious? Like, is this really like, this is what you had to do, and this is what you did with it. And it just it was petty on my part. And, you know, mean, and I can't say it, but I got so frustrated and so annoyed. And, you know, I think that was a long simmering feeling that once I got to the depiction of Stacey, I think those two feelings just sort of combined and became an article which was I can't believe I just had to read this versus Oh, I can't believe I just saw this, you know, and that the negative and the positive of that sort of combined together, but yes, Stacey Simms 27:32 definitely. And then Baby-Sitters Club has got to have a season two, you know, is there anything that you remember reading that you really liked them to see? And it doesn't have to be about Stacey, oh gosh, Robin Benway 27:42 I really want to see Don's mom and Mary's dad get together. I know they were together in the first season but I if memory serves, they get married. So I really want to see that wedding. Just because I love Dawn's mom both in the book and on the show and I love the way that they've treated Maryam dad is fun. This is kind of sad, but in the opening scene. Louis, the Collie, you know, appears with Christie. It's Christie's dog Louie Who's that Collie dog. And I was like, Oh, no, Louis because I don't. If memory serves things get a little dicey. Oh, no. Stacey Simms 28:11 Sorry. Spoiler Robin Benway 28:13 alert. I really, I when I saw Louis, I was like, Louis, you know, Stacey Simms 28:19 it is amazingly six with us from what we read in our childhood, right. Robin Benway 28:24 Well, I was talking with a friend of mine about this. You don't realize how much you buried in your brain. You know, I'm watching the show. And I'm like, oh my god. It's Louis. Oh my gosh, it's more been a destiny. I forgot about a bit of destiny. And just Charlotte Johansen, Jamie Newton and his sister Lucy and I'm like, how do I remember all of this? And yet I'm like, did I pay that bill? See now I'm Stacey Simms 28:45 jealous. I want it I like sweet Valley High. backer revel in those memories. Robin Benway 28:52 I'm sure it's developing somewhere. Stacey Simms 28:54 I kind of hope not really cheesy. Can I ask you are you working on anything new right now I know authors always hate that. I know just finished and Oh, that was great. But what's that? Robin Benway 29:07 I always say it takes a brave person to ask a writer somebody working on because oh tread carefully. I am working on something. Yes, it has been a slow road. But the book has evolved many, many times. And I've sort of distilled down to what the book actually is. And I have started writing it. I feel really good about it. I started it a couple times, didn't feel good, went back to the drawing board ripped it all up again and started over. So I do feel good about it. Now it has taken me a long time to figure out what it's about. And I think at the same time, I was coming down off the success so far from the tree and the time that that took, which was wonderful, no complaints, but it was hard for me to both work on a new book and enjoy the success apart from the tree. So I am basically staying with family for a few months. I'm sort of quarantined away here and just everyday I sit down and write 1000 words and it's going well, it feels very, very good to be writing. Again, I haven't written for a while and I have missed it very much. That's fantastic. Well, I look forward to reading that. I'm so glad that I read the article. That was an L. Thank you so much for joining me to talk about this. It was a lot of fun. And I continue to learn more about the Baby-Sitters Club baby. Those books. Thanks so much for joining me. Thank you call me if you have any questions about the baby sitters. Stacey Simms 30:17 You got it Robin. Robin Benway 30:23 You're listening to Diabetes Connections with Stacey Simms. Stacey Simms 30:29 More information on Robin and her books on the episode homepage. I'm really appreciative that she jumped on with me and I definitely got to seek out her books now. It was funny to think about not just the Baby-Sitters Club books, which as I said, I was marginally familiar with as a kid I was a little too old. But the sweet Valley High books man, she made me want to see if my mother still has them. I bet she does. I guarantee you they do not hold up for where they are relic of their time. Right The 80s if you're familiar with sweet Valley High I know you know what I'm talking about. If you are not I will not suggest Due to any more of an explanation, all right, in just a moment, I will be talking to a different kind of book altogether a different kind of author, a dad who wrote a book about his son's diagnosis to help other kids and families. But first Hey welcome to our newest sponsor Diabetes Connections is brought to you by Gvoke HypoPen you know, almost everybody who takes insulin has experienced a low blood sugar and that can be scary. have very low blood sugar is really scary. And that's where Gvoke HypoPen comes in. Gvoke is the first auto injector to treat very low blood sugar Gvoke HypoPen is pre mixed and ready to go with no visible needle and that means it is easy to use. How easy is it, you pull off the red cap, you push the yellow end under bare skin and you hold it for five seconds. That's it. Find out more go to Diabetes connections.com and click on the Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma. Visit Jeeva glucagon comm slash risk If you have a child diagnosed very young with Type One Diabetes, chances are you have a favorite book about diabetes that you read together. We were so lucky to have a couple of these Rufus comes home was one from JDRF. There was another one that I've mentioned before called Jackie's got game that we absolutely adored. There are a lot of wonderful books now for kids with type one. And this week, I am talking to one of the authors of these books. And that is Mike's for as he wrote year one with type one, four and featuring his son, Andrew, it's all about their diagnosis story and also a bit of a teaching tool. Here's my conversation with Mike. Mike, thanks so much for joining me. It's great to talk to you. Mike Suarez 32:43 Hi, Stacey. Thanks for having me on. Stacey Simms 32:45 One of the things I loved doing when my son was diagnosed was finding books that we could read together. And you know, My son was tiny, he wasn't yet too. And so when you have a picture book like this, it's really a nice opportunity to go through it with the kids. So I just want to let you know that They really appreciate what you've done here. I think it's great. Mike Suarez 33:02 Yeah, thanks for saying that. You know, it's kind of the same experience I had, you know, I went to Amazon when he first got diagnosed, and I was looking for books myself, and I found some pretty good ones out there. But I was, you know, really looking for one that really kind of resonated and something that I could share with my own family members and friends to really kind of drive home what it is that he goes through and what it's all about. Stacey Simms 33:23 Well, it's been a couple of years now since Andrew was diagnosed, but why don't you take us through? Even though you're talking about it in the book, why don't you take us through his diagnosis story? Had you all had any experience with type one Had you ever given an injection before and this, Mike Suarez 33:36 so I was unfamiliar entirely with Type One Diabetes. My wife was more aware of it because she had friends growing up and in college that had type one diabetes, and she was around people that have given themselves insulin injections. And for me, I was just totally unaware of this condition. I was totally aware of of the treatment for it. The only thing I knew of diabetes was unfortunately, just That joke that people like to tell around how if you eat too much candy, you get diabetes. And that's basically all I knew of diabetes, which obviously isn't true or isn't fair and especially isn't isn't true of type one diabetes. So I learned a ton, just in that that first few days in the hospital, Stacey Simms 34:15 when did it occur to you that with everything else that's going on, it would be a good idea to write a book. Mike Suarez 34:21 So it was probably a couple months shy of his first year with it. I don't know how the idea popped into my head. I was taking the train in and out of Boston every day for work. And I think just a few lines kind of popped into my head. So I took out my iPhone and just wrote him in my notes app. And I think part of it too, was that my wife and I were talking about bringing a book into school, to read to his classmates, know what it is that he has and goes through and know why it is that he has to leave and see the nurse and why it is he gets, you know, Skittles every once in a while and he's in class. And, you know, going through the books out there, you know, again, there were good ones, but I was just looking for the right one that told the story I wanted to tell his classmates in the way that I wanted to, you know, I've seen that a lot of the other books out there are actually self published. So I knew that the opportunity to do this was out there, you just had to kind of sit down and figure it out. So I utilize my train time in and out of Boston to kind of write and refine my lines and kind of do a little bit of research to figure out what the process was all about Stacey Simms 35:26 was the idea for you to write it for kids to read or for parents to read. I mean, it's the kind of book right, it's in rhyme. But there's some concepts in there that are going to be above a four year olds head. Mike Suarez 35:38 Right. I think what I wanted, most of all, well, I guess there were a few goals. There were a few readers I had in mind. One was the newly diagnosed I wanted for newly diagnosed children to be able to read this and be able to relate to Andrews story and be comforted to know that you're not alone in this that there's other people that have been through Through this and have dealt with it. So that was maybe my primary audience secondary to that would be kind of the friends and family of somebody who is newly diagnosed, including my own friends and family so that they can get an appreciation for what it is and kind of understand what it is that their, you know, diabetic friend or family member goes through. But I guess, you know, I was just thinking about when I read to my own kids, you know, a lot of time it's me reading to them, not them. I guess as they get older, it's more of them reading to themselves, but it's mostly me reading to them. So I can, you know, kind of pronounce the big words, but also the books that we tend to enjoy the most, or that I enjoy reading the most and they seem to be the most receptive to are the ones that rhyme. So I did want to have that kind of make it accessible for kids not make it kind of a chore to read. And that's something that I none of the other books that I saw did was was kind of right in verse so I wanted to have that aspect of it to be accessible. Similarly with the pictures and the drums I wanted them to be kind of, you know, light hearted in a way as much as it's a serious subject matter, but to make it accessible for kids to understand, Stacey Simms 37:08 the book tells the story of you know, your family's journey, and then educating people about the basics of type 1 diabetes. But at the very end, your son has signed it and say, thank you. How did that piece come about? Mike Suarez 37:23 One thing I haven't mentioned yet is I actually did this whole thing in secret, because I did it on my train rides, and nobody was watching me and then at night, I would, you know, once everybody wants it bad, I'd maybe work on it a little bit more. And this includes the whole process, finding the illustrations, kind of framing it for them, getting beta readers to help sharpen up the the rhyme and all that sort of thing. And I wanted this kind of personal touch because I wanted people to read it and realize that this wasn't a fictional character that this is a real boy. There was maybe the same day that I asked Andrew to write up a birthday card for a birthday party he was going to I just took out another piece of paper and just asked them to write on it. Thank you for reading love Andrew. And he asked me What's this for? And I just was like, I don't worry about it. Like I didn't really, I just asked him to do it. Then I put it all together. And then I when it was finally done, I got to read it to my family for the first time, you know, naturally they all loved it. But I think it was I read it first to my wife and son while my daughter was napping, because I didn't, I kind of wanted to, you know, have their full attention. But after she woke up, Andrew took the book, and he showed it to her. And he flipped immediately to that page that had his writing on it, and was like, so proud of having that contribution to the book. That was the first thing he showed his little sister. That's great. Stacey Simms 38:41 There's a page of the book that, you know, has him coming home and has gifts and things with a lot of beams on tags. Are those friends and family names. Mike Suarez 38:51 Yep, they were basically you know, the people that probably were the first to find out and you know, felt, you know, really bad and came to us with, with just some gifts for Andrew, including our next door neighbors and their kids, my sister and her husband and their kids, basically, you know, aunts, uncles, siblings, it just so happened that some of the names rhymed. So if you read them in order, even though the name tags kind of, you know, rhyme together, when I recognized that I was like, you know, I should put them all in there and kind of, you know, thank, you know, some of the people that were, you know, part of this journey and a part of kind of coping with all of this. Stacey Simms 39:31 Yeah, I think it's really well done. The one thing I would say is, there's this little bit about no sneaking snacks. We count carbs to know what goes into my body, but no sneaking snacks. That's beyond being naughty. Yeah, I'm no psychologist, but I always felt like sneaking and and associating any bad behavior with diabetes was something that maybe it was something that we never did. Let's just write that way in my house. We always said you can't get in trouble for anything to do with diabetes, it just flies off the books. So that's the only thing that kind of made my eyebrows go up a little bit. But Gosh, Mike, I'm not really not a critic here. Sure, you know, and I think that's also a good illustration, no pun intended that we all parent in different ways. Yeah. Right. I mean, there's no one size fits all you got to put insulin in, you got to know where your blood sugar is. Yeah. But you know, the way you parent is probably not exactly the way I parent and that's fine. Right. So that I was just curious. And you know, you showed it to your endo. I think that's, again, with my book, I did the same thing, right. You know, you're not a medical professional, but you're showing it to the medical professionals and hoping that they will flag anything that comes up. I'm also curious to know, your daughter makes a couple of appearances in the book, and she's one of those names that we mentioned. Who is she doing and how do you balance the son who gets all this attention for type one and trust me, I have the same situation in my family, right. I have an older daughter who doesn't have type one. How do you handle that with her? How is she doing? Mike Suarez 41:00 Yeah, I mean, she's just as used to it by now as as Andrew, you know, Andrew was four and a half, she was one and a half. So she has no memory, you know, whereas Andrew may may recall, he's he's a, he's got a pretty good memory for a kid his age, he may recall a time before all of this, she would have absolutely no memory. So this is all she's ever kind of grown up to now. So whereas if they were teenagers, then maybe if she was used to just, you know, snacking whenever she wanted, she would continue to do that, despite Andrews diagnosis, but because we're able to kind of be careful around that about that stuff from the outset. If it's not time for Andrew to eat, then we're not going to let her eat in front of him. But if we're you know, giving Andrew you know, something to bring his blood sugar up, if it's maybe a pack of Smarties or something like that, and we only need to give them eight of the 10 then maybe we'll give her the other two, but it is interesting to see how she internalizes as she gets older, how she responds to it, somewhat funny side note around it She sees Andrew take shots all the time and she doesn't get them herself. And sometimes she sees Andrew get shots and she like, asks or she at least at least did this. earlier on, she would say, where's Maggie shot? Where's Maggie shot? And we would explain No, Maggie doesn't need a shot. So I think it was last year when we took her to get a flu shot. She was all about getting her flu shot right. After she got it, she asked for another one. And she was like crying because not because she got the shot, but because she only got one, which was kind of backwards from what you'd expect a kid raised to do. And then another kind of similar story is there was one day where she closed like a dresser draw on her finger and her fingernail started bleeding and you would expect a kid her age to just start wailing. She actually picked up her finger and she was like check my blood sugar. Check my blood sugar. Mike Suarez 42:51 You also wrote a Christmas story. Yep. Why did that come about? Tell me that story? Mike Suarez 42:59 Yeah, sure. So When you're one with type one first came out, yeah, I created a Facebook page to kind of go along with it to give updates about Andrew and to kind of, you know, create some fun memes and things like that to kind of draw attention to it. And I created a kind of a spin on Twas the Night Before Christmas. And every once in a while, like a new couple lines would occur to me even after Christmas, and I would kind of go back and edit the post. And then at some point, I was like, you know, there's probably enough here and there's probably enough opportunity for reuse from my first book that, you know, I wouldn't even be that many more new illustrations. I could just turn this into another book, relatively inexpensively and you know, certainly justify the cost that goes into it. And so I said, Yeah, why not? So I just kind of thought through it and just kind of threw it together and I was really happy with the way it came out. Stacey Simms 43:50 So Mike, we celebrate Hanukkah. I'm not sure how well versed I am in this classic poem, right? But it seems to me that all of the reindeer have Dexcom on I'm not sure I remember that from the original Am I looking at this right? Do they all have Dexcom Mike Suarez 44:07 everybody everybody basically everybody in the story that the Dexcom the reindeer have all all of Dexcom on the Elf on the Shelf has one Santa has one basically everybody in the book and that's what I wanted to create was kind of a world where you know what, it's okay that everybody in the story has it. Stacey Simms 44:25 All right, so what's next? Well, there'll be another issue of this are you gonna move on to the elementary school ages Andrew, you know, with seven now so it's a little different than when he was little? Mike Suarez 44:35 Yeah, it's a good question. I'd certainly like to do you know, to continue Andrews story. I haven't really started anything yet. But I've got a few ideas floating around. I mean, I think one of the things I realized is that there's actually more children's books that are picture books than there are kind of chapter books. That's obviously a whole different ballgame. Then picture books, but my mother in law's actually she's an author. As well, and she's written lots of novels. So if I do decide to go down that road, it'll probably be a lot more work than I did for these other ones. But I certainly would have, you know, a mentor throughout the process. If I did go down that route. Stacey Simms 45:13 It'd be great to have more books with a protagonist who lives with type one. And it's not about type one, if I could put a request in. Yeah, no, it would be really nice. There's a few books and I'll, as you listen, I'll link some of them up in the show notes. But there are a few books Besides, you know, the Baby-Sitters Club that feature Stacey who lives with type one, but it's a little outdated at this point. And the lily books, there are some I hesitate to call them novels. They're like novelizations for middle schoolers and stuff like that. It'd be great. There's only a couple of books I can think of that have a protagonist who lives with type one, but the book is really not about the diabetes. Mike Suarez 45:47 Right. So yeah, Stacey Simms 45:48 that's, I'll put my vote in for that. Mike Suarez 45:50 Yeah, certainly. I think that's a great idea. Stacey Simms 45:53 Well, Mike, I really appreciate you coming on. These books are so fun. I have a lot of great memories of reading the book that we liked. When he was little Jackie's got game was our favorite. I don't even know if they're still printing that one. But that was the one we loved. So I hope that people find this and love it, you know, kind of just like we did that stories. Thanks for coming on and sharing your story. Sure, Mike Suarez 46:13 yeah. Thanks so much for having me. Stacey Simms 46:14 You can find out more about Mike's book, just go to Diabetes connections.com and click on the episode homepage. This is in the show notes. Every episode has show notes on whatever app you're listening to. If you listen to podcast apps, they will display a little bit differently. I think Spotify is finally letting people click through. In other words, if there's a link in the show notes, you can get there through Spotify, but you can always go to the homepage at Diabetes connections.com. if things aren't showing up in your player and find out more there, tell me something good is up next. And boy, there have been so many changes this year with COVID and the JDRF bike rides not an exception, but there's some really good news about one particular writer and I'm going to share that but first diabetes Connections is brought to you by Dexcom. Do you know about Dexcom Clarity. It is their diabetes management software. For a long time, I just thought it was something our endo used, but you can use it on both the desktop or as an app on your phone. And it's an easy way to keep track of the big picture. I check it about once a week. It really helps me in many dial back and sees longer term trends and helps us not to overreact to what happened for just one day or even just one hour. The overlay reports help add context to Benny's glucose levels and patterns. And you can share the reports with your care team. We've done that all this year with the virtual appointments makes it so much easier and productive. managing diabetes is not easy, but I feel like we have one of the very best CGM systems working for us Find out more at Diabetes connections.com and click on the Dexcom logo a couple of years ago I met a local woman here in the Charlotte North Carolina area who lives with type 1 diabetes. Dana Cumberworth first impression that she made me was that this might be one of the fittest people I would ever meet and come to find out she is really Just an athlete, just one of these people who is always always moving and pushing and thriving with type one she bikes she runs she weight trains. Dana was diagnosed as a student. She was a first year student at Wake Forest and their physician's assistant program. And how she was diagnosed is pretty incredible because they were doing the endocrinology part of the class. And when her lab partner tested Dana's blood sugar, it came back at 700. So she was diagnosed in the class while she was diagnosed at the doctor's office the next morning. Fast forward. She has since done I believe, three Iron Man races and then she started getting involved with jdrf. And the bike rides this year was two been a very big deal for Dana because this is her 10 year diaversary. It was just last week actually that she marks 10 years with type one, and she was going to do several if not all of the rides this year. Oh my goodness. But of course plans changed. Everything went virtual. So she and her husband and friends planned ahead To the beach to the east coast here of Charlotte, North Carolina, and do their own version of the ride there. This was supposed to happen this past week. But if you've been following the weather and the hurricane trackers, then you probably know that hurricane eecs was a big problem here in North Carolina. So instead of being able to complete this at the beach, in fact, with the way the podcasting time shifts here, she will have completed 100 miles in Charlotte with some friends and family. So that is absolutely amazing. She set a new goal she keeps surpassing her monetary goals. So her new goal set just a couple of days before that ride is $20,200 because as she said in one of the videos she makes 2020 has already been unbelievable. So why not push that goal? That way? She's not that far off. So 2020 $20,200 and oh, I have forgotten to mention that Dana and her husband announced a couple of weeks ago that she is pregnant, I believe at this point. She's about 1819 weeks along. Hi, I'm going to put some of her videos in the Facebook group because she's been talking about her journey this whole year. And I just think her story is amazing. I will link up some of the videos that she's been doing into the Facebook group at Diabetes Connections, the group, but yeah, hundred miles, type 1 diabetes pregnant. And when you look at her smile, it just looks like it's a piece of cake. She's so inspirational to me, especially to push on with everything that's happened this year and how this ride keeps getting changed and changed and changed. So congratulations, Dana. Continued Good luck and good health to you and your family. And we will cheer you on. If you have something good going on. It doesn't have to be 100 miles of biking while you're pregnant. It can be you know, a diaversary milestone that makes you and your family happy or something that you really want to shout to the hills. Let me know you can email me Stacey at Diabetes Connections comm or post in the Facebook group Just tell me something good At the top of the show, I said I was going to talk a little bit more about the Baby-Sitters Club, the TV show on Netflix. And I think that Robin and I covered it pretty well. But I just wanted to say a couple of more quick things about the actual depiction that I realized we didn't touch on in the interview. If you haven't seen it, or you've had I'm curious what you think the feedback I heard from my friends who have kids with type one who watched it was that I don't know anybody who didn't like it universally, very well received by their kids. They loved seeing a beautiful young woman who was accepting of her condition who told her mom, you know, I'm going to do it this way. Who asked for a fancy purse, she didn't get the fancy purse. But you know, she did this for that Gucci bag. And you know, other things like that, which made it seem very normal. You know, she was low during babysitting, she drank the juice box and went on her way. It didn't seem insurmountable and her friends, the kids, I don't think Robin and I talked about this. The other babysitters in the club, when they found out said Why does somebody with diabetes or you can still do such And so with that, right? Okay, no problem and they really just moved along. Like most kids do, it's the adults that have more of a problem, the things I didn't like about it, they still got stuff wrong, which amazed me because I know that they had to be consulted with people who have type one for this, or at least I hope they did. But what they got wrong was the seizure. Did you see that she had a seizure before she was diagnosed, and they talked about it like she went into insulin shock. Now, I am not a medical expert. Perhaps that could happen. But it makes no sense to me that somebody who is not yet diagnosed with type one, so they are not taking any insulin could go into an insulin shock that would make them have a seizure. Right. It just seemed kind of a stretch. They wanted to do something that would make Stacey embarrassed to push the reason why they moved. It was just this whole I don't know to me that was a big turn off, but it was quick, and I get it it move the plot along. The other thing was this weirdness where that one low blood sugar, which Stacey treated herself causes her mother to take her in for a day of tests. Now, having been a very Worried Mother, I'm still one, let's face it. But when I called my endocrinologist every single day of the first month that Ben he had type one, which I really did do, they never told me bring him in for tests because he had a low blood sugar. Right? I could see a parent calling. I could see a parent being alarmed. I couldn't see an endocrinologist going along with that. And given Stacey was talking about how she was in the hospital for a whole day taking tests. So that was also a little weird. Is it nitpicky? Yeah. But if you're going to tackle something like type one, it's really not that hard to get it right. So I hope they continue to follow Stacey and show her confidence and show we're doing lots of other things that have nothing to do with diabetes. There's definitely gonna be a season two of this show. It's a huge hit. That means there's a lot of room to get it right. So I stay optimistic. What did you think I'm really curious to hear what other people have to say about this as more people discover the series before I let you go, I have something to ask of you and it is about podcast reviews. If you are still listening, I know you were a big fan. I would really appreciate it. If you haven't moment to go to whatever podcast player you're listening on and leave a review. Maybe you're listening on the website or through social media, but especially if you're on Apple podcasts, I'd really appreciate a review there. If you're not, you can head over to Apple podcasts easily find Diabetes Connections and hit subscribe. It's free to subscribe. no cost. It is free on any podcast player and we are everywhere you can get audio Spotify, Pandora, Apple, Google Android, if you're not sure, go to the website, Diabetes connections.com. Scroll down, and you will see 15 links of places to subscribe to the podcast. And you just you can pick one, chances are good, the app is already on your phone and subscribe for free and leave review. I'd really appreciate it. All right, thank you to my editor john Kenneth audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself. Benny 55:01 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged Transcribed by https://otter.ai r iPhone Click here for Android
Back to school is stressful for families touched by diabetes, even without this year's incredible and unique challenges. There’s a new service in development to help make it just a little easier to let someone else take care of your child. Bob Weishar is the founder of a new company called Invincible. We’ll find out more about what he hopes to do and how this teaching and communication tool might help. Check out Stacey's book: The World's Worst Diabetes Mom! In Tell Me Something Good.. graduations.. zip lining and sky diving! This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription: Stacey Simms :00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes, and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom. Stacey Simms 0:23 This week, even in normal times back to school is stressful for families touched by diabetes. But there's something new in development to help make it just a little bit easier to let somebody else take care of your child. Bob Weishar0:34 And when you're trusting other people to do that, there's bumps along the way. And I think that's one of our goals is really to develop that trust with school with grandparents with other places that kids go so that families don't need to worry so much and then kids can just go about their lives and have fun wherever they are. Stacey Simms 0:52 That's Bob Weishar, the founder of a new service called invincible. We'll find out more about what he hopes to do and how this teaching and communication tool might help in Tell me something good graduations, zip lining and skydiving. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I'm so glad to have you along. If you are new, we aim to educate and inspire by sharing stories of connection. My son was diagnosed with type one right before he turned two. He is now 15. And like many of you, I have been back and forth and back and forth and up and down about school. I have a high school sophomore. That's Benny and I have a college sophomore and I'll talk about my daughter in just a moment and her plans. But boy school this year will look like nothing any of us have experienced before. our school system as I am taping just changed the plans and I'm sure they will change again. But here's what happened. We live in the Charlotte Mecklenburg school system Mecklenburg is our town County. This is an enormous school system with 150,000 kids. It's geographically large. It's a metropolitan city Charlotte with lots and lots of suburbs. I grew up just outside of New York City. And if you are from the northeast or probably other parts of the country, but definitely the Northeast, the school districts are tiny, right? They have a couple of thousand kids, maybe 10 15,000 kids, and then each town has their own system. We had the Yorktown school system where I grew up a couple of elementary schools, one or two middle schools and one high school. So you know, making decisions for a much smaller district, very different than making decisions for this gigantic one. I was prepared to have a lot of patience to go along with the decisions made as long as I felt they were safe. And I knew they were gonna have lots and lots of options they had already been talking about this all summer about maybe hybrid maybe in person may be remote with the opportunity to opt out at any time. About a month ago, our school board announced the choices that they would be making. They had three plans a UBC a would be fully in person B would be hybrid c would be fully remote. And you also had a different option where you could opt into a Virtual Academy. And once you did that your child was online for the semester, no matter what the school decided to do, if they came back, if they went, it didn't matter, you're you were on line for the whole shebang. So we had to wait for the governor to decide what to do here in North Carolina. And once that option was made, our school district pulled the trigger on Plan B, but they called it B plus. And it was an option that hadn't been on the table until that night. Basically, it was in person for two weeks, and then virtual for further notice. And what they wanted to do is see the kids they wanted you'd only go in for two days. During those two weeks that they wanted to see the kids they felt like they had lost track of some kids again, it's a very large school district. They wanted to give the kids technology and just wanted to make sure that I guess kids weren't being lost in the shuffle was what they said. But just today, new ruling came no two weeks in school. That was the Not safe. We're all virtual. So virtual until further notice in Charlotte Mecklenburg. And I'm telling you this long story to illustrate what you're probably going through as well, so many different decisions, so many choices to be made. If your child is in a public school, or a charter school or private school, or you homeschool already, there's nothing easy about this. I'm going to come back after the interview, and talk a little bit more about my daughter's college plan, which I think is pretty amazing. And it's I wish our municipality had this, I feel like she's going to be safer there than even in our county. So I'll talk about that towards the end of the show. I feel like it's such a difficult time right now. And we're putting so much pressure on ourselves as parents. So before we jump into the interview, I just want to say two more things. One, if your child has a 504 or IEP, just remember, it's still valid even if you're in a virtual situation. I don't know exactly what that looks like. It's different kid to kids, certainly. But it is valid and I know that in our school district where they the plans are good for two years unless you want to make modifications. They will contact As the semester begins, so I know we'll be having a conversation a couple of weeks into August or September school here starts in the middle of August, which is, again, very different from how I grew up or school starts after Labor Day, but your 504 or your IEP, they are good, regardless of how school is happening. And the second part is deep breath. I was on a call recently with a teacher who lives with type one. So shout out to Rachel, and she told us and I want to pass this along to you, your child can always catch up on learning, but your child needs now is love, support, your confidence, your calmness, as calm as you can be, your child needs you to just be there to be supportive, to be helpful. And to help them get through a situation and you can be honest about it that nobody has faced, the grades will come back, the learning will come back. But if we could take a collective breath as a community and help our kids who already have so much on them, and we have so much on us with diabetes, I think really it'll be so much easier to get through and when we're finally through this month. We can see, okay, you need to learn this, you need to catch up on that. But we will not have sacrificed that love and that support. And if you are a teacher or school staff who decided to listen to this episode to see if you could learn something from it. I do the same thing to you. I say at the end of every episode, be kind to yourself, man. Oh, man, you gotta be under so much pressure right now. Be kind to yourself and let's just get through this as best we can together. Okay, invincible coming up. We're going to be talking about this new program. But first diabetes Connections is brought to you by One Drop, and One Drop is diabetes management for the 21st century. One Drop was designed by people with diabetes for people with diabetes. One Drops glucose meter looks nothing like a medical device. It's sleek, compact, and seamlessly integrates with the award winning One Drop mobile app, sync all your other health apps to One Drop to keep track of the big picture and easily see health trends. And with a One Drop subscription you get unlimited test strips and lancets delivered right to your door. Every One Dropped plan also includes access to your own certified diabetes coach. questions but don't feel like waiting for your next doctor visit. Your personal coach is always there to help could Diabetes connections.com and click on the One Drop logo to learn more. How is the communication around your child's school experience you text or email or get a printout? Maybe you already use a diabetes app to keep track of food and dosing and care and other issues. Well, my guest this week wants to help standardize that make it a lot easier. Bob Weishar was diagnosed with type one in college. He shares that story and a lot more and joined me to talk about invincible Bob. Thanks for coming on. I'm really interested to learn more but but what a time to be talking about schools. Thanks for spending some time with us. Bob Weishar7:43 Yeah, really happy to be here. All right, Bob Weishar7:44 before we get into any questions about this school year, and how different it is going to be because I think most parents already feel that way. And let's just start what is invincible. Describe what this is all about. Bob Weishar7:55 Yeah, of course. So we started invincible really is our mission is to inspire kids with health issues. And we purposely picked a name that doesn't have health in the title. Because really, we think that there's a lot of opportunities that kids have with health issues to just live a normal life. But even more do do amazing things. And so, broadly speaking, that's our mission, obviously, there's a long way to go to reach that. And where we've actually started is, throughout the journeys that kids have is helping them in every stage. And so as kids grow up, we want to be able to help parents and their kids really grow. So we've actually started with schools and families as a place where kids spend most of their time when they're not at home. And we've been working for the past 12 months or so to really work with schools work with families to develop a product that connects them throughout the day and ultimately gets better care for kids and the support that they need, especially for elementary aged kids Stacey Simms 8:50 You were diagnosed as a college student though, and you don't have children with type one. How did you come up with the idea to do something like this? Bob Weishar 8:57 Yeah, it's well, a long time in the making. I think I was So I was diagnosed as a freshman in college in, I mean, I got to see firsthand what it was like to be kind of away from home on my own trying to figure this out. Luckily, I didn't go to the emergency room, I had kind of the symptoms I'm sure a lot of people have around just being alive and drink a lot of water, losing weight for college freshman was a weird thing. So that kind of took me off. But really, once I was diagnosed, went through all the struggles that I think families and lots of people go through when they're first diagnosed around just learning the disease and learning what to do. And I mean, I was just thinking about this the other day around, trying to go to a support group even and just seeing people that no one looked like me right and, and that really was kind of the place that I was meant to go learn and figure this out. And so that kind of stuck with me and that that planted the seed and it sounds weird now, but I always wanted to do something more with it than just manage my own condition and really after college got the opportunity to work on a couple different projects with some insulin manufacturers and develop some innovative programs around kind of chronic care. Management. So through there got the first itch to really apply my personal experience, but then also match it with professional. And then from there went to BigFoot biomedical. And so really, that's where between those couple of experiences got a lot of first hand experience around what to do what people need. But I always wanted to do something more, so Invincibles a long time in the making, and I give that backstory because it's there wasn't any one aha moment by any means. It's kind of 15 years in the making. I think I have lots of school presentations and things that the ideas kind of came as we went and really started it just as a way to figure out a way that we think that families and kids especially the support that they need, and go from there. Stacey Simms 10:41 What did you do at BigFoot, if I may ask? Bob Weishar10:42 Sure. Yeah, so I was a product manager and I was focused on the closed loop system. So started pretty early, early on there with the engineering team and built the product that went into Bob Weishar10:52 the clinical trial there. Again, as you said, there was no aha moment. But I know a lot of people who have worked or were working at the time of Bigfoot, and there are there are families They are right. There are adults with type one with children, but they were adults who have children with type 100%. No. Bob Weishar11:07 And Bigfoot was such a great place to really just be immersed in that in that world. And that was really the first time that I had been around more than one or two people at a time that that had been so directly affected by diabetes. And so being able to go to work every day with people that knew what they were doing. And I mean, my first week up big fight, I was actually trying the Dexcom for the first time, and I figured I might as well use technology, there's going to be a diabetes tech company, and just having all the tips and tricks and the people that knew what they're doing, but really just had being surrounded by people that were just so passionate for it was just such a great environment and such a great place to be. And so yeah, I think that that gave me such a great foundation to build from and grow with people in this community. Stacey Simms 11:48 So let's talk about invincible and what the vision is here. I have a child who's in high school who frankly, is at the stage where it's much more hands off, you know, but we went he was diagnosed at two we went into kindex gotten where you went to take care of preschool and then kindergarten. And as you know, and as most people listening know, there is so much that has to go on when you're trying to teach a school or maybe deal with a school that has no nurse or a part time nurse or a nurse who doesn't really know what it's like about type one, or who's overwhelmed by having 10 kids with type one, along with all the other kids that she has to take care of her he has to take care of. So I guess the first question I would ask you is, what are the problems with the difficulties that you're trying to help with? Because I know a bunch of them? Bob Weishar12:30 Yes, absolutely. So that was actually about the first six months of starting the company and figuring exactly that out. So as you know, a lot of parents have the horror stories, right of what happened at school and could be all age ranges, right. And lots of things happen. And diabetes is you know, it's just really tricky. So we started with schools. It's really just kind of a research project to figure out where can we help because we heard from a lot of families that school in particular, created a lot of frustration and I mean mix it in with kids are getting older and figuring out their own lives. We've actually spent the first six months really just going into schools and interviewing school nurses to find really their side of the story, because one of the key kind of hypotheses with it was that there aren't really bad nurses. There's just a lot of overworked nurses that are probably under resourced. So that's kind of what we went in with. And we didn't go in with too many assumptions, because we just wanted to learn and we kind of had the family side of the story from lots of interviews, and really just wanted to see what what is the school nurse side look like? And what does that look like, at the school setting? And so from a solution standpoint, as we start to think about this, it's really, when kids go to school, there's, there's so much going on, right? And schools are built to teach kids at the end of the day. And so what's ended up happening and what we saw in most schools is really, there's just very, very few health resources to deal with any sort of chronic health issue, especially type one diabetes. What we found is in the schools where where it works, usually it's a really just dedicated nurse who goes above and beyond. It's a family who's just leaning in and doing everything. They can A kid with just a great head on their shoulders. And I'll be honest, we saw that more often than not, we didn't see a lot of horror stories, but there's just it creates a lot of frustration for families, of course, that what they do at home can't be the same as what they do at school and, and that's what we're really trying to help is just bridge that gap between when kids are at home and families develop their routines to when they go to school. And one of the things we saw really early on was just all the paper notes and kind of process that that gets handled at school, that could just be so much easier. What we came up with is really starting to develop a way where families can start to get some of the information that's happening at school. So when kids are in the nurses office, and the nurses already giving them insulin and writing all this stuff down. We actually saw a lot of families exchanging like paper notebooks to have their kids carry around that just inherently bugged me. The last thing we want is his kids to be carrying a notebook around and feeling any more different than they might feel already. And so that was kind of the first place where we just said okay, this this is a very solvable piece of this And so that's where we've been working since is really starting to develop just those relationships with schools and families, and then a product that helps bridge that gap. Stacey Simms 15:06 So this is more than an app that takes place of my paper notebook, which by the way, I'm laughing as you said that because my son went back to daycare is a terrible parent. I am, he was not yet to. And he went back to daycare a week after we got home from the hospital, because my assumption was, they taught me the dummy who knew nothing about diabetes, I can teach these wonderful educators and caregivers who probably know a lot more than I do about children anyway. And they did and they were wonderful. And boy, we'll be lucky. But we had paper going back and forth. Of course, this was 2006 2007. But we had that piece of paper that the daycare center does, you know, oh, your child was nice. Today, your child went to the potty at this time. And your child's blood sugar was also this, like we just wrote it on the same piece of paper. Yep. Yeah. But I assume it's more than an app because there's lots and lots of blood sugar logging apps that tell me about the education component that you've mentioned a couple times. Bob Weishar15:57 So really, I mean, I think this probably goes back to that first experience that I had to go into a support group and what it takes. So we've developed first is really just the basics content. Our target audience for that is anyone who might be supporting a kid with type one. So think teachers think school staff, think grandparents or friends and family that need to know at least the basic information to keep kids safe. Our spin on it isn't typical diabetes, you might see we want to make it fun and really friendly so that maybe a kid could use it but especially a grandparent doesn't have to be terrified of it and a teacher can do it on our break so that she has the information that she needs and isn't scared. That's what it's about for and really what we've developed as a foundation to develop a lot of different content beyond that, we're really starting with the basics so that kids have just the basic level of support that they need at that school but then also what those other places Stacey Simms 16:50 Can you share a little bit about what it looks like right as a school pay for it. Does the school have to meet with you what why don't you know what what is really I know a lot of this might be proprietary but No, no, Bob Weishar17:00 it's all good. Well, we're a startup. So we're very much figuring this out as we go. So I'll confess that but but but the education standpoint, we want it to be free. And we think that's the bare minimum thing that we can offer that just makes learning accessible to anyone in the world. And one of the really interesting aspects of this is that once we've developed kind of the framework to do these things, is that it's very easily you might imagine scalable to other languages even. And so Spanish is a great example that's pretty underserved, especially from a diabetes standpoint, where we can start to develop these fun training modules. And if you know Duolingo, that's kind of our our guiding design principle of just making it fun and friendly and kind of simple quizzes and games that anyone could do. So from a business model standpoint, the learning pieces is what we see is free and we want anyone to do that because at the end of the day, we want kids to have support wherever they go. And it's not just the kind of the technical skills of how do you deliver insulin? How do you check blood sugar, but I mean, a personal bias for me is how do you support kids emotionally too? And, and how do you talk about it? And how do you say the right things? And especially in a classroom setting? How do you get them to just feel normal and just a normal kid in class and, and have a teacher talk about that stuff? Stacey Simms 18:14 I'm curious to how you're developing the education component, because there are so many differences among diabetes families, we had four kids in our elementary school and my style of parenting was very, very different from other there, you know, there's no right or wrong, it would never works for that family. But I would educate a nurse and educated educator, sounds funny, I would educate a nurse and educate school staff in a different way about type 1 diabetes. And to be clear, you know, it's not that I mean, there are some things that you have to do that are just type 1 diabetes. I'm not talking to the definition, you know what I'm talking about. I mean, we're about we did not use share and follow, for example, with our elementary school educators, whereas the other families did, and I'm curious how you handle things like that, when you're educating Who's getting the education process? I mean, I know you don't diabetes, but we all do this a little different Bob Weishar19:05 100%. So our eventual goal is really to partner with with institutions that do this for a living. And what we've been doing in the meantime is really just relying on best practices material from jdrf from ABA. And so piggybacking on like, what might be a Word document or website, but just converting it into something that's engaging and so kind of the way we see it is chunking all this stuff up so that it's just bite sized pieces that people can handle. As for a content standpoint, absolutely. You're absolutely right. And so what we've developed so far is really the the foundational pieces that anyone might need. So think just checking blood sugar, what is blood sugar, handling a low blood sugar and high blood sugar. But as we go beyond that, that's where it starts to get personalized to each family and child. And what we envision is really being able to personalize that to the the school setting or to the child so that if they're not using a CGM, for example, we're not having a teacher go through a CGM module that that she doesn't need to know yet. Got it, Stacey Simms 20:01 as I put my two cents into your app, which you didn't ask for, you know, things like every family does this differently, or this, this is a choice, right? This particular point of care may be something this family does, or this family does not do that sort of thing. Bob Weishar20:15 Totally, totally. It's been interesting, too, because a lot of the a lot of the school nurses that get it understand that so well, right is that each family needs a little bit different type of handling and treatment, and in the way that they approach it, it's just different. And so I think when we're in person, we naturally do this, as we we have kind of some of this digital education, that's something that needs to be front and center because it's it's too easy to just create a one size fits all Stacey Simms 20:40 approach. I would imagine that the nurses and the school staff and you folks are better at differentiated that than we as parents, right? We tend to think the way we do it is I don't want to say the right way. But we kind of live in this bubble where it's like, well, everybody must be doing it this way. So I'm glad to hear that but as we're talking through it makes me think I bet the nurses For a lot better at knowing that, that I'm even giving them credit for this. Well, it's it's two sided, right? I mean, every family knows their, their own kid and what works. And so I mean, like anything, it's a partnership. And that's what's been really fun with this is really trying to just see both sides and really just putting the kid front and center throughout this so that at the end of the day, that's what everyone cares about. Absolutely. is something that that occurs to me as well. We had an issue in our school district a couple of years ago, you know, when Dexcom share and nightscout technology sharing different ways to look at, you know, continuous glucose monitoring numbers on devices came in. At first, it was kind of up to the nurse and the parent or the staff of the parent to say, Sure, I'll follow you on my phone or sure I'll follow you on my desktop. And we had a school nurse who would follow the children on her personal device and I guess turned it off at night. I really don't know exactly how they did it, but a year or two into this when it became much more standard of care and you know the Dexcom share and follow SR To be even though I know it's not it seemed to be ubiquitous in our school district, the district actually had to make some decisions about technology. And they locked it down, you know, no more personal devices, no more following after school hours. And I think things that were very, very proper, but frankly threw a monkey wrench into existing systems that these parents have been using, you know, have you run into anything like that? Bob Weishar22:22 Yeah, it's actually a big continuing pain point for for everybody, I think because I mean, as you know, I mean CGM is once you once you're used to having CGM, once you're relying on it. It's just it's crazy to think that you're just going to ignore it or turn it off. So what the school districts that we met with we came out with probably 100 or so districts throughout California at this point, and it's all across the board really, and really, from the kind of point of Oh, yeah, we follow every number and of course, we're going to have this on iPads in our office and our in our teachers and our in our classrooms, all the way down to know exactly like you said we're not going to allow this In school, so what we're finding is, I mean, like anything that the answer probably falls somewhere in between where it's, it's not quite, we're going to follow every single time. And we're not going to check every five minutes for a nurse that is already numbered 2000 kids to one, yeah. But it's also not, we have a low glucose alarm, we're going to ignore that. And so that's where we're finding a lot of the happy mediums. And a lot of the districts we saw were at a minimum there, they're responding to alarms, because it's just a no brainer, that we're going to do that. But there's also not a dedicated person watching numbers all day either. And a lot of those cases, it's, it's a lot, a lot of the families that are at home, maybe and they can text the nurse or text the teacher if something's needed, but it also gives a little bit of time back to the kid to to just be in class and be present. So that that tends to be the middle ground. And again, I I don't have answers for this. It's just what I've been seeing. But it certainly is top of mind for a lot of these nurses, a lot of these school districts as they take on some of that liability in their in their minds. Stacey Simms 23:57 Yeah, it's a difficult issue because if you have a tiny little School, our little school district with one kid. No problem. We have 150,000 children in our school district. Yeah, it's a little different. And no full time nurses. I go vote. It's an interesting time. What have you found has been the really great thing about invincible What do people who start using this are testing it? Like what, uh, schools? Bob Weishar24:22 Well, what's been what's been fascinating and so we've been piloting this since last year. And the first test, which was really what school nurses use it, we kind of knew that families would get value from really having this information available to them, and not just to create information, but really just to improve communication so that they're not texting and calling all the time. But what we saw is really, nurses take this as a tool of their own, so that they can better support the kids too. And so that's been really fascinating, exciting to see because just being able to go in person and see some of the glucose shacks and the lunch tracks at school happen and being able to give that information to families, real time Just so that they really just have that peace of mind that their kid is being taken care of and that ultimately, they're safe and happy. Still just scratching the surface on that. And we've got lots of lots of progress to still make but but that's been really exciting to see is really the schools tried to embrace this and, and of course, families and kids get a lot of value from what do you need from the community? Do you need anything? Do you need testers? Do you need feedback? Should we hold our horses for a little bit? Well, you know, it's interesting, because it's it's obviously a tricky time, right. And as we focus a lot of our efforts on schools, it's it's not the best time to have a product that helps families communicate with school in a remote world. So we're very much figuring that out. I think what I would say is what we need at this point is we're still early stages and the product we've built for school. I think for those families that are going back to school in person, we are absolutely looking for beta testers at this point to try it out and and really try to help us continue growing this product and ultimately helping kids with with diabetes and And eventually other health issues too. For those families that aren't we, we'd love to hear from them too, because we like I said, we're early stages. So our ultimate goal is to support kids throughout their health journey. And so we don't want to just build one product that that helps communication between school at home, but really developing something that can help kids start to develop their independence and confidence and managing and eventually inspiring them to do whatever they want to do for any families out there that are interested in that we'd love to hear from them and and have them contribute some their ideas and thoughts. And as we continue to iterate I think we'll come up with lots of cool ideas and things to test out what is unusual. And I mean, what a year this is already. It's you know, as we're recording, I think a lot of school districts and parents are still figuring out what they're going to be doing for the fall. So separate from invincible. You know, it's got to be so frustrating. I'm curious, have you have you talked to any of your local school districts this year? Any advice for families trying to navigate this? Well, I mean, I think the key message is, we're all figuring this out together, right? And there's no good answer. And I wish there was and it really is varied by a lot of the different states and schools that we're working with. That's what they're doing. And for instance, a lot of the California schools we're starting to see are going at least starting remote so that's a that's a challenge but but understandable on a lot of levels too. So I mean, I think above all like like we all know is just work with your school the figure it out, and it's not gonna be perfect. Not none of this is perfect in the COVID world. But um, but yeah, I mean, that I think that's the key message that we're hearing is, a lot of school nurses are just getting this information the same time as families are. And so just so trying to make sense of this all and help help us all together in this process. Stacey Simms 27:41 So earlier, we talked a little bit about that horror story, terminology. And, you know, I shouldn't I wanted to go back to that that term, you know, the horror story, and I have to admit that as I said, My son was diagnosed really little, and we kind of had diabetes down are doing okay, we're growing. When and kindergarten, the idea of kindergarten stressed me out and instilled such fear in me. I still don't know why it was so unreasonable because he had such good care in daycare and preschool. And we had a wonderful elementary school, but we were the only family with type one at the time. And I was so scared, and it was so much better than I had feared. And so when we talk about the fear that parents have of sending their children to school, I always like to use my story. I mean, you know, I think we kind of have to go through this ourselves, right? I can't tell another family don't do it. I don't don't feel what I felt. That doesn't make any sense, right. But learn from my experience, and the hundreds of families that I've been so fortunate to meet and talk to over this last 13 years of Benny having type one diabetes. I don't hear a lot of horror stories. I hear a lot of fear. And I hear a lot of when my child went low at recess, or you know, they didn't spot the high and in my head, I'm thinking I'm not perfect at home with my kids diabetes, like I've missed lows. I've missed highs. We've missed doses we've knocked off sites, stuff happens at school just like it happens at home. And I'm wondering if I'm an outlier? I don't think so, in thinking this way, or most of the families you talk to, are just trying to make the experience smoother and better. And not fighting that horror story to tell. Bob Weishar29:19 Yeah, I think you're absolutely right. I think like any news, the sensational news tends to bubble the top right. And I think probably maybe some percent of families are doing exactly that is sending a kid to the school for the first time is really hard. And again, I'm not a parent, but I can absolutely empathize with it. But really, really there. You're exactly right. In terms of families, we're just trying to figure this out. And it's scary. and managing my own diabetes is scary. I did a diabetes camp a couple years ago. And I think managing for someone else's just added stress, and it's probably 10 times as hard as managing my own and in checking other people's blood sugars and so on. But you're absolutely right in terms of really just the challenge of managing diabetes at school and other places. It's a work in process and it's never perfect. And when you're trusting other people to do that, there's bumps along the way. And I think that's one of our goals is really to develop that trust with school with grandparents with other places that kids go so that families don't need to worry so much and they can just go about their lives and have fun wherever they are. Stacey Simms 30:21 I'm such a fan of something like this because you know, and may sound if you're if you're newer to the show, or you haven't read a lot of my stuff, I may sound very laissez faire and hands off. Right, he'll be fine. I'm not I you know, I worry a lot. I just try not to give my worry to my kid. But something like this, which would help the school understand that the parents not a crazy helicopter parent, right. And also allow some of us who want to kind of over over protect our kids like I've had those instincts where I want to wrap my head in bubble wrap. I feel like this would be so helpful for me, because it would help me hand off more. So I think it sounds It just helps on both ends by educating some school districts. I mean, I'm so lucky I say this all the time, we've been so lucky with our care. I never had to do the big fight. We've had to do some things. I know some parents out there really struggle and having a thing where you could say, No, look, I'm not the only one. And here's a resource can be so helpful. I'll get off I will get off my soapbox. I'm starting talking about me way too much. But I have a question for you about emergency administration of like of glucagon and things like that, you know, there's different ways to do that. Now there's different products. But I'm curious that that is something that is really a non negotiable in my mind that schools need to know how to administer emergency from the time is that something that you help with? Bob Weishar31:39 Yes, absolutely. I think the what we have is really some some basic modules with that we started tentative out but that thing, but absolutely and I think as like back semi unhealed insulin becomes more prevalent that training only becomes easier. But it is it is a challenge, right because as you probably anticipate sticking the needle in an emergency situation is a big challenge. And so I think part of it is reducing some of the fear factor around administering an emergency treatment. But the other part is just repetition and practice. Stacey Simms 32:09 I think, too, as a parent, I would love some backup on that, you know, I trained everybody on the red box way back then there, but you know, even showing somebody had to use the vaccine, as you mentioned, or the G vote, the auto injector, you know, these are so much simpler, but I would really appreciate the opportunity to have something to say like, here's your look at this. You can look at me too, I'll show you how to do it, but I'm not I've never had to do it knock wood. So that's great that you offer that as well. Hundred percent. You said early on that, you know, we want to keep the kid front and center. Are you talking to the kids about what they want? Are you telling the kids about what they need at school? Bob Weishar32:46 Absolutely. So so that those are those are most fun interviews. And so we've done we've done a lot of just in person visits and we get to go to the school and the kids and one of my favorites is got to be there. When someone's first day Back to school with diabetes. And so got to just hear what that was like and his perspective. And so decided to develop some of those relationships around just seeing not only when kids are first diagnosed and trying to figure this out, but throughout and again, we're early I don't claim to have any or, or most of even these answers. But I think that's what gets me really excited is that kids are ultimately our customers. And they might not be paying for any of this or but but ultimately, they're living with this. And so if we can do right by them, I think we've ultimately we've done our job. And what an elementary school child needs is much different than middle school and high school and even college. And so we've spoken to a lot of families, a lot of school nurses, but ultimately putting kids friends center and being part of this whole development experience and engaging them is really our ultimate goal. Stacey Simms 33:46 Can you share a little bit about what the kids say? I mean, I'll give an example. I would sit down with my son and I still try to do this, but he just rolled his eyes at me now. But I would sit down at the beginning of every school year and say, what's the goal for this year? What do you want to do? in first grade, he wanted to eat in the school cafeteria. That was a buys lunch. That was something that we didn't do in kindergarten, because we wanted to keep it super simple. You know, in second grade, he wanted to not have to leave gym class. He wanted to, you know, we love to eat in the classroom, he rarely went to the nurse. But the gym was right near the nurse and long story short that he wanted to just stay there. So every year he had a goal. By fifth grade. It was nobody talked to me about my blood sugar. And I wasn't ready to let that go. So we devised like a thumbs up to his teacher at lunch, which meant Yes, I've dosed you know that. Yeah. So like we we talked about it a lot and was like, What do you want? I'm curious if kids have shared those kinds of things with you. Bob Weishar34:38 No, I probably haven't asked the right question. I'd love that. I mean, we've asked them about just kind of generally like what they what they go through at school and I think some of those exact same things that you've mentioned around they don't want I think the the common ones that we've heard are as simple as like, Yeah, I don't want to leave lunch. I don't want to leave class early hearing a kid say they don't Want to leave class really is a good thing. But yeah, that's pretty exciting. But just simple things have just, they just want to be with their friends, they want to be in class, they don't want to leave recess. Really, what I saw a lot is really the kind of 15 minute rule that a lot of schools will have around after they check if they're low. And that's obviously a big pain point for a second grader who wants to go go back to recess. So those are the main things that I've heard at least and but I love the the aspect of just asking a goal oriented question on each year because, because that's really powerful. And I've actually heard a few families mentioned the kind of the thumbs up, thumbs down, especially when kids are really just tired of talking about it as important. Stacey Simms 35:39 Yes. And you're so when you find a teacher or a staff member who will work with you like that. That's the greatest feeling in the world. Because they get it they understand that your kid just wants to go through class. They're tired of beeping, they're tired of talking to them. You know, and then when you get to middle school, in high school, you have you know, different parameters all together. This year is so unique. I mean What a time to try to help schools and try to help families. But I love what you're doing here and I'm so glad you shared this with us. You know, we already asked about how we can help us the community or what you need from us. Do you have a sign up? Do you have ways that people can learn more? Bob Weishar36:13 Yeah, absolutely. So if you go to our website it's invincible app.com you have to spell invincible and and also you could also email me Babbitt invincible app calm and, and either one will work and will love to love to hear from you and reach out to any families there. Stacey Simms 36:31 Thank you so much for joining me and spending some time and kind of hearing me also get up and down on my soapbox. I appreciate you Bob Weishar36:37 know, this is great. We'll have to do we'll have to do some some interviews at some point. We'll love to hear hear your perspective as we continue this because I mean, I think that's that's one of the aspects of this that that gets me really excited is I think one of the things that that I learned early on is everyone kind of figured this figured this out for the first time each time and so if we can start to use some of the experiences of families that have been have kids that have been through this and kind of extend those and start to develop some best practices. I think that would just be such a wealth of knowledge that we can pass on the telephone and just help people get through this. Announcer 37:15 You're listening to Diabetes Connections with Stacey Simms. Stacey Simms 37:21 More information about invincible and how you can send feedback and all that good stuff just go to Diabetes- Connections com and click on the episode homepage. Of course there's a transcript for this episode as well. And tell me something good is back this week. We have so many great stories including one about skydiving I'll be honest with you something my daughter really wants to do and I would never do food get to that moment but first diabetes Connections is brought to you by Dexcom. And here's what I have to say about control IQ, the Dexcom G6 Tandem pump software program, we are doing a lot less work for better results. I'm gonna say that again, because that happened in diabetes, less work better results. A couple of years ago, we got the CGM on the screen and Benny like that, but it was more just a cool feature. He really looks at his phone a lot more to check his Dexcom. But the control IQ is taking this to a whole different level. His time and range has increased significantly his A1C has come down significantly since we started the system in January. I love it. I can't say enough good things about it. Of course individual results may vary. To learn more, go to Diabetes connections.com and click on the Dexcom logo. Tell me something good this week comes from comments in our Facebook group. It is Diabetes Connections, the group and I have so many things to share with you so we'll just scratch the surface with a couple. I'm so glad to bring this feature back. It's always my favorite part of the show every week. Lots of graduation stories. Janice says, I'm officially done! Macey didn't attend a live ceremony last week. We didn't feel it was safe. But we met teachers that are old schools for a socially distance photo op started with her first preschool teacher. Her school life hasn't been normal once her graduation wasn't either. We turned lemons into lemonade, and Janice is well known to a lot of you even if you don't know her name or her face maybe because Macey is Macey's believers of walk team that's been around for a long time and it's been a lot of good both with Jdrf and with the friends for life conference. So congratulation Macey and well done. Janice Niva writes in: my 11 year old T1D and her family went ziplining in the North Carolina mountains. We carried all of our supplies and fanny packs. I almost didn't allow us to do it because we were hours away from any medical help. If something happened, everything went great. I'm glad we did it and didn't let diabetes get in our way. And congratulations and boys. They're a great picture. I'll share this offer kiddo just ready to go with a mountain behind them. Oh my goodness. I like the idea of zip lining but I've never done it over. This is I'm familiar with this one. This is a really long one. And I would be nervous not because of diabetes just because I'm a big chicken, which means I would never do this next one. Oh my goodness. Laura says My brave girl went skydiving So Laura wrote in we all know T1Ds are brave My brave girl went skydiving with her dad last weekend. She has wanted to do this since she was eight years old. She says it lived up to expectations and exceeded them. Mom says I was nervous but her blood sugar's Of course she was really high when she boarded the plane because of adrenaline. But then she plugged her pump control IQ and quickly got her back on track. She gave it two thumbs up and plans to do it again someday. Oh my goodness. I love seeing stories like this. I thank you so much for sending them in. We got a whole bunch of you know my A1C is great. And you know I'm always happy about that, but I you know me I hesitate to congratulate somebody on their number. I really want to hear the story behind it and what else is going Well in your life, especially now this is a tough time to have any control over anything. And to be doing well like that is great. So share your numbers but share a little bit more about what's going on because I think that's actually more helpful than the number and I will leave you with this one. Noni wrote in not diabetes related, but our one and a half year old is finally eating tiny bites of solid food without gagging and choking. He's a fan of Turkey and green beans. Way to go, buddy. That's awesome. I'm telling you. I will take your Tell me something goods that are teeny tiny accomplishments, the super tiny stuff and everything in between. We have so much to celebrate in this community. I want to help you get the word out about your good stuff. You could email me Stacey at Diabetes connections.com or go to the Facebook group Diabetes Connections, the group join in and jump into the conversation. Tell me something good. Before I let you go, I said I was going to talk about my daughter's college. Now as we're taping this, it is the very beginning of August We are less than two weeks away of bringing her back. She goes to Tulane, and this was her sophomore year. I am very nervous because of everything that's going on. She's going to be far from home. But I think going back is the best thing for her. And boy, this school has been on top of it. And I'm not bringing this up to brag on Oh, this private institution that was able to do this. I'm bringing it because, man, if we could just have this kind of plan for the nation for our states, we would be open so much sooner. I don't get political on the show. I'm not about to get political now. But give me a break. This is all about test, trace and isolate. It's not rocket science to lane is testing every student as they return, and you can't get back in your room until you have a negative covid tests that they will administer. Same thing for off campus students who can't get back into class until you test negative they will be doing monthly tests of all students, faculty and staff. And they're doing randomized daily tests. So if you're selected for daily tests, you will get a text and then you must make an appointment for your test with us. certain period of time I think it's 48 hours, they've put aside a big dorm building. And I think a hotel is in there too, in terms of isolating students who need to be quarantined, and they have another system set up, if someone you've been in contact with has tested positive, they've put up a bunch of outdoor buildings. I don't know how to describe this other than if you've ever been to a fancy golf tournament, one of those tents that is really like more of a building and has air conditioning inside, they've set up a bunch of those for dining and extra classroom space. Some of the classes will be virtual, but she will have in person classes and she will be able to do so many of the things that she wanted to do last year. I'm keeping my fingers crossed hoping that what is basically an experiment right works out but I gotta say, this seems to be a really good and well thought out plan. So I'll let you know we also as a family have a plan for if everything goes well, great. If it doesn't, what we're going to do if she gets sick, obviously we have one plan, but if the people around her if the campus goes in one direction, you really hate that we have to seek these things out. But we do in terms of how we're going to get there, how we're going to get her home, when we're going to leave her all that stuff. Man. I know so many families are making similar decisions. And it's just so frustrating because we know it didn't have to be this way. And that's all I'll say about that. All right, lots more to come in the weeks ahead. You can always find me on social media, Stacey Simms or Diabetes Connections on Facebook and Twitter, on Instagram. It's just Stacey Simms, just the one account there because I got started late on Instagram and I don't see any reason to have two accounts there. As always, thank you to my editor john McKenna's from audio editing solutions. Thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself. Benny 44:49 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged
It's our annual game show episode! This year, because of all the Zoom calls, we decided to play the HollyWood Squares! Of course, since this is a show for the Friends for Life Conference (FFL, pronounced Fiffle) we're calling it The FFL-Wood Squares! Huge thanks to our panelists: Kerri Sparling, Edward Hawthorne, Dr. Henry Rodriguez, Chris "The Grumpy Pumper," Moira McCarthy, Renza Scibilia, Oren Liebermann & Cherise Shockley. Learn more about them in the FFL Conference Program Check out Stacey's new book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Transcription In The Works
Before hydroxychloroquine was part of the national Covid conversation, it was being looked at in studies to see if it might help in the prevention of type 1 diabetes. Recently JDRF held a Facebook Live event with Dr. Jane Buckner, where she talked about TrialNet’s Hydroxychloroquine (HCQ) Prevention Study. JDRF was kind enough to share the audio with us for this week's show. Watch the JDRF Facebook event with Dr. Jane Buckner Check out Stacey's new book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription: Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes, and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your healthcare provider. This week, we're talking about hydroxychloroquine. Yeah, that's right before it was part of the National COVID conversation is being looked at in studies to see if it might help in the prevention of type 1 diabetes. Welcome to another week of the show. I am so glad to have you along I am your host Stacey Simms. We aim to educate and inspire about type 1 diabetes by sharing stories of connection my son was diagnosed with type one more than 30 years ago, he was a toddler at the time and now he is 15. My husband lives with type two. I don't have diabetes. I have a background in broadcasting local radio and television, we decided to get the podcast, which is now more than five years old. So if this is your first episode, thrilled to have you here, please go check out the website Diabetes connections.com. We have a very robust search we have more than 300 episodes now. So there are ways to get to it by date by keyword by subject matter. If you'd like to go back and start it episode one. You can use any podcast app as well. Wherever you listen to audio at this point, you can get this podcast. This week's show is unusual in that it's not an interview, as I usually do. Recently, JDRF held a Facebook Live event with Dr. Jane Buckner, where she talked about TrialNet’s hydroxychloroquine prevention study JDRF was kind enough to share the audio with me. I found this so interesting like most people, I heard About the drug this year because of the whole conversation about COVID and could it treat it and that sort of thing. Many of you probably knew about it long before that in relation to lupus and arthritis and malaria, but I didn't know it was being studied at TrialNet. So you'll hear from Dr. Buckner in just a moment but first diabetes Connections is brought to you by One Drop. It is so nice to find a diabetes product that not only does what you need, but also fits in perfectly with your life. One Drop is that it is the sleekest looking and most modern meter My family has ever used and it is not just about their modern meter setup. You can also send your readings to the mobile app automatically and review your data anytime. Instantly share blood glucose reports with your healthcare team. It also works with your Dexcom Fitbit or your Apple Watch. Not to mention their awesome test strips subscription plans, pick as many test strips as you need, and they'll deliver them to your door. One Drop diabetes care delivered, learn more go to Diabetes connections.com Click on the One Drop logo. Dr. Jane Buckner is the president of Benaroya Research Institute at Virginia Mason in Seattle. She's also a rheumatologist who takes care of patients with rheumatoid arthritis and systemic lupus. She studies type 1 diabetes as well and is the co chair of the hydroxychloroquine study at TrialNet. Now, we've talked about TrialNet, and we've talked to TrialNet, or at least the people who work there. Many of you know that group as the people who will test your child's siblings or you or other family members for markers of type 1 diabetes, but they are tasked with the mission of finding out how to prevent type one. And so testing is just part of that. I mean, that's really where they get the ball rolling, but they have some incredible studies and I will link up more information and more episodes that we've done. We've done several with trial that I'm a big fan and I'm a big fan of anybody who takes part in their research going through those studies. Just having a family member tested. I think that's a big deal. And we should applaud everyone who does that. Quick note, again, this is more of a speech, right? I edited out some of the stuff here to Facebook Live the pauses, stopping as she reads the questions to herself. There are some beeps, there's some audible noises I couldn't take out but it's really fine. All right, here is Dr. Buckner, just after she has introduced herself and her role at TrialNet. Dr. Jane Buckner 4:25 And so we'll talk about a little bit about TrialNet first and then talk very specifically about this prevention of type 1 diabetes using hydroxychloroquine. Why did we pick this drug? How are we doing the study? And then also we'll talk about how to participate and take questions. Type 1 diabetes TrialNet is the largest international type 1 Diabetes Research Consortium comprised of over 100 locations and its mission is to prevent type 1 diabetes and stop disease progression by preserving insulin production before and after diagnosis. And so there's In a series of studies, there's a pathway to prevention. That's what we call a natural history study where we screen people who are at very high risk for developing type one diabetes, and we monitor them over time. We also do intervention trials in new onset diabetes. And we are now doing trials to prevent development of diabetes. The other part of the work we determine that where I've been really involved over the years is what we call mechanistic studies. When we do a clinical trial, we can go back to the lab and we can look at the blood samples from patients and try to understand why a certain intervention worked are help slow the progression of diabetes or loss of insulin production, or why it didn't work. And so that's where I've been involved over the years thinking about type one diabetes and what got me interested in this clinical trial. So why is TrialNet testing hydroxychloroquine to prevent type 1 diabetes? The first thing we need to talk about is thinking about type 1 diabetes. As a disease that progresses over time, we know people are born with a genetic risk, particularly relatives of individuals with Type One Diabetes children, or siblings of individuals with type one diabetes have a much higher risk of getting diabetes. And that's because of their genes. We know at some point along the way, in some people who have that genetic breast, their immune system gets activated, and they begin to develop immune responses that target the beta cells in the pancreas. What we've learned over the years, with the studies done by many scientists, but including those in town, that is that there's several stages to developing diabetes. There's stage one, which is where people have to autoantibodies but their blood sugar is still normal, and their pancreas is still functioning well, they don't know that diabetes, but in fact, they are on the road to developing diabetes and it's just a matter have time, at stage two individuals have these auto antibodies, that they now are starting to have abnormal blood sugars. And finally, at stage three is when we think of the classic clinical diagnosis of diabetes where individuals require insulin. Well, so the goal is actually, in this study, to prevent people from going from stage one, to stage two or stage three. The idea is if we treat people early at this very early stage of diabetes, where they have the immune response already targeting their islet cells that make insulin, if we could stop it from actually continuing, then we could actually keep people from getting clinical disease. So that's our goal with this study. So why did we pick hydroxychloroquine and in part of the story here is that I'm a rheumatologist and rheumatologists use hydroxychloroquine to treat many autoimmune diseases, particularly rheumatoid arthritis and systemic lupus, it's an oral therapy. It's a pill that you take once or twice a day. And it's used in these diseases and has been used Actually, it's a drug that's been available for over 60 years, initially developed to treat malaria. But in studies used by rheumatologist, it's been demonstrated to be very useful in rheumatoid arthritis and lupus. It's FDA approved to use in children and in pregnant women. And I have to tell you, it's not common a drug is considered that safe to do both of those. we know a lot about this drug. We know a lot about how it works, but more importantly, we know about side effects with this drug. So why should we think about it? Well, there's clear efficacy in lupus and rheumatoid arthritis that we know and I'm just going to say that one of the things we also know about lupus and rheumatoid arthritis is that there are diseases where people make auto antibodies that target different parts of them. body. We know those autoantibodies happen before individuals come in to see their doctor with these diseases and they predict development of the disease. There's been small studies that have been done that suggests that taking hydroxychloroquine before someone who gets a disease, let's say they have their very high risk for the disease, they have a relative who has rheumatoid arthritis or lupus or they have some initial signs of those diseases. And these early studies suggested that they may well prevent development of the full blown disease. And actually this idea of using hydroxychloroquine early before people develop clinical disease has also now part of large clinical trials in both individuals at high risk for rheumatoid arthritis. And a study for people at high risk for lupus and the rheumatoid arthritis study is called stop ra where individuals who have auto antibodies or have relatives and are at various high risk for the disease or start on hydroxychloroquine early and they're following them to see if they develop rheumatoid arthritis or if hydroxychloroquine actually prevents the disease. at trial that we were talking about what would be a good intervention to use to try to stop that progression from stage one to stage two and stage three, what would be safe enough for us to give children and people who were otherwise healthy, and also had made sense from an immunology point of view, and that's why we chose hydroxychloroquine. What we're doing in this trial is thinking about how type 1 diabetes starts, and that stage one where there's two or more autoantibodies, but normal blood sugar, and our goal is to stop at that point so that we can maintain a normal blood glucose and stop beta self destruction. The goal is to delay conversion to stage two and that would be having auto antibodies and abnormal glucose tolerance and to maintain that current level of beta cell function. And so the way we design this study was to actually look for individuals who are participating in the trial on that pathway to prevention, who we know have two or more auto antibodies, but still have normal glucose tolerance. So they're stage one. And because this drug has been used in in young children, we're able to start as early as age three. But we also are including adults as well. This is a study where it is placebo control, two out of every three participant will get the study drug, and the others, one third, we'll get received the placebo. This is really important in clinical trials, because we have to know not only if the drug works, but we also need to make sure that it doesn't cause harm. And this placebo control group helps us know both of those answers. This is a randomized trial. So a computer randomly selects who gets the study drug, and it's double blinded. That means no one knows Who is in which group until the end of the study and that includes the clinical coordinators, physicians who are participating in working with study participants. So some of the details and safety has become an issue that's much more on people's mind because of the use of hydroxychloroquine in the setting of COVID-19. And I can speak particularly to that as well. But let's first start by remembering that hydroxychloroquine has been used for over 60 years and is FDA approved for pregnant women and children. When we started considering the use of this drug. We worked within TrialNet with a group of infectious disease experts for study design, and we also monitor all the side effects throughout the study. Importantly, we know from treating particularly patients with lupus and rheumatoid arthritis, that adverse outcomes or safety issues are linked to the dose of the drug being used, the length of time that it's used other medications that a patient may be on. So when we do this study, we screen people who are participants for potential complications at the time that we randomize them. But we continue to follow for those at the time of the study. And I can go into more detail about this. Since we've been recruiting for this study. For over a year. Now, we now have a very good sense as well, not only from historical results with our patients from the rheumatology clinics, but also from the individuals participating in this trial. And just a few things about this trial. So, participants, this is a capsule that's taken by mouth as instructed. And our goal is to have people in this study taking this drug until they progress to stage two, that's the abnormal glucose tolerance, or stage three, which is diabetes onset. So it's it's a study where the participants are in it for several years. They have an initial study, visit, followed by three months, six months, and then every six months we see the participant in the study visits last three to four hours. And of course, all of our treatments and exams are provided at no cost. Here we have one of our study participants, Laila who's for taking her study medication, and you can check out her video online. Just a little bit about how to participate. The first step is to enter pathway to prevention, which is the TrialNet study where anyone aged two and a half to 45, who has a sibling, a child or a parent with Type One Diabetes is encouraged to participate and be screen. But we also broaden that to include not just your parents or siblings or children, but also Uncles, aunts, nieces and nephews. And we have quite a large group of participants in this and this gives us the ability to screen to see if you would be a person who has those two auto antibodies and would be qualify for this study. And to do that you can visit the trial on that site that we do home At home test kit. So this can much of this initial work can be done at home. And then we can have you in touch with people to understand if you would be a good participant for this. So I'm going to take questions now and I will go into more depth about hydroxychloroquine safety and try to answer other questions. The first question is, do you have any intervention trials currently recruiting? And so this is actually a really interesting question because TrialNet always wants to have intervention trials ongoing. So we have a series of trials in nuance at type 1 diabetes, and then we had just opened another trial in individuals who had to auto antibodies and abnormal glucose tolerance. Some of those trials are on hold, and that is because of the covid 19 pandemic there has been concerned about using medications that may suppress the immune response. So currently We are following the patients who have already received treatments. But we are not bringing on new subjects at this time. I would say our goal is to do that once we have a better understanding about how to move forward. But really interestingly, hydroxychloroquine is not considered immunosuppressive we started that trial in the summer of 2019. And we have continued that trial throughout the pandemic because it was felt that it did not put our our subjects at increased risk. And of course, at one point, there was thought that it may be helpful. We have asked our participants to continue taking their medications as prescribed throughout this period with the COVID-19. Yeah, so one of the questions is Could this be of any benefit to long standing diabetes patients who have no c peptide? And part of this issue is this beta cells that are stunned, so may be able to recover? That's one of those really interesting areas, and I think that the jury is out on that. Part of the reason that we decided to study hydroxychloroquine in these individuals who are in stage one is we think the role that hydroxychloroquine may play may stop the immune system, what we know is the immune system gets activated, and then it's a little bit like a steamroller, increasing and increasing in its aggressiveness against the body and against particularly the beta cell. And our hope was to stop it early before it picks up too much speed. And that's what we think hydroxychloroquine doesn't mean that it might not be helpful in this setting where we may have beta cells that are our stun and and it may become useful in individuals where once we've cooled down the auto immune response, maybe with another medication, that this may be a drug that we could use long term to maintain that kind of tolerance or quiescent stage. So I think we'll we'll have a better idea when this first trials done. Yeah, so the next questions is have have we seen any patient with negative side effects that you've heard so much about, and I know a lot of people are nervous because of what they've heard on the news, and so I kind of wanted to relate our experience. The first thing I could say is that we have our experience with our subjects in this trial, but as a rheumatologist, I have been prescribing this drug for, I hate to say it, but almost 30 years. So I've been been taking care of patients with lupus and rheumatoid arthritis who have been taking hydroxychloroquine throughout my career, because this is a drug that's been used for a long time. And I'd also like to say those patients take the drug, many of them for 10 or 20 years. So my experiences that and our experience with our subjects in this trial is that some people do have some side effects. Most of them tend to be more like some mild gi upside, initially, maybe a side effect. We also have to watch out for the eyes in this setting. We know that long term use of this drug can impact the eyes, so participants get regular eye exams as part of the study. So if there's any problem, we capture that quickly, and we have ophthalmologists who help us with that. There's also been concerns about cardiac arrhythmias with this drug. And that's been, you know, highlighted in the setting of COVID-19. I think it's important in that setting to understand that dose matters. And in some of those clinical trials, where we saw cardiac arrhythmias in COVID-19 patients, the doses were higher than we are using. The second point is that those individuals are under are extremely ill and in fact, are having some potential cardiac problems as part of their disease. So I think that's really quite different than what we see in a pattern in our patients in this trial and what I see with my patients with rheumatic diseases, that being said, the other issue is when you give this drug with other drugs that can aggravate or bring out a potential a rasmea We have been very careful throughout this study to have a large list of medications, we track those. And if it if one of our study subjects takes a medication we think could complicate it, we may hold the drug for a while. Right? And then one of the questions is about the dose, and we do select a dose for patients based on their weight in size. And the dose that our patients, if they're a full sized adult would take would be the same as the dose that I would be giving a lupus or an RA patients, for example. The next question is, is there any promise here that if beta cells are replaced in someone who has diabetes that hydroxychloroquine could prevent those new beta cells from being killed off? It's another really great question that we think about a lot at trial that, you know, again, I think with islet cell transplant, or pancreas transplant, you're probably going to need a stronger medication to control the immune response against that transplant. So at this point, I would say it could help After that initial immune response was controlled, but probably not initially, I would suggest that we would need a stronger immune suppressant drug because it's a transplant. I have a question about Can I tell you about why I think hydroxychloroquine will delay and prevent onset of type one. So that is one of those very interesting questions. So we've been using, as I said, hydroxychloroquine in the setting of lupus and rheumatoid arthritis for I think, 40 years in Rheumatology and myself for 30 years, and we've learned a lot about the immune system over the last 40 years. So when it was first used, really no one knew why it worked. They just knew it worked. And of course, that's the most important thing for patients. What's happened as we've gotten smarter about immunology is people have devseloped a much better understanding particular about why hydroxychloroquine work and lupus We think the auto antibodies are triggering an inflammatory response. And hydroxychloroquine actually acts within the cells to stop that triggering of the response. It's something called toll like receptor activation. So we think it, it stops some of that kind of unusual or abnormal activation of the immune system. But it also has an impact on how the immune system kind of shows that something's foreign and you should attack it. And hydroxychloroquine can actually impact the ability of presenting what we call self antigens to the immune system. And I think that's a really important part of this communication. There's a communication between B cells and T cells that I think it's really vital that it's impacting, and that's why I think it's going to be important in people who only have two auto antibodies but haven't moved further yet. One of the things we might think about doing after this trial is to even go earlier for those people who only have one auto antibody, who may not get Type One Diabetes if we could get in there even sooner, and we think that might be a good place to intervene. The question is, how long after diagnosis can be enrolled in a new onset study and each study that we do we have a particular plan to enroll for new onset. And so I think that is important to be in touch with TrialNet and find out what study would suit you if you have been very recently diagnosed. There are typically some studies that quite a few studies that enroll but we also are interested in some studies where people who've had diabetes for a while may help us understand the disease better. One of the other questions is have we thought about trying this in stage two or stage three, and we have not we have talked about where we think this drug would be most effective, and we thought stage one or even the single autoantibody high risk individuals would be where it would be be most effective. So we wanted to do that trial first. And if it's effective there, we would obviously then think about moving in into later stages. Those are all the questions I've seen. I really appreciate that you've taken the time to spend with us today. To hear a little bit about this study. I'd like to encourage anyone who has more questions or is interested in participating in any of the studies and trial mat, whether that's pathway to prevention, or one of our clinical trials to please contact TrialNet. Thank you very much, and I hope you have a great rest of your day. Announcer 24:40 You're listening to Diabetes Connections with Stacey Simms. Stacey Simms 24:46 More information and if you'd like to watch that as well, I will link it all up at Diabetes connections.com. But as usual, with our episodes beginning in 2020, we are providing transcripts for all of these episodes. So if you know somebody who would rather read Then listen, go ahead and check it out. And if that's maybe you, you can go back. And listen, I'm trying to add in more transcripts for previous episodes, but it is from January of 2020. On if you're looking for that, and I have a question for you, and I have a deal for you. So stick around for just a moment. But first diabetes Connections is brought to you by Dexcom. And we started with Dexcom. Back in the olden days before share, gosh, we've been with them for a long time. So trust me when I say using the share and follow apps make a big difference. Benny, and I set parameters now but when I'm going to call him how long to wait, that kind of stuff. It helps us talk and worry about diabetes less. You know, if he's asleep over away on a trip, it gives me so much peace of mind. It also helps if I need to troubleshoot with him because we can see what's been happening over the last 24 hours and not just at one moment. The alerts and alarms that we set also help us from keeping the highs from getting too high and help us jump on Lowe's before there were a big issue. Internet connectivity is required to access separately Dexcom follow app to learn more, go to Diabetes connections.com and click on the Dexcom logo. So I said I had a question and a deal. So here's the question. What do you think of episodes like this, where it's not an interview, but I'm bringing you information that has been, you know, already put in the world via a Facebook Live or somebody giving a speech or a conference presentation, whether it's virtual or in person? Do you want to hear more of that I've done this sporadically over the years. Personally, I love it because I can't catch all the stuff that's going on right now. I did not see this Facebook Live as it was live. But I wanted to make sure to catch the information. So if this is something that works for you, let me know because I'd love to reach out to more diabetes organizations that are doing things like this and see if we can give a kind of a second life to some of the stuff that they've done. We don't want it to be one and done right if it goes out there once did it work for you? Is it okay that you didn't see her She did have slides. I listened without the slides. And I didn't think it really made a big difference to me. But if it did to you, if you felt confused, let me know. I'll see if I can grab the PDFs from JDRF. I'm not quite sure how to share those in the show notes. But hey, we can try. So that's the question. And the deal is the world's worst diabetes mom is on sale. And this is kind of a two fold thing. So it's on sale at the website at Diabetes connections.com. If you use the promo code FFL2020. That was for friends for life, the virtual conference that happened earlier this month, that promo code will save you $4 off of the cover price. Again, it's FFL2020. And Amazon has also dropped the price of the paperback as of this taping. Amazon doesn't alert you when it does this. It just it just does it and I have a feeling it's because of the special we ran in the sales were making on the website, but they dropped it as well. And if you're a Prime member, of course you get free shipping. So I sign books that come through the website. I can't see seiner personalized books that go through Amazon, but it's on sale in both places. No promo code needed on Amazon do not know how much longer it'll be for sale like that on Amazon. But the ffl 2020 promo code is only good till the end of July. So go get it. Speaking of friends for life, the next episode should be just a couple of days from now I'm working on a bonus episode of the faithful Woods squares. This was the game show that I did it friends for life, and we're putting out video form but I'm also going to put it in podcast form just to cover all the bases. So hopefully that'll be out in just a couple of days. And you can enjoy that it really was fun. I'm so glad it turned out well, what are we going to do next? I got more requests to do Hollywood Squares again or FIFA with squares. I usually do a take off of NPR is a Wait, wait, don't tell me as we don't poke me. But I'm kind of thinking about doing some kind of Family Feud? Stacey Simms 28:53 All right. Let me know what you think. Thanks, as always to my editor John Bukenas of audio editing solutions. Thank you so much. much for listening. I'm Stacey Simms. I'll see you back here for our next episode until then, be kind to yourself. Benny 29:11 Diabetes Connections is a production of Stacey Simms Media. All rights reserved, All wrongs avenged
Why do you love your pump? We asked listeners to give us short reviews of the systems they use. This is sort of a companion piece to our last episode – when we went through how to choose a pump. That was more about process. We talked about how you can’t make a bad or wrong choice, and this episode really bears that out. Spoiler – every pump has big fans. Check out Stacey's new book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Announcer 0:22 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:28 Welcome to a bonus episode of Diabetes Connections. We're going to talk about why we love the insulin pumps we use, or really you use. I asked listeners to give me short reviews of the systems they love. And I cannot thank you enough for sending these in. This is sort of a companion piece to our last episode, we went through in detail best practices of choosing a pump, right not which pump but that was really more about process. You know you really cannot make a wrong choice here. This episode really bears that out and might be a disappointment to some of you I'm sorry to say but spoiler alert here. Every pump has big fans. I asked in our Diabetes Connections Facebook group who loves their systems, what do you love about it? Then I had one adult with type one and one parent of a child with type one to chime in on each pump system. So these are pump systems that are available in the United States. There are only three pump companies right now, Medtronic, Tandem and Insulet making pumps that are available in the United States. I decided no DIY for this because people who use DIY systems generally know enough and educate themselves enough about their options. And their options are different, right? So these are the commercially available pump systems and they're actually for all of them. the very latest, which I didn't expect and didn't ask for, but it turns out everybody who chimed in, is using the up to the minute latest system as we are recording here in the middle of July of 2020. If it sounds like these folks are reading, they probably are. These aren't actors, as they say they're real people. They weren't actually interviews. I just asked them to send me the audio. I gave them a little bit of a prompt, and then said, just send me some short stuff. Some people are a little shorter. Some people are a little longer, but I think you're going to get the idea pretty quickly. Let's start with Medtronic. And both of these folks are using the 670G system. Shelby 2:30 Hello, I'm Shelby from Elizabeth City, North Carolina. My daughter Caroline was diagnosed with Type One Diabetes on Thanksgiving Day. 2017. And she's now 10 and a half years old and thriving with a Medtronic 670G insulin pump. We got this pump shortly after her diagnosis in January 2018. I love the automated feature that adjusts the basal rates either up or down based on how Her blood glucose is trending. The pump is waterproof, which is great, since we do a lot of swimming in the summer. And if we're going to have extra activity, we can tell the pump to set a temp target which helps keep her from going low. The CGMs the continuous glucose monitor that works with the pump does not have a share or follow feature at this time. But we found a do it yourself workaround called Nightscout, which in my opinion is superior to the typical share follow function on other CGMs systems. I'm definitely excited about the new upgrades that Medtronic is coming out with, but for right now we're very happy with the overall control that she has with her blood glucose with very little need for micromanaging on my part or her part. So that is my thoughts on the 670G Phyllis 3:54 Hi, I'm Phyllis. I'm from the greater Boston area and Massachusetts. I've been living with diabetes for over 40 years and have been using the Medtronic Minimed 670G system for about three and a half years. Originally, I really was interested in the 670G because of auto mode. Although to be honest, I wasn't sure that the system could do better than I could with managing my diabetes. But I was pleasantly surprised. One of the areas that I was really looking forward to with some help is around exercise and the systems built in temp target of 150 really took the guesswork out of my workouts. So now three and a half years later, my time and range is generally about 85% with minimal effort when I put a little bit more time and pay attention to what I'm doing and eating that easily bumps up to 90% and that equals average A1C of about 6.2, 6.3 for the last three and a half years. I feel better about everything. I physically feel better and really excited about this system. Stacey Simms 5:06 Next up is Tandem. And both of these listeners, just like with Medtronic are using the latest model. They're using a tslim X2 with Control IQ. Chris Wilson 5:16 Hi, this is Chris from San Diego, California. I've had type one for almost 23 years and I've used a pump for five of those years. I use a Tandem tslim X2 with control IQ. I started with the original tslim upgraded to the X2 when it was released. And I've been through three major pump software updates in that time. The thing I like most about the pump is Control IQ, which is Tandem’s advanced hybrid closed loop software. I was initially drawn to the tslim by the touchscreen user interface and the rechargeable battery. The only thing I'd improve is the cartridge fill process which is a little complicated but gets easier with practice. Beth 5:50 Hi, I'm Beth and I live near Denver, Colorado. Our six year old has had Type One Diabetes for three and a half years. She started on an insulin pump six weeks after diagnosis And has been on a Tandem tslim for approximately a year. She's been on Tandem tslim with Control IQ for seven months. We love that it communicates with her Dexcom CGM and gives her more or less insulin as needed. The exercise mode is great for bike riding and swim practice and the touchscreen is simple enough for her to operate herself. She loves that her blood sugar and trend arrows are visible directly on the pump. With Control IQ. My husband and I have had the most uninterrupted sleep since before our daughter's diagnosis. We couldn't be happier for this technology. This pump is the best choice for our family. Stacey Simms 6:34 And finally, the people who are using the Omnipod dash system. Lynette 6:39 Hi my name is Lynette and I live in the Atlanta area. My son was diagnosed with type one two years ago yesterday and we have been on a pump since October of last year. We started on Omnipod the biggest reason he chose Omnipod was because he did not want a tail as he said, or tubing. We went with the tubeless pump we love that it's waterproof we love that he can shower in it believe that he we can do smaller amounts than you can with pens because he tends to need smaller amounts than half units. We love just everything about it. To be really honest, our only major complaint is that it tends to come off on pool days and we've tried lots of different options for keeping it stuck and so far we haven't found something that works. But other than that we're super happy with our Omnipod dash system. Sondra 7:30 Thanks. Hi, this is Sondra and I live in Tacoma, Washington. I was diagnosed with type one in 2006 when I was 57 years old. I did MDI for a year got the Dexcom in 2007 and still struggled with random overnight low lows in 2008. I started using the Insulet Omnipod. I chose tubeless as I had struggled with sleep since menopause, being able to have a very low basal rate overnight has helped me so much with my nighttime lows dialing in basal rate It says made managing my type one much simpler. I love being able to do watersports and not worry about being unplugged from basal insulin. I'm looking forward to the Omnipod five which will create a closed loop with my Dexcom six. I'm hoping the FDA approval for the Omnipod five and Tidepool Loop come soon. Announcer 8:23 Your listening to Diabetes Connections with Stacey Simms. Stacey Simms 8:29 Thank you so much for sending those in. Isn't it interesting that it's pretty easy to find people who love whatever system that they're using? I didn't have to hunt high and low I put an ask in the Facebook group and found a whole bunch of people. In fact, I had to cut off the comments. We had so many people who wanted to say how much they loved the system that they use! Of course, there are personal factors and preferences that come into play. So just like we said in the previous episode, you got to see these systems you got to hold them in your hand. And I do think you need to know also as you listen and you we've assumed this but just in case, all six of those folks are using a system, not just a pump, so they're using a continuous glucose monitor. In the case of Tandems tslim, they're using the Dexcom. Same thing with Insulet Omnipod, they're using the Dexcom. With the Medtronic 670G, they're using the Guardian sensor three, which is a Medtronic sensor. It's actually the only one with the same company. The other two are separate companies with working agreements. You can use an insulin pump without a CGM. We did it for almost seven years. Between the ages of two and nine. My son Benny did not use a continuous glucose monitor but he did get an insulin pump six months into it, at age two and a half. He just used a pump and certainly you can use it that way as well. We now use, as you likely know, if you listen, we use the Tandem system we have the X2 with the Control IQ software. We've had that since January. Benny wears a Dexcom CGM and we love it. I think it's a fabulous system. There are aspects about it that he really enjoys and prefers that you know, friends of his don't feel the same way about. I’ll lay it out here, I've said it before. What he likes about the tslim is that he doesn't have to have an external controller. There's no PDM for it as there is with the Omnipod. He likes that it's flatter on the body. And he absolutely loves the Control IQ software, which has not only lowered his A1C significantly, it's done it with less work from him and less nagging from me, although he still argues that I may like him too much. I mean, come on, man. But he's 15. I guess that's his job. I will say though, in all fairness and knowing what I know about the diabetes community and the technology that's out there, a lot of people feel very differently, right? There are a lot of people who prefer the flexibility of sticking an Omnipod anywhere they want on their body. They don't care about schlepping a PDM. They like that. It's waterproof. They like that they can remote bolus their kid. That's a big deal. We talked about that last week. And for Medtronic, people, there's a lot of people who like that it's all in one (note: I mean that it’s all one company. There is no “all in one” CGM/Pump device). They like that. They don't have to go to different companies, and they like that their doctor may be more familiar with it. Is there a downside to every system? Sure, I went through a couple of pros and cons there. But it does come down to personal preference, I am going to link up a lot more information about these systems and what's coming. Unless something really bonkers happens. And you know, the delays from COVID, or something really goes wrong. They're all on track to be controlled by phone, if not by the middle of next year, then in the next couple of years. And once that happens, and you get true remote bolusing for all of these systems, then it's really going to be personal preference. I mean, once that happens, it's going to be absolutely amazing. But you cannot buy today on promises of tomorrow. You know that it is of course worth noting that podcast listeners are more educated and have more money than the population overall, not just in diabetes, not just for this show. That's really just podcasting. So it's not really a big surprise to me that we easily found six people using the latest and greatest. Of course, there is so much to talk about in the diabetes community when it comes to access and affordability and insurance and affording the insulin that needs to go into these pumps. So I don't gloss over that. We've talked about that many, many times before and will continue to do so. But this particular episode, I hope is helpful in seeing what people think about the technology that is out there right now. There really is no one answer. I'm going to tell you one quick story before I let you go here. And I'm sorry, I apologize in advance to all of my rep friends, the reps for all of these companies are just like everybody else. There's wonderful ones, and there's people in it for the money. And you have to be careful about claims. And I'm not singling anybody out. I'm not singling any company out. This happens here, there and everywhere. But I was at a conference years ago, and I went over to one of the booths just to check out and see when I go to all the booths see what's going on. And the rep for this pump company said to me, if you switch to our pump, I guarantee your son's A1C will come down half a point I asked him about that. And he gave me some cockamamie answer. If I tell you more about it, you'll know the pump company. So I don't want to go into it. But I mean, it was really a stretch. But if I had been a newer diagnosed family, I think I would have been very much influenced by that. I asked him if he had any literature and studies to back up his claims, and he did not. But he said he would email me something, I gave him all of my information. Of course, I never heard from him again, the idea that switching technology can lower your a one c by a certain point, and that's why you should switch. That's a tough one. I just said that control IQ dropped my son's A1C significantly, right. But you know what? It's the whole story of him. It's not just that pump system. If we were new to pumping, if we didn't have the settings right, if he didn't know how to, you know, do certain things if he was going through a phase or something where he didn't want to do anything. If he wasn't having success with the CGM if he was getting a rash if it wasn't working For him, if it was falling off, if the pump wasn't comfortable, if it wasn't the pump he chose, and he didn't want to use it, there's a lot of things that can happen there. Pumps are not a panacea. And anybody who tells you that they are.. I want to be careful what I say here. But let's just say they may not have your best interest at heart. So my good guy reps, and there are so many of them. And we have one who is amazing, and I love and is one of our heroes in the diabetes community. I'm sorry for that. But I think it's really important that people understand it's just like the endocrinologist who says, I'm only going to learn this system. So you can't have a separate pump, because I don't want to learn another system. Right, man, we got to fight for so much in this community. I hope this helped. If you have any more reviews or questions about pumps jump into Diabetes Connections, the group will have an ongoing discussion there. And I kind of hope this helps you think a little bit more critically when you see these discussions in other Facebook groups, but let me know what you think. And I will link up in this episode a whole bunch of guides from different And organizations who've done really good work comparing the technology that's out there pro and con, and please go back and listen to the previous episode about how to choose a pump if you haven't already. thank you as always to my editor John Bukenas from audio editing solutions and thank you for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself. Benny 15:24 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged
What's it like to live with a pancreas transplant? And why would you need one? Brandon Mouw was diagnosed with type 1 as a child and lived well with it for many years. He explains what happened to change that, what led to the transplant and how he's doing now, a year and half later. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's new book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Transcription coming soon!
Meet two people with diabetes making a difference in very different ways. We're talking to dietitian and strength coach Ben Tzeell & teen author Morgan Panzirer. First, if you've sort of fallen off the nutrition and exercise wagon in the last few months, you’re not alone. But getting back in the game doesn’t mean going to extremes. Ben has advice about starting small and making changes that stick. Morgan was diagnosed with T1D at age 6. She's now 19 and just wrote a book about her life – so far – with diabetes. It's called Actually I Can. Ben's Blood Sugar Boss program Megan's Book (Amazon) This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's new book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes, and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom. This week, I talked to two people with type one making a difference in very different ways. First, if you've sort of fallen off the nutrition exercise wagon in the last few months, you're not alone. But getting back in the game doesn't mean going to extremes. Ben Tzeel 0:37 Life is too short to not enjoy food like that. And the last thing you want is you're constantly eating air quotes healthy, and now you're feeling deprived when you see all your friends eating these other things. Stacey Simms 0:47 That's dietician and strength coach Ben Tzeel. He's got more advice about starting small and making changes that stick in Tell me something good. I'm talking to Morgan Panzirer diagnosed at age six. She's now 19 and just wrote a book about her life so far with diabetes. Morgan Panzirer 1:05 And I vividly remember being in the car driving to New York City The following day, and saying to my parents, everything will be fine as long as I don't need a shot. Stacey Simms 1:15 The book is called, actually I can, and after talking to Morgan, I can tell you better believe she can. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of Diabetes Connections. I am so glad to have you along. Welcome if you're brand new, we aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed right before he turned two. He is now 15 and a half. My husband lives with type two diabetes. I don't have diabetes. I have a background in broadcasting. And that is how you get the podcast. I have been so busy the last week mostly because for whatever reason, sometimes podcast interviews seem to come in clumps. So I had a lot of interviews to do and a lot of production I take care of a lot of it before I send it over to my editor who I've mentioned before, but also I've been busy with my Friends for Life presentation, Friends for Life is the biggest family conference all about diabetes in the US, possibly the world. And instead of having an in person conference this year, like everybody else, they're having a virtual conference. And so I decided, and boy, I thought this was a good idea that I would do my usual game show I usually do a game show presentation as one of my talks for them. But I would do Hollywood Squares because boy zoom just lends itself to Hollywood Squares, doesn't it? That's what I at least what I think of and I gotta tell you, I'm thrilled with how it came out. But I also got to tell you, I'm not sure I'll ever do it again. We had to get eight people I was the ninth you need like a tic tac toe board right for for the Hollywood Squares. The FFL-Wood squares excuse me, that's Friends for Life, FFL. So FFL-Wood squares and I decided to go big and I got people from all over the world, different time zones. Day here night here. Early morning here, it was amazing. So huge credit to my cast of characters. Thank you to the contestants. I cannot wait to share it with you. The conference itself is mid month. If you've signed up for that you'll see it then. And then we'll drop it as a video in a podcast episode. Shortly after that. That's one of the really fun things that I get to do, right. I mean, you have an idea you get to try it. You see if it's a disaster, you see if it's fun, but you know, it's it's never boring, that's for sure. Okay, interviews coming up in just a moment with Ben Tzeel and Morgan Panzirer, but first Diabetes Connections is brought to you by One Drop. One Drop is diabetes management for the 21st century. One Drop was designed by people with diabetes for people with diabetes. One Drops glucose meter looks nothing like a medical device. It's sleek, compact, and seamlessly integrates with the award winning One Drop mobile app, sync all your other health apps to One Drop to keep track of the big picture and easily see health trends. And with a One Drop subscription you get unlimited test strips and lancets delivered right to your door every One Drop plan. Also in access to your own certified diabetes coach have questions but don't feel like waiting for your next doctor visit your personal coach is always there to help go to Diabetes connections.com and click on the One Drop logo to learn more. Unusual show this week and that I have two guests two separate interviews. And if you're here only for one or the other, that is fine. I can tell you that Morgan's interview starts about 22 minutes from now, so you won't hurt my feelings if you skip ahead. But I really think you'll like my first guest, Ben Tzeel. we first talked to him last year. He's a dietician, he's a strength coach. And Ben says eating and living with diabetes should not be boring or feel like punishment. We had a fun conversation about what that really means good intentions about eating well, and exercising and quarantine and more. Here's my talk with Ben Tzeel. Hey, Ben, it's good to talk to you again. Thanks for coming on. Ben Tzeel 4:53 I'm just so thankful to be here. And it's so awesome. It's just amazing. Thank you. Stacey Simms 4:58 You're really well. We'll see about But Ben Tzeel 5:02 it's human. It's human interaction right now we don't have much of that these days do it. Stacey Simms 5:06 Well, let's start talking about that. I mean, how have you been living since the stay at home orders? What's your life been like? Ben Tzeel 5:13 I just don't go anywhere. I've been living in Florida, not nothing against Florida, but I feel like the cases go down and then the cases go up. And that's just what you hear about everywhere. And I just figure it's just not something I'd rather really want to deal with if that makes any sense. Do you live alone? I actually live with my girlfriend and fortunately for me, she's willing to do a lot of the grocery shopping and a lot of the day to day stuff at the pharmacy but honestly, we just don't go anywhere because she works in the ICU as a pharmacist and she sees all this stuff firsthand. Wow. Stacey Simms 5:44 That's gonna be interesting job to have right now. Unknown Speaker 5:47 Oh, yes. Stacey Simms 5:49 Assuming that you've been doing this since mid March, yo, how's your health? How are you keeping up because you're pretty intense person when it comes to fitness? Ben Tzeel 5:58 Yeah, I definitely like to thanks. So it's something where I've had to get creative. I've had to step outside of my comfort zone and really look at what I have and say, Okay, what can I do with what I currently have? And slowly, you can assemble a little mini gym at home and things like that. But I've really, really taken time and effort to focus on what can I do instead of, well, this is out of my control, I guess my fitness is gonna go away. I guess all of my other habits that I've worked so hard to develop are gonna just fall by the wayside? Stacey Simms 6:26 Well, I think for some of us, those things, the second part, those things have happened, right? Because it is hard to maintain a routine It is hard to, you know, especially when, and I'm gonna get personal here for people like me, you know, you're a strength and conditioning coach, you know, this is what you do. I'm a suburban mom who walks her dog and goes to the gym a couple of days a week. And it's been really easy for me to fall out of those good habits over the last couple of months. You know, do you have any advice? If people are listening and thinking, Well, I haven't kept up so it's too late now. Ben Tzeel 6:56 Well, it's first one of those things is to your point where you mentioned It's too late. Now, it's never too late to actually start and say, I'm gonna look back and say, This is what I did before, this is what I was doing. And maybe I won't be at that same point right now, because I have let myself fall off because I have fallen out of this routine. But what is something I can do today that small to just build a little bit of momentum. And as you build that you take another baby step, another baby step, and suddenly, you're taking strides to get back to where you were. So if you start from that mindset, and that point, just make that tiny little shift, you end up in a situation where suddenly three, four weeks from now, you're thinking, wow, I'm already almost back to where I was. Because your muscle does have a memory, it is going to remember where you were. And as long as you put in those same habits you previously had, you should be totally fine. Stacey Simms 7:45 It's funny when you talk about, you know, getting back into routine because I think at the beginning of this, I don't know if this happened to you, me and my daughter, and I think a lot of people and my daughter came home from college, and we said All right, we're going to do yoga on YouTube. We're going to walk the dog like five miles every day, and we're gonna get really, you know, in great shape, we have a stationary bike, and we're going to do all these bikes and all these rides and, and we really haven't done much of it at all after those first couple of weeks, and I've seen some really funny parody videos on that and a lot of people who have felt this way, but I want to flip that around and say you have taken as you said, You've gotten creative in your house, can you tell us a little bit of some of the things you've done to make your your home gym, I'm assuming that you didn't run out and buy a whole bunch of, you know, gym radio equipment? Ben Tzeel 8:29 No, I was fortunate that I my parents don't live too far away. And I had a bunch of dumbbells and a bunch of things from my youth that I was able to pick up. But beyond that, I mean, I was pretty much in the same situation that everybody else was where I had a few resistance bands and a few dumbbells and a few little things and had to start realizing. All right, well, I want to keep my insulin sensitivity good. I want to stay on this track of that I've been working so hard to be on what can I do. And so maybe that requires you sitting down and saying Alright, I'm going to restructure my workouts, I'm going to tell myself maybe I was doing four days a week before an upper body and lower body, you can still do that. But you may have to adapt. Instead of using a cable, you may have to use a band instead of using like a barbell or instead of using a heavier weight, you might have to go more reps at a lighter weight, or incorporate pauses or incorporate other bodyweight movements that can be just as challenging. And honestly, the first few weeks of the quarantine, stay at home, whatever you want to call it. I actually felt like I was more sore than when I was in the gym because I had to push harder. Stacey Simms 9:34 You've mentioned your blood sugar several times you've lived with type one you were diagnosed when you were a kid. I've heard two schools of thought here over the last couple of months. One is you know, my blood sugar's are all over the place. I'm stressed out I'm so worried and you know, things are crazy. And then the other side of the coin is my blood sugar's have never been steadier. You know, I'm not going anywhere. I'm not eating restaurant food, where do you fall in on that? Ben Tzeel 9:56 I would probably fall. That's it. I mean, I'll Honestly, it's a good question because I see it a lot from the first perspective. So I feel like I then kind of translate that to me. But it's actually my numbers have been in better control since this all began. Because there haven't been as many extraneous factors. I'm not going places. There's lots of unknown variables introduced. But I just I feel for a lot of the people that are in the first situation because there is that lack of routine and that lack of structure. And while everybody says, Oh, I, I wish I could be home more, I wish I didn't go to my job. Taking that structure out of the picture can really make it difficult to stick to that exercise program really stick to the food and the nutrition that's been making you feel good with good blood sugars, and you ultimately fall off that path. And when you do your blood sugar's kind of take over everything else. And during a time where there are no sports, there's not lots of distractions, there's no big gatherings, there's no concerts, your blood sugar's can literally become the one thing that you hone in on and focus on way too hard. Stacey Simms 10:55 That's funny because I thought you were gonna say there at the end that you can really you can focus on And really make a great difference. But you said you focus on and you know, it can it can not be a great thing. Can you expand on that last thought? Ben Tzeel 11:08 Sure. And I mean, of course, I can tell you it, there's ways to get around it. But a lot of people what will happen is, I mean, think about it like because there aren't tons of social things to be doing. And there's not tons of activities and tons of distractions, you start to look at the few distractions you have in your life. And one of them would be, I wouldn't call diabetes, a distraction, but it's one of the big prominent parts of your life if you have it. And it just starts to become a bigger and bigger and bigger thing that you just the more you focus on it, the more it expands and the bigger role it can take in your life. So I've watched a lot of people people I've worked with people I've interacted with on social media, that they end up in a situation where their blood sugar's just take over their entire existence where they're looking at their decks calm every five minutes, wondering what's going to happen and sometimes that leads to great results, but other times, it just drives people crazy. He drives up their stress level and they get into this loop of frustration. Oh, my blood sugar's high. Oh, I'm a failure and they go down the spiral that is very counterproductive in terms of living like a really as free of a life as possible to do right now. Stacey Simms 12:14 Yeah, I would also echo that for parents as you were listening. I think it's super easy. And I found myself doing this too, with Benny home a lot more. It's easy to focus on our kids blood sugar's more, right? They're not going anywhere. They're not go to the movies, they're not hanging out with friends. And it's easier to make that a bigger focus than it needs to be. So I'm kind of listening to this and taking it to heart. But you know, one of the things you're really known for in social media is these these crazy foods, right? We talked about this last time when you were on, you know, giant donut, big meals and stuff. And I'm curious if there's, you know, we often figure especially newly diagnosed, we often find out that we love restaurant food because it's full of hidden fats and sugars and you know, salt and butter and all those delicious things that We love and that's what makes restaurant food so good. But it's kind of hard to bolus for that stuff. Are you finding it easier? I mean anything on that in terms of home cooking, which I'm so sick of Ben, I am so tired of cooking. And my husband helps if he cooks too, so I'm just sick of it. Ben Tzeel 13:13 Well, I can't blame you for being sick of home cooking because it gets to a point where I'm probably three months or so from having had something from the outside. And it's I'm just craving something Stacey Simms 13:26 brought in a meal. You haven't brought anything in. Ben Tzeel 13:28 I just maybe I'm paranoid, but I just I just would rather be like, you know what, at least I know, I'm dealing with the prep and I'm dealing with everything else. And when this starts to settle down, then I'll start to venture out and have all of the fun food again. Not that I haven't had fun. Trust me. You can make many fun things at your house. I know what you're making. Stacey Simms 13:45 Yeah, no, I have friends who haven't brought any food in. I mean, we're not in that camp, obviously. But I know a few people who've done that Ben Tzeel 13:51 Emilio wants me to really bad so we're working on it. We're in a negotiation right now. But to your point, I would say when you know All of the factors within what you're eating. So of course, you know that you've prepped it, you know, what you've put into it, you know, everything and everything. And there's no variables, there's no question marks. And we're not talking about the COVID part, but just about the actual composition of the food itself, then it's a lot easier to bolus for because you have all the answers. You have all the math right there when someone else creates something, even if it's something that, you know, Oh, I know, this is a bacon double cheeseburger, and I know I've had them before. And this is what happens. There's some sort of variability because that part of it is out of your control. And that lack of control can be difficult to account for granted. There's ways to take it in to consideration and be able to say, all right, this is what I'm going to do based on experience based on other knowledge, like put numbers and experience together and make a very educated decision and dose and do amazing with it. But just that little factor of there's other stuff in here there is that hidden fat you were describing. There's sometimes things are cooked in, in oils we don't know about there's sugar that might got thrown in there that you don't know. And then you end up eating some foods like that and you get frustrated you you have chicken alfredo and your blood sugar goes up to 320 for the next seven hours, no matter what you do no matter what you dose and you're just full of frustration the whole time. Stacey Simms 15:14 So you work with a lot of people with type one and your background is nutrition. You have a master's degree, you're registered dietitian. I'm curious what the first change you urge people to make when they come to I know not everybody's the same. But you know, one of the questions maybe that you ask, Ben Tzeel 15:30 I guess, coming from me, the first things I want to know is where people are starting out right now. Like, what are you eating? and kind of just getting you aware of what are you eating because as evidenced during this time, and this time, please put a magnifying glass on it more than anything else. But people kind of just go through the motions. They don't pay as much attention to, oh, I'm eating X, Y and Z. They just say oh, I'm gonna make whatever I can grab and I'm just gonna go for it and eat and then continue and a lot of people can't tell you what they ate for lunch yesterday. So my first goal is get them really aware, what are you eating? Start to kind of get a sense of it and then get them understanding. Are you making the meals complete? Are you getting your proteins, your fiber, your veggies? Are you getting them to the point where you're getting the nutrients that you need for both the body composition that you want, but also for the blood sugar control, because once you have the blood sugars and control, the body comes a lot faster, whether you want to lose weight or get strong. And once the blood sugars are controlled, you can do all the things in life that you really want to be doing. Stacey Simms 16:30 I'm always worried about talking about diets, right? Because people want to lose weight, they go on a diet, people try all sorts of different things. We've talked about this in the past to me low carb, high carb, whatever it is, what do you find works overall, in general, for the people that you work with. Ben Tzeel 16:45 For the people that I work with. I've had people on 400 grams of carbs, I've had people on 40 grams of carbs. The most important factors that I've noticed are getting enough protein into your life and I know a lot of people are concerned Oh protein is going to Your kidneys. But all the research, if you dig into it has shown that a higher protein diet is actually advantageous to the kidneys. I'm not saying you need to eat like five chickens a day, but at the same time, a substantial amount of protein. I would also say making sure you do get the fiber. That's why I tried to hit on those big three the protein, the fiber than the veggies, the fiber is going to be important whether you get that from veggies and fruit or whether you do get that from some grains. Some people do well on a decent amount of carbs. Again, it's that carb side of it is preference and everyone in diabetes is so fixated on it, when I can't stress enough where people that I've worked with are super successful on all levels of carbs, but having the protein, having the fiber, having enough of the veggies, those three things and then the other thing would be the 9010 rule. And that would be something where I would I don't know if it's actually a rule I may have made it up but it's 90% of the time you're eating on point you know what you're doing, you're making quality choices and that other 10% of the time you're enjoying the sunset You're enjoying the desserts, you're enjoying the finer things that life has to offer. Because life is too short to not enjoy food like that. And the last thing you want is you're constantly eating air quotes healthy. And now you're feeling deprived when you see all your friends eating these other things. And as long as you have a strategy on how to dose for it, so your blood sugar is going to be ultimately good. There's no reason to deprive yourself of having that and so many people are living limited in that scope of I can't have that because I have diabetes, that food scares me. This is awful. Like, I wish I could have that and you can have that. But allowing yourself that wiggle room of 10% that is usually enough to say hey, I'm gonna get the results I'm putting into a effort 90% of the time to get the blood sugar's get the body but then the other time I can enjoy everything. Unknown Speaker 18:50 What's your big favorite 10% fool? Ben Tzeel 18:53 That's Oh, that's a loaded question. I was gonna say there's a restaurant here called dance and dance. And Tampa has these loaded nachos that are so good. They're like a once every six month kind of thing, but they've got like the cheese and the pulled pork, and they've got the beans and they've got the ground beef and honestly, it's actually not a terrible meal in general but there's just so it's so calorie dense. That would be one cookie dough for sure would be one. The edible cookie dough not like cookie dough. That's raw eggs. And then Honestly, I have to say this but have you had cookie butter before? I have not had cookie pokey buttered so I love cookie. What is it cookie butter? It's I don't even know how to describe it. There's like this. I know the first time I had it was from Trader Joe's and then they have some everywhere apparently I didn't know it was a big thing. But it's literally like the butter form of cookie. It's like imagine peanut butter consistency but it tastes like a cookie and it's basically straight fat and straight sugar. But it's so good. Oh my God. That is my guilty pleasure. I will not lie. That's It's so good. That Great, Stacey Simms 20:00 okay, he's got some advice. We've You know, we've gotten some insight into how you operate. I know you have a new program that you're working on, tell us what this is all about. How can people take part? Ben Tzeel 20:11 Absolutely. So I have a program called blood sugar boss, because everybody wants to be a blood sugar boss, you want to be in control of your blood sugars and in control of your life, getting the body that you want, and literally living life without any kind of limits. And so the premise is, you're going through and restaurants become no big deal. You can walk into a restaurant by the end of this and point out what you want on the menu and say I want that and know how you're gonna dose for what your game plan is going to be. No questions asked, like the on the exercise side of things with respect to blood sugars going low constantly, that part's eliminated. You know, you go and exercise no matter what you're doing. We're eliminating the lows. we're eliminating the highest you can truly do what you want to do without having any concerns and actually focus on The exercise instead of Oh my god, what is my blood sugar going to do? Then of course talking about the food side of things to make sure that you know what choices need to go into that 90% what choices need to go to that 10% and when you do go in that 10% How to dose so you're not concerned? Oh, man, I'm going to be 300 for the next six hours. I know exactly what to do for that. I mean, we're going into travel when travels the thing again, you know, we're making sure that you go on a trip, you're like, Okay, instead of vacation being stressful, this is no big deal. We're hitting everything on all different kinds of angles. And by the end of it, you can walk away from it saying, I am in control, no situation will faze me and this is literally everything I need to know about diabetes, and I forgot one of the other big things were kick starting your metabolism up. So you're going to be able to be prepared to get stronger and lose weight. At the same time. I'm curious you you share a lot as I mentioned on inside on social media, and the other day, I saw you share a post where you were over 300 for a while, you know, you had I think it was at a Ben canula or something like that. Are you concerned that when you share something like that, right? Do you get feedback from people saying, how could you that's so dangerous? Or, you know, how could you let that happen? I'm curious what kind of feedback you get when you are that transparent, because, you know, we all know that's gonna happen, right? And I think if there's a lot of people out there that go on social media, and they act a certain type of way, and they say, Well, my blood sugar's are great all the time. And my numbers are always the decks combined, it's flat, and everything's awesome. And that's cool. You can share that. But that's just sharing the highlight reel of life. People are almost afraid to show the authentic side of the side of them that shows I'm human that I get that annulus to these things do happen. And so I feel like by showing that, it's like, Look, I'm not perfect, I've never been perfect, and there are people out there who I'm sure have had that situation happened to them. And if anything, I think it makes you more relatable. And it's okay to put yourself out and say, Hey, this does happen to everybody. Oh, my goodness, you can eat the same thing at the same time every single day and get a slightly different result. So, in that situation, it's part of life. Everybody goes through it. Stacey Simms 23:15 Before I really let you go, I had to laugh when you said blood sugar boss. Because when Benny was was little, I mean, he was diagnosed before he was two. So we had to use all these, like really kid friendly ways of talking to him about diabetes. And I remember when he was about four or five years old, we started talking to him about like, being the boss of diabetes, you know, and little kids like to boss stuff around. Little kids have no control over anything, right? Everybody tells them what to do and where to sit and when to wake up, or when to go to bed and what to eat. So they have no choices, and sort of get to be the boss of something was really cool for him. And then the flip side of that was I had to say to him, Look, if you were if you're not the boss of diabetes, it's going to become the boss of you. And it really worked for a long time to help us teach him and but it's so funny. I forgot all about that. Until you mentioned The name of your program. So thanks for bringing that memory back up. It wasn't something that I had remembered. But it's so important because if you don't take control over it, you mean, you have no choice, it will take control of you. Ben Tzeel 24:11 Absolutely. And that's, that's the whole goal here is like you said, you have to be the one that's saying, I am going to actively take control over this because otherwise your life is run by diabetes, whether you allow it because you allow it to you don't take back the power from it, and you don't say, this is my life, this is what I want to do. And if you don't actively make that decision, it's gonna make it for you. And you don't want someone else or something else. In this case, diabetes making that decision for you want to live life on your terms. So you need to make sure that you are a blood sugar boss. Stacey Simms 24:43 I love it. Well, thank you so much for joining me. Thanks for sharing the program all the best with it. Ben Tzeel 24:47 Oh, thank you so much. I'm just glad to be able to help more people in our community and I'm just thankful for the opportunity to chat with you as always, that's always an awesome time on here. Unknown Speaker 25:01 You're listening to diabetes connections Unknown Speaker 25:03 with Stacey Simms Stacey Simms 25:06 more information about Ben's program blood sugar boss in the show notes and I'll link up his Instagram account as well now I'm gonna have to go back and look now because I do get a kick out of the bonkers food that he posts like these big portions and you know wild desserts and things once in a while, but I'm thinking now he said that they had been eating at home and creating their own stuff since the stay at home order. And now I really want to take a look and see what they've been making because we've been cooking a ton I think just like everybody, right? But I haven't been baking or making desserts. My daughter I have an 18 year old daughter and she likes to bake and she's been making cookies and brownies and stuff like that, but I'm not getting creative when it comes to desserts. I like to eat desserts, but I'm not making at this point. I am barely making dinner. I am so sick of Okay. All right. Well, you know good problems to have, I suppose. The author of the book actually I can is our Tell me something good this week, but first Diabetes Connections is brought to you by Dexcom. And we've been using the Dexcom G6 since it came out two years ago now, and it's amazing. The G6 is now FDA permitted for no finger sticks for calibration and diabetes treatment decisions. You do that to our warmup and the number just pops up. I know it sounds funny if you're newer to Dexcom but we've been using it for seven years now. And when you're used to calibrating you know, and not getting that number automatically, it really does. It just seems so different. The G6 has longer sensor we're now 10 days and the new sensor applicator is so easy to use, but he does it all himself. Of course we love the alerts and alarms and we can set them however we want. If your glucose alerts and readings from the G6 do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions. To learn more, go to Diabetes, Connections comm and click on the Dexcom logo. Morgan Panzirer is our Tell me something good this week she was diagnosed With type one when she was six years old, that's obviously not the good part. She is now 19, a college student who would like to become a pediatric endocrinologist. Now her sister also lives with type one. Morgan started writing the book that we're going to talk about here in middle school. It's called actually I can, Morgan was great to talk to you. She was very patient with my questions and my ignorance about equestrian sports. Here's my interview with Morgan Panzirer. Morgan, thank you so much for spending a few minutes with me. I'm really excited to hear the stories behind the book. Thanks for coming on. Unknown Speaker 27:32 Yeah, of course. I'm so happy to be here. Unknown Speaker 27:34 What gave you the idea to write this book? Unknown Speaker 27:37 I started writing it in seventh grade for two main reasons. The first was I was fed up with all the misconceptions that people with type 1 diabetes hear every day, for example, Oh, you got diabetes, because you ate too much sugar things along those lines. So I decided that maybe if I could tell my story, I would be able to kind of change the way the general public views this disease. The second reason I wrote it was because I really wanted to empower others living with Type One Diabetes and show them. That doesn't have to be something that holds you back. Rather, you can use it as an opportunity to do whatever you want to do. So Unknown Speaker 28:14 you started writing in middle school, but you were diagnosed at age six, much younger than that. Do you remember your day? Your diagnosis story? Morgan Panzirer 28:21 Yes, I'll never forget. It is so clear in my mind. I had been drinking and peeing a lot. So my mom knew the signs of Type One Diabetes because she was a nutritionist. Yeah, so my mom knew the sign. So she decided to ask my pediatrician to test me just to humor her. She was sure it was nothing but she said, just test it anyway. So she did and a couple days later, my pediatrician called us I'll never forget exactly where we were in the car. And she said to my mom, I'm so sorry to tell you this, but Morgan does have type one diabetes, and my mom just immediately started crying. We were all shocked. We went to the Naomi berry Diabetes Center at Columbia the following day. And from there, it was just, let's get through this. Stacey Simms 29:07 So your mother was a little bit familiar with it, but in being a nutritionist, but I can't imagine you knew at all who you're in for, and especially at age six, Morgan Panzirer 29:15 no, I had no idea. And I vividly remember being in the car driving to New York City The following day, and saying to my parents, everything will be fine. As long as I don't need a shot. Little did I know, every day of my life, I was gonna have multiple needles among the finger sticks and other things. So my parents didn't really know how to explain it to me, and it was definitely a rude awakening for the next few days to come. When you started writing, did you share it with anybody else? Was it just for you at the time? Yes, it was just for me at the time. No one. I didn't really tell anyone about it. No one really knew that I was doing it at all. I was very private about it. But as the years went on, I eventually decided to tell my parents and they were like, you are What? So it was kind of fun. It was. It was a long process. But yeah, the beginning it was definitely just a very personal thing for me. And then your younger sister was diagnosed as well. What was that? Like? How old was she? How old were you at the time. So she was 13 when she was diagnosed, she's now 16. So I was 16 when she was diagnosed, and that just broke my heart because I had had diabetes at that point for 10 years. So I totally knew what it was like, and it made me think I would not wish it on anyone, especially someone in my own family. So to see her kind of struggle with it, and because she was diagnosed a lot older, I think it was hard for her to kind of get through it because she knew and remembered and understood what life was like prior. And now the fact that you have to make put so much thought into eating an apple, I think really kind of threw her for a loop, but I was really happy that I was there and could kind of show her the ropes and show her that this doesn't have to be the end It won't stop her. She doesn't want it too. Stacey Simms 31:02 It sounds like you have a really good relationship with your sister. But you know, it's gotta be hard to you know your sister. So I don't want to make it like it was a perfect relationship, but due to diabetes in some way for you closer, I mean, I kind of hate that because it's a cliche, but you to share it and experience that nobody else in your family could really understand in the way you were going through it. Morgan Panzirer 31:21 Yeah, it did. I would definitely say that it brought us closer. I mean, we always had a great relationship growing up. I mean, she was the only other girl in the house besides my mom. So we did everything together anyway. And we did have a really good relationship. But this definitely was something that I could share with her and I couldn't really relate to something like that with anyone else. So I think we, I mean, we don't talk about it a ton, but it is something that if I'm having a terrible day, I'm like, Oh, this stays the worst. And she's like, Yeah, I know what you mean. So I think in that way, it definitely makes it easier for sure. Unknown Speaker 31:57 Okay, so you grew up in a household where After your diagnosis, your parents jumped in with both feet for advocacy. And they jumped in in a way that is unique because your dad is a trustee of the Helmsley trust, which is a as you listen, if you're not familiar, just an unbelievable funder of so much Diabetes Research and so many diabetes advocacy causes and effect. We had your dad on the show last year, but he is a very passionate person, as you know, Morgan, where he was really talking about the need for better education when people get great diabetes devices. And you know, trying to help in that respect. What was it like to know that what happened to you affected what your parents did with their lives? I mean, there's put so much time and energy into this cause, Morgan Panzirer 32:39 oh my gosh, yeah, it was unbelievable. I mean, my dad became a trustee shortly after my diagnosis. So again, at six years old, I had no idea what that meant. But as I grew up and saw the impact he's having on this community and everyone with this disease, I'm so grateful that he went this way because I really do believe that he's making enormous differences in this community. I've already seen tons of new technologies that have come out, in part, thanks to his funding. So I'm so grateful. And my mom actually has she's a big runner. So she's run numerous half marathons and marathons with jdrf to raise money. So the fact that they're just all in for me and my sister is, there's no words to describe it. It's unbelievable. You've been able to do a lot of things yourself. You were a children's Congress with jdrf. That was in 2009. So how old were you when you did children's Congress? I was eight when I when was that something that was meaningful to you? Yeah, it was a really monumental event, I think because it really marked the beginning of my advocacy. And especially being that little I didn't really understand that I could make a difference prior to this. But when I got there and saw oh my gosh, all these kids are going through the same thing I'm going through and look at this difference we're making on a national level, I think it really showed me that I did have the ability to make a change if I wanted to, and if I set my mind to it. So it was definitely a big step for me and understanding that I had the ability to make a big change for everyone with this disease. And it definitely marks the beginning of my advocacy, as I mentioned prior. Unknown Speaker 34:19 So tell me about advocacy for an eight year old. I know because I just people listening are kind of thinking like, well, what else? You know, there's children's Congress vote what really can an eight year old do? Morgan Panzirer 34:27 It was crazy because we're at Children's Congress. We're talking to our senators. I didn't even know what a senator was. I was like, Who are you? Like, you seem really important, but I don't know what you do. Um, but it was really just a place for me to learn and understand and it opened a bunch of doors for not necessarily when I was eight years old still, but when I was older, it really just allowed me to understand, okay, I can do this and I can make a change and talk to these super important scary people. If I want to so I wouldn't say necessarily started my advocacy at eight years old, but it definitely opened that door and set that path or the years coming up. Stacey Simms 35:10 So in the book, actually, I can you mentioned, you know, sugar and misconceptions. Morgan Panzirer 35:15 Are there actually, as I say, actually, are there questions that that really have followed you that you would answer? Actually, I can. Oh, there's so many. It's funny, you should say that. Because one of the chapters towards the end of the book actually has a bunch of things that I've heard people say prior about this. And my answer to each of them is actually I can so that's really funny. You should bring that up. So yeah, it's all surrounding kind of the sugar aspect. And that always drove me crazy. Like, oh, you Sorry, you can't have this ice pop. It's not sugar free. And to that, I would say, Actually, I can. So it's really funny that you should bring that up. Stacey Simms 35:53 Well, I mean, it's something that I think many people with diabetes experience over and over again to the point where you have to decide Are you going to be annoyed and be sarcastic? Or say nothing? Or am I going to be annoyed and continue to educate? Right and that second one, even just as a parent of a child with type one, I try to choose the second one as often as I can, but it really does wear on you. So when I saw the name of your book, I was like, totally can relate. Morgan Panzirer 36:19 Yeah. Unknown Speaker 36:20 And you ride correct. That's your sport is, is I'm gonna say it incorrectly as horseback riding. Morgan Panzirer 36:26 Yes, that is my sport. How do I say that? What's the real sport? equestrian sports? Thank you, Unknown Speaker 36:33 bro. Unknown Speaker 36:35 I've not talked to somebody with type one who is you know, involved in equestrian sports. Can you tell us a little bit about how you go about doing that? I mean, because obviously, there's got to be equipment, requirements of the sport and concerns about a pump and a CGM. So Morgan Panzirer 36:50 what do you do? Absolutely. So I started writing actually right after my diagnosis, and at the beginning, it was fairly easy to manage my blood sugar's Because I was young and just doing beginner things, but as I got older and obviously I started wearing a CGM a little later I got a little more difficult because I was riding for longer I was doing more difficult things. So it became a game of trial and error to kind of find the balance of Okay, I need to cut back my Bazell this this much time prior to getting on and then afterwards, I should sip on a Gatorade. So it was a big game of trial and error that definitely got frustrating at times. But then the whole other battle was at horse shows because when you horse show, you're not allowed to have a phone or any sort of electronic device on you. So I'll never forget there was this one show I was competing in and I go in and I do my course. So I do the jumpers for anyone that knows. So I go in, I jump my course and I come out and the judge walkie talkie over to the end gate where you enter the ring and said she has to be disqualified because she has a phone on her and I was like I don't Promise you like, I'll show it to you. It's not a phone. So they ended up being understanding but after that I had to really be conscientious about prior to stepping in the ring, having the person that was managing the in gate radio over to the judge and say she's that does not have a phone. She's wearing an insulin pump. So that was something I found really interesting. Um, but yeah, it was it's definitely an interesting sport to have type one and do for sure. Well, Stacey Simms 38:28 you know, and obviously, you had to educate them and now hopefully the next time somebody comes through that way, they would know that a pump isn't a phone, but I'm curious too, you know, obviously writing horse is not driving a car, but it is one of the few sports where you're, you're not alone, right you have to stretch but work with me here. In a way you're you know, you're controlling the horse you're in charge, you have to be in your you have to have good enough diabetes control, that you know, if you're going low, you can Have you could have an accident you could get seriously injured for sure. Yeah. I mean, that's got to be something that I know your parents would be worried about. But as an athlete, it's it's a little bit more consequential in a way than like my son. He's played every kind of sport but if he goes low and basketball, he's probably you know, he's just gonna get himself off the court. He's he's not taking a horse Morgan Panzirer 39:21 Yeah, it's, it's interesting because there have definitely been times where I'm so invested in riding and what I'm doing that I don't even realize how low I am. So I really have to be careful and always be watching I wear my Apple Watch which is a huge help because I just clicked the Dexcom app and my blood sugar pops right up. So that's made it a lot easier but as you said, there's definitely an added component of stress because if something happens to me, I'm either a gonna fall off and get seriously hurt or be by horses going to be running around loose in the ring. So aren't really ideal circumstances. For sure, Stacey Simms 40:00 my apologies to you and anyone listening who is familiar with equestrian sports hearing me painfully make my way through trying to describe. But I appreciate it. Obviously, your parents have read the book, and they must be so proud of you. But was there anything in there that you thought? I don't know if I want my parents to read this? Are you? I mean, I know it's nothing terrible. But you know, in terms of, I think sometimes the people I've talked to with type one, are worried that they're going to make their parents worry more, even as adults, they just don't want their parents to worry. And I was curious if that went through your head at all, as you were releasing this book? Morgan Panzirer 40:35 Yeah, I mean, there's one chapter in particular that comes to mind where I'm just very raw about my emotions. And at home, I'm not someone who's like that. I'm very quiet. And if something's bothering me, I'll go to my room and deal with it there. So I think putting that all out on paper and having that kind of out to the world and then have my parents read it. I don't want to say I was hesitant, but it was it was interesting because I didn't really know how they were going to react to me being like, Oh, I broke down into tears because they don't usually see me do that very often. So I was, I was a little scared as to what they would think like, Oh, no, is she like crazy at our room? Like what is she doing all the time, but I think they just they were very understanding like, if this is how you want to deal with it, this is how you deal with it. You do whatever you need to do. Stacey Simms 41:25 When I was looking it up on Amazon earlier, I laughed because you know, Amazon has that if you bought this, you might buy that or, you know, bought and there was my book, there was the world's worst diabetes mom and a bunch of other great diabetes books too. But I laughed because I guess with the teenager in the parenting, maybe they put it together. You know, the world's worst diabetes mom is not about really being a terrible parent. It's about the insecurities that we as parents have when we make mistakes with our kids. I'm curious for you. It sounds like your parents gave you an awful lot of independence and had a lot of confidence in you and I Assume your sister as well. Any message for parents of kids with type one who think we're just messing up and we're the worst? Morgan Panzirer 42:07 You're not the worst, I can start by saying that. I think I would say try to give your child as much independence as possible without making it unsafe. My parents, as you said, gave me a ton of independence. And I think it worked really well for me, but it's also really different. So what works for me may not work for my sister. So you kind of have to be willing to cater to your child's needs and what you think will suit them best. But independence for me was key. Stacey Simms 42:36 And then I'll flip it around and say, okay, you're you're a college student. Now you're you're not you know, you're not quite done with being a teenager, but the high school experience is behind you. Any advice for teenagers? type one? Morgan Panzirer 42:47 Yeah, I would say teenage years are tough just because your peers are naturally a lot more judgmental than they are when they're adults. Do what you do. Don't hide anything. If they want to be jerks about it. Let them be jerks about it. That's their problem. And just don't let them get the best of you because I was bullied by freshman year of high school for wearing a CGM on my leg and was shorts on and things like that. So I would just say, don't let the haters hate who cares, they can do what they want. Unknown Speaker 43:18 And for you now, what are you studying? Did I read you want to be an endocrinologist? Morgan Panzirer 43:22 Yes, I am studying biology in Spanish on a pre med track. And I'm hoping to go to medical school for pediatric endocrinology. Did you have an endocrinologist growing up that inspired you? When did you realize you want to do something like this? It's funny, it was kind of the opposite. Hopefully, he's not listening right now. He wasn't bad by any means. But I just thought it would be really cool if I had an endocrinologist who also has type one who can relate to what I'm going through and make me feel like I'm not alone. So if I want that from my endocrinologist, I want to be able to give that to others. So I'm hoping that eventually, if I make it through med school, I'll be able to give that experience to younger children who are also fighting type one. That's great. And then someday you could do the next book, which is actually you can Exactly. Stacey Simms 44:18 Work it. Thank you so much for talking with me. often don't hear about those teen years and growing up with type one until people are adults, so I can't thank you enough for sharing your story. I really wish you the very best with this. Morgan Panzirer 44:28 Of course, thank you so much for having me. Stacey Simms 44:33 I will link up more information about Morgan's book, just go to Diabetes connections.com click on the episode homepage. As usual, there's also a episode transcription. I started doing that in January of 2020 of this year, we're slowly going back the catalog I'll probably put the transcripts in for past shows as well. But you know, there's a lot of shows we're up to episode This is 310 if you're keeping track so I'm doing the best I can with transcriptions but 2020 and going forward getting great feedback on that. And thank you, I really appreciate hearing from you. If there's something that you really like or don't like with the show, and the transcriptions have been a big hit, people listen to the show people read the show, and some people listen while they read the show. However, I can serve you That is what I'm here for. And I'm kind of laughing. But really, that's one of the reasons why I wanted to add the transcriptions. I think there's some excellent information. It's not about me, it's about the information and if you can read it, I know some people just prefer that. So very cool. Thanks again. And, you know, when you go to Amazon, and you see, it just makes me laugh, right? The you see Morgan's book with my book. I don't know why it makes me laugh. I mean, I'm a serious author now. But I do get a kick out of serious author (laughs). I do get a kick out of seeing people I know or have met, along with my book. It's just really a lot of fun. I don't know. Maybe it's silly, but I really get a kick out of it. All right, great month of shows coming up. I'm very excited about July because we're going to be talking about selecting an insulin pump, not which pump is best, but how do you select one that's like the number one Question all these Facebook groups? What pumps should I get? What pumps Should I get my kid? We're also gonna be talking about pancreas transplant. I've wanted to talk to somebody who had a pancreas transplant for years and years because you hear you know how difficult it is or how does it even happen. And so we've done that and I'm really thrilled to share that interview with you in the coming weeks. And of course, the fiscal would squares. That chaotic show will be out soon as well. So lots of good stuff coming up. More on the way. Thank you to my editor, chunky tennis solutions. And thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, kind to yourself. Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged Transcribed by https://otter.ai
Diabetes camp is looking very different this summer as almost every program has shifted to a virtual experience. We talk to the people behind Clara Barton Camp, one of the oldest and well-established D-Camps in the country. Sam Stevens was diagnosed at age 5 and went to Clara Barton that very summer. She says she basically grew up there, becoming a counselor and now a volunteer helping coordinate their very first virtual experience. Check out Stacey's new book: The World's Worst Diabetes Mom! In Tell Me Something Good, an Emmy and an incredible story of perseverance and survival around COVID 19. Join the Diabetes Connections Facebook Group! This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Sign up for our newsletter here Follow WMTW News Anchor Cristina Frank Read about COVID 19 survivor Kimberly Ishoy Find out more about NRG Bites! Use promo code "SIMMS" to save 20% ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription coming soon
Tandem presented new studies at the recent ADA conference and got approval for some of the youngest people with diabetes to use their newest tech. Steph Habif is Tandem’s Senior Director of Behavioral Sciences. She shares what those studies found, gives us more information about Control IQ and touches on what products are up next for the company. Check out Stacey's new book: The World's Worst Diabetes Mom! Listen to our previous episodes with Tandem Diabetes In Tell Me Something Good, great news about college scholarships for students with type 1. Diabetes Scholars info here Join the Diabetes Connections Facebook Group! This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcript: Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes and by Dexcom , take control of your diabetes and live life to the fullest with Dexcom . Announcer 0:16 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:22 This week, Tandem presented new studies at the recent ADA conference and got approval for some of the youngest people with diabetes to use their newest technology. But Tandem is also keeping a close eye on including many more people in future studies. Steph Habif 0:37 It's a shared responsibility across many communities to figure out how to make it easier for different types of people to be included in this research. Stacey Simms 0:48 That's Steph Habif, Tandem’s Senior Director of Behavioral Sciences. We'll talk more about what communities she means there and why Tandem wants to reach out more. And of course, we talked about Control IQ And what's next for Tandem? In Tell me something good great news about college scholarships for students with type one. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of Diabetes Connections. I am so glad to have you along. I am your host Stacey Simms. We aim to educate and inspire about diabetes by sharing stories of connection. This time of year we are sharing a lot of stories about technology and studies and that is because the American Diabetes Association Scientific Sessions conference has recently concluded so every year at this time, there's new information. Sometimes it is also timed with FDA approvals like we saw last week with the Libre 2 and with Tandems approval that we're going to talk about for the Control IQ software to be used down to age six. It means a lot of information. It means some bonus episodes, it means some playing with the schedule. Because just trying to get this information out in podcast form can be a little bit more difficult. But you know, that's what I am here for what I love to do If you're new, my son was diagnosed with Type One Diabetes right before he turned to my husband lives with type two diabetes. I don't have diabetes, I have a background in broadcasting and local radio and television news. And that's how you get this podcast. And just a quick note about my son Benny, I realized the other day, so we're 13 and a half years in with type one, which means we're coming up July 4 which his 13 year anniversary of wearing an insulin pump, which I cannot believe and I remember it like it was yesterday. So I'm going to maybe do an episode or talk about that in another episode, looking back on what's changed and you know how to pick an insulin pump and all that kind of stuff, but oh my gosh, oh, I can't believe he's 15. Speaking of Benny, the world's worst diabetes mom is now available in more places. My publisher reached out to me. We are now sold online at Target and Barnes and Noble and pretty much expanding to every place You can buy a book online, I didn't realize this was a thing that we started on Amazon and now we are elsewhere, which shows that it's a good thing that I have these people to help me out. But it's also available in library form. And I'm still investigating this. So as you listen, if you get ebooks, that's the library form, it would have to be an E book, you know, Kindle or something like that. If you have a service that gets you library books, check it out, let me know where it is. Because I haven't been able to exactly track that down with COVID. I think there's some issues. I'm trying to get the hardcopy into libraries too. So that's something that you could really help me out with. And I have to give a big shout out to Molly Cooper. Molly lives in the UK. She sent me a message that she really enjoyed the book. It was so nice of her to reach out like that. So of course, I asked her a little bit about it. You know, I have some UK readers, but I'm interested in the process. There's a different Amazon site for different countries. So I was just interested in how it all worked. And then she posted in one of the diabetes parenting Facebook groups that she belonged in, and oh my god. Molly, thank you so much. A bunch of people talked about the book. And it was such a nice thing for you to do. So if you've read and enjoyed the world's worst diabetes Mom, I always ask please leave a review on Amazon that helps us so much when people are looking to see if they want to buy the book or get the book. But if you could also post in your Facebook group or on your timeline about it and tag me, but it would be so helpful to spread the word because let's face it, this isn't gonna show up in the New York Times Review of Books, right we have the community to spread the word and it may be immodest to say but I do think it's a book that can help people it's not just our story. There's a lot of advice in there and a lot of learning that I did over the years, I believe very much in it and I really appreciate those of you who are already spreading the word if you're ready and you don't like it forget you know me! In just a moment I'm going to be talking to Tandem’s, Steph Habif about Control IQ, new studies and lots more. But first diabetes Connections is brought to you by a One Drop and getting diabetes supplies. It's a pain let's face it. Not only the ordering the people up the arguing with insurance over what they say you need and what you really need. Make it easy with One Drop. They have our personalized tester plans, plus you get a Bluetooth glucose meter test strips lancets and your very own certified diabetes coach. Subscribe today to get test strips for less than $20 a month delivered right to your door. No prescriptions no co pays required. One less thing to worry about. not that surprising when you learn the founder of One Drop lips with type one, they get it One Drop gorgeous gear supplies delivered to your door 24 seven access to your certified diabetes coach learn more go to Diabetes connections.com and click on the One Drop logo. My guest this week is Steph Habif. She is the Senior Director of Behavioral Sciences at Tandem which means she really advocates for the people who use the technology. She presented some of the studies we're gonna be talking about at ADA and of course has presented elsewhere and a quick note if you are new to the show, we use The Tandem system. They're not a sponsor of the show, but I know I am biased toward Tandem. So I want to make that disclosure. First thing I just love the way it works. Look, it's not perfect nothing is but we have been using Tandem for three years now. We switched from Animas insulin pump in August of 2017, just as the Dexcom G 5 update was approved for for Tandem. So basically we got a pump and then we immediately updated the software. We have done two other updates the basal IQ last year and we went to Control IQ in late January pretty much just as it hit the market. I can't believe it has been six months already. So well. I don't think that influenced the actual questions I'm asking. It certainly influences how I feel about the system. So here is my interview with Tandems, Steph Habif. Steph, thank you for joining me. I'm so excited to talk about Tandem and learn more. Thanks for being here. Steph Habif 6:55 Thanks for having me. I've been a listener of yours for a while so it's a real pleasure. Thank you very much Stacey Simms 7:02 this year's ADA very different may start by just asking you what that was like for you to to present and have to do everything virtually. Steph Habif 7:08 Yeah, it was definitely, I think unique and interesting experience for a lot of us especially people who regularly attend the ADA each year. And I'm not gonna lie. My favorite part about the event is getting to see people and kind of have very energized Creative Conversations together in person, I think a lot of brainstorming and some of the best ideas, birth from, you know, getting together with kids from all over the world at meetings like that. So that part was kind of missing, obviously this year. But given what's happening in the world, I think it was put on fabulously well produced really, really nicely. The excitement leading up to the conference was there that was a part of my experience this year for sure, like every year, and then it all happens through email and chat and tech So my eyes hurt. At the end of the conference, I think my eyesight has taken a little bit of a hit in the past couple months, like a lot of other people. But there was some very exciting information that got presented. Stacey Simms 8:12 Yeah, let's talk about some of that. We've talked about Control IQ in depth before its launch or right as it was launched. Tell us about some of the presentations here. I know one of them was Control IQ in the real world, the first 30 days. Tell me about that. Steph Habif 8:29 Yeah, so that was a proud moment for me and my team, the scientific posters that we presented at this year's ADA. I think one of the people you have had on your podcast to talk about Control IQ is Molly Malloy and she's on my team here at Tandem, we get to work together. She was one of the researchers whose name was on these presentations at ADA and the first 30 days. That was really our first look under the hood, so to speak. So one of the things that my team here at Tandem is responsible for is post market surveillance and user experience research. Meaning once the FDA approves or clears a medical device, like the T slim X2 and people start using it in their everyday lives, the job of my team is to observe, measure, learn, how's that going for people? whether it has to do with their glycemic outcomes, like time and range, or quality of life, things like how's your sleep? Those are all the things that we're responsible for researching and studying. Now, what we did for a DEA was we didn't have very much time with Control IQ in the market before the ADA deadline presented itself. So Control IQ came to the US market starting mid January, and we had to have all of our materials submitted to ADA by the second week of March, so not a lot of time. So like I said, sort of first look Under the hood, meaning we went into our databases into our T Connect web application, back end systems, and we use some research methodologies to kind of see how it was going for people. What sort of glycemic trends and outcomes were we seeing for the early adopters right out of the gate, and we specifically focused on folks who software updated. So I think Benny's a software updater - he was on Basal IQ leading up to Control IQ. And how old is Benny? Again? He's 15. So he was probably included in our analysis. Absolutely. So sorry, no. Yeah, so anybody who was age 14 or older and had at least 21 days of use on control, IQ technology, leading up to march 11, was included in this analysis. So Stacey Simms 10:52 he was he was definitely in there. And you would have seen a great response. I don't mind telling you. Steph Habif 10:56 Yeah, so this information that we presented at ADA Like I said, we didn't have that much time. So really data mining to look at glycemic outcomes. So it was a retrospective data analysis exercise, essentially, which is a very common thing to do when it's your first look at sort of what's happening in the real world. And we were really pleased to discover that overall real world users are experiencing an increase in time and range of 10%. Before updating to Control IQ. The folks in this study had a time in range of about 68%. And throughout their first 30 days on controlling IQ, they experienced an increase to get that overall time and range metric to 78%. And what's exciting about that is that 10% jump matches what we saw in our control, IQ clinical trial. Stacey Simms 11:53 Did you have any data about ease of use? In other words, do people continuously use it? Did people have sensor issues? If you have have problems figuring out how to adjust anything I know it's it's tough to glean in such a short time. I'm just curious if you learned anything else. Steph Habif 12:06 So for the purpose of what we presented at ADA, we kind of kept it really simple. Again, because we didn't have very much time we mined data we we worked with what was available to us. And so we really focused on things like changes in time and range hyperglycemia hypoglycemia, and we didn't for the purposes of what was presented at ADA, talk about quality of life, things like sleep improvement, but what we do know is that for the folks who were included in this analysis, overall, they experienced the percent of time in closed loop automation was 96%. And that's really exciting. Now for the Control IQ technology system. The only reason a user isn't in automation is if they lose connection with their CGM for 20 or more minutes, that's it. And then once CGM is reconnected automatically, you're back in that automation close loop. So that's really elegant and simple. And that came through in these metrics that we presented at ADA. Stacey Simms 13:17 Yeah. So that's interesting. I mean, not to jump to a conclusion. But let me just make sure I'm hearing you right. So we can pretty much conclude if 96% of people using Control IQ, excuse me, if people using Control IQ stayed using it 96% of the time in automation. That means that their sensors were working that things were chugging along just as they should. Steph Habif 13:35 Yes. And thank you for bringing that up. So we have some consensus guidelines on data integrity for this type of research. When you're doing real world research like this, the guideline is for the purposes of data integrity, to include CGM rates that are 70 to 75% or above. So what that means is in our analyses for the ADA we included people who had at least 75% CGM connectivity over that 60 day period. Now in the clinical trial for Control IQ, the investigators reported CGM connectivity in the high 90s. That was a way that we could sort of control for that variable given that we were doing a retrospective data analysis, if that makes sense. Stacey Simms 14:27 Yeah, it does. Because it's really important. And you know, this people in the diabetes community, there's separate issues here, right? There's Control IQ. There's the Tandem pump, but there's the Dexcom sensors, which Listen, it's not a Dexcom interview here. But we've talked a lot on this podcast about people who just have trouble with the sensors, and sensor failures and things. So I'm glad to hear you clarify because I'll be honest, that 96% number didn't really sound real world to me, but it makes a lot more sense when you understand that it's already looking at people who have good sensor luck. I don't know what to call it. Good sensor usage or It lasts. Unknown Speaker 15:01 Connectivity. Stacey Simms 15:03 Yes, connectivity, that’s what I was looking for. Yeah, that makes a lot more sense. There was another study, if I'm reading this correctly about people with type one and type two, use the Control IQ. I didn't know anybody was type two was was really using it. Can you speak to that? Steph Habif 15:16 Yeah, that's pretty cool. So it turns out we have a fairly present segment of our customer base that have insulin dependent type two diabetes. And so again, first look under the hood, we sort of sat there and we were curious, and we said, well, we have some people who are updating software updating to Control IQ who report that they have type two diabetes, I wonder if they're experiencing things differently than folks with Type One Diabetes. And it turns out that both people with type one and type two diabetes are experiencing significant improvements in time and range with use of Control IQ. So the second publication that we presented at ADA was looking at glycine outcomes type one versus type two. Now you've heard me say that folks with type one in our analyses experienced a nine or 10% increase in time and range as a result of their software update. And for folks with type two, that was a 6% increase in time and range. But here's the really cool part, the analysis that we did for looking at the difference between type one and type two, we required a minimum of 14 days of use leading up to the software update, and then 14 days of use after the software update, which is half the amount of time from our first analyses. And so what that means is by seeing that our folks with type one got to a 9% improvement in time arrange, it means that those improvements are happening really quickly, right after the software update. Stacey Simms 16:46 That's really interesting. I want a little dig a little deeper into some of these studies. But I also want to kind of do some bullet points here. So let's talk about Control IQ okayed for young children, because I just happened. Yeah, can you speak to what those studies found? Was there anything different or anything parents of children down to the age of six now should be thinking about anything different? Steph Habif 17:06 I don't really think so. We recently, just a couple days ago, got our FDA clearance for the pediatric indication for Control IQ for children's six year old Jr. Before then it was previously approved for ages 14 and older. We know investigators have been doing research and even younger populations. But right now we're only approved down to age six. And what the clinical trial that focused on ages six to 13 using Control IQ saw was the sensor timing range increase to 67% from 53%. compared to those in the control group, and overnight children using Control IQ technology in the same study state and range an average of 80% of the time, those glycaemic outcomes match what we're seeing in the real world with a slightly older group, and so it's looking very consistent. So far across the board, Stacey Simms 18:02 one of the things I wanted to ask you about these studies and in Tandem isn't the only one who does this. It looks to me like a lot of the automated studies that I'm reading from Insulet, Medtronic and some of the other companies, was that 68% in range number that you mentioned, like the people who started when from 68 to 78, which is fantastic. But we know that so many people with diabetes have like 30%, time in range, right? They need this technology so badly. And I'm wondering, can you just speak to that in terms of I don't know why the studies, and I was glad to hear the kids study was 53% to 67%. That seems a little bit more realistic to me. I mean, God forbid you study teens. What, you know why? Why do you? Why do most of these studies take people who frankly, have relatively decent control, right, we're talking about the whole sphere of diabetes, that just people who have great technology, I would think you'd want somebody who's got an A1C of 10 and you can say, look, we knocked them down to six. Steph Habif 18:55 That is a great question and you are speaking my language. I'm so thrilled To hear you ask that question. That was actually one of the biggest themes to emerge from this year's ADA. And it certainly isn't a new theme, but it was a very prominent theme this year. The call for more diversity in research studies diversity, whether it has to do with baseline A1C or baseline time and range where somebody lives. There was a really exciting study presented at the ADA by researchers in New York who looked at inner city urban teenagers onboarding to the T slim x two with Basal IQ. And that was very cool to see. And so you're absolutely right. It is on us as researchers, as scientists, as clinicians to figure out how to be more inclusive in this type of research. And that's certainly one of our goals here at Tandem. Stacey Simms 19:49 It's interesting because I thought you were going to say, I don't know I thought it was going to be more on the medical side of it. So in other words, is it more of a question and I'm pardon my ignorance here because I wasn't really even sure what I was. Asking there. Is it just harder to find people to be in these studies? Or is it the study criteria that excludes people? Steph Habif 20:07 So at Tandem, we try to have the most inclusive criteria that we possibly can for this year's ADA, again, because we had such a short amount of time, and we really only could take quote, unquote, the first look under the hood, we had to work with the data that was available. When you consider early adopters of any technology really, but certainly early adopters of Control IQ technology, like you said, a lot of those folks were already doing pretty well, especially because most of them were on T slim x two with basal IQ leading up to their Control IQ technology update. It's a loaded question, you know, why isn't there more diversity in this type of research? And there's no one simple answer to that question. I think it's a shared responsibility across many communities to figure out how to make it easier for them. Different types of people to be included in this research. So I think the medical community, the research community, the scientific community and the diabetes community sort of at large, we just need to be better about being more inclusive. Stacey Simms 21:13 Well, and I think it's very easy. Once you set the parameter that you looked at people who are early adopters, we know who those early adopters were there us, there are people who listen to podcasts, there are people who are super educated, they went for the portal before the email came to them. So it's a it's a very self selected group of highly educated people. So I'm not being critical. I get it. It's just Gosh, like I said, I'd love to see what happens when you start people who have a very high A1C and don't have a lot of time and don't have a lot of perhaps access to get a technology like this and see what it can do. Because, you know, I'm such a cheerleader. Listen, my bias is showing, but my son has always been in very good health with diabetes. We've been very lucky. You probably know we don't share numbers, but we're on track to have probably his lowest A1C ever and he has never done less work. It's amazing. So I just hope everybody gets a technology like this. Steph Habif 22:05 Yeah, you know, the psychologist and behavioral scientist in me is just thrilled to hear you say that. I mean, for somebody like me who has studied social science her entire career and has also worked in health technology and medical technology, my entire career, I like to say that my purpose professionally is to advocate for the humans using the machines. And so I want the science to be able to tell the most insightful stories, whether powerful stories like one you're experiencing with Benny, where he's having to do less and less work but experience better and better outcomes, or whether it has to do with, you know, somehow shining a light on underserved populations who could be the greatest beneficiaries of this type of technology, and how can we make that happen? So all of that, to me is very exciting. Stacey Simms 22:56 It's gonna be fascinating for somebody with your background to work in this field, where the mental side of diabetes is just as important. The Human Factors on pumps. It's, we could talk all day. Steph Habif 23:05 Absolutely, yeah. So the easiest way to think about it for in terms of what I do and my team's do here at Tandem is, as you know, the FDA requires very rigorous Human Factors testing in order to submit and receive clearance on a medical device. And so my teams do all of the usability and Human Factors testing prior to our FDA submissions. And then other parts of my teams are the psychologists and the social scientists responsible for doing all the work to understand how the machines are functioning and the everyday lives of everyday users. I feel very blessed to be able to do that for work. Stacey Simms 23:39 So moving to, you know, heaven forbid, we left to let you rest on your laurels at all moving ahead to what may be next. We know that COVID-19 has delayed a lot of things, you know, in all medical fields, but can we ask about the T sport and the Tandem mobile app? Can you talk about where those are right now? Steph Habif 23:57 Of course you can ask. So a lot of you know We have a new insulin pump system that we're working to bring to market next year, we typically refer to it as the T sport. That's our internal project name for it. That's what we've kind of affectionately been calling it while it's been in development. It's about half the size of the T slim x two. It's being designed to be controlled either entirely by a mobile app or by an independent controller. And you're right due to the current COVID-19 environment. We have had some delays in some of our human factors testing. Because the data is required for our regulatory filings. The target submission timing for the tee sport will be pushed out until protective government restrictions are lifted. And because I am the person that oversees our human factors team, let me just say that trying to plan and carry out to actors testing during a pandemic is one of the most unique challenges of my career. And I know for anybody out there who's attempted to plan anything right now it's been particularly difficult. Unknown Speaker 25:04 Before we go on, do you believe the Tsport will have a different name when it launches? Unknown Speaker 25:08 Oh, Stacey Simms 25:10 I won't hold you to it. It's just the first time I've heard somebody say that. Like with Omnipod, you know, they said, Oh is Omnipod horizon? And they said, No, it's Omnipod five. Yeah. Sometimes we sometimes we find ourselves getting ahead, right. We're ahead of marketing. We're ahead of labeling we we follow these projects. So early that we kind of assigned we as a community assign names to things that don't even have a name yet, right? Steph Habif Yeah, I am not a betting woman. And so I would be afraid to put money down on what t sport is officially going to be called when it gets commercialized. Stacey Simms Alright, fair enough. Fair enough. We'll just know that that's the working title. And then the mobile app. I know there's some people beta testing the phone app, which is more of a observant app, you look at things you can't do anything really yet. Is that the same timeline as the tee sport, whatever that timeline turns out to be? Steph Habif 25:58 No, the mobile app is happening on In a different timeline. So we're developing a mobile app platform that is the foundation of our digital health strategy. The first generation of the app had a beta launch in the first quarter of 2020. And it will be rolled out more broadly in the upcoming weeks. So the first generation of the app will include remote data uploads so that patients can send their hcps important pump data without an office visit. We know that right now we've kind of been forced into this telehealth world. So that's going to be a really critical part of the user experience. And future iterations of the app will include remote bolus capability due to COVID. For sure. We've had some delays in human factors testing on the remote bolus features. And again, because data is required for our regulatory filings, we have to work with that the best we possibly can. Stacey Simms 26:48 I'm so excited about that. I mean, obviously, the idea of bolusing from the phone seemed like the holy grail for a long time, but that is exactly what you're saying. right that the idea here is that you would take out your phone, bolus using pump, you'd be able to control it from your phone. That's right. I give you the impression. I want to talk to you much more about that. Steph Habif 27:09 You know, it's, I will say, being a scientist who's in charge of doing all of the research makes me an interesting candidate for a podcast interview. Stacey Simms 27:20 All right. Well, I have so here's a question for you. And again, no answers a fair answer. I'm curious. When you you start doing things like that. The remote monitoring capability of the Dexcom , obviously, has been very, very popular. I'm curious if I wouldn't expect to bolus my son from my phone. Right? You wouldn't expect a caregiver to be able to do something like that. But what a caregiver be able to see more about the pump? Will there be more information available to people who want to, let's say follow, I don't know what kind of language we'll be using, like the pump battery, the insulin onboard, all of that kind of stuff. Will that be Steph Habif 27:54 available? Yeah. So that's a great question. So follow capabilities through a mobile app. is certainly a part of our product roadmap, there are plans underway for that. I can't speak to when that would come to the market specifically, but it is being worked on. Stacey Simms 28:11 Okay. And one more thing if you can't answer this is fine too. Would it be possible I'm just thinking out loud when my son was was younger and we did do everything for him? If like I could use you could designate like, this is the bolus phone, and it wouldn't necessarily be the phone that's with the kid. Steph Habif 28:25 Great question. You know, cybersecurity is such a critical consideration in this land of remote anything. I can't tell you one way or the other, whether or not you as the parent would be able to use your smartphone to bolus you know from your son's pump. We'll have to wait and see what the FDA decides in the land of you know, security and safety and cybersecurity. For sure. Right now we're focusing on doing the necessary Human Factors testing for enabling the pump wearer to be able to use his or her smartphone Stacey Simms 29:00 I'm trying to keep track of the timeline here. So forgive me for clinical trials underway for the T sport yet, Steph Habif 29:06 right. So for the T sport project, we are not yet doing active clinical trials. But as many of you know, being a medical device company, we have a robust r&d department, and our engineers are experimenting on a regular basis. Stacey Simms 29:22 Ooh, sounds intriguing. You should do all of your studies in Charlotte, North Carolina, you should include 15 year old boys. Yeah, let's move on. Do you know this isn't really your department, a bunch of my listeners had questions about insurance. And a lot of insurers were making noise a few years ago about only going with one pump company. And of course, the big one was United Health and Medtronic does tend to make any progress in that, you know, that deal. Right? So like Steph Habif 29:53 what you said is true. It's not my department. So we don't provide individual payer updates, but we We believe having continued positive data on our technology, like what we presented at the ADA helps with all of our payer discussions. Stacey Simms 30:08 So I would say to paraphrase that Tandem is not going to give up on working with as many insurance companies as possible. Steph Habif 30:14 That is correct. We believe in doing whatever we can to create access for as many people in the world as possible. Stacey Simms 30:21 another bit of news that came out right around ADA was FDA approval of Libre 2 and you all have had an agreement already with Abbott. I don't I don't know the parameters of the agreement. I don't think there's a lot of public the timeline or how it will work. Can you speak to anything about that about how sometime in the future I suppose the Libre will work with a Tandem pump? Steph Habif 30:42 Yes, so Abbott and Tandem share a common goal to provide people with new ways to manage their diabetes that can integrate easily into their daily lives. The interoperability landscape is is very promising in Tandem is working with Abbott on an agreement to integrate a future generation of their glucose sensing technology with our insulin pumps. We haven't announced a timeline for the completion of the agreement, but we're working on it. Stacey Simms 31:08 so dumb question because I always get confused with interoperability. Would this be a situation where I flip a switch on my pump and one week, I could use a Dexcom sensor and the next week, I could use a Libra sensor. Steph Habif 31:17 I think for some people, that is what the vision is, like, I think we're all playing an active role right now in forming what this interoperable landscape could be. But conceptually, the idea is you could mix and match your technologies and they would be able to speak to one another. Now, that requires business agreements between the companies as well. So don't forget that part because that's an important part. Stacey Simms 31:42 Yeah, yeah. Yeah, let's keep dreaming. Let's forget. So what are you studying? Now? Obviously, this isn't the end of the studies on Control IQ or Tandem products. Can you give us a glimpse into what what you're looking at in the next couple of months? Steph Habif 31:55 Yeah, sure. Well, as you know, we currently offer the TCM x two with basal IQ technology and Control IQ technology. We had some pretty exciting research debut at the ADA on basal IQ in that we followed folks who on boarded to basal IQ during their first six months on basal IQ. And that was what we call a prospective study, meaning we were able to follow people in real time over the course of several months to see how it was going for them. The research we presented at ADA related to that specifically focused on self reported severe hypoglycemia episodes, and we were thrilled to tell the world that basal IQ is doing a phenomenal job of decreasing adverse events related to severe hypoglycemia. So basically, like he's seemingly doing a very good job at keeping users safe. And you know, safety is always at the top of our priority list. So as we continue to see more people take on Control IQ technology if they choose to do that. We will Do these long term studies where we follow people if they opt in and want us to, we'll follow them while they onboard to and get to know and continue to use Control IQ technology so that we can learn from them. Again, not just the glycemic outcomes, things like time and range and hypoglycemia, but sleep quality, or other things like is it a hassle to use? Is it making your life better? One of the things that I'll never forget is a couple months after phase like q hit the market, I had the chance to briefly talk with a father who had a 16 year old daughter, and she had been on basal IQ for about six weeks. And he looked at me and he said, this is the most under promised, over delivered diabetes technology Our family has ever experienced. And I said wow, tell me more about that. And he said, We're finally sleeping. You know, we can sleep through the night. And you know, sleep is a precursor to everything for everybody. So we're going to be doing a lot more research on the sleep front to see how we can be better continue to improve sleep quality for people with diabetes. That's a very big topic of interest for us. Stacey Simms 34:19 I'm curious to if you're looking at how people on board and adjust to Control IQ, because most people and again, we're biased because we think we're very well educated, right? When we were in Facebook groups, we talked to each other. Most people kind of went through the training, talk to their endo and then did all the troubleshooting themselves over the first two to three weeks. We're experiencing lows we didn't experience before so we decreased bezel or we increased ISF or whatever, whenever people had to adjust. Are you following like common practices to find out how to better teach? Okay, I'm sorry, we are Steph Habif 34:51 we are and in fact, next week we're putting on a couple of webinars specifically for healthcare providers first because it's We've been hearing from them even before we launched into market when we started training healthcare providers on the control acute technology system. We have some best practices now to share now that it's been out there for a couple of months. And we've been able to connect some dots. We'll be putting on several webinars next week for health care providers, where we'll be talking about these best practices and tips and tricks. And we know that not just health care providers, but users and their family members want to be able to ask these questions, too. So I think Molly told me that maybe she'll be getting together with you again, Stacy for a future podcast. Stacey Simms 35:36 Yes. So I'm going to be asking her all of these questions. As the webinar we can kind of see what the what the research shows people with right we're gonna be doing another episode in the near future about best practices. That's great. Steph Habif 35:46 Yes. And so Molly's just such a great person to talk with about that. But for sure, I'll send you the information on the webinars next week. If you want to chime in and watch they'll be recorded as well. And we are starting to roll out all of that message. Now, Stacey Simms 36:00 oh my gosh, that's wonderful. Because I gotta tell you, we laughed. We got ours so early, like I said, who waited for the email? Right? We just logged into the portal that my son's endocrinologist said, Hey, let me know what you've learned. Let me know how you adjust. Steph Habif 36:15 Yeah, that's true. That's true for my family members as well. So one of my niece's has type one, and she's now I think, gosh, almost 12 that blows my mind 11 or 12. I can't believe it. And her dad reminds me on a regular basis that she teaches him, you know, about how to use the pump, and how to use the technology. And I've heard that from other families as well, like, well, we went to our endo appointment, and I'll say, How was it? Well, we taught her a lot, you know, we were able to teach her a lot. Stacey Simms 36:47 It's so funny. Well, it's also new. It's it's amazing to realize that we're all kind of doing this together. Steph Habif 36:52 The energy and enthusiasm for good that is in the diabetes community is so special and so unique. And so I feel very lucky to be a part of it and to play some small role in trying to make it better for everybody. Stacey Simms 37:07 I can't thank you enough for jumping on. As I said, I'm kind of a fan. So I don't think this was an unbiased interview. But your information is fantastic. And I thank you so much for jumping on and sharing some of it with us. Thank you so much stuff. Steph Habif 37:19 Absolutely. And I look forward to continuing to listen to hear how other people you know, share their experiences and tell Benny to keep us informed. Unknown Speaker 37:30 No doubt Unknown Speaker 37:36 you're listening to diabetes connections with Stacey Simms. Stacey Simms 37:42 More information at Diabetes connections.com. The episode homepage always has the transcript and other links that you may need. And I will link up our last episode with Tandem there as well which was all about the launch of Control IQ. And as Steph mentioned, we're going to be talking to Molly Malloy and Others from Tandem. I'm in discussions with them this they've already agreed. It's just a question of scheduling, about getting someone to talk about best practices and other questions. You had so many questions for Tandem, that are more mechanical about how Control IQ works, that we want to do a second interview and really dig into the nitty gritty right, how do I know whether I need to adjust Bazell? How do I know whether it's the carb ratio issue and a bunch of questions of what you'd like to see in the next iteration of Control IQ. So that is coming. Thank you for your patience. But it's always interesting, right to get a high level view of what's going on in these companies, and to try to look at the timeline as best we can. So that was really interesting that the reminders Steph gave me about how we do kind of get ahead of the curve around here, you know, not just on this podcast, but those of us who are engaged enough to be in Facebook groups and be on conference calls and listen to the investor calls these companies make and feel like we are familiar with the language and the labeling before it's even submitted to the FDA. So I'm in interested to see if the name of the T sport does change. Frankly, I really like it. But hey, that's I'm not in their marketing department. So we'll see. Okay, tell me something good coming up in just a moment. But first, do you know about Dexcom clarity, it is their diabetes management software. And for a long time, I really thought it was just something our endo used, right? It was something we went there and he looked at it, but you can use it on the desktop or as an app on your phone. And it is an easy way to keep track of the big picture. I check it about once a week. Well, to be honest with you, I check it more now ever since we flipped over to Control IQ. I really like to look at it because and I noticed a psychological, right because it gets better and better. But it really does help me and Benny dial back and sees longer term trends. And it does help me not overreact to what happened for just one day, or even just one hour. The overlay reports help context to Benny's glucose levels and patterns. And then you can share the reports with your care team which makes appointments a lot more productive and it was essential for a remote appointment that we have Back in March, it was amazing. managing diabetes is not easy, but I feel like we have one of the very best CGM systems working for us Find out more at Diabetes connections.com and click on the Dexcom logo. Tell me something good this week all about diabetes scholars, we talked about this, I try to let you know when it opens up. This is something that comes from Beyond Type 1 and they give more than 50 scholarships to students living with Type One Diabetes. So it's a combined $250,000. And these are for students who are in the high school class of 2020. entering their first year of college. This was a record number of scholarships for the organization. So a little bit about the kids 54 outstanding students representing 26 different states. They are advocates, student athletes, scientists, writers, actors, mathematicians, and leaders. Each of them of course lives with Type One, two beedis there is a list of the diabetes scholars class of 2020 that I will link up so you can peruse and see all these fantastic students who aren't going to change the world as they head off to college at a very uncertain time. Oh my goodness. And these are significant scholarships, they range from $1,000 for individuals to $5,000. If you have a student who is in high school, and you want to check this out, I will also link up how to enter they do not open again until January. And I should mention that diabetes scholars was an independent organization for a long time. But when it kind of seemed like it for I don't know the reasons behind it, I hope I'm not privy to the inside information. But a couple of years ago, it seemed like they were going to go under and beyond type one scooped him up and put them under their umbrella. And now they are part of the big beyond type one family. And that's one of the really interesting things not to get off the subject here about beyond type one. You know, when they first started, a bunch of us who've been around for a while, kind of thought, Well, what is this fancy new social media feed going to do? Right? What is there Legacy going to be what kind of changes are they're going to make? And while I think that they have still differentiated themselves by appealing, perhaps more to young adults, and focusing a lot, I mean, their social media is amazing. They've also now really made a name for themselves by being an umbrella organization for smaller diabetes groups that it's really hard to survive with a low budget when you try to go yourself safe sitting as part of them. I think slipstream now is part of them. Lots and lots of be on type run lots of little organizations that make a big difference, but needed their help so I guess that's a Tell me something good as well for beyond type one. If you haven't Tell me something good story. I'm in the process of gathering more I've been putting up the posts in the Facebook group and elsewhere. If you have some good news, I want to share it just let me know you can also email me Stacey at Diabetes connections.com and tell me something good. I mentioned at the top of the show that we are going to be marking 13 years with an insult pump in July, really just late next week, July 4. Yeah, we were geniuses and decided to start it over Independence Day weekend, when we were not even at home. That's a story for another time that I have told that I tell in the book too. But we are also next week headed to the endocrinologist for the first time since January, we did not get an A1C when I had a telehealth appointment for Benny in March. So I'm really interested to see I mean, I know the drill from Dexcom . And while I don't share numbers, I think we are going to have one of if not the lowest A1C’s Benny's ever had thank you to Control IQ. But there's always more to talk about when we see the end, other than just the numbers. So I will keep you posted. If there's anything that Benny wants me to share, or that we want to talk about, but I'm really looking forward to that appointment just because Gosh, we've never gone six months without seeing our endocrinologist and while I know a lot of people think it's a pain to go every three months i mean i think it's a pain to but I'd like checking in I love Dr. v. I always learned something we always ask about Questions, even though he except it was asks me questions now, which is really funny and I do enjoy. I think that when you have a kid who changes as much as my kid has over the years, just physically, you know, and everything else, it's really important, at least for me to have that kind of touchstone, so I am really looking forward to it. And I think Benny's grown an inch. He thinks he hasn't grown at all. Anyone. Let me measure him. I mean, how ridiculous so we'll get a bite, which is what I'm looking forward to as well. Okay, we have so many great episodes on tap. I have all this technology stuff. I have some personal stories that I've been holding, always a mix around here about the technology, the news, the great stories from our community camp. Oh my gosh. So there's lots coming up. It's just a question of what comes next. If there's any breaking news, we'll do our very best, but please join Diabetes Connections, the group on Facebook, that is the best way to stay up to date as to what's coming and I often ask you all questions as well, which helps me figure out what episodes are really important to you. Thank you to my editor John Bukenas from audio editing solution. And as always, thank you for listening. I'm Stacey Simms. I'll see you back here next week until then be kind to yourself. Unknown Speaker 45:12 Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged Transcribed by https://otter.ai
Digging deeper into recent news from and about Dexcom. Stacey talks to Chief Technology Officer Jake Leach about the news that competitor Abbott has received approval for it's Libre 2 CGM. What does that mean for the marketplace? She also asks Jake about G6 sensor issues, data gathering and more. Check out Stacey's new book: The World's Worst Diabetes Mom! Dexcom statement on data and privacy: Patient safety is a top priority at Dexcom, and we design our products to be as safe and secure as possible, as the data that comes into our system from CGM devices is extremely important for patients and physicians in understanding and improving diabetes management. Dexcom works with government agencies, industry partners and security researchers to apply current best security practices for medical devices to help ensure the integrity and availability of our systems. Our terms of data use are laid out for patients to consent or opt-out when they first set up a Dexcom account, so they know exactly how their data could be used and who will have access to it. In order for healthcare providers to access patient data, each patient must approve the sharing of their data to the healthcare provider through the CLARITY app. Another way patients can opt-out of sharing any of their data is by using the dedicated Dexcom receiver to view their glucose levels instead of a smart device. Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription: Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:16 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:22 Welcome to a bonus episode of Diabetes Connections. So glad to have you along as always. A bit of an unusual situation this week in the very last episode, and hopefully you've heard it. I spoke to Dexcom CEO Kevin Sayer. we taped that episode before the ADA conference actually took place. You know, the time shifting nature of podcasting. we taped these interviews ahead of time and then a couple of days or a week later, generally, the interviews air. A a couple of days after taping that interview, the FDA approved Abbott's Libre2 and this is a different CGM is able to continue transmit glucose data every minute. And users can now set the system to send alarms when their glucose is too high or too low. And previously, you had to scan the sensor in order to get any kind of glucose reads. So that is a big change, and frankly, more direct competition to Dexcom. I have reached out to Abbott in the hopes of learning more and asking them any questions that you may have Dexcom though, immediately reached back out to me and asked if we wanted to talk more about CGM and how they stack up in the marketplace. Now, I am not going to pass up the opportunity to ask more of your questions. And that's why we have sort of a Dexcom double feature this week. My usual disclaimer Dexcom as you have heard, and longtime listeners know Dexcom is a sponsor of this show. That means they pay me to have a commercial in the show. That sponsorship gets them a commercial, it does not get them any kind of approval over content. And so what does that mean? It means I don't send them all the questions. I have of time, we don't plan out what we're going to say. I hope you know, as you've listened that I don't hold back on questions and criticism from them. But we do have that relationship. And it's really important that you you know it right because we were doing news interviews here. And this interview is with Dexcom CTO, Jake Leach. I will link up more information at the episode homepage. And as always, there is a transcript. So here is my interview with Dexcom’s chief technical officer. Jake, thank you for jumping on and spending some time with me and my listeners. We always appreciate learning more about what's going on at Dexcom. So thank you. Jake Leach 2:36 It's a pleasure to be here. Stacey. Thanks for having me. Stacey Simms 2:38 Absolutely. So I just talked to Kevin Sayer. We did kind of a high level, you know what's new, what's next? How are things going? Talking about the G7? It he's of changes that have happened to the G6 COVID delays, that sort of thing. My listeners had a bunch of questions as this is the backdrop of course of the Libre news that came out Abbott's Libre 2 have got approval for use of the United States. The number one question that my listeners had was, can they talk about the price difference? I don't know if that's a CTO level question. Jake Leach 3:11 Yeah, as much as you know, I'm involved in it. We basically, when we think about the cost of the product, the most important thing to be thinking about is making sure people have access to it. So insurance coverage, we feel really good about the fact that 98% of the private insurance companies do cover the product, as well as Medicare started covers it. And in states, many Medicaid systems do also cover the product as insurance. That's where we focus our time is really on on that. And we very few of our customers actually pay cash for the product. The vast majority of everybody gets it through insurance coverage. Stacey Simms 3:48 When I look at the Libre, and full disclosure here, my husband has type two diabetes and he uses the Libre and Benny my son has used the Dexcom since 2013. Now, wow, yeah, it's funny to think about how much time has gone by. But one of the things I look at with the G7 coming and the you know, the bit that we know about it is that it will be much more like the Libre in terms of the sensor and transmitter in one. Can you speak to that in terms of the G7 in terms of size, insertion, that sort of thing? Jake Leach 4:25 Yeah, so the G7 is, as you pointed out as an integrated sensor all in one, so it's the wearable device that goes on the body includes both the sensor, the transmitter, as well as the electronics inside the wearable that are both monitoring the center and then taking that signal and sending it via Bluetooth to the different integrated display devices whether that's a mobile phone, so a smartphone with an app on it, Android or iOS, or a insulin pump for automated insulin delivery systems. Other display devices, we have our receiver that is our proprietary handheld, some people really like that as their way to access the information. So our goal is to make it as interoperable as possible, which is one of the key important points about IC GM is that it's interoperable device Stacey Simms 5:16 you And with that, I always get hung up on it. Because when I heard about interoperability A few years ago, in my head, it seemed like, Okay, well, I could switch out my pump, or I could switch out my sensor, I could use a different brand with this thing and kind of mix and match. And of course, insurance for most of us is the biggest problem for getting different devices. But it doesn't really work like that, does it? I mean, if a Dexcom g seven works with say, Omnipod five horizon, and with a T slim X to control IQ, people aren't really going to be able to just switch out devices like that and use the same sensor, are they? Jake Leach 5:51 Yeah, as usual, it's more complicated as you look at it under the hood. But the key thing about the integration is that systems have to be designed To be able to be integrated. And so one of the big moves that we made when we transitioned between Gen four, and Gen five, and then subsequently Gen six, and as well as Gen seven, we moved to Bluetooth technology, which is a much more readily available technology within the display devices. So we moved to that. And when we did that, we designed an architecture that the intelligence of the system is all on the the wearable. So all the glucose calculations, all the information that you need is actually on the little transmitter device in G6, and will be in G seven as well. And so that is the device that can be accessed by multiple displays. If you think about it, you can use your mobile phone and the whole share feature that comes along with our mobile system, the remote monitoring feature, you can use that and at the same time, you can use a tandem controller to pump doing automated insulin delivery. And so the system is really designed to have that type of integration where you've got the right information in the right places and makes it interoperable. The systems have to be designed To be connected, for example, horizon five Omnipod five, the system that is in development by insolate is being designed to be integrated with both G6, that's what they're doing their studies with as well as G seven. So you have to do the design work and do the testing to ensure that it operates safely. But interoperability is a great thing. But it isn't as simple as just pulling and pulling everything it has to be designed and tested. Stacey Simms 7:22 Yeah, it was interesting. I in my head, I always had it as well, this, you know, I can mix and match, I can figure out what I want. But when I talk to technical people, they always kind of smile at that because they understand more of the intricacies, I think of what it takes within the technology to make that kind of stuff happen. Whereas as the user, I just want to hokey pokey it around and use what I want. But we'll see as it goes down the road. Some other G7 basics that my listeners asked was, will the G7 have a shorter warm up and does it have a lower MARD? Is it more accurate than G6? Jake Leach 7:55 Great questions. The warm up time is designed to be shorter than g6. And so we're As we're landing exactly how much shorter it's going to be, but it's definitely going to be a faster warmup. Also, the mard is the average difference between the sensor and the reference measurements that we measured the performance of the device and so on. That way, we want to ensure that we hit those iCGM standards. And so I think G7 definitely has the opportunity to perform better, but it definitely will meet those CGM standards, which are rigorous and important to ensure the product performs accurately throughout its life. Stacey Simms 8:30 Can you give me a hint on the warm up? Is it going to be more an hour and 45 minutes or more? Jake Leach 8:35 No, no, no, it's gonna be It'll be an hour or less. Stacey Simms 8:40 You know, just had to double check on that. Jake Leach 8:42 Yeah, no games there. We're just we're still trying to dial in exactly what's going to be to ensure we you know, the system has to be accurate. Second, it starts up but we do value short warmup time because we know how important it is when you know you're without the sensor data for that warmup period. So you want to make sure it starts up as fast as possible. Stacey Simms 8:59 Yeah, it's interesting too. Because I'm probably an outlier but previous to we use the control IQ system with tandem previous to using that the two hour warmup really didn't bother me too much. I mean, it was only two hours especially if you came from like we did seven years with no CGM. It's really did not seem to be that big a deal. But now that we're using this algorithm, and the pump relies on the Dexcom data, two hours just seems like way too long to be without it. Jake Leach 9:27 I agree. Really interesting. Stacey Simms 9:29 Speaking of wear time, we've been very fortunate. Again, as I said, we've used Dexcom for a long time we do not really have a lot of issues knock on wood with it. He's of sensitivity which Kevin mentioned in his in our interview together, we went over that, but also with where time, but a lot of my listeners wanted me to ask if you are really checking into the people who can and there are many who can never seem to make it to 10 days on a sensor. Right who really was it whether it's because they have a young child or the body chemistry for whatever reason, it does seem to be an issue that many people can't get the full life out of a sensor. Jake Leach 10:07 Can you address that? I know you're looking at it. Jake Leach 10:09 Yeah, yeah, I've got, of course. So a couple things there. There's quite a few things we've done over time. And we continue to research on this. There's two aspects to sensor longevity. One of them is how long the sensor can remain accurate. And so within our device, we have algorithms that are checking the performance of the sensor at all times. And so there are times when we detect that that sensor signal is not accurate and not meeting the CGM standard. And so we we actually shut it off and that's when you get on the display, you get the sensor failed signal. That's basically we detected that that sensor is not working properly, and it's not going to return to functioning based on the data that we're seeing from it. As you mentioned, most people are able to get 10 days out of the sensor particularly now that we've made some changes with the adhesive as well. But there are some people who don't and with those folks, we often spend some extra time with our tech support, and kind of walk through what their issues are. And there's quite a few things that can be done to help sensors last longer. I mentioned the adhesive, we recently updated our adhesive, we've added an overlay. that's optional, people can ask if you have access to the clear adhesive that goes over the top of the white one that comes with the product. And so we're looking at lots of different ways. Because what we found is everybody's a little different in terms of what their needs are and what works for them. And so we're trying to do is have as many options that we can to make the sensors stay on and heared. And it's really that's our philosophy around sensor longevity is if I really wanted to I could I could run a study and claim that G6 goes 15 days because I know the performance would meet that the problem is not all the centers would last that long. And so what we're really after is making sure all the sensors, as many as we can get out to the labeled timeframe, not just some of them. And I think that's one of the key differences that you'll see over time between different CGM companies is we're very focused on a high level liability, you're never going to get 100%. You know, sensors will come off and they'll get knocked off. It's a challenge. But it's one that we're very focused on trying to ensure that we can have the highest flow reliability possible. Stacey Simms 12:12 Let me just follow up on that, because sensor sticking is one thing, right? I mean, I know that that's an issue in everybody's skin is different. And you have the overlays now, and the adhesive does seem to be sticking better to many people. Butwhat about people who have no trouble getting the adhesive to stick in the wire to stay in, but get recurrent sensor failure? Are there any best practices for people who seem to get that over and over again, Jake Leach 12:36 there are and it's actually often comes down to, you know, sensor placement and you know, the sensors indicated for abdominal use. And so, we often instruct folks to try at different locations. We've also, if someone's really having repeated challenges and where they're getting those sensor failures, we do have specific capability with our tech support to work with that customer and look at their data and To help determine exactly what is going on, there's a number of things to we tend to see, that happens when people are more dehydrated. So you know, kind of making sure they're well hydrated and drinking water. But if someone's having consistent problems all the time, then we really want them to reach out to us and talk to our tech support. And we can get someone who is experienced, but you know that those types of issues to talk to them and look at their data and help work through it. Stacey Simms 13:22 I don't mean to harp on it. But I've just, and I'm, I know, you may not be the right person to try to pin down on this, so forgive me, but I'm thinking like, Is it an insertion thing is it I mean, we've, anecdotally, the community has said, drink water, stick in the fattest place you possibly can maybe rock the sensor a little when you're inserting it so it doesn't go as deeply in like it's more shallow. I'm just curious with all the data that you will collect in these phone calls. If there's any, like I said, a best practice that would help or if it's just you know, you've got to talk to your local rep, maybe get an in person or zoom call lesson or talk to tech support, but you know, just a more concrete business advice, I think would be so helpful. Jake Leach 14:01 Yeah, I think a lot of it does have to do with that insertion saying, like you said, you want to put it into a place where you've got good interstitial tissue. The other thing I've seen, too, is, um, you want to make sure that it's not at a place where you're going to compress the center a lot, you know, if it's under compression, you're not getting the same amount of perfusion there have glucose under the skin. And so that can also lead to issues. There is something recently that we've released in a product that has really solved a number of issues in that people were getting sensor failures during really high glucose excursions. We've sent some solved that problem with a new version of our transmitter that is now out in the market, almost everybody has that device. Now, it did make quite a dent in those we were detecting the algorithm was detecting that really high glucose as a potential issue. And over time, we've learned through looking at the data that that wasn't an actual issue until we were able to correct that in a recent version of the device. But yeah, it does come down to kind of working through sensor insertion and placement in Don't have data that validates, you know, some of those techniques that you mentioned that says it will work if you do these things. But we have heard from the community, and in our own times speaking with patients that it has been very helpful. And some of those concepts you just mentioned. Stacey Simms 15:14 Jake, I'm sorry, can I ask you to clarify? It may have gone over my head. But when you were mentioning the newer transmitter that is out, can you just clarify what you meant by when it was reading very high blood glucose? And that was affecting the sensor? And then it sounded like you said, but that wasn't the case. Can you just clarify that? Jake Leach 15:31 Yeah, sure. So what it was, was that during really high glucose excursions, the device was detecting a potential sensor failure where it wasn't the sensor failure. There's nothing wrong with the sensor. It was working. But you know, it's one of those things that once you once you get a product on the market, you learn more about it. And so we've made several iterations to the G6 even since it's been in the market for several years to improve it. And that is one of the cases that we saw patients running into, that we resolved with the newest version of the device is that it doesn't give The sensor error when when there was really high glucose excursion, Jake Leach 16:03 and I'm just curious cuz it does sound like you've resolved it. What is really high glucose? Like over 400? Jake Leach 16:10 Oh, well north of 4, 5, 6 hundred. Stacey Simms Oh my goodness, Jake Leach 16:14 yeah, we're really, really high glucose. Stacey Simms 16:16 So if somebody has a teenager who's like bumped up to 250 and getting sensor failure, that's not the issue. Jake Leach 16:21 That's not the issue. No, no, no, not in not in those, Stacey Simms 16:24 because everybody has a different idea of really high glucose. So Thanks for clarifying. Jake Leach 16:27 Yeah, that's a good thing to clarify. Because, like you mentioned, Stacey Simms 16:32 you know, another question that my listeners had was about data. And we've talked a little bit here about some of the data that you collect. And I don't know if it's different internationally, but to speak about the data. Jake Leach 16:43 Yeah, sure. Of course, first of all, data privacy is very important, both just fundamentally and philosophically as well as to be in compliance with all the global regulation we're seeing in this area of data privacy. There's a lot of advancements in the laws and regulate Around consent, and users granting access to their data, because in the end, it's the users data. We're just a steward of it. And so we take it very seriously. And so in our processes and our controls, that's how we proceed. So the data that comes into our systems from the CGM devices are used for things like share. So we provide the share system, the remote monitoring, that connectivity is super important. The data is also through that same system made available to the clarity application for use by the patients or customers or their physician. And then we also have that data in a safe lockdown repository that can be used by our tech support agents. If users are having track challenges, like we talked about tech support agents can actually log in and work with that user on their specific data. But Stacey Simms 17:48 hey, it's Stacey jumping in here. I need to insert myself into the interview with the episode here because we hADAn audio issue right there and it was completely my fault. So apologies. Dexcom is going gonna give you a full statement on data and privacy, and I will link it up in the show notes. So Jake can kind of continue his thought that way and give you the full statement. One thing he said that I thought was very interesting though was if you are concerned about privacy and want to opt out, you can just use the receiver all by itself. They don't collect any data that way. But then you can't use clarity or share the information online with caregivers or your health team. But if you want to opt out, that is one way to do it and still use the Dexcom system. I did follow up the data question with one about transmitting data and why it's limited to certain devices. If you use a tandem pump like we do, for example, the transmitter can send data to your phone and to the to the mix to pump but then not also to the receiver. Jake Leach 18:52 Yeah, the ad goes down into the specific engineering of the device deep down inside the wearable, for example to the transmitter producer. There's a battery in there. Every connection to a display device takes a Bluetooth communication channel. And so today, which is six, we support two channels, one for mobile phone and one for a medical device such as the insulin pump, or the Dexcom. receiver, it can support to have those connections to the med devices, because we need one available for a phone. We are looking in the future to allow multiple different types of devices you can imagine watches and other things. And so that technology is we're working the architecture of that. But the key there is that circuitry has to be low enough power that it doesn't use up the battery. We specifically designed G6 to be reliable for that 90 day period for the mere life. And so we couldn't put that system you can't support more than those two connection. Stacey Simms 19:45 Yeah, practically speaking for us. It's plenty. I was just curious about the thinking behind it. And is that going to be the same thing with the Omnipod five? horizon? I'm laughing because I have to figure out how to say that Omnipod five. will it be the same thing Work goes phone and PDM or something, or is that a different setup altogether? Jake Leach 20:04 It's a little different. But it's it with the G6 integration, G6 will support the Omnipod five as well as a mobile app like a G6 app. So it does support that. And as we look into the future towards things like g seven and future versions of G7, we are looking at architectures that could support even more display devices, more than just two. Stacey Simms 20:24 And I'll hope to talk to Insulet in the future to get the specifics. But as I'm asking you this question, that sounds a little ridiculous, because where would it show up on the pod? I guess it would show up on a PDF if you use that instead of a phone. Jake Leach 20:34 Yeah, I think one way to look at it for all of these automated insulin delivery systems is you want good communication between the algorithm that is doing all of the calculations for how much influence to deliver, you want a good connection between that and the glucose signal and the pump that's doing the delivery. That's part of the system engineering of the of the product and part of G6 was designed specifically for interoperability with so that it can support use cases like that Stacey Simms 20:59 you mentioned To watch, I did talk to Kevin about this. So I'm sorry to bring it up again. But my listeners are really waiting for that direct to watch component. Can you speak to that from your perspective? Jake Leach 21:11 Yeah, sure. So, you know, it's a it's a feature that we've been working on in development for for quite a while. And as we've worked through it, well, it turns out, you know, on our side, as well as on the leaves, Apple Watches is one of the one of the examples other than a significant amount of engineering. I think that we all underestimated when we first started talking about that product in the way that it interacts with the G7, as well as the phone app. And so we've been working with Apple closely know, over the last couple of years, actually, when when they announced this feature, it was really kind of a prototype feature. We started working with them closely on it, making quite a few updates on both sides to support that type of a feature. And so while we don't have any dates, where we're going to launch it, it's important feature that we know, adds flexibility to users lives and so we will continue to work on it. But at this point in time, we don't have a specific comment. Stacey Simms 21:57 Yeah, I'm curious um, before I let you go here, DiabetesMine, which is a really great news source, if as you listen, you're not familiar, I always read them. I think they're fantastic. They recently, earlier this year, put out an article, headline “39 potential new continuous glucose monitors for diabetes,” as some of these are never going to happen. A lot of these are, you know, non invasive wearables that, you know, look at a headline, and we may never see again, but some of these are going to happen. Jake, I know you all are watching the competition. You know, I know that, you know, Dexcom has enjoyed a long time here of not having a lot of competition, especially the United States. I'll give you the floor. Are you guys ready to take on these companies? Jake Leach 22:39 Absolutely. I think the just notion that there's that many different companies and working in this space is kind of validating the concept that continuous glucose monitoring is the standard of care for diabetes management and so perfectly comfortable with Mark people working in this space and we continue to drive forward all of our efforts on advancing the technologies, whether it The performance of the sensor the longevity of the sensor, particularly the ease of use, and the integration of our CGM with other devices. And you know from what we've seen, it's a very large opportunity. There's a lot of people who could benefit from CGM, so we're comfortable not being the only player. And we actually going to welcome expansion of CGM space across the globe with other companies as well as tech from Jake Leach 23:23 Well, thank you so much for jumping on. I feel like I got a double feature of Dexcom this week. So thank you for the info. It's always great to catch up. Jake Leach 23:29 I appreciate it. Stacey. Thanks for having me. Jake Leach 23:37 You're listening to diabetes connections Jake Leach 23:39 with Stacey Sims. Stacey Simms 23:43 More information in the show notes as always, the episode homepage and there is a transcript there there are important links. Same thing if you're listening in a podcast app, you should be able to get to the show notes. But you know some apps are weird and they don't post links and Apple podcasts which is the most common one. Used as kind of bad for that sort of thing. So I always put it on the episode homepage, which you can find at Diabetes connections.com. And a little bit on that audio error if you're interested. I mean, here's some inside baseball. But here's basically what happened. Whenever I do a remote interview, and probably 90% of the interviews on this podcast are remote, right? We're not together, I do them generally through Skype. And my computer is set up so that it automatically records when a Skype call is placed. I have a backup recorder. For those of you who are technical and want to know it's an h5 zoom, and it's fabulous. But it's an external recorder that's plugged into the computer and has an SD card inside of it. So this call like a couple I've done recently, our zoom calls, my computer is not set up to automatically record and you know, everybody knows zoom by now if you're not the host, you don't have the power to record well 99% of the time, I asked the host to please record it on their end and then send it to me as a backup and I just roll the h5 zoom over here. forgot to ask them To hit record, there's always a PR person on these calls, you know, Jake doesn't have to worry about it, they'll take care of it. But I forgot to ask her to do that. So I'm rolling on my end, but they weren't rolling on there. And then and this has never happened before, the SD card was full. And it's a huge SD card. I don't know what the data is. I'm not going to pop it out. Now, look, but you know, I cleared out periodically, but probably only once every six months. And oh, my gosh, I completely forgot to do it. So it just clicked off and stopped recording. I share this with you. Because I mean, we're more than 300 episodes in right. We're close. You know me, I know some of you, but I thought you might appreciate it behind the scenes look at some of the nonsense that goes on here. I was able to stop the interview, ask them to start rolling and then restart. But we did lose that part, which I hate about the data. I have talked to Dexcom in the past about data. I will link up the specific interview where I talked to them about that. And I will link up the statement that they gave me after the fact I asked them to email me some information about that. But you know, hey, we're not perfect around here and we don't pretend to be the next Episode shouldn't be an interview with tandem. if things work out. We're still in the process of moving some things around with ADA and breaking news, we always like to do the best we can. So tandem should be up next, please join the Facebook group Diabetes Connections, the group to stay up to date. And that's the best way to get your questions into these interviews. When I have something like this, I always ask and you guys are amazing at getting me great questions and letting me know what you want to talk about. So I appreciate that very much. Thank you as always to my editor john Buchanan's from audio editing solutions. And thank you very much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself, even if your SD card is full. Benny 26:45 Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged Transcribed by https://otter.ai
Dexcom is featured in a lot of headlines coming out of this year's just-completed ADA Scientific Sessions. Stacey talks to CEO Kevin Sayer about everything from how COVID has impacted the G7 timeline, what the G7 will actually feature, adhesive changes and more. She asks why Europe got approval for back of arm placement and when we might see that in the USA and, once again, we check in on direct to watch progress. Check out Stacey's new book: The World's Worst Diabetes Mom! In Tell Me Something Good, a major league dream comes true. Read about Garret Mitchell here This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Join the Diabetes Connections Facebook Group! ADA Scientific Sessions Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode transcription: Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Unknown Speaker 0:17 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:23 This week catching up with Dexcom at the ADA Scientific Sessions a time when a lot of new studies are presented. But this year COVID-19 means delays for expected tech, including Dexcom G7, which was moving ahead with trials. Kevin Sayer 0:38 It was in full force in March it was gonna continue throughout the rest of the year that came to a grinding halt. We are in the process now of resuming and replanting that schedule. Stacey Simms 0:50 Dexcom CEO Kevin Sayer goes more in depth about the G7 we also talk about adhesive changes, working with European pump manufacturers and what else Coming down the line and tell me something good a major league dream comes true. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of Diabetes Connections. I am so glad to have you along. I'm your host Stacey Simms and you need to educate and inspire about diabetes by sharing stories of connection. My son was diagnosed with type one right before he turned two. He is now 15. My husband lives with type two diabetes. I don't have any kind of diabetes. I have a background in broadcasting and local radio and television and that is how you get the show. The American Diabetes Association Scientific Sessions is a conference where every year many studies many many studies are released and thousands of people gathered to hear what's new and to do some serious schmoozing Of course this year the entire conference was virtual, which is a terrific opportunity. You know maybe you're able to register and jump online. A lot of new media outlets offered their own platforms for you to kind of take part into the virtual conference. I've never been to a da. And while I don't plan on reading every study, you really can go online and see just about everything. I'm going to link up some of the major links, including the one right to the conference, and some of the abstracts. I think every abstract was on one of the pages I saw. So I will link up all of that information on the episode homepage. And I've already put a lot of it out on social media. And chances are good that as this episode airs the Tuesday after ADA that you may have read about a lot of these things you may have seen some of the studies, but I really like going in depth with the the newsmakers as we call them as I used to work in News Radio, but you know, the people who are putting out these studies, so this is the first of what I hope are many interviews over the next couple of weeks. I have confirmation from several of the pump manufacturers. I've reached out to some of the other tech people and people doing these studies and we'll have more information on And follow up on some of the information that came out. A quick disclaimer. As always, I always like to make this clear. Dexcom is a sponsor of this show, you'll hear their commercial later on, but they don't have any editorial control. And that means they don't tell me what to say or what to ask when I have Kevin Sayer or anybody on from Dexcom. longtime listeners know the drill. But I just like to make that clear. I'll also add we just had Kevin on the show a few weeks back, it did a whole episode when they announced that they were going to have CGM access to hospitals because of COVID-19. And I asked our Facebook group if it was a little too much Dexcom. But overwhelmingly, they said no, give us as much information as you can. So we will get to Kevin in just a moment. But first diabetes Connections is brought to you by One Drop. You know, I spoke to the people at One Drop and I was really impressed at how much they get diabetes. It really makes sense because their CEO Jeff was diagnosed with type one as an adult. One Drop is for people with diabetes by people with diabetes, the people Let One Drop work relentlessly to remove all barriers between you and the care you need. Get 24 seven coaching support in your app and unlimited supplies delivered, no prescriptions or insurance required. Their beautiful sleek meter fits in perfectly with the rest of your life philosophies send you test strips with a plan that actually makes sense for how much you actually check. One Drop diabetes care delivered, learn more, go to Diabetes connections.com and click on the One Drop logo. The ADA Scientific Sessions this year pretty different all virtual, but the information is still coming out. There's so much of it as always, and I was able to talk to Dexcom now this interview happened Friday just as a DA began. And while we were able to talk about things that were going to be presented over the weekend, there's always a chance breaking news happens since the interview follow along on social media for more information if anything changed, of course we'd put it out that way. And I will link up more information in the show notes. quick bit of housekeeping, there are a couple of terms that we throw around here that I want to make sure to just to define really quickly and kind of loosely, most of you are familiar. MARD is a measurement for CGM, the lower the mark, the better, the more accurate and we talked about that. We also mentioned iCGM. That is a new we're just about two years old classification from the FDA here in the United States, where an integrated continuous glucose monitoring system can include automated insulin dosing systems, you know, insulin pumps, it can integrate other devices like the Dexcom g six does with the tandem pump, that sort of thing. It also classifies it as a new type of device in a different class for the FDA, which means different things for approval going forward. I will link up more information on that but when he says i CGM, that's what he's talking about. Here is my interview with Dexcom’s Kevin Sayer. Kevin, thanks so much for talking to me. It hasn't been so long. Since we last spoke, but with the ADA once I get a roundup of everything that was happening, thanks for jumping on. Kevin Sayer 6:06 Well, thanks for having me again, Stacey. It's always fun, Stacey Simms 6:09 we have a lot to catch up on some things that we just talked about a few weeks ago. I'm going to start if I may, with something that may seem very mundane, but really caught my eye. And that is the approval in Europe, of placement on the upper back of the arm. We are a largely US based podcast, we do have large international listeners who are very interested in Dexcom. But can you talk a little bit about how that came to be? And as we have talked about before, many people here in the US were on the back of their arm, even though it's not FDA approved. So I guess the second part of that question is, are you submitting for approval here too? Kevin Sayer 6:48 Well, I'll answer all those questions. And let's start with your You are correct. People have been wearing this thing on the back of their arm for a long time, even though legally and regulatory, I cannot encourage that on a podcast. The fact is when you go to, in particular to like a kid's diabetes meeting, that's where you see all the sensors. And so we've seen that a lot in Europe, we had done some studies and there was some evidence presented that was compelling enough to the authorities that we can get that arm indication. And so we filed that and we got it. Also combining that in Europe, we got a pregnancy indication as well. So we were in a really good position with with respect to see mark with us regulations, we have that iCGM standard. And the evidence that we presented in Europe for approval isn't strong enough to meet those iCGM standards that we have with our G six system. But we are working on putting together some evidence in the US that we think would work and will be good enough. So we will ultimately seek a G six arm indication. I think the other thing to look forward to as far as that when we run our G seven pivotal study, we're going to run the study on In the back of the arm and on the abdomen and on for pediatric patients and on the upper medics as well. So we'll have three labeled sites there. And that will give our patients literally the optionality labor for label indications where the center and the in the most popular places. Stacey Simms 8:17 It's interesting, when you have a chance, I understand why you wouldn't go back with the G six and redo things like that, you know, I would imagine the cost alone would be prohibitive. But with the G seven in new systems, it must be interesting to hear from customers, not only things like arm placement, or I wonder if there are other things that you might test. In other words, I have always heard and I guess you can confirm I don't know if it's the case, that the reason that pumps and CGM should not be put through airport scanners is because it wasn't tested there. Is that the kind of thing that in the future we might see you You trying? You know, hey, let's test it with this condition. Let's test it under that condition. I mean, does that come into play? Well, Kevin Sayer 8:55 we do all of the testing required under federal regs. For those things, I mean, I've worn my CGM through scanner, never worn anything through the scanner through the suitcase, mind you better but I will tell you some of the things we do there is, you do have a very good question there. Because you do ask, do we listen and what are some of the things we try before we lock in on our product design and what do we test and some of the things we've we've talked through and thought about what g seven because we've been at this for quite a while we've had multiple size configurations. Before we locked in on what we did. We've made it smaller, we've made it bigger. We've liked it on the size we like it on because that was the optimal configuration for the electronics and you get to a point sometimes when things are so small, you can almost lose dexterity or the ability to use it properly. We know people want a smaller less visible sensor. As we look going forward. We will continue to focus on that. we tried numerous adhesives with G7 A in our set In our research work, what sticks the most without causing problems, etc. We, we even experiment, not just from a customer standpoint or customer feedback standpoint, but from a scientific standpoint, what's the shortest we can make the sensor and still get the outcome and the accuracy that we want. So we've spent enough time on the G7 system, to whereby we've tested a number of things of that nature to figure out what the best configuration we can get is. And we balance that with getting the product approved, and again, through the ICGM standards. So there will always be when we launch a new product, there will always be some features that we leave on the table that we don't put in it that we would like to put in the next generation. But ultimately, we have to stop and say that this is good enough. It's my job to make them stop. I promise you, the guys have more great ideas than you could ever imagine. But that is a very important part of our process to really listen and test those things. As we go. Unknown Speaker 11:00 Okay, so you mentioned you've brought up now the G7. So let's jump ahead. I do have some g six questions, but let's jump ahead and look at that. Where are you on the G7? Did the has COVID delayed things? I know you hate the dates out there, but let's talk about No. Kevin Sayer 11:13 All right, and I won't put a final date out there. But COVID has delayed things on a couple of fronts. The major one is the clinical study any of your listeners and involved in one of our pivotal studies where our patients go into the clinic for you know, at least half a day, at least 12 hours to have blood drawn and tested in the lab instrument is glucose values are raised and lowered. All those types of activities have ceased due to the COVID situation and we had a very aggressive clinical trial schedule. Literally, it was in full force and Martin was going to continue throughout the rest of the year that came to a grinding halt. We are in the process now of resuming and re planning that schedule, but we still don't know all the dynamics of the schedule and the best example I can give you if you go to a large Diabetes Center They might have had four or five patients at the same time in the room being monitored, while the social distancing Are we going to have to? Are we going to be able to have four or five? And what protocols are the various centers going to be running with respect to those clinical trials? So we are really literally out there rescheduling the pivotal study for the G7 system. That is the biggest delay. The other thing we have experienced, and it's to a lesser extent, is just the effect of COVID-19 on all of the people involved in this process. You know, I was talking to somebody the other day, and they used to quote, it takes a village to raise a child it sure as heck takes a community to build a product. And we do depend on a number of other suppliers who encountered their own COVID difficulties, the easiest one that comes to mind which you summon the molds for the plastic or an 18 month lead time and the molding company was hit by COVID and literally shut their whole factory down for a month. And that's not the mold makers. That's not a problem that just does Just reality, we put all of the operational pieces of the schedule back together. We're comfortable with those timeframes. Now we've got to get the pivotal study up and running and get it big enough. And I will go back to you know, I've talked about I CGM and the bar that the FDA has said, This isn't a study, we can go run with 80 patients and call it a day, there's going to be several hundred patients here. To the extent statistically we can come up with models to decrease the size of this study, we will, but we do analyze it, because the criteria are such and the one that they explained to me that rang the truest in the mid range of the good range of sensors, you know, timing range between 70 and 180. If we have 1000 data points, and if seven of those are off by 40 points, or 40%, the whole trials done, and our biggest source of error in the studies is not the sensor, and it's not because the centers aren't great because they are, there's just so many pieces of paper and so many things that have to happen. So we are really refining that process. Given the fact that we can't run studies now, we're very optimistic once we get them going, and we'll do well. We're going to run a study for Europe, in addition to that, and file that separately, so you'll hear more timeframes from us. But it's going to take longer than even a couple of months to have the perfect schedule laid out a timeframe is not coming for a while. Can you Stacey Simms 14:17 share anything about the G7? In terms of what makes it different? And why move ahead with a new type of sensor? Is it still good, Kevin Sayer 14:26 and I'll go back to my first statement to listening. The one feature our patients have all said they want a smaller, and that's pretty universal. When we embarked on this many years ago, we literally started with something the size of an m&m. Now the G7 is a little bigger than a nickel. It's not as small as an m&m, but it's still pretty small. And we wanted to do that. We wanted to eliminate some of the difficulties with respect to transmitters and pairing the whole G7 system is disposable. We also when we looked at G7, and when we started down this path We designed this from the very beginning to manufacturer in an automated manner. There will be humans manning the machines but these aren't going to be human lives. Everything else we've done we designed around the fact that we manually put everything together or have many manual processes now g six is about to the point where that will be pretty much all automated or manual lines will go away but we wanted to build a product that we could build 10s if not hundreds of millions of in a repeatable manner and our previous generations or product, even g six up until now I think g six has now crossed the barrier where we can build lots of them but build g five system says you could have never got to the volumes we anticipate getting to as as technology continues to expand and explode and i and i think what we've created and our goal which he said is to give us a product configuration that anybody can wear and then it will have multi uses. It's as big a step forward from G six is G six was for G five. Stacey Simms 15:56 When you say the whole system is disposable in the size of a nickel Retreat you want to avoid transmitter issues? Is it all in one is the transmitter and the sensor Kevin Sayer 16:04 transmitter and sensor all built into one unit yes Stacey Simms 16:07 I'm you know, having been with Dexcom for more than six years now and I think we started in the g4 Platinum I'm trying to visualize Kevin Sayer 16:16 it's very small for some pictures on our website. No, it's much smaller and much thinner and it literally if you were a G seven you have no idea on your body. Stacey Simms 16:25 Really interesting and you anticipated having a similar more similar you know accuracy as the G said Kevin Sayer 16:31 yes, yes, it has to meet the iCGM standards and and so we've we're designing it that way. We're designing the algorithm the pivotal studies along those lines. And right now what what is becoming very clear to us as we go through these statistics, Walmart is always important from an overall perspective, the iCGM standards are more important than than just the margin number is important that these things be reliable and offer the same experience every time. So we Certainly you have to have a good mark to be approved Android CGM standards, but the reliability of the centers is every bit as important. We're focused on both. Stacey Simms 17:09 Well, as we look forward to that, as you said, it'll be a while because of COVID and other delays. My listeners, as always have questions and one that has come up quite a bit. We'll go back here to the G six and current manufacturing is a question about whether the adhesive had changed recently on the G six. As always with me, it's anecdotal. I don't have access to studies or thousands of people. But we've noticed within the Facebook group that I run for the podcast that more people are reporting, rashes and problems with the adhesive with the G six than they had in months and years past and the question came up is has something changed? Kevin Sayer 17:43 Yes, it has. There's a very fine balance. On the adhesive side. We weren't here product for 10 days. We save this as a 10 day sensor, and one of our most common occurrences of replacing a sensor as it falls off, in fact, the most common one so for years, we have studied adhesives and wanted to make an adhesive change that would give patients a better experience and have that sensor last the entire 10 days. And so we did change the adhesive out to something that was more sticky on the one and we are very happy to report that we are seeing a great reduction in the number of sensors that fall off people. So we are delivering on end to the experience. On the other side of that we have seen an increase in allergic reaction to that new adhesive. We have some data on our website. And we have done some clinically based work for those patients to give them some options to whereby the adhesive will not have that same effect that there's some mitigate mitigations that you can make to do that. So if you contact us, again, I believe it's on our website or also you can contact our tech support. There are some clinically based solutions that we can offer. Stacey Simms 18:46 All right, so I will refer people to the website and we'll keep helping each other but I think people wanted to make sure and just get confirmation that something had changed. Kevin Sayer 18:53 Well we did change it we did Stacey Simms 18:54 Dexcom offers the free over patch when people request it you know to help it be more simple. Has that changed at all? Or that seems to be the same? Kevin Sayer 19:02 I believe, yeah, the over patches. So we'll say, Stacey Simms 19:04 Okay, I feel like this is almost like when I used to ask you about Android, but it popped up in my timeline that three years ago, the Apple Watch product came out and it was a huge press release from Apple about this is gonna change your health, this is going to change you know, everything. And in that article was, of course, and you'll be able to see your blood glucose from your Dexcom. They also would hope to get on your watch on your watch. Kevin Sayer 19:27 We're always supported it. We're not direct to watch it yet. That project has has proved to be extremely difficult. The architecture of a watch is different than the architecture of the of the mobile phone. And in the middle of that I believe there have been changes made to the watch architecture as well. We as we've looked at and prioritized our projects and our resources and we look at software things we need to work on. While that project is still on our list, getting more reliability went to patients each and every day has been above that. And this taken some precedent to it, we will eventually get there. But there's also some interesting issues with the watch that we didn't even contemplate when that release came out. And I'll give you the perfect example. You've got to charge your watch every day. How do you get that alert on your wrist? When your watches charging, and things of that nature, there is a different experience, and different safety features are going to be required to be implemented over time. We're working through it and thinking about it. We aren't ready and in all fairness, as we've looked at resources, if we're picking for example, between g seven and the watch, look, I love to watch you use I use all these tech gadgets all the time, and I put different ones on, we will eventually get there is a lot more complex than we envisioned when we started down the path. Probably the most loyal Apple Watch, where's our tech comm patience. If you're an apple watch on an Apple phone and use an apple watch those patients use the Dexcom app on that watch a lot. Even through the phone. The watch experience has been a very good experience for our patients who use it Unknown Speaker 21:00 What about other watches like Fitbit or devices like that Kevin Sayer 21:03 we display on the samsung watches or some of the Android platforms now we've had discussions with Fitbit. Fitbit just got acquired. And I think they're regrouping and figuring out where they go. I think it'd be wonderful to offer our patients solutions along those lines, it becomes a question of do you get the whole device safety experience on that display? And how do we label it and what do we do? But these are the things we're looking at and pursuing? Stacey Simms 21:27 Another question I got from a listener was all about can Kevin talk about other Dexcom partnerships with newer pumps, at least new to the US like, yep, so mad if I'm saying it correctly, and other you know, European and worldwide, pump companies, is there anything new to talk about with those partners? Kevin Sayer 21:45 You know what? We just signed an arrangement with ipsum ed to work with them, their pump will pair with our sensor. It'll be in Europe first. They will bring it to the United States at some point in time. They have also signed an agreement to license, our type zero technology, Viagra that we have that has been involved in numerous studies around the world and is the basis for control IQ as well. So they will use that algorithm and it will continue to work with our sensor. I don't know all their us plans, I won't speak on their behalf. So we'll see where that ends up. We do have research relationships with a number of entities getting to commercialization, we'll just have to see these partnerships. You know, I would tell you that the 10 of joint product offering is doing extremely well we get great feedback. The insolate study has started back up. I look forward to the day when all these things are on the market. Stacey, giving patients the choice to have these automated systems will be a wonderful thing for patients and they've been very patient waiting for us and for our partners to get them out. I think when the day comes it will be fabulous but we cannot pair with every single. It is kind of a hard balance. pairing with every single pump is a lot of work to support in house but we want To be interoperable, that we want to get products out, we really want to get solutions out there. And we're happy with the partners that we have. In the US, I think initiatives like the loop initiative where they're gonna develop an algorithm that could work on a number of pumps and number systems might be a very good option for Dexcom to pair with others because the pairing is done by them in the app, not necessarily by work by us. So over time, the interoperability strategies one will continue to challenge and we are prepared to work with anybody that can enhance patient's lives and help our business Stacey Simms 23:32 it just a clarification question you mentioned Dexcom owns the type zero algorithm, which is the brains let's say of control IQ really are the basis of it if it's used in another pump, if it's in the Yep, so mid pump, is it the same exact bit of software? Or do they are there changes or Kevin Sayer 23:50 tweaks? No, I'm I know that Tana has made changes to the app and how it works, but the funnel mental math and the algorithm will more than likely be the same. I can't speak Exactly. attend some, but I'm pretty confident it'll be a similar experience from an accuracy and from a patient perspective is the way it works. And then we're working with our type zero team to develop other algorithms, and advanced versions of what they've learned in the past. We are free to license to others as well. Stacey Simms 24:15 It'll be interesting to see how that evolves. And when we talk about interoperability, I actually have a little bit of trouble with that, because in my head, and I've described it like this before, it seems like it should be more like Mr. Potato Head, right? Like I have the base, and then I get to put the ears on that I want the eyes on that I want the feet or whatever. But it's not exactly that easy, right? It wouldn't be a question of like, grab a Medtronic pump, but I get to slap a Dexcom sensor on or you know, buy or anything like that, right? It's not No, Kevin Sayer 24:42 no, it's not that simple at all. And in all fairness, I think Dexcom has done a better job and design our product to be interoperable better than anybody else. And I can give you a very simple example. I tried to close this many years ago. Our transmitters designed to talk to multiple devices at this Same time to more than one. And that took a lot of time and a lot of engineering and a lot of dollars. And so I raised the question, why are we talking to multiple things? Let's just talk to one. They all kind of like I should know. Well, now think about things. Now you can talk to your tandem pumpers. You can also talk to a phone app at the same time. What a wonderful feature for our patients. And what a wonderful feature as our software changes or gets an advanced feature, that maybe our pump partners or a pen partner or somebody else doesn't have be able to talk to both is a wonderful opportunity for our patients if they want to use both apps. And I think over time, particularly as we look at refining your software experience, it seems to be more important. Stacey Simms 25:41 Last listener question was about compression lows. I don't know if what they're really called. But anecdotally you sleep on the place for the Dexcom is the circulation slows or for whatever reason you get a fake low. I'm sure you're all aware of this. are you addressing it you think it will be cleared up with the G7 Kevin Sayer 25:59 I don't know. It'll be completely cleared up for G7, I would hope it decreases because, and I can only speak from a theoretical perspective, the sensor is smaller and the transmitter is less bulky. So there might be less pressure pressed on it. But compression has existed in all sensors forever. I have asked the team to look at other ways to deal with the compression issue and come up with some ideas. And they have some very good ones. It wouldn't be in the first version of G seven. But I we've got a couple of thoughts that I won't share, because they're very proprietary. I think we have some good answers for compression over time. The question becomes, though, Stacey, and this gets back to the patient experience. And since your listeners are familiar with us, if it's compression low, do we still alert you and wake you up and tell you to roll over? Or do we guess what your glucose value should be and just keep going? What is much safer is to alert you and wake you up and say you're having a compression error roll over? It's not a real low. But do you all want to be woke up for with that type of error or would you rather is Wait for a half an hour and say I was just compressions con, these are the kind of things we shouldn't talk about, and contemplate within the engineering group, which is why these guys want to work here. It's really interesting. Stacey Simms 27:10 Hey, there's so much information that is coming out at hga that we haven't even touched on. And I you know, as you listen, I will link up a lot of the information. There's the GE six, two year anniversary study. There are a lot of information about the hybrid closed loop partnerships that's coming out. I'm curious, the launch of the G six Pro. Honestly, I'm not sure that too many listeners of this podcast would use a product like that, whether it's blinded or they just get it temporarily from their their provider. But talk to us a little bit about that. Who is that for? What was the demand like for that? Kevin Sayer 27:42 Well, the demand on that has been huge. And the demand starts in the physician offices. And literally, if you think about Dexcom, our pro product right now is a g4. It's not even g five and our physicians have never had the opportunity to be able to say to a patient, let me Let you have a CGM experience similar to what you would have if you're one. So for your audience in particular for patients who would like to know what CGM is like the physician can output a unit on it. This is exactly the G six system. The G six Pro is a transmitter to sensor in a single box. Patient wears it and it's disposed of at the end of the sensor where period, the reason you have the blinded app physicians have asked for it. We think for patients unblinded is obviously the way to go because they can learn what to do with their own management. But the fact is, for a physician, there's a baseline check as to, hey, how's my treatment working? Or how's this treatment working in a type two non insulin taking patient in particular, you can put that sensor on blinded for a 10 day period and get a readout and go, wow, this is working and this is not so the audience is very much from an educational and therapeutic perspective. In the professional environment. We have priced it in a manner to whereby the physicians can really acquire this at a reasonable cost. It will also be you know, at As you look at what's happened with COVID, as well, taking newly diagnosed patient and telemedicine, you can put a patient on this professional system. And if the patient uses the date alive, the physician can use the data live. As we've gone through the the virus situation, the the learnings we've had from our physicians about how CGM actually works. It's been really interesting. I mean, I get phone calls, do you know I can watch my patients from home I didn't know you could watch your patients from home and clarity, we reduce the three hour time lag, we've got near real time. And that's helpful. So you know, in this new age, where you have telemedicine and all the information that physicians need to get, we think g six pro fits in very nicely and we want patients to be able to have that experience and learn what index comm is like rather than than other things and learn the information they can get ultimately for us as timing range becomes the measure. Now let's take it a step further. If you're a physician and your key measure Simon range Your patient doesn't wear a sensor, you can just put a blinded Dexcom on him, send him home for 10 days and come back, download it, you can read it. And you know what that patient assignment ranges. It has a number of great uses for us and will be a platform for growth going forward, we think is going to be very, very, very important. Stacey Simms 30:16 I didn't realize it hadn't been updated since g4 that makes a lot of sense. No. And then before I have to go one more quick question. Last time we talked, we talked about CGM in hospitals. I know how long but how is that program going? What is the feedback? And can you talk about how widespread it's been Kevin Sayer 30:33 able to come? We've had interest from many, many well over 100 hospitals close to 150. And we're in quite a few of them. The interest has been great. It has taken more time for us to do this than we would have thought when we started. when everything started happening very quickly. We were getting requests from hospitals and people didn't quite know what CGM was but read about it that we literally thought 10% of our production might be going to the hospital and it hasn't been that great of a demand. We've learned the intricacies of hospital operations with respect to it and GE, we're sending you free phones fuse the sensor and you guys don't want to use them because you don't know if they're HIPAA safe. We've had to learn all these steps along the way. But where are we got it, and where it's up and running? Well, the results have been everything we'd hoped for the sensors performing the way we want it to it's accurate. We haven't seen major problems due to drug interference, which was a concern that has been an FDA concern over time, the ability of the healthcare providers to monitor from in the hallway, a finger stick administered by a healthcare professional, somebody timed it for many other days, about 15 minutes because you got to gown up, put on gloves, go stick the finger, okay, if you're doing a finger stick an hour, you're saving 15 minutes of nurse time every hour. For every patient, they don't have to stick the finger on. There's been a huge reduction in PPD. The patients are getting off the insulin drip faster because their diabetes can under control more rapidly. are leaving the ICU faster. They're going home healthier, all the outcomes. We hope for happening, the speed of which the uptake has been slower than we would like, but it is still going on and people are still expressing interest. And I, I think based on the places where it has been, I don't think anybody's going to let it leave. Particularly while we sit and anticipate what could possibly happen in the fall, we are going to gather data. And when we can gather data and get enough data to whereby there's a meaningful submission, or at least a discussion, we'll take that and we'll discuss it with the FDA and decide what next steps would be to get the labeling and to get a hospital usage approved. I think the products always belong there. I went through an experience personally with my mom many years ago, she had a heart valve replaced and it took them longer to get and she had type two diabetes. It took them longer to get her glucose under control than it did to get her heart valve and all the other pieces of her recovery then it was fascinating. I mean, they kept coming in adjusting insulin dosage, taking it up taking it down. And I kept saying I have something we could put on her to make It's easier, and no, no. So I do think it belongs here. It's a great use for the product. Stacey Simms 33:06 That's really interesting. Well, Kevin, thank you so much for taking some time to talk to me about this. A lot of things happening at once. And I always appreciate your time. And when you start the G7 trials, I know that we all go through the official channels, but you know, call me We'll get my son and Kevin Sayer 33:24 hey, we appreciate I always love to come on on your show. We always have a great discussion, and I'm happy to deal with any questions that come up. You know, I don't hide. Stacey Simms 33:33 Yeah, I appreciate that very much. Unknown Speaker 33:40 You're listening to diabetes connections with Stacey Simms. Stacey Simms 33:46 For information at Diabetes connections.com. As always, at the episode homepage, we do have a transcript as well if you prefer to share it that way if that's helpful for people that you know, easier to read it than to listen and just to be crystal clear, if it wasn't paying 100% choking. At the end of that interview, I could no more get into a clinical trial by talking to Kevin Sayer than I could, I don't know, get Benny a better wrestling birth by going to the NBS Linux department of his high school. I mean, I don't know about you, but that's not how it works for me. And we joke all the time being Penny never been able to get him in a clinical trial. We keep trying, I'm signed up all over the place. Maybe the word is out on what a pain in the butt I am. But I would love to get him in one of those. So we'll keep trying, but interesting information there. And I will link it all up at the episode homepage. Tell me something good in just a moment. Let's talk about baseball. But first diabetes Connections is brought to you by Dexcom. And you know, when we started using basal IQ a couple of years ago, that's the Dexcom G 610. to pump software program. I was so happy with it. And then with control IQ. It's just amazing. less work. better results with diabetes with a teenager. I mean, Benny always liked seeing his face GM numbers on the pump, right? We got that pretty much right away with tandem. But honestly, it was just more of a cool feature he really took us pump out to just look at it. There's some secret sauce, though, in first basal IQ and now control IQ, right? That just really is incredibly helpful. His range time and range has increased significantly, his agency has come down significantly, you know, I don't talk about specific numbers. Holy cow. Of course individual results may vary. To learn more, go to Diabetes connections.com and click on the Dexcom logo. Intel Tell me something good this week. This is a cool story that just because it's a cool story on its own, but I was alerted to this because in one of the Facebook groups I'm in, a mom posted a picture and this picture had to be at least 10 years old, maybe 1215 years old, of her son on a baseball team with another little boy both kids with type one and the other little boy was just dropped By the Milwaukee Brewers, Garrett Mitchell was selected 20th overall in last week's draft. Now, there's a lot of information here about baseball, I don't know. But I like this sentence, many heads a left handed hitter projected as going into the top 10. So the early take is the Brewers got a gym who dropped further than expected. And then they go in about like, well, his power numbers, and there are questions about this. But Wow, I'll link up one of the articles where Garrett Mitchell is quoted, and he really did talk about it. He said, You know, a lot of these teams, it did come down to diabetes, what teams want to deal with that, you know, what teams are comfortable with that? And he says, personally, I don't really see this challenge. You know, there are a lot of people who questioned him, but he says, I know how my body works. I know what I need to do. And he has been dealing with it since he was a young child. And I think it was really interesting that the story I'm reading this from isn't from a diabetes publication. It's not a profile on jdrf. There's lots of those and I hope we hear much more about Garrett Mitchell, but this is just a regular sport. story where the diabetes stuff comes way, way, way down in the article, so congratulations to him. Thank you for those of you who alerted me to this on Twitter, which is always great if you see something good like this, please tag me let me know. And of course we are efforting an interview with Garrett Mitchell because why not? I would love to talk to him. If you have Tell me something good story. If your child is starting to play sports, and I mean, forget about hitting a home run, you know if they just get through the game, and you don't run on the field. I'm kidding, but I'm not kidding. The parents know what I'm talking about. Right? If you have a Tell me something good story big or small. Let me know this is my favorite part of the show. Every week. I love sharing your stories. You could email me Stacey at Diabetes connections.com or just tag me on social media and tell me something good. Before I let you go more Ada stuff is coming. I am excited to have interviews on tap with a lot of other technology companies and we'll be sharing those in the weeks to come. There's a lot of stuff to unpack here. I also want to let you know and this is kind of selfish and I hate that these are all the same time every year but I guess this is a word season so I want to give you a heads up that the we go health and the independent podcast awards are coming up in a thankfully it's not a vote everyday situation I hate when people do that just just awful that they asked you to get your listeners to vote every single day What a pain in the ass for I'm not gonna win anything with that attitude. But I have been nominated for a we go health award on the voting for that, which is basically just please go ahead and like me on the wiegel Health site will open up in July. And I will be putting that out on social media, the independent podcast awards. We've been very lucky where some wood that I can knock. We have been named a top 10 Health podcast. That's a nationwide independent podcast award every year since the podcast launched and I love keeping that streak going. So I will be asking for your help there as well. Again, it's just a vote once please. And there's lots and lots of podcasts to vote for. Same with legal health. There's lots of categories to vote for. So if you know somebody else in the diabetes community or there's a podcast Guess that you like you'll be able to nominate and vote for them there. So more to come on that just thank you very much. I hate asking but that's the only way to do it. All right, thank you to my editor jump, you can start audio editing solutions. Thank you very much for listening. And Stacey Simms. I'll see you back here next week. Until then, be kind to yourself. Unknown Speaker 39:25 Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged Transcribed by https://otter.ai
Melissa and Kevin Lee played an important role in what we know now as NightScout and the DIY movement. Their interest was initially sparked because they wanted to have children. Melissa lives with type 1 and Kevin has an engineering background. They jumped in with many other "hackers" to create what we know now as Nightscout and other DIY systems. By the way, the Lee's children are now ten and eight! Check out Stacey's new book: The World's Worst Diabetes Mom! In Tell Me Something Good, wedding bells for a T1D couple – which spark some fun stories from others in the community.. and an update on a change my son made after our last episode. Join the Diabetes Connections Facebook Group! This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Sign up for our newsletter here Listen to our "Steel Magnolias" episode about pregnancy, type 1 diabetes and community featuring Melissa Lee, Kerri Sparling & Kyrra Richards here. Find all of the "We Are Not Waiting" episodes of the podcast here #Wearenotwaiting ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription: Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes. By Real Good Foods, real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:19 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:25 This week, Melissa and Kevin Lee played an important role in what we now know is Nightscout and the DIY movement. It's kind of hard to remember but those early days very different. Melissa remembers what it was like the first time Kevin for husband followed her numbers and acknowledged what a hard day she'd had. Melissa Lee 0:45 And I didn't realize I just looked at him and he said, this is how every day is, isn't it? And like I still get chills thinking about it. They say it was the first time that anybody outside of me or another person with diabetes looked at I said I see you. This is hard. Stacey Simms 1:02 Melissa and Kevin were interested initially in the DIY movement because they wanted to have children. Their kids are now 10 and eight. We have a lot to talk about. And tell me something good wedding bells for a couple who live with type one. And that sparked some fun stories from others in the community. plus an update on a change my son made after our last episode. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of Diabetes Connections. I'm so glad to have you here. I'm your host Stacey Simms we educate and inspire about type 1 diabetes by sharing stories of connection. And this is a story of connection. Melissa and Kevin have so many wonderful anecdotes to share about finding the DIY community about those early exciting days about the projects they worked on. And we talked about what it's like as a married couple to go from not sharing any information. about diabetes to being some of the first people to be able to see CGM information, you know, how does that change your relationship? How do you talk about it? And we'll get to that in just a couple of minutes. It was great to talk to them. I wanted to bring you up to speed first, though, on something that I mentioned. Well, Benny mentioned it when I spoke to him last week. So Benny is my son, if you're new, he was diagnosed right before he turned two. He is now 15 and a half. And we talked last week about changing a bit of our routine, he has been taking a long acting insulin called Tresiba for almost two years along with using an insulin pump. It's a method called untethered, I'm not going to rehash the whole thing. I've talked about it many times. But if you are new, that will link up more information in the show notes and you can go back to listen to last week or previous episodes with Benny about why we did that. bottom line he was using so much insulin because of puberty and maybe some other issues genetics who knows that it was very, very helpful to add an additional basal source that took the pressure off the pump inset, but Over the last month, his insulin use has gone way down. And that is because of three factors. He's probably coming out of puberty, he has lost a lot of weight. And we are using the control IQ system, which we noticed right away meant we were doing far fewer big corrections and we just used it so much less insulin on it. So during the show that the last endocrinology appointment, Dr. V, had said it was fine to go off the Tresiba, no problem, do it when you want if you want, and Benny said that he did want to do that. So as I'm taping this, it's probably about eight days since we made this switch. It takes about two to three days everybody's a little different to get Tresiba out of your system. It works a little differently than some other long acting so it takes longer to get out of your system. We did have a rocky three days but we were used to that we knew that was coming and just as I had hoped control IQ the software system with the tandem pump and the Dexcom just has worked even better than it did before and I don't talk about specific numbers with my son. That's not how we Roll, but just to give you some perspective has been about 70% in range, you know, it goes up, it goes down very happy with that number. He has been 80% in range, I think 82% in range for the last seven days as an average and two days where he was like 98% in range. It's crazy. So I don't think that'll continue because that's how diabetes works. Right? Don't you find sometimes it like lulls you, when you make a switch, it always starts out great, and like a week or two later floor like the rug just pulled out from under you. So we'll see. I want to get to Melissa and Kevin. But at the end of the show, I'm going to talk a little bit more about some changes we've made recently, in addition to Tresiba, we have changed how we use sleep mode. So stay tuned at the very end. I'm going to talk about that. But I know not everybody uses control IQ. So standby Diabetes Connections is brought to you by Real Good Foods. It's really easy to compare and see what we love about Real Good Foods. If you put them side by side to other products, I mean their breakfast sandwiches, six grams of carbs, 18 grams of protein compared to like, you know 2636 grams of carbs in other products and a lot less protein and a lot more junk. If you look at their cauliflower crust pizza, you It's amazing. Not every cauliflower crust pizza is actually low in carbs, you know this you got to read the labels. So Real Good Foods, nine grams of carbs in there cauliflower crust pizza. Some of the other ones have 3540 grams of carbs. I know everybody eats low carb, but you know, you want to know what you're getting. You want to really be able to see, well if I'm eating a cauliflower crust pizza, you might as well eat you know, a bread crust if you want 40 carbs per serving. Real Good Foods is just that they are made with real ingredients, you know stuff you can pronounce. It's so easy to find. They have that locator on their website, it's in our grocery store. It's in our Walmart, and you can order everything online, find out more, go to Diabetes, Connections comm and click on the Real Good Foods logo. My guests this week are part of the history of the diabetes DIY movement. longtime listeners know that I am fascinated by the we are not Waiting crowd. And I can't say enough about what they have done for our community. In fact, I'm actually trying to put together an oral history. And we've talked to a lot of people since 2015. When I started the show about this movement. The big problem is a lot of these wonderful engineering and tech types are a little spotlight adverse. You know who you are, but I'll get there. I did reach out to Kevin and Melissa, because, you know, I've talked to Melissa a few times about pregnancy and type one and other issues. I think that the show we did as a panel with other guests about pregnancy in type one and Steel Magnolias is frankly, one of the top 10 episodes, not because of me, but the guests are so amazing. And that night gets so much praise on that episode, people, you know, women pass it around. I'll link that up in the show notes. But you know, I hadn't heard Melissa and Kevin's story, and their names always come up when we hear about the early days of the DIY builders. So our talk today is about much more than the technology it's also about marriage and kids and diabetes and sharing data. You know how that affects your life. Quick note, Kevin now works for Big Foot biomedical and Melissa works for tide pool. If those names don't mean anything to you, if you don't know what those are, or you know what they do, might be a little bit of a confusing interview. There's some presumed knowledge here, I will put some links in the show notes, you may want to go back and listen to previous episodes about the we're not waiting movement or just check out the links. Also, it is really hard to get people to acknowledge the difference they've made. These are all very modest people. God loves them, but I do try. So here's my interview with Kevin and Melissa Lee, Melissa and Kevin, I am so excited to talk to you two together. Thanks for making time to do this. I know how busy you both are. Melissa Lee 7:43 Thank you for having us on. This is a fun thing to get to do. Stacey Simms 7:47 I don't know if Kevin's gonna think it's that fun. We'll see. And I say that because in the small way that I know you you don't seem like you're quite as conversational and chatty is as we Melissa, well, we'll see how it goes. Kevin, thanks for joining us and putting up with me already. Melissa Lee 8:04 Well, you know, he actually is until you stick a microphone in front of his face. Oh, okay. You know, beyond that, yeah. Stacey Simms 8:12 Well, let's start when when you guys started, and Melissa, I will ask you first How did you meet? Melissa Lee 8:17 Oh, this is a story I love to tell. And Kevin's gonna already be like, why did I agree to do this? So this was like 2006 and I spent a couple of years doing internet dating. And you know, I'm very extroverted and and like a go getter. And I had just been on, like, 40 bad days, basically, on the internet. Basically, I was broke from spending money on lots of different dating sites, and I found a free one. But during that one, it turns out that this guy was on it because one, it was free. And two, he liked their matching algorithm that tells you a little bit about why you needed so we met online and then What a year and a half later, we were married. Wow. So yeah, we were married in late 2007. At the time, I was a music teacher. And Kevin, how would you describe what you did in the world? Kevin: I was working at Burlington, Northern Santa Fe, just deploying web applications as a contractor to IBM. And then in our early years, you worked for capital, one bank doing infrastructure architecture, and then later for American Airlines doing their instructor architecture. So we like to say, you know, we've been in finance he's been in travel is been in transport. He's been in lots of different fields doing that same thing that I just said infrastructure architecture, which I will not explain. Stacey Simms 9:44 So, Kevin, when did you go from checking out the algorithm of the dating app, to noticing that perhaps the diabetes technology that your girlfriend and fiancé and wife was using, when did you notice that it really could be done better. And then you could do it Kevin Lee 10:02 became a little bit later. And it first I kind of just let her her do her own thing. She managed it. She managed it well. And then as we started to progress, and we both wanted kids, Melissa Lee 10:16 yes, we got back from the honeymoon and I had babies on the brain and two of my bridesmaids were pregnant. And then I have this whole, you know, in our pregnancy podcasts that we did together, I had babies on the brain, but I had this diabetes hanging over me. And I think that that was a huge motivator for both of us. So like mid 2008, my insulin pump was out of warranty. Kevin Lee And so that's that's whenever I really started to encourage her and I started getting involved and saying, hey, let's let's go experiment. Let's find what's what's right. Let's look at what else what other options exist and didn't find too many other options but no, we I did switch I switched insulin pump brands and we started talking about this new thing that was going to be coming to market called the CGM. Melissa Lee So I got my first CGM within the next year. And Kevin immediately started trying to figure out how it works. So this was the freestyle navigator. And this was like 2009. I think I was maybe already pregnant or about to be pregnant. And Kevin was trying to hack this device. Stacey Simms 11:25 So what does that mean? When you said you started to figure it out? What did you do? Kevin Lee 11:29 Well, it bugged me that the acceptable solution was the we had this little device that had a range of measured in the 10s of feet. That was it. And I had a commute. At the time, I was working at American Airlines and my commute was 45 miles one day daily, and she was pregnant, and I just wanted some sort of assurance that she was safe and there was no way to get that and I just wanted to be able to You know, it was obvious that this center was sending the data that I wanted on the available through an internet connection. How do I get that? Ultimately, that effort was unsuccessful. And that's when we started going to friends for life. And there, that's where we saw I guess Ed Damiano’s connected solution where there's remote monitoring, and we saw the Dexcom. And that's whenever I thought, hey, if that's an option, and so we started looking into the Dexcom and switched over. Stacey Simms 12:39 I'm gonna jump in because I'm a little confused. When you said you said Damiano’s connected set up, I thought that he was showing off what is now called the iLet and the new the bio hormonal insulin pump. What was the Dexcom component to that that you hadn't seen before? Kevin Lee 12:54 So it was just a simple remote monitoring, you know, he needed to be able to as part His research to be able to remotely monitor the patients that were well, Melissa Lee 13:05 specifically, he had an early version of the bionic pancreas had a Dexcom that was cabled to a phone. Oh, and so if you look back at like, 2012 And so like he I remember Kevin holding the setup in his hand and looking at it and being like, you know, this is fascinating. Like, I have an idea. Stacey Simms 13:30 Because at the time and I'll find a picture of it, but it was cable to a phone. And there were at least two insects from the pump. So you had to have the the CGM inset and then you had to have two pumping sets and then the phone cable for the bionic pancreas at that time. Am I thinking of the right picture? Kevin Lee 13:45 No, I really should see all of that. Melissa Lee 13:49 You know, like we're so old at this point. Like, like eight years ago now I wasn't realizing because how have my children are but this You know, I want to say that this was even before we'd have to go back and back with them. Kevin Lee 14:05 Yeah. And that was just the moment that hey, okay, this is another alternative. And we were, we were actually looking to switch at the time because I think that's when the note and I switched. Melissa Lee 14:17 Okay, we had to switch because navigator went off the market in 2011. So this is right around the time, we just switch to that. Unknown Speaker 14:24 So what did you do with the Dexcom , Kevin Lee 14:26 whenever we noticed that there was a little port that was also used for, for charging and for data, I connected to it and started reverse engineering it sending data and seeing what we got back and trying to get that data off. It was first connected to my little Mac MacBook Pro. And I just had a goal over Thanksgiving to be able to get that data out of the CGM. And it took three or four days and I was able to get basic data out of the system. In premiere, it was just as simple as uploading it, and then visualizing it. Stacey Simms 15:06 So for perspective, and I want to be careful here because I know there were a lot of people working on a lot of different things. I'll be honest with you. I'm not looking for who was first or when did that happen? Exactly. But just for perspective, is this basically the same thing that we then saw, like john Costik, put up on Twitter when he said he got it like on the laptop? Or, like, what would we have seen if we had been sitting in your house that day? Right back to Kevin and Melissa, but first, you know, it is so nice to find a diabetes product that not only does what you need, but also fits in perfectly with your life. One drop is just that it is the sleekest looking and most modern meter I family's ever used. And it's not just about their modern meter setup. You can also send your readings to the mobile app automatically and review your data anytime. Instantly share blood glucose reports with your healthcare team. It also works With your Dexcom Fitbit or your Apple Watch, and not to mention, they have that awesome test strip subscription plan, pick as many test strips as you need, and they'll deliver them to your door. One drop diabetes care delivered, learn more, go to Diabetes connections.com and click on the one drop logo. Now back to Kevin answering my question about what does it look like when he figured out how to reverse engineering the free the Dexcom data. Kevin Lee 16:30 Absolutely that we would you would have seen a little text flying by saying this is the the glucose number. Yeah, on the on the computer. It wouldn't have been very exciting to most. And from there, Melissa tweeted out saying hey, we have the data available from our Mac and I guess that's where Joyce Lee picked up on it and wanted some more information. Stacey Simms 16:55 All right. So Melissa, take it from there. Melissa Lee 16:56 Yeah, you know, Joyce has been a real champion as those early days. Why date and so I remember her reaching out to me and saying this is this is really interesting. I want to know more. And in this was the same year that Dana and Scott were bringing their thing to life with what was then DIY APS. This is around the same time, same era in history that, that john Costik was doing his great stuff and with Lane Desborough and the early days of Nightscout, so all of these things were happening in these little pockets, and we were just another little pocket at the time. One of the things that concerned us was whether we were doing something that was going to be shut down really quickly, like there's something that you find knowingly or unknowingly, it's kind of like when you agree to the terms on iTunes. So when you use these devices, there's something called an EULA and End User License Agreement. And these eu la say, you're not going to reverse engineer this product. And so we were a little cautious about what we wanted to diseminate in terms of like your take this and run with it, but that culture was still developing. And so at the end of that year was the big d-data event at the diabetes mine summit, where there were a few really key DIY influencers sort of in the room. This is where Lane first coined the we are not waiting and, and the next day I was at that summit, and I was hearing Howard Look speak about what had happened at the d-data summit the day before. And I was like, Oh, my God, Kevin has to plug into this. So we want to help this initiative. Like we want to be a part of this. We have so much to offer we this whole remote monitoring setup that he had built for me. And at the time, like by then I think one of the biggest things we have done is Kevin has developed do you want to talk about glass. Kevin Lee 18:51 Yeah, it was just a another way to visualize the data. So Google Glass, I don't know if you remember that. It was a kind of a connection eyeglass. Yeah, in some ways, it was ahead of its time in other ways. It was just a really interesting idea. I got a pair, and I was able to have it alert me when she crossed the simple threshold. And I was able to see historically three hours or 12 hours or whatever it was without having to pull up a web page. It was just kind of always there and on available for me if and when I needed it. So it was just kind of an ambient thing in the background that I didn't feel like a I had to worry about. Stacey Simms 19:38 Interesting. Kevin, I'm curious in those early days, so if I could just jump in. You know, you you don't have type one. You care very much about someone with type one and you're doing this because you care about her and want to make sure she's safe. When you started meeting other people who were doing the same thing. What was that like for you? I know it's chancy to ask an engineer about how they feel but it had to have been nice to get kinship with these other people who basically spoke your language and also understood the importance behind what was going on. Kevin Lee 20:07 Yeah, so that was actually really kind of interesting whenever we first started sharing that we wanted to share it just with a small group of people. And I think it was Manny Hernandez that introduced me directly to Wayne and Howard and a few other Brian Maslisch. Melissa Lee 20:28 yeah, so I like to tell the story that I chased Howard Look down in the hallway after that, and was like, you have to connect with my husband. And then that didn't seem to work. So that's when Manny was like Manny Hernandez, who was the founder of Diabetes Hands Foundation. He is a good friend of ours and he was like, No, I have to connect you to these guys. Kevin Lee 21:15 And so there's this pivotal email thread from January of 2014, where we started exchanging The well, here's the project that I've done and Lane says, Well, here's a project that that we've been working on and we call it Nightscout. And so we, we kind of exchange notes. And then it was a little bit later that Lane, well, maybe not lane. Exactly. But that's when the the whole CGM in the cloud and the Nightscout. Early foundations started to show up on on Facebook. I think that's whenever another engineer had published the code on GitHub, and started to set appears. Here's how you set it up. Well, there weren't many in my situation, you know, one of the engineers was a parent. And I think we actually made a really great mix. And I think that that's part of what made the successful so one of the engineers working on the project was A father of a type one I represented the spouse and some of the other engineers were personally affected by by type one, and definitely added a different level increase the camaraderie between us. Those are early days we were were on the phone almost nightly. As soon as I get off my my day job, I'd go home and work on the evening job of trying to get the next set of features out or to fix some new fixes. I love to describe this day because throughout 2014 he would walk in the door and he was already on the phone with the other devs from night out. And if I walked in the room where he was working on the computer, I would be like, Hey, Kevin, and then I'd be like, hey, Ross Hey Jason, because I assumed that they were on the phone. Hey, Ben. Melissa Lee 22:56 Like it was staying up all night long. They didn't sleep. They did this all day long. Kevin talk a little bit about the pieces you brought in tonight that from our system that we created, and then we like I, I have two producing diabetes data. I'm not gonna, I'm not gonna claim a lot of that. But I was just plugged into it. If people are familiar today with Nightscout, which many listeners may be like, what piece did they hold in their hands? That was yours. Kevin Lee 23:26 So the the piece that I was so connected with was the what we refer to as the uploader. It was just a piece of extracted the data from the CGM and then uploaded it to the Nightscout website. The early days. I don't know if you remember it was the little 3d printed case with a phone that you got that happened to have a data plan and a wire connected to the the CGM. Right whenever Nightscout first came out, I was I was hesitant to start I mean, this was like the first few months I was hesitant to contribute. I wanted to see What I could do, but as it started to pick up be there, it was obvious that the pace of development that I was doing on my own was not going to equal what the rest of the community could be doing. But then he and I had these other features, which I'll go into in a moment here that I felt the community could benefit from. So we started having early conversations with Ben and others. How do we fold in functionality that I had into the current uploader, that functionality was essentially the early ability to follow on a native phone app, it was decreasing the size of the packet and uploading more so using less data. It was an Android watch, being able to get the latest data on an Android watch. It was used in camping mode. I don't know if you're familiar with that. But the early days of knights count we had the pebbles that We're kind of Bluetooth connected smartwatch, that use the little EEG displays. Those required you to be connected to the internet. And one of the devs Jason Calabrese had said, I'm going camping next week. And I'm not going to have internet connectivity. And I sure wish that that I could. So I thought about it for a minute. And were able to quickly reconfigure it the existing code to be able to get that data on the watch without an internet connection. So Stacey Simms 25:32 camping mode literally came from a camping trip. Yes. Kevin Lee 25:37 Jason Calibrese’s says camping trip. Melissa Lee 25:40 So well, and then the code that became xdrip which like thousands of people use today. Kevin Lee 25:46 So that's, that's a great thing about open source community, whatever ideas reverberating off of each other and become more pronounced and it essentially becomes the sum is greater than the whole. Unknown Speaker 25:59 Let me ask about xdrip, though, was it originally called Dexdrip? was that one of the first times Dexcom got involved and said No thank you, or did I miss remember that, Melissa Lee 26:10 that was all part of Emma Black’s history. Emma took the code that Kevin and created and, and created built on top of that to create Dexdrip. And Dexcom did say you can't use our name and became accept yeah that you're remembering correctly. It was a very friendly discussion. And so it was renamed to xdrip. But you bring up an important point about how industry was reacting to all of us in late 2014. The team at Medtronic actually invited many of the community members who were working on that into sort of the belly of the beast, and to come in and talk to them about the why and the challenges and the what could industry do and and What are we not hearing and just sort of like a meeting of the minds. But what was so cool about this is this is the first time that many of us had met one another in person. So here, people have been working on this for a year or two. And now suddenly, it's a table with Dana Lewis and Scott Lybrand with john Costik with Ben west with me with Kevin, with Jason Calabrese, like we're sitting around a table for the first time and talking with industry as this United Community. So it felt a little less, to me, at least as someone who's been really involved in fostering community, right? It felt to me like there's the start of something here. And that was a really exciting meeting. We like to joke that nothing came of it. I was gonna ask about that. But to me like that was exciting. It was this energy of like, we all came to the table and said like, these are the needs of the community. This is why we need remote monitoring. And this is what we're gonna do next. And you can either help us or understand we'll do it anyway. And so that was that we are not waiting spirit. Stacey Simms 28:08 Well, and that was a very pivotal time. And, Melissa, let me just continue with that thought if I could, it was such a pivotal time, because you all could have said, we are not going to continue without you. Right? We need this. But it seemed to me and again, it's hard to for me, you know, it's funny that it's so long ago now. But it's only four. It's like, it's only five or six years ago, really? The seeds of that community. And you can see it just in the Facebook group with CGM in the cloud and everything else. There's 10s of thousands of people now who are part of this community. You know, did you saw the seeds if it Then did you ever imagine it was gonna get as big as it is now? Unknown Speaker 28:48 Is it crazy to say yeah? Kevin Lee 28:54 to directly answer the question. Yes. And that's where we were actually Faced with a another really tough decision of how do we continue to solve these problems? And we started to see the scalability problem that what we viewed as a scalability problem within the community. How do we continue to support it? And how do we deliver this safely to masses? It was a choice that we had to make of if we're doing the industry and we, we try to do it this way. I don't know there, there isn't really one right or wrong way to do it, but it was just a another way. And we believe that by joining the industry that we could deliver something simple, easy, and we could make it scalable and supportable for the masses. Melissa Lee 29:44 I think those things like those meetings with Medtronic or, or Dexcom, early on. I mean, I remember sitting in Kevin Sayers office at Dexcom and I was there for a completely other reason. I was there on behalf of Diabetes Hands Foundation said and I just like went off about night prayer. But those conversations gave us a really like I want to recognize my privilege in that to be able to be in a position to go sit with leadership at these big diabetes device companies. But let us see that there was a way to bring the change we were doing outside. I don't want to use the word infiltrate because that sounds to infuse what industry was trying to do with community perspective and patient perspective and and the change that we knew was possible. And that resulted in both of us for huge career changes. Stacey Simms 30:43 And we will get to that for sure. Because it's fascinating when you mentioned and you know, we're doing a lot of name dropping here. And if you're if you're new to this and you've listened this far, I promise. I will be putting a lot of notes on the episode homepage and you can go back and listen to other episodes, but there's a lot of names that have Gone By. And a lot of names that you mentioned are people who either founded or were instrumental in the founding of newer independent companies that came out of at least as I see it, this DIY wave that happened in the mid 2010, that you all are talking about. And now you both, you know, you work with these companies and for these companies, but I want to continue this the scalability, as you mentioned, because it's remarkable that even as all those companies, I mean, Big Foot tide pool, you know, even as these companies came out of this, you're still servicing all these, and I'll call us lay people. I mean, I, you know, most of the people who were early adopters of Nightscout or things like that seem to have some kind of engineering background or something that helps software makes sense. But then the floodgates opened, and it was just easy for people or easier than it seemed for people to do that. Kevin, was there a point that you kind of remember looking at this and thinking, you don't have to be an engineer. Kevin Lee 31:59 That's actually part of the reason why I continue to contribute with Nightscout and in the early days, we decided we were going to go ahead and launch on the Play Store. So we set up an account. And you know, instead of having to go out download the source code, compile it, we distributed it is via the channel that users were used to receiving their their app from. Another thing that we introduced was the barcode scanning. So what we found out was set up of the app was a little more complex than it needed to be. And so we introduced the the concept of barcode scanning to set that up, Melissa Lee 32:42 which now exists in the commercial like every time you start a new transmitter on a Dexcom system today, you scan a barcode on the side of the box. Kevin did that. I remember, I'm not claiming but next time did not develop that on their own. I am just claiming Hey, we.. yes. Unknown Speaker 32:59 out Yeah. Stacey Simms 33:02 Yeah, that's wild. I did. Yeah, I was thinking about that. Because now that's, of course, that's how we do it. And Melissa, I know I'm kind of jumping around here, but I have so many questions. I wanted to ask you earlier. What was it like for you? At this time? You said, Well, I just provided the data. I mean, what was it like for you during this time other than, you know, just popping in and saying, Hey, honey, how were the phone calls going? It had just been exciting and a little nerve racking for you. What was it like, Melissa Lee 33:30 by my count, and again, Not that it matters? I think I was the first spouse to be followed. Sounds creepy, doesn't it? I was the first CGM stocks 4000. Now, um, but one of the things, it did a few things for me, and I'll never forget one day I was in the kitchen and I've got babies and toddler and lay like it had just been a day right when you're a young mom, and you've got Little ones and it has just been a day and Kevin walks in and he said, and you've had a really hard day and I just looked at him like, Are you an idiot? Yes. And I was like, What are you talking about? And he was like your numbers. Oh, and I just looked at him and I didn't realize I just looked at him and he said, this is how every day is, isn't it? And like I still get chills thinking about it Stacey I like it was the first time that anybody outside of me or another person with diabetes looked at me and said, I see you this is hard. And I didn't even know like I probably said yes, you idiot I've had a hard day Unknown Speaker 34:46 I doubt it. Kevin Lee 34:48 I had worked on some some code to make Nightscout available via personal assistance. Think the Alexa and Google Home and, and other things. And while I was experimenting and testing it, it became very clear that I was not allowed to ask what what those values were. Melissa Lee 35:14 He was like, it’ll will be so handy. And if you're in the middle of cooking and you've got like, you know, stuff on your hands, you can just ask it. But like, what you don't do is you know, your wife snaps at you. And you say, Alexa, what's her blood sugar right now? Like, that is not what you do. So now the story I was going to tell Oh, Stacey, you're gonna love this one. So this is like early 2015. And I am the Interim Executive of a nonprofit and I'm representing patients at this endocrinologist a meeting, and I'm alone in a hotel, and I had been out with all these endocrinologists and we've had tacos at a bar and I have no idea what my glucose was, but I had calibrated my CGM with probably tacos all over my hands. I go to bed. Well, this poor man, I'm in Nashville. He's in Dallas. This poor man is getting Kevin Lee 36:09 the blood sugar was reading his 39. Yes, for those who don't know, is the world. The CGM can read anything below that he registered Melissa Lee 36:19 as low. I have my phone on silent because I've been out with all these professionals. So he had called me 18 times. It didn't go through Sunday night disturb so far in two hours reading, like a 39. So hotel security burst into my room. Mrs. Lee, Mrs. Lee, are you okay? Do we need to call an ambulance, this string of expletives that came out of my mouth? I will not repeat on this good family show. But I was so mad and you know, I'm calling him and I'm like, I'm like 130 right now. Fine. by that same token, I have lots of like really lovely stories where You know, I'm alone in a hotel in New Jersey, and he wakes me up in the middle of the night to say, you know, wake up and eat something, honey. So, yes, there is a good story, but I must prefer the story where he had security break into my room. Oh, my God over over what nights? That was it. So, you know, but to your question, we really were on the very bleeding edge of understanding things that you actually already deal with, with your son today and that people deal with today in terms of how will we actually establish boundaries on how much of my data you get to react to and for all the times that it is a benefit? Where are the times where it's like, no, I actually have to cut you off. We're now like seven years into him following my data. And so in some ways, I think we both see where people will get to when following data is the norm you know, should it ever scale by Live in terms of now, he doesn't look at my data all the time. Now he knows when to respond when it weren't so good. But it made me feel understood. It also made me feel a lot safer to know that just have somebody else watching my own back. I'll be celebrating 30 years with type one this year and celebrating is, you know, you've been away there. But like to know that like somebody else is just there to pick up a little bit of slack you have for someone like where you are, it can be hard because I know when teams don't always appreciate or show their appreciation in the same way. But there is an appreciation for the fact that that you're there to pick up a little bit of slack just as much as there is resentment and issues with boundaries. And in times when they really need to just shut your assets off. And so I feel like we're just a little bit further down that road in some ways, you know, we'll let you know when we have it all figured out. But Exactly. And what's right for us as a couple is not necessarily going to be right. For every couple, you know, there are couples that really feel like, no, my data is mine. And I don't trust you not to react to it in a way that's going to make diabetes any harder for me. And I think that that's what we 100% have, that I'm very fortunate to have is that I trust Kevin, to react to my data, the way that I'm comfortable with him reacting to my data. Stacey Simms 39:33 So both of you, through this process wound up not only having two kids, but you made big job changes. And you now both work in the diabetes sphere. And I hope you don't mind I'd really like to talk about that a little bit. Because I mean, you mentioned the beginning. Listen, you're a music teacher. And you're right, your background, your music professional. You are Bigfoot for a couple years and now you are a tight pool and you're basically I'm going to get a But you're helping tide pool so that they can better train people and kind of explain to healthcare professionals and the public to kind of I look at that as translating, is that sort of what you're doing there? Melissa Lee 40:12 Yes or no. So for instance, I know your family has just started with a new piece of diabetes technology. There were certain training modules that were there to support you. There's certain learning materials that were provided to your child's doctor so that they understood what they were prescribing. There's a user guide that comes with the stuff that you use in your family today, if you're buying things from companies off the shelf, and what the DIY community when we're talking about scalability, and how important that is to each of us having a knee accessibility, scalability availability like these important, how do we bring this to people in a way that they will actually be able to access tide pool announced about a year ago that they were going to take one of the DIY, automated insulin dosing systems and actually bring it through FDA review. Part of that is it has to have the kind of onboarding and support materials that your insulin pump he buys a medical pump and has today. So I am leading the development of all of those materials for both the clinics and the doctors, as well as for the end user to learn the system. Stacey Simms 41:30 And Kevin, you're still a big foot. So you're a principal engineer there. What excites you about what you're doing there? Is it again about the accessibility because I know you know, Bigfoot is not yet to market but people are very excited about it. Kevin Lee 41:41 Yeah. Accessibility is one of the large parts and reliability going through the DIY stuff. It's happening at an incredible pace change is happening there and things break things don't always go the way that you intended. There has to be balance there somewhere? Well, you have to have services. I mean, look at what happened recently with server outages and different companies, you have to be prepared for how am I going to support this time, I'm going to keep it running, you know, whatever the it is, it's that the reliability, we're all we're all human, that's humans behind the scenes, making the the changes and improvements that we rely on. So how do we do that safely and effectively as possible to minimize the impact and continue to increase the value to the user? Stacey Simms 42:37 This might be a very dumb question. But Kevin, let me ask you, Melissa mentioned the the new software that we're using, and she's talking about control IQ from tandem, which is the software that we've got now. And there are other commercial quote solutions. There's other commercial systems coming out when you look back at all the stuff that the DIY community did, and is continuing to do. Do you feel like you guys really, really pushed it along? I mean, I gotta tell you and I know nothing. And I never even used Nightscout and people laugh at me. But I think we would never be close to where we are commercially. Does that add up to you? Kevin Lee 43:12 Yeah, it adds up. It's not for everyone. You know, it is bleeding edge, the community, in a lot of ways drives industry. Stacey Simms 43:21 You I'm not asking you to say specifically without this wouldn't have that. But it just seems to me that we would have gotten there eventually. But I don't know that the people behind Knight Scott and so much of the other things you've mentioned, really either got into industry and help push things along or helps with the FDA. You know, is it as kind of an outsider on this. Can you speak to whether that's true? Kevin Lee 43:44 Yeah, absolutely. I think that it had you I mean, that's the nature of competition. There was an unmet need in the community and the unmet need was was fulfilled. Melissa Lee 43:55 Well, what I would say is industry needs to see that something viability as an idea and so, I firmly believe that many of these things were floating around in companies as potential developments in the pipeline. What the community did with our DIY efforts is say, we are so desperate to this thing, we will just build it ourselves if you can't deliver. And so I think it helps prioritize like I've seen almost every company in the industry actually skip over other things that were in their pipeline to get to these things and reprioritize their own product roadmap to try to deliver. And I don't think it's, I it's not in a Oh, we better get this or the community is going to do it themselves way. It's a, okay, this is a real need, and we should, we should focus our resources on this. A lot of ways it's a playground for industry to concepts, live and die much more quickly in the DIY community than they do and it allows you to to iterate faster and find out what does and doesn't work, open source communities have existed outside of diabetes, obviously, it's a and throughout the last few decades, we've seen what happens in the open source world actually drive change in the industries to which they're associated. And so I think there are analogies to this in terms of like, what happens in the software industry, with personal computing with consumer electronics, so I don't, I don't find it at all odd or ridiculous to say that the DIY community and diabetes has actually resulted in change within industry. I mean, if only if, like you pointed out so many of those names, but we, you know, we're dropping them because we want to see people recognized for their extraordinary contributions, right. But all of those people, many of them have gone on to found companies, invent new things, join other companies. What's your Modeling about open source communities, regardless of field or genre or whatever is that you see that you see new people roll in with new ideas and lay new work on the foundations of code that were left behind and innovate and continue to innovate. And so we will see the DIY community around forever, they will continue to innovate. And we will also see many of those innovators move on into the industries in which they're working. This is a personal choice that they have to make them they'll go through the same decisions that we did. And not everybody. Well, I mean, Dana lewis is not associated with the company. We're not saying that that's an inevitability, right? But it's pretty common. You have to be pretty geeky probably to know of other open source communities. And I'm, you know, Kevin is way more well versed to speak about that, but in the way of fan Stacey Simms 46:56 before I let you go, this all started because you wanted have kids, right? This this is the timeline that you set out from your weight the beginning here, and your kids now they're both in grade school, your daughter's 10, your son is eight. I'm curious, do they know their part in this story? Because it's not an exaggeration to say, and I'll say for you, it's not an exaggeration to say that you wanting to have kids sparked action in Kevin, that, frankly, has helped thousands of people. I know you didn't do it alone. I know. I know. I know. But your kids know the part that they played Melissa Lee 47:31 to a degree like they know that we help people with diabetes. And they take that really seriously. As a matter of fact, when I was changing roles from my role at Bigfoot to my role at tide pool, my daughter's first question was like, but you'll still be helping people with diabetes, like will Bigfoot still be able to help people with diabetes like yes, it's all it's all good. We're all good. We're all still helping people with diabetes and they've grown up with these things in the sense that we love to tell the story of when our son was about three years old and he would hear the Nightscout song that would was basically the alert that would play. And he knew that when I was low, there was a bag of sour ball candy on the top shelf of the pantry that came down. So he would hear that sound that Nightscout song and that song was sour balls to him and he was “sour balls sour balls!” he was all in or maybe like two I mean, he was little It was too and so like it became the sour balls song, right? You know, the other day he heard the Nightscout will song play and he said mom who undid that song and I posted something to Facebook. Well basically lane desborough and better that song or found it. I wrote something about like I just set my son down. I said, let me tell you the story of our people and how we came to the valley of silicon you know, which is of course not the way I said it to an eight year old but as you know amusing myself But essentially, you know, there is some of these folks that they literally do talk about uncle lane and Uncle Manny and Uncle Ben and like my daughter thinks she has a lot of uncles. But, you know, so they know that we've helped a great many people. And as they as they get older, and we can sort of expound on that, then I think, well, let's be honest, they won't care. For a while, right? teenagers will be like we shut up about, oh, they'll care. Unknown Speaker 49:30 They just want to know they care. Melissa Lee 49:34 Someday, they'll appreciate it, and a different way, but that's what they know. Now, Stacey Simms 49:40 Kevin, you also said this was about your commute, making sure Melissa was safe. Knowing that Melissa is a very strong and independent woman. Do you feel like she's safe? Did that check that box for you all this hard work? Kevin Lee 49:53 Yeah, absolutely. This is kind of something that she went into earlier, but I really view the monitor. That I've done and the work that I've done is really just augmenting and trying to simplify and make her life easier. We first started dating, I actually told her that you will never find somebody work harder at being lazy than than me. And, you know, that was just the testament of I wanted to automate all the things that are just repetitive and predictable and easily managed to try to get that out of the way. And that comes from the background of operations and managing online sites. Being able to automate those those aspects have helped me feel like it's more safe. And then you know, other times like with with monitoring, it's great to be able to just see that you know, she's about to go out for a walk and then I happened to look over at Nightscout see how much insulin she has on board and where she is and say, you might want to run a temp basal. So it's just there. To try to augment and help her navigate it. And so yeah, it does give me a sense that she's safer because of this. Melissa Yeah, that's right. I got really mad at him the other day, he was right. I was like, whatever. And I left the house and I went massively low. I was walking the kids to school. I was like, Yeah, well, fine. So you know, there's that two parents completely unfamiliar to you. And Stacey Simms 51:21 it sounds more like my marriage actually diabetes or not. That's just a component of marriage. Yeah, she was right again. Oh, oh, well, you know, thank you so much for spending so much time with me. I love your story. I just think that there are just amazing people that I hate have diabetes. But I'm glad if you had to that you've done so much for so many others who have it as well. And I really appreciate you spending some time to tell us these things from years ago now because they're really are important as we move forward. So thanks for being with me. Melissa Lee 51:56 Thank you so much for being interested in the story and for help. Others here are cranky, Stan. Unknown Speaker 52:08 You're listening to diabetes connections with Stacey Simms. Stacey Simms 52:14 Much More information at Diabetes connections.com you can always click on the episode page and find out more transcript is there as well. I just adore them. I know the interview went longer than usual, but I couldn't help myself. And as I said in Episode 300, when I looked back on 300 episodes, Melissa really helped change my place in the diabetes community by inviting me to speak at master lab in 2015. That really did change how I felt about where I want it to be helped me find and focus my voice. I really can't overstate that enough. So thanks Melissa, for doing that. And again, lots of information went by very quickly let them name dropping there in a good way. And I promise I will keep on the Nightscout crew. I may ask some of you as you listen to lean on your friends, I'm not going to mention any names here. But people that I have reached out to, and they're the usual suspects. If you search, we are not waiting, or Nightscout on the website, you'll see some big omissions. So I'll talk more about that on social media, we'll get them as a community. Maybe it's just me, you know, who's fascinated by this. But I do think it's a very important part of our history that we need to document because in a few more years, many of the solutions that people like Kevin were working on are going to be all commercial and all FDA approved. And isn't that wonderful, but I don't want to forget what happened. And I think it'll be great to look back. Okay, enough about that. I got Tell me something good coming up in just a moment. And then stay tuned. Later, I'm going to tell you another change we made to how we use control IQ with Benny, but first diabetes Connections is brought to you by Dexcom. And it is really hard to think of something that has changed our diabetes management as much as the Dexcom share and follow apps. I mean, what really amazed me we started it when Benny was about nine years old, the decks calm and we got shareable. little less than two years later, and the most immediate change was how it helped us talk less about diabetes. And boy did that come just in time for us because that's the wonderful thing about share and follow as a caregiver, parent, spouse, whatever, you can help the person with diabetes managed in the way that works for your individual situation, and going into those tween and teen years. It sounds counterintuitive, but being able to talk about diabetes less what's your number? Did you check what's your number? You know, so helpful. Internet connectivity is required to access Dexcom follow separate follow app required learn more, go to Diabetes connections.com and click on the Dexcom logo. I am cheating a little bit this week for Tell me something good because while I usually read you listener submissions, I saw this on beyond type ones Facebook page, and I just had to share they did a whole post about people with type one getting married and they wanted Hear the wedding stories. So they started out with a a big Congrats, by the way to Kelsey, her husband Derek, and this adorable picture of them. They're both low at their wedding and they're sipping some juice boxes. And Kelsey is part of the beyond type one Leadership Council. So congratulations to you both. It's a really adorable picture. I'm gonna link up the whole Facebook thread because people share stories like you know, I had my pump tucked into my bra and I didn't think I needed during the wedding or I was a bridesmaid and I had it there and I had to reach in, um, you know, other people who went low trying on wedding dresses. I mean, I remember this. So this person writes, I went low in David's bridal trying on wedding dresses. It's a lot more physical than you think getting in and out of dresses and slips, hot lights and just emotions. My mom had to run across the street and grab a Snickers. I was standing in the doorway of the fitting room and inhaling a Snickers, praying I didn't get any on the clothes, which just added an extra level of stress. I remember a Polish ties into the employee helping me and he was like I don't even worry about it. And he stayed with me to make sure I was okay. Another woman writes my mom came up to me right before we were set to walk into the reception. She told me she had hidden a juice under our sweetheart table in case I went low. I've been diabetic 30 years and my mom still carry snacks for me in her purse. Sure enough, right after dinner, I ended up needing it. And the last one here, being excited, nervous and unable to sit still. I did a long and intense bike ride prior to my evening wedding. Luckily we had a chocolate fountain at our reception and I spent a large chunk of the night at or near it, and this goes on and on. So what a wonderful thread congratulations to everybody who is talking about their weddings and their their wonderful stories of support. And the humor that's on display here is amazing. So I will link that up. You can go and read there's there's dozens of comments. If you've got a story like this Hey, that's what Tell me something good is for send me your your stories, your milestones, your diversities, your good stuff, you know anything from the healthcare heroes in our community. With cute who put his first inset in to a person celebrating 70 years with type one I post on social media just look for those threads. Or you can always email me Stacey at Diabetes connections.com. Before I let you go, I had promised to share the other change we made to control IQ. In addition to eliminating the long acting basal that we had used, you know, untethered for almost two years, we decided recently to completely turn off sleep mode. I know a lot of you enjoy sleep mode 24 seven, as we said back in our episode, gosh, in late December, when control IQ was approved in the studies, they called you folks sleeping beauties, because you enjoy that 24 seven sleep mode. But I found that since school has ended, and we're trying to figure out what to do with Benny for the summer, there is nothing really that's keeping him on a regular sleep schedule, and it's gotten to the point where he is now so nocturnal, and I'm hearing this about a lot of my friends with teenagers. Maybe I sound like a tear. Parents go to bed at like four or five, six o'clock in the morning. I walked into his room at eight o'clock in the morning the other day, I wanted to ask him a question. I was like, I gotta wake him up and he was awake can come to sleep yet. You know, it boggles my mind. It's all topsy turvy. And we'll get back into a routine at some point, but I'm not really willing to make a big fuss about it. He's key is keeping busy overnight. I guess his friends are up, I don't know. But anyway, the point is, he's eating it really weird hours. And when he was in sleep mode, we noticed that it wasn't helping as much right because it doesn't bolus you in sleep mode. It only adjusts Faisal. So if you under bolus for his you know, Pad Thai at two in the morning, it wasn't helping out and true story. I asked him about that. Like, what's this line? And what happened overnight here, were you sleeping He's like, No, I was in the kitchen eating leftover Thai food. So we decided that his numbers during the the quote, day when he was sleeping, we're hovering right around 90, maybe a 110. I mean, it was very in range, right? No need to mess with that. So I didn't think we needed to add sleep mode. And I did want to predict when he would actually be sleeping. So we just turned it off. And that has made a big difference too. So I guess the bottom line is figure out what works for you for your individual situation, the weirdo wacko situation, if it's us, but you know, use this technology to benefit you, whatever way that is, if it's sleep mode right now, 24 seven, if it's no sleep mode, it's exercise mood all the time. And it'll be so fascinating to see. And this ties back into the DIY movement, right? It'll be great to see the flexibility that we will get in the next couple of years because, you know, Medtronic had a tie a higher target range, because they were first with the hybrid closed loop. tandem has a lower one Omni pod, we'll have a more flexible target, you can set your own target when they come out with horizon and of course, tandem and everybody else is going to be moving to that direction as well. And it just keeps getting better. But it gets better because people like Melissa and Kevin Lee pushed and pushed and without these folks, and there's so many of them, of course, right who said we can do it better, we would not be where we are. I truly believe that technology companies would be five or six years behind and if you're new To the show new to the community and you're excited about, you know, control IQ or horizon or whatever you're using. Or maybe you're using, you know, loop off label with Omni pod, I would urge you to go back and check out our earlier episodes from 2015 and 2016. And learn about the really early days of the community, obviously, by 2015. We're talking about things that happened in the early 2000s. You know, I don't want you to misunderstand that. That happened in 2015. But you know what I mean, okay, obligatory book commercial. And if you've listened this long, you maybe you own a copy of the world's worst diabetes mom, if you own it and love it, do me a favor post about it. The best way to word of mouth about the podcast and the book is always if you could tell a friend post in a diabetes group post on your own Facebook page, you know, I love this book. It's on Amazon, highly recommend it. If you've read it, and you don't like it. Forget that, you know, you know, just recycle the book. It's thanks as always, to my editor, john Buchanan's from audio editing solutions. And thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself. Unknown Speaker 1:01:09 Diabetes Connections is a production of Stacey Simms media. Unknown Speaker 1:01:13 All rights reserved. All wrongs avenged
If you're feeling extraordinary stress because of events in the news, you're not alone. This week, Stacey talks to Dr. Mark Heyman about simple things people with diabetes can do to manage better (and give themselves a break). Dr. Heyman is a diabetes psychologist and the Founder and Director of the Center for Diabetes and Mental Health. He was diagnosed with type 1 while in college. Check out Stacey's new book: The World's Worst Diabetes Mom! In Tell Me Something Good – parents going an extra mile to make their kids feel included and a big challenge ends but we'll talk about "T1D 24/7" This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Join the Diabetes Connections Facebook Group! More information on mental health and diabetes: ADA Behavioral Diabetes Institute ----- Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes, and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:17 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:22 This week, let's talk about stress. And let's talk about the not so great effect it can have on diabetes. Now you're in a cycle of not just physical issues, but emotional ones, including guilt. Mark Heyman 0:35 The guilt comes from I think a lot of times people feeling different or still don't. They're all alone, and that everybody else with diabetes is doing great. And I'm the one who is having trouble. Stacey Simms 0:46 Dr. Mark Kaman is a diabetes psychologist and founder of director of the Center for diabetes and mental health he was diagnosed with type one in college, we're going to talk about some simple things we can try to do to manage the stress that these days Seems to be unrelenting in Tell me something good parents going an extra mile to make their kids feel included and a big challenge ends This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I’m your host, Stacey Simms, really glad to have you along. If you are new, we aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed with type one right before he turned to he is now 15. I don't have diabetes, but I have a background in broadcasting and local radio and television news and that is how you get the podcast. This is not the show that I thought I would be doing this week like many podcasters I have an editorial calendar I don't always stick to it, obviously. But I have things planned out and I have interviews that are you know in the can waiting to be aired, but I thought this was a really good Subject to talk about right now. Because as I just said, I don't live with diabetes, but boy, we are all living with stress. And I thought, what are some things we can do to figure out how to better live with diabetes or with you know, whatever your health issues might be, everybody has something, I have my own autoimmune disease, how can we just take care of ourselves in a time where this news, as I said, just seems to be unrelenting? So I put in post in a Facebook group Diabetes Connections of the group, which I hope you're in, by the way, if you're not, please join it. You know, I was really worried about her everybody was holding up. And so we talked about self care. And we had a really nice thread of comments. Of course, that's still there in the group. If you haven't seen it yet, take a look at your own, maybe get some advice from it. But I also I decided to call in the experts, and I very much appreciate Dr. Heyman jumping on with me. We hadn't talked before. He was more than willing, and I'm sure we'll have him back on again, and I'll get to his interview in just a minute. But first Diabetes Connections is brought to you by One Drop and One Drop is diabetes management for the 21st century. One Drop was designed by people with diabetes. For people with diabetes. One Drops glucose meter looks nothing like a medical device. It's sleek, it's compact, it seamlessly integrates with the award winning One Drop mobile app, sync all your other health apps to One Drop to keep track of the big picture and easily see health trends. And with a One Drop subscription you get unlimited test strips and lancets delivered right to your door. Every One Drop plan also includes access to your own certified diabetes coach have questions but don't feel like waiting for your next doctor visit. Your personal coach is always there to help go to Diabetes connections.com and click on the One Drop logo to learn more. My guest this week is Dr. Mark Heyman. He is a diabetes psychologist and a CDE and the founder and director of the Center for diabetes and mental health Mark was diagnosed in college right before I mean immediately to weeks before he had a long planned trip to Paris, and he talks about that we get to that at the end of the interview, and I asked him a little bit about his diagnosis story. But I wanted to talk to mark about how we can handle the mental load that has just been relentless all of this year, I'll come back at the end of the interview and just tell you a little bit more about how I've been handling things I've done some things I think are good. And some things I know haven't really been helping, but we'll talk about that after the interview. Here's my talk with Dr. Mark Heyman. Dr. Heyman, thank you so much for joining me. I'm so eager to hear what you have to say. And I know you're busy. So thanks for jumping on. Mark Heyman 4:37 Thanks for having me, Stacey. Appreciate it. How are you doing? Stacey Simms 4:41 I know, that probably wasn't the first question you expected as the psychologist but, you know, Mark Heyman 4:45 how are you doing these days? You know, I'm hanging in there. It's you know, I think that it's a strange time to be a psychologist as well as to just be someone living in this world. You know, we're, you know, we're all kind of trying to process the news on a daily basis. And, you know, I have A 16 month old middle daughter, so trying to take care of her and juggle my work and childcare and kind of all of the stress there. So I think overall, I'm doing pretty well, but definitely am feeling the stress and stress of what's going on with COVID. And with the rise and with the the unrest that's happening right now. So thank you for asking, Stacey Simms 5:20 Oh, my goodness. Well, it is, as you say, it's such an extraordinary time. And there's really no words left anymore. It's such a cliche, right? We all get those emails in these challenging times in these extraordinary times. But as you said, we've had this COVID situation for months now. It's sort of built on low boil, and I think we kind of learned to live with it in the background. And then of course, the events of this past week. Protests, riots, questioning a lot of people, even if they're not physically doing things and leaving the house, trying to figure out, you know, where do I stand? What do I want to say? We're all on high alert. Where are you telling people that you're speaking to to, to kind of I don't want to say Step back, necessarily, but maybe break it off into smaller bites, what do we do? Mark Heyman 6:05 Yeah, I think there's a couple of things that we can do. The first is recognize that everything that we're feeling right now is normal, that anybody else in that same situation would be feeling would be feeling unsettled and unrest, feeling stressed about, you know, what's going on in the world right now. I think oftentimes, we have these situations where we feel we're feeling something and we feel guilty for feeling it, I shouldn't feel stressed, I shouldn't feel I shouldn't feel x. And I think that taking a step back and recognizing that, you know, these feelings are really normal. The next thing is really to talk to other people and to be able to vent to have some have a sounding board table to get your feelings out. Because that doesn't necessarily make the feelings go away, doesn't make them better. But certainly to be able to share about other people and get get affirmation and get validation for those feelings, is a super helpful thing that we can do as a way of processing And then also taking a step back. And, you know, recognizing that Yeah, the world is in a in a tough spot right now. But also, we don't have to over engage with what's happening. We have we taking a step back and taking a break from social media sometimes just that taking a break from the news can be a really helpful thing to give yourself some perspective. So that when you dive back in and learn about what's what's going on in your car, take start thinking about what you might be able to do to help the situation. You can see that from a fresh perspective. Stacey Simms 7:33 Yeah, I think especially in a time right now we are we are being challenged to pay attention. And you know, and I can only come to this through the lens of what I have, which is a white suburban mom, right? You know, we're being challenged, pay attention. You know, learn, speak up, let other people know what you're thinking. But that doesn't mean be on twitter. 24 seven, that doesn't mean you have to watch all of the news is that what I'm kind of hearing you say Mark Heyman 8:01 Yeah, I think that one thing that we think is that if we that we want to be in control, not necessarily of the situation, but certainly be in control of our feelings and be in control of our, our environment. And I think that one one thing that one way that people try to get control over those things, is they do something called over engage, they engage with the news, and they end they get involved with it, because they feel like the more that they know that and the more that they see the the ever changing landscape, the more control they'll have. And I think that that's a it's a certainly a valid point. But there's also some of the downside to that. Because Because as you're following Twitter, you know, constantly, it's stressful, and you're constantly looking for the changes, and that's stressful. And the reality is, is that on a minute by minute basis, nothing's changed. Nothing's changed in a sense that is going to really probably change what you do or how you react and so yeah, take take a step back and and recognize But over an aging doesn't actually help with your stress and sometimes they can actually make your stress worse and you know, increase it as well. Stacey Simms 9:11 All right, let's bring diabetes into this because that's really you know, this is all about here on Diabetes Connections. And I don't live with diabetes, but I am I'll be honest I'm worried maybe it's a mom thing and I see the people in my Facebook group and I'm we're part of this larger community you live with type one. I mean, stress is bad for anybody but on top of type one diabetes. I'm gonna sound like a hypocrite because I was talking to this with my husband last night and he was pointed out I live with an autoimmune condition. I have ulcerative colitis laughing at me like why are you worried about diabetes you have to take care of yourself to which I really not, I'm not eating great. I'm not exercising like I normally do. So again, bringing back the focus to diabetes, but I guess any chronic condition you live with type one. Are you feeling more stressed? On top of diabetes Mark Heyman 10:02 Yeah, I definitely am. I'm definitely feeling more stressed because I mean for lots of reasons one is that you know, I you know, I'm a stress eater so when you know when I when I'm stressed out and when I'm around food like that's that's one of my coping mechanisms for better or for worse and so that doesn't do great things for my blood sugar's also just stress in general is definitely impacting my blood sugar's but I'm seeing you know a lot more variations than I had before as well as sleep certainly my sleep isn't great because of the stress right now and when when out sleep while my blood sugar's definitely are hot running higher which makes me not feel great but also makes me more frustrated. So you know I'm a I work with people with diabetes and help them manage their stress. I certainly have a lot of those same stresses and so it can be a challenging a challenging thing to balance. One thing that I've done to really, really kind of helped myself is a couple of things one I had been really intentional about exercising. Luckily, I have a little bit of flexibility in my schedule and so I'm able to exercise on most days and I find that starting my day off that exercising helps my blood sugar's and also helps my stress. Also just cutting myself some slack and being kind to myself around my blood sugar's recognizing that, you know, I'm doing everything that I can to manage them the best that I can. And sometimes they're not gonna cooperate. And that's true anytime, but especially to when we're in a time of stress, where with all these other variables going on, just, you know, being kind yourself and giving yourself some grace and some slack can be really helpful and recognizing the time will pass. And that that will that may be a time where we can be much more intentional about our diabetes management, but also, it'll be smoother sailing, hopefully, because the stress won't be a compounding variable there. Stacey Simms 11:53 Well, and that's such a great point because I was going to ask you and you pretty much answered it, but you know, when when someone With with tight diabetes control or someone who really is trying to manage Well, you know, if they have a very stressful time like this and their management, I'm gonna put this in air quotes, you know, slip. So you're seeing higher numbers or more variation. And then I think a lot of people have have guilt on top of as well. How do you deal with the guilt and not blame yourself? You mentioned trying to like dial back and see the bigger picture, it's not gonna last forever. Is that one of the things you'd recommend? Mark Heyman 12:29 Yeah, I also think that, you know, connect with the community, whether that's on Facebook or Twitter or Instagram or in real life you can and recognizing that everybody else is going through the same thing and everybody else is having, you know, more erratic blood sugars right now. It's really valuable because the guilt comes from I think a lot of times people feeling different or feeling like they're all alone, and that everybody else with diabetes is doing great. And I'm the one who is having trouble and that's why I try to be really Open about you know, the challenges that I have with my blood sugar's like with like with my patients off kind of take out my phone and show them my CGM graph and show them that my blood sugar's are nowhere near perfect, because it makes them feel like you know, it takes some of that thing of that guilt away of recognizing that Yeah, I can certainly make better choices sometimes. But diabetes has a mind of its own and being okay with riding those waves is is critical for our mental health. Because if your only metric of success is keeping your blood sugar between those lines, and yet the only way you can not have stress in your in your diabetes life is by having perfect blood sugar's you're setting yourself up for failure. So we need to have a different way of looking at it. Stacey Simms 13:45 Every once in a while mark, I'm just I'm stopped. I I can't even imagine what it is like to to live with type one just so much that you have to do and I have somebody you know, I have my kid in my house that I've we've accepted for 13 and a half years and everyone's While I keep thinking, gosh, it is really such a burden. But that's neither here nor there. You know, but just to hear you put it like that. I'll probably take all of that out. Mark Heyman 14:08 But the way, let me say something there is, I actually try, I actually encourage people not to use that word Burg, because it kind of becomes a self fulfilling prophecy. You say diabetes is hard. It's such a burden. And you're right, I'm not gonna argue with you there. But then you, but then we won't talk about how big of a burden it is. It kind of gets it makes it it snowballs and grows and becomes bigger. And I think that when we say, you know, we have all of these things going on, we have diabetes, and COVID, and the George Floyd and all of all of these confounding things. And we say in diabetes becomes even bigger, a bigger burden. It's almost like this expectation that it should be, and sometimes it is, sometimes it's not, but we don't want to have people get to a point where they say, Well, I had diabetes and therefore this automatically means that you know, You want to I always give people the space to be able to, you know, see whether it's a burden or not, but not automatically assume that's going to be. Stacey Simms 15:08 I love that. And I'm always working on being better at language. And I really appreciate that. You know, it's, it's, it's one of these things where, you know, you want to help and every once in a while, you know, you really, I slip on that, so I appreciate it. Um, but, but Okay, so but let's keep going on that right. Okay, so I'm a caregiver, I guess a little bit less so because my son is 15. And it's like when he was two when I was doing everything with him. Any advice for me, in addition to not standing around saying this must be such a burden for you? How can I upload, right? I mean, which he's doing great. He's got his own way to manage stress. We're talking a lot. He does exercise quite a bit, which has been really helpful. He's connected with friends, but as a parent or caregiver or spouse, any advice for us so that we're not putting more stress And the person we're trying to help. Mark Heyman 16:02 Yeah, I think I think take a step back and recognize that you know, that he has it, he's got this taken care of and that you're certainly there to help him in whatever way that you can. But from what you're telling me, it sounds like he's doing really well, doing really well without responsibility. And so, and you know, when you're in, but certainly kind of the same thing about, you know, over engaging on Twitter around the protests right now. I think that over engaging with your son around diabetes, especially when there's not a whole lot you can do right now. I mean, because you're doing really well. That's add stress to you. And so if you're able to kind of take a step back, take a step back and not over engage with it doesn't aggravate him, but also gives you some space to recognize and also gives you space to recognize that but also see that he's doing well and give you the confidence that you need to continue to get that debt back because as she grows up and it goes to college Sunday Jimmy great scope for you to have. Stacey Simms 17:02 We're working on it. Mark Heyman 17:05 It's a never ending process. Stacey Simms 17:08 That's great advice. Um, what are some small changes that you might encourage people living with diabetes in these crazy times to do? Mark Heyman 17:18 Yeah, so a couple of things that I would recommend, I mean, just like just a simple tip is, you know, one of the things that is that people have really struggled with, that I've been talking to, over the past three months when we've been in quarantine is kind of the routine has been pulled out from under them, so they don't have to go into work anymore, they may not be able to go to their favorite restaurant or go to the gym. And so and diabetes can actually be a great grounding tool, because, you know, diabetes takes routine. And so making it so keeping keeping your diabetes or TF right now can be really helpful one for your management, of course, but also your mental health because if you know that every morning, going to check your blood sugar, change your CGM site every Thursday or whatever that was Is it can kind of give you some some grounding with it within your day. That's number one. Number two is do your best to stick to a fixed irregular diet. Especially, I mean, I know that this is a little bit late coming, you know, two or three months into this. But, you know, we talked about people who are who have really are having a hard time with blood sugars because they're home now and there have been a food all around them and so finding ways to kind of to to keep on eating healthy to the best of your ability and in a way to help you manager manage your blood sugar's can really, obviously make your blood sugar's more stable, but also help you manage the stress around those blood sugars. And then the third thing and this is one of my favorite tools that I that I use all the time I use it personally it also I also recommend to my patients to use is mindfulness. And what mindfulness is, if you don't not not familiar with it is being aware of your experience in the present moment without judging it. So You know, right now I feel stressed. And just recognizing Yeah, I feel stressed. You're not judging it, nothing, nothing good about it by being stressed. It just is. Right now I can tell you right now my blood, my blood sugar is 253. So I'm on the higher side. And I could I could look at that and say, I can't believe it's that high. It's, you know, I'm, I must have done something wrong. I'm an awful person with diabetes, and I just can't manage my diabetes, right? Or I can look at my blood sugar mindfully and say, Okay, well, I'm gonna look, my blood sugar's to 33. That's neither good nor bad. I feel a little frustrated with that. But that feeling of being a good or bad and just be able to recognize what you experience, because if you're able to do that, it gives you a little bit of distance from it, and doesn't let you get wrapped up in the story of what you know. What does that 253 mean about me? What is that frustration mean about me what is you know, whatever I'm experiencing mean about me because we all experience things all the time. We have thoughts and feelings and bloodsuckers, then You know, whatever all the time and be able to recognize that notice them without putting a story behind them can be really, really helpful. I think that's really also helpful for what's going on in the world. You know, recognizing your emotions and your thoughts and recognizing that those are normal experiences, but you don't the judge, you know, if you feel sad, if you feel angry, that is what you feel. And that's okay. So I'm a big fan of mindfulness. I could talk about it all day long. It really diabetes. But I think it's a really, really helpful tool, especially when things are overwhelming like they are right now. Stacey Simms 20:39 I'm trying to remember I read it, but I read somewhere recently, and it's exactly what you're saying is you know, when you are feeling out of control, and you're feeling very emotional and you're feeling angry or sad or stressed, you know, to kind of breathe into it, and let yourself feel it. And that was a revelation to me. It has helped me so much it just kind of calmed me down to hear that that was okay to do. And I guess that is a bit of mindfulness. Mark Heyman 21:05 Well, exactly, because because humans don't like to feel uncomfortable about anything. We don't like to feel physically uncomfortable. We don't like to feel emotionally uncomfortable. And so our go to strategy with those things is avoidance. We avoid, you know, you could think about doing your life you know, you want to have you have to have a difficult conversation with your husband or your kid and you put that off, you avoid it because you don't want to do it because it's not you're not going to feel good. If you go to the dentist and take them for granted. Because definitely not going to get and what would happen if you recognize that you're scared to go to the dentist or that you're that you're uncomfortable having a conversation, but you do it anyway. And notice the thoughts and feelings that you have when that happens, but you don't judge them. You just notice them and say right now I'm feeling really nervous. And that's okay because that's that's that's what anybody in my situation would feel. It doesn't mean anything about me. It just means that I feel nervous. And doesn't mean that comfortable. But it's just a recognition of what my experience is right now. Stacey Simms 22:09 I don't know if you can answer this, and I'm a little uncomfortable asking, but I think we should talk about it. You and I are not. We're not people of color. Yeah. And so I don't want to say I don't want to try to put myself in somebody else's shoes like that. But I cannot imagine the stress right now. In the not only in that community, but in the diabetes community for people of color. Yeah, I mean, you because we can say, you know, turn off the news or be careful about this. But I think it is to the point right now, where many people and again, I'm probably saying something stupid here. So please forgive me. This is my perspective from where I sit right now. But you know, you can't turn it off. It's part of who you are. I'm wondering if you have any advice, perhaps for that community? Mark Heyman 22:54 Yeah. Yeah. I don't think that I mean, I would be the only advice that I have, and I'm not sure this is great advice is to keep to keep talking. I think that I, what I've seen on this in the social media community is with people of color as well as people, you know, people, other people in the community, it's a lot of support, and a lot of like, and a lot of one of one, one, a lot of wanting to listen. And I certainly want to listen, I want to understand better because I know I don't understand, and I can't understand and I really want to try, but but I and it's going to help me to understand better if people of color in the diabetes community, continue speaking, and continue letting me letting us know what they want us to hear. Because I'm all ears. Stacey Simms 23:49 We mentioned a few small changes that you might be able to make any big changes that you'd like to see people kind of work their way up to. Mark Heyman 23:57 I think that can mean continued. This is a general But continuing to learn to learn about these issues and just continue and continue to have a thirst for knowledge and understanding around them, I think that I'm at that's, I think that's the best thing that we can do right now. And then really the most effective thing because that will hopefully not trickle but really expanding into bigger changes that we can all be a part of, and that we can all be we can all be helpful with. But I think that for our mental health, I really think that small changes are the best way of going about this, and then really trying to taking one day at a time and one one change at a time. You know, change is the big changes are so overwhelming, and they oftentimes feel impossible. And so breaking them down into smaller changes, just like we've been talking about with you know, maybe a bigger goal in mind. So maybe the question is not necessarily what what are the big changes but what are the bigger goals that we have for our mental health around diabetes, for diabetes management for our, for our inclusion, and what are the small changes that we can make that are moving us towards that goal. And certainly I can't tell you or anybody else what their what your goal should be. But I think that I think that defining that goal and really taking some time to think about that can be helpful in in helping you to define the small things that you need to make in order to get there. Stacey Simms 25:27 Before I let you go, and maybe I should have started here since it's our first time talking. Let's talk a little bit about your diabetes story because you were diagnosed in college, right? Mark Heyman 25:36 I was it was 21 years ago on Monday. So I was I just celebrated or just memories I should say my guy ever my 21st I aversary on Monday. Unknown Speaker 25:47 Correct is beer. Sorry about that. Unknown Speaker 25:50 Legal? Mark Heyman 25:53 Exactly. Yeah. So I was 21 when I was diagnosed that it was the end of my third year of college. I was at UCLA and No, I was for the for probably a month before I was diagnosed I was getting I was not feeling well and just kind of getting progressively sicker and sicker was all over the, in the typical symptoms. The problem was is I had this dream of going to France. I've been studying French for a long time. And I got I got an internship at the US Embassy in Paris for that summer. And I was, and I really didn't want to go the doctor because I was scared that they were telling me something was wrong, and I couldn't go to France. And so I put off going to the doctor for a long time. I couldn't tell you how long but it was a you know, something a couple of weeks. And finally got to a point where I just I was walking to class one day, last week on June the first 1999. And I couldn't go anymore. I'm like, I have to, I got something's got to change here. So I ended up going to the Student Health Center and I took a finger stick and it's at high. And I was like, well we know high, medium, low. By Tapi, that bad and the doctor has struck me in a chair and said Don't move. So we call the paramedics and they stopped me to a gurney. And the problem is that I was at UCLA and UCLA the Student Health Center is as at one end of the quad of a quad, but there was no road access. So the the angels had to park across the other end of the quad. And I had to be wheeled across the entire quad in front of, you know, the entire school to go to, you know, into the journey to go to the hospital. So once you tell you Medical Center, and we've diagnosed there, the next day, I had an appointment with my new endocrinologist and Peters was on call that day. And so she was she became my endocrinologist and spent a couple hours with me the next day and teaching me about diabetes and you know, giving me insulin and she's at the edge like, you know, there's other questions I can answer for you is like, well, I'm supposed to go to France in two weeks. Without hesitation like Well, of course your vote. So I want to tear it to each actor by diagnosis. I want to prepare us. I had no clue what I was doing. I would email her every couple of days my blood sugar's, but like it was, I mean, on the one hand, it was the best thing that could happen to me. It gave me the confidence that I needed to know that diabetes was not gonna stop me from doing anything. On the other hand, I was flying blind. And I survived. I was just fine, but it makes for a good story. Stacey Simms 28:27 It's a great story. Wow. And how was the How was the internship? diabetes aside? Are you glad you went? Mark Heyman 28:34 Oh, yeah, it was awesome. I mean, the internship was, you know, it was it was government work. hope we'll put it that way. Like I got, I got to live in Paris for the summer and you had a awesome apartment, the middle of the city and got to go and travel all around. And it was it was unbelievable. Stacey Simms 28:51 Sounds like a once in a lifetime. I'm so glad you were able to go. Yeah. And then how did you decide that you wanted to work in the field that you Now, I mean, how do you get from being diagnosed in college to, you know, helping other people with diabetes with their mental health? Mark Heyman 29:07 That's a funny story. So I kind of towards the end. So I majored in political science in college. And so as I was leaving college, after my diagnosis, I realized I didn't want to be a lawyer or didn't do, I didn't want to pursue anything kind of in that realm. And I came to the conclusion that I wanted to go into psychology, and a part of me wanted to do something diabetes related. I didn't, I was lucky that when I was first diagnosed, I was I was doing okay, psychologically, I didn't have a whole lot of big challenges other than kind of the normal diagnosis stuff. But I was really interested in you know, how this affects other people. So I did some research, and realized I wanted to become a psychologist, but not specifically around diabetes. However, to get into graduate school in psychology, it's really competitive. And I use a story. And so diabetes him like a good story to tell about how I wonder what people with diabetes and so I took That story, not really thinking that would ever come true. And it kind of did. I went to and I did research in diabetes, I saw patients who had diabetes, and I realized Not only do I love doing it, but it's also a huge need. And so, you know, I love it. It's a lot of fun, and it's really challenging. But I feel like I can use my own personal and professional experience to really make a big impact in people's lives. It's wonderful. Unknown Speaker 30:27 Okay, and I have to ask you, you said you have a toddler. You have a baby. Mark Heyman 30:31 Yeah, I have. I have a 17 month old. Yeah, it's wonderful. I was born last January, and now she's, she's walking and she's just starting to talk. And it's so cute, but it's a lot of work. Oh, that's fun. Stacey Simms 30:43 have you all been, you know, at home for the last couple of months together? Mark Heyman 30:47 We have. Yeah. So even though we had childcare we had my parents are in town here. So my parents were helping us out a couple days a week and we had some nanny help. But once this all happened, we kind of isolated ourselves entered just now getting back into letting my parents take care of her again. So, which is a great relief. But it's been, it's been a lot of fun and a great blessing to be able to spend time with her over the past couple months, but it's also it's taken a toll on, you know, my work and my I mean, my ability to do work that I need to be doing. So it'll be good to when we can get back into a more normal routine, hopefully real soon Stacey Simms 31:25 as we start to wrap this up, you know, we've we've kind of, I guess we've scratched the surface on managing stress and diabetes, it really is a never ending issue, is it? Mark Heyman 31:34 No, it's not. I think that we have I think that we have a lot more questions and answers here. You know, especially both both with Russell diabetes, as well as, how do we live it live in this kind of crazy world we're in right now, as well as living in this crazy world with diabetes. And so, you know, I wish that I had all the answers, but I think that we need to keep asking the questions because without the questions, we're not going to get any answers. Stacey Simms 31:59 Mark, thank you so much. Spend some time with me. I'd love to have you back on to answer maybe some listener questions and go through more of this. But thank you so much for your time. Mark Heyman 32:06 Oh, you're so very welcome. Thanks, Stacey. Unknown Speaker 32:13 You're listening to Diabetes Connections with Stacey Sims. Stacey Simms 32:19 I'll link up some more resources about mental health and diabetes, including Mark's website. And I said I was going to talk a little bit about some things I've been doing. I'll tell you the best thing that I have been doing to manage this stress is walking my dog. I walk my dog just about every day, and we don't walk particularly quickly. Boy, she would love it if I would run with her. I'm not a runner. And we are very, very fortunate to live near Greenway. So I'm able to escape. It feels like an escape, I promise. I mean, it's just green, and it's usually pretty quiet. It's getting very hot here. I'm in Charlotte, North Carolina. And most people who walk and run do it very early in the day or later at night. I don't mind it so much and I'll go out you know, 1011 o'clock in the morning. They have the place to myself. I'm careful with my doggie and we make sure she has water and all that stuff. Don't worry about her. But walking the dog listening to podcasts, sometimes listening to nothing really helps. And on those walks, I do not listen to news. I do not listen to news podcasts. I do not listen to serious issues. I listen to stupid comedy podcasts, like Game of Thrones podcasts, and some other fun ones. You know, pop the group, maybe we'll make a podcast list of things to listen to when you want to distract yourself. Another thing I do that I do think helps is about half an hour before I go to bed. I try to do an hour but I'm kidding myself. About half an hour is I disconnect from Twitter and Facebook. I'm in bed, you know it's late. I'm seeing so much later than I was before this, you know, it's almost midnight, but I'll stop looking at the news. If I'm not really ready to go to sleep. I'll read a book for a little while or I'll play Solitaire on my phone. But I'm done. Sometimes I cheat. I mean, sometimes gosh, there's been nights you know, especially last week where I just I felt like things were changing moment by moment and I needed to see and I know that wasn't healthy, but I couldn't help it. I needed to know that was tough, but I know a lot of you feel the same way. And then the things I'm doing that are not so good as I'm definitely eating more junk and eating more than I was before. That was the worst for me. Honestly, back in April, I think April, I kind of felt like, ah, who cares, we're going to be indoors forever. No one's gonna see me again. And I'm just gonna wallow in this and I eat a lot of really bad junk food. And I've been drinking more alcohol, which is really unusual for me. And you'll laugh. I mean, drinking more alcohol means I'm drinking like once or twice during the week. I usually have like one or two drinks on the weekend. And that's it. But those are things that I've noticed that I'm doing because I'm stressed out. But doing this podcast helps me immensely hearing your stories. Being able to tell some stories and having something to do right. Having something to work on is really valuable. So let's get back to it. Tell me something good. I love that in just a moment. But first Diabetes Connections is brought to you by Dexcom. And we started with Dexcom back in the olden days before share. Yeah, in 2013. When Benny started using the Dexcom share it. So trust me when I say using the share and follow apps makes a big difference. Benny and I set parameters about when I'm going to talk to him about diabetes, how long to wait, all that kind of stuff. But it helps us talk and worry about diabetes less. If he's at a sleep over or away on a trip when things are back to normal. It gives me so much peace of mind. It also helps if I need to troubleshoot with him. And this is what I love. We can see what's been happening over the last 24 hours and not just at one moment. The alerts and alarms that we set help us from keeping the highs from getting too high, and help us jump on those before there a big issue. Internet connectivity is required to access separate Dexcom follow up to learn more, go to Diabetes Connections.com and click on the Dexcom logo. And tell me something good this week, I was scrolling through Facebook. I'm in a ton of diabetes groups and I mute all of them because otherwise it looks like diabetes book to me, right? It's everything. It's relentless. So I mute the groups and then I will Want to see stuff? I go back and look, I saw this in a Dexcom group and it really caught my eye. I will post the picture of it in our Facebook group for Diabetes Connections. So Dan writes, my seven year old was feeling crappy about being diagnosed and wearing a sensor. So I did what needed to be done and made him feel better with my permanent sensor. Just the outline color to come. His reaction was priceless. And yes, I cried. And this is an amazing tattoo. It's a I mean, it takes up his entire upper arm like elbow to shoulder and it's an octopus, which I'm assuming he already had. And then the sensor is kind of in the octopuses. tentacles. tentacles. That's right, right. So it looks it just looks amazing. And then people in the group, of course, started chiming in with, you know, with really positive comments for him, but also, you know, hey, I have a tattoo or I have this idea. And people started talking about diabetes tattoos. And then somebody said, which was what I was thinking because it does CG six on it. What are you gonna do when you're on the g7 in a few months, and Dan said, I don't know. Maybe another tattoo Somebody else said no, that octopus has seven more tentacles, just put it there. And I guess he's gonna come back and show the truly finished product. But it to me it looks finished already, but I guess there's color coming so hopefully we'll do a revisit and we'll show you the finished tattoo then and a follow up and I guess kind of a wrap up to something that I shared. I think I only shared this on social media, the diabetes family connection, the T1D 24/7 challenge. This was for the entire month of May. And the diabetes family connection puts on different programs they put on the diabetes camp in my area. These are the guys behind Project 50 and 50. Last summer were two guys with type one summited the highest peak in all 50 states in 50 days. And while there was a an injury and an accident, they did finish and so it was pretty incredible stuff. But their 2024 seven was a challenge that asks people to move every day for the month of May. They said you know no days off for managing T1D no days off during this Challenge. And there were some rules and interesting little things that of course, they want the people to maintain social distancing. And it was a fundraiser as well, they had a Spotify playlist. One of my favorite things about this is the warnings we all got because this playlist was not moderated for explicit lyrics. As I said, these are the guys who put in our diabetes camp. So a lot of parents on their list. We appreciate that heads up you guys. So congratulations to the diabetes family connection for a really big and well done fundraiser. I'm sure they'll be doing more like this and some of them are in our Facebook groups. So we will continue to spread the word. If you have a Tell me something good story, let me know email me Stacey at Diabetes connections.com or, you know, just give me a shout out on social media and we will get it on the show because it's my favorite part of every week. So tell me something good. If you're listening as the show was first released later this week, the American Diabetes Association Scientific Sessions is going to be kicking off this is the atheist conference for the a DA and it is their first virtual experience. What does that mean for you and me? Probably not much. I have never been to the scientific sessions I was thinking about going this year. But of course, it did not happen. But this is the time when a lot of studies come out. This is when a lot of the companies that we all follow release big news. So please stay tuned. I'm going to try to follow as much as I can on social media. We do have shows planned in the weeks to come with everybody that you would expect. I'm really excited to be able to share some of these studies. Some of these things are embargoed. But after the Scientific Sessions, I would say probably by next week, this time, I think we'll all have a better idea of where the study's on technology stand, and probably one or two surprises because every year something pops out from this thing that's either a breakthrough study or something that didn't work out and completely stopped or you know, somebody from outside the ADA scientific session says, Look at me over here, so we'll see what happens. But I hope you'll follow along. I'll do as much as I can to give you the information now, and then go in depth with the newsmakers As they come on the show in the weeks to come, thank you to my editor john bukenas from audio editing solutions. Thank you for listening. I hope you got something valuable out of today's show. I hope you'll continue to engage and let me know if I can help what you need what you want to hear. You know, I made fun kind of earlier in the show about these are challenging and difficult times. You know, man, they really are and we need each other more than ever. Thanks for being here. I'm Stacey Simms. I'll see you back here next week. And until then, be kind to yourself. Unknown Speaker 40:34 Diabetes Connections is a production of Stacey Sims media. All rights reserved. All rights avenged Transcribed by https://otter.ai
In-depth with a teenager who lives with type 1. Stacey interviews her son Benny, who was diagnosed just before he turned two. They talk about Control IQ, explaining what diabetes is to people who don't know and what he does these days for sports and other activities. Check out Stacey's new book: The World's Worst Diabetes Mom! Benny answers listener questions and looks back on 13 years of T1D. Join the Diabetes Connections Facebook Group! In TMSG – graduation good news, two popular diabetes books get an update and more This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Sign up for our newsletter here The "Pink Panther" Book update Think Like A Pancreas update ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode transcription: Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes. By Real Good Foods real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:20 This is Diabetes Connections with Stacey Simms Stacey Simms 0:26 this week in depth with a teenager who lives with type one, okay, it's my son Benny. We covered a lot of ground here answering your questions including sports, what he tell his teammates when they travel for sports and stay overnight. Benny 0:41 I tell them that nasal spray thing - Baqsimi if I don't wake up or if I pass out, do that and then go get coach. Stacey Simms 0:47 We talked about feeling self conscious about diabetes gear, what he remembers about being a little kid with type one and his feelings about the new Control IQ system. I think this interview was a good idea? Tell me something good graduation news two popular diabetes books get updates and more. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of Diabetes Connections. I am so glad to have you along we aim to educate and inspire about type 1 diabetes by sharing stories of connection. If you are new Welcome, my name is Stacey Simms. I am your host, my son Benny, who you will hear this week was diagnosed right before he turned two. He is now 15. My husband lives with type two diabetes. I don't have diabetes at all. But I have a background in broadcasting and local radio and television and that is how you get the podcast. Before we get to Benny and oh my goodness. Like I've already said I'm hoping this was a good idea. I think he has good information to share. It's a little odd to interview your own son. But before we get to him, I have some great news of my own to share the world. First diabetes mom, my book that's been out for a couple of weeks now won an award, my publisher sent me an email. And by now I've probably shared it over social media, as you're listening to this spark publications announces that the world's worst diabetes mom has won an award of distinction as part of the 2020 communicator awards. This is part of the Academy of Interactive and visual arts. I'm really excited about this. Of course, it's not just about the writing, but about the design of the book. And we work really carefully on that the cover alone, we went back and forth quite a bit, but then inside to make it really easy to read. And a nice experience. I mean, oh, my goodness, I was who knew so much went into things like this. I mean, when you think about it for more than a minute you get it. But Wow. If you've ever been involved in any kind of book publishing, there's a lot of steps to it. So it's very exciting to see all of our hard work rewarded with this award. So thanks for indulging me and letting me talk about it a little bit. The book has really been an incredible excuse. For me, and I hope if you've read it, you've enjoyed it. I hope if you haven't read it, you'll consider giving it a chance. You can always learn more, of course at the website Diabetes connections.com. But the book is for sale on Amazon paperback ebook, you know, Kindle and audiobook which I married. And if you're listening to this episode as it first airs on Tuesday, the 26th of May, then tomorrow night I'm actually doing a world worse diabetes mom event with jdrf a couple of the southeast chapters got together we're doing a zoom presentation all about it, sharing our mistakes and mishaps what we learned from them and why they're just the best way to go right? You got to make all the mistakes when it comes to diabetes or parenting in general. And I'll put more information about that in the Facebook group and on social media. I'd love to have you join us. All right, my conversation with Benny in just a moment but first Diabetes Connections is brought to you by One Drop. Getting diabetes supplies is a pain. Not only the ordering and the picking up but also the arguing with insurance about what they say you need and what you really need. Make it easy With One Drop, they offer personalized test strip plans plus you get a Bluetooth glucose meter test strips lancets and your very own certified diabetes coach. Subscribe today to get test strips for less than $20 a month delivered right to your door. No prescriptions or co pays required. One less thing to worry about not that surprising when you learn that the founder of One Drop leaves with type one, they get it One Drop gorgeous gear supplies delivered to your door 24 seven access to your certified diabetes coach learn more, go to Diabetes- connections.com and click on the One Drop logo. My guest this week was pretty easy to book because I know his schedule. He lives in my house. He is my 15 year old son. And if you've listened to the show for a long time, you know I really try to balance how much I share about Benny's experience with type one. It's a balance of, you know not oversharing to compromise his privacy, but also sharing them To help people, he's always been a really good sport about it. And we've really weighed and measured over his entire life because he was diagnosed at 23 months, how much to talk about him. I mean, even really before that, because I was on the radio when he was born. I mean, both of my kids, I was a local TV reporter when I was pregnant with Lea, my daughter, and I was in radio, I was at WBT where I worked for a decade doing the morning show there. I think I was there for a year before I got pregnant with Benny. And so my listeners went through that process with me. You know, they saw me out at events and it was a whole big deal about, you know, how much are we going to talk about how much are we going to share, and when he was diagnosed with type one, and my listeners wanted to learn more, we had to go through it all over again. So I err on the side of sharing less, which may strike you as bananas because I just talked to my book where we talk about all our stories and our family stuff. But I really do I mean, if you look at a lot of the mom bloggers out there, and especially the Instagram people, you know, I really don't share our day to day. I don't think that's fair to him. I'm saying all this I'm sorry for the big lead up. Because it's hard for me to interview Benny, it's hard for me to kind of push and probe for more. He's funny, as always, he gives great information, I think, of course, he is 15 years old. A couple of quick notes to that. 15 years old, and really goofing around on the microphone. There's probably more editing than usual in this episode. So please forgive us if parts of it sound a little choppy, although I'm sure my editor john, you can smooth most of that out. But really, there were times where I really I just, we were goofing around so much, I had to cut it out. And there's a little bit at the end to give you a taste of that. And I mean, the very end of the show, I included it's not really a blooper, but it's just oh my god, what he was doing with the microphone. Also, he does say this is the only correction I'll make. We talked about Control IQ and he says he's in range 80% of the time. I wish. It's still excellent. It's closer to 70% of the time, which is wonderful and it's certainly a lot less work. We talk about that a little bit too. But I have to correct that he is not in range 80% of the time. And the only other thing is listening back to this. I don't want anybody to misunderstand. We are mean to each other. I mean, I call him a couple of mean names. It's just our relationship. I mean, it's kind of the way we pick on each other. If you don't know us, too well, I'm just a little worried that you might think we're really mean to each other. I think you can hear that. It's all in good fun. We are so fortunate to have a great relationship. But it's been a while since I had him on the show. And you all had a bunch of questions for him. So I asked, he answered. Here's my conversation with Benny. Stacey So how are you holding up? I'm good. All right. Well, we got lots of questions for you. From listeners and the Facebook group, you started on Control IQ at the end of January. And we were well past three months now. Use any perspective Any comments? What do you think Vinnie? You'd Benny 7:55 No, it's much better than it was before cuz I'm in range. Like 80% of the day? Unknown Speaker 8:02 Yeah, it's wild. What have you noticed in terms of me? Benny 8:06 I'm curious if you're much more now you like, Is it working? Is it working? Is it working? No, I'm not. Stacey Simms 8:15 Any tips or tricks? You don't bolus when you're on the higher side, right? Because we found that that kind of Benny 8:21 plummets you. Yeah. Don't do to see but in Control IQ, it won't bring you up from lows. Stacey Simms 8:27 But you still do to receive and Control IQ Benny 8:29 because I like juice. Stacey Simms 8:31 Cuz you like juice? Yeah. You're an idiot. What? Alright, so you use Control IQ, and you still take a daily shot after Seba, even though your insulin needs have gone way down. Why do you continue doing that your Seba? Benny 8:47 I don't know. Stacey Simms 8:48 Well, you know your mother mentioned you might want to stop and you said no, I thought you had a reason less insulin usage. You mean like in the pump, you don't use the cartridge. You should try it. You're not really using balance. Well, now we have to talk to the endo again and okay. Would you think of the telehealth visit that we did by the way? That was rough. Benny 9:08 It was rough about it. You guys couldn't find any. Oh, yeah, we had probably his first one. Stacey Simms 9:14 And he didn't have clarity and he didn't have to connect up even though the office said that they did. So it was a little weird, but were you okay with just talking to him that way? Well, yeah, I mean, Benny 9:22 it's better in person. Because that our interests are pretty cool guy. Let's get to the questions Stacey Simms 9:29 in the Facebook group, Rodney Miller. Hi, Rodney, who runs bolus and barbells he said Why am I Benny's favorite? strong man diabetic. Benny 9:38 My favorite strong man diabetic actually for your information? Cuz I'm the best Oh, you're those favorite strong man. Oh, all right. Well, we'll see you guys in competition. Maybe I can guide when armwrestling contest. I don't know man. my biceps are massive friends for Stacey Simms 9:52 life. 2021 showdown. Rod me and Betty. Okay. Ronnie says does he feel does Betty feel like having Such a strong advocate for a mom has provided him unique opportunities to connect to the diabetic community. Benny 10:06 Yes, would have never met Rodney. Ernie almost got the chance to meet the rock was very close to that. Brick bassinger those people are pretty cool friends for life is a lot of fun. Justin Thomas, Jeffrey, those guys are pretty cool, too. I don't think I would have really met them without mom. You know, no one's putting us in trials. So you know, is that Stacey Simms 10:30 isn't that funny that we can't get you into a clinical trial? Benny 10:33 I think they it's obvious that they know we're just too cool. They don't they don't want to risk something not working on people that are just so awesome. Stacey Simms 10:41 But we'll keep trying. All right. Shelby wanted to know, when you were younger, what did you say when other kids asked about your pump or CGM? How did you handle the curiosity of other kids Benny 10:52 said I'm a robot. I still say I'm a robot and then I actually explained it. I remember one time a gorgeous went What's this and ripped up my pump? Wow, that was Fine. I don't really remember anything. Besides that. Stacey Simms 11:02 I remember when you were, and this might be the same story when you were in preschool. They told me that you were all kind of like lining up to go to the bathroom or something. And the kid behind you said, Hey, what's that and started to pull on it, and you turned around, and you were like, three? And you're like, that's my diabetes. And you were very straightforward. Like, don't mess around with that. Don't touch that. That's mine. Or I guess, like, touch my diabetes. You're like, but you were always we're very lucky because you were always very straightforward about it very open about it. And you never have seemed to minded Benny 11:36 Well, yeah, no, I don't care. Like if you don't like me, because I have diabetes go away. You suck by God, what am I gonna say? Like, Oh, no, darn. Stacey Simms 11:45 Well, you know, you're not self conscious about it, which I think is, is wonderful and made it easier for us. But I don't know how you teach that to somebody, right? You just have always been that way. Benny 11:55 I just kind of like I need it. Don't touch it. Stacey Simms 11:58 So I guess the answer is you've been very straightforward about it little humor, but mostly not hiding it and saying here it is. Benny 12:03 Sometimes I trick my friends into thinking they're giving me insulin, I disconnect my pump and I give them the pump and they still think it's connecting. They go, can I kill you? I say yes. And then I let them give me like six units, and they think that I'm gonna die. And it's really funny. Why would you tell me that? Because it's funny. Stacey Simms 12:20 Why that is terrible that your pumps all messed up, especially with Control IQ. We think I don't Benny 12:25 do that much anymore. Okay. So like, once, once, once every other month. This is more like a fifth grade thing. Yeah. Please tell me you don't do that anymore. I do it like once. Maybe I did it once with Jackson. Stacey Simms 12:37 I'm gonna kill you. Okay. Let's see. Dee writes as a teen athlete. What are your best tips to manage on your own during a sports event or overnight sports trips. We have a lot of those this year. Benny 12:49 We have but I wasn't Stacey Simms 12:50 competing. I know which is why I wasn't which is why it was very easy for me Benny 12:55 to let you go. I don't think it's very smart to be on your own with anything. ports, you should have at least one person with you that knows what's going on. Just you know, just in case but like, if you are alone, which is again, not smart, Stacey Simms 13:08 she means on your own without your mom or dad, because you're on a trip is not going to be like the coach is going to be there. The team is going to be there. So why don't you talk a little bit about what you told the kids when Benny 13:18 I first joined the team coach made us all sit down and made me tell everyone what was up. Basically all I told them was I have diabetes. It sucks. If I faint there's a thing in the in the pouch that you stick up my nose or you go to coach or the athletic trainer. Don't let me die. Stacey Simms 13:39 Well and when you go on overnights you're not alone in the room, but there's not an adult anymore. Yeah. So what do you tell the kids that are with you? Benny 13:48 I tell them the thing like the the nasal spray thing. So like see me if I don't wake up or if I pass out, do that and then go get coach. Stacey Simms 13:57 What do they say? Are they like okay, yeah, they don't Nobody seems freaked out in there. Benny 14:02 I mean, a bunch of them are scared of needles and it's fun to mess around with them but Stacey Simms 14:07 and I do send you you know you have a kit, we make sure that there's lots of food and drinks and all that stuff. And you have your snacks and your your Welch's fruit snacks. That's one thing that made it easier in a way last year you weren't competing because you had your knee injury. So I wasn't too worried about the ups and downs this coming year, assuming all goes well and you wrestle again. I'm not exactly sure what I'm going to do for those first couple of overnights. Well, you said it like I was gonna ask you what to do. I'm not I'm either going to come near and stay nearby. Oh, no, dad, Benny 14:43 if anyone's coming is that Stacey Simms 14:44 that's a great idea your father can go. I don't think I would like I'm not gonna make you stay in the hotel room with me. You can still say with your friends, but especially with wrestling until we kind of figure out what your body's doing. I think it's really important to get a baseline and then get some protocols and figured out out from there, but I don't I don't intend to sit on You don't worry. I like this one. Kristen says, Is it true that Benny has the best mom ever? Benny 15:08 No. Oh, you're off the show. No one has the best mom ever. It's literally not possible. There's like a couple billion moms. You know, Mother's Day is just passed. Stacey Simms 15:20 But that was a missed opportunity, my friend. Unknown Speaker 15:22 Um, Benny 15:26 I mean, she's pretty good, but not the best missed opportunity. Stacey Simms 15:31 Best you ever had. Okay. Right back to our conversation. And the next question is going to be advice. What would Benny tell his younger self? We'll get to that in just a minute. First, diabetes Connections is brought to you by Real Good Foods. And on their website. They have real reviews from real people, which makes sense because you know, this is all about real food. You feel real good about eating. And what's nice is with the record As you can see, it's not just people who eat super low carb or who eat keto. There are people who have celiac who can't eat grain. There are people who just love the way the food tastes right? There are people who talk about the airfryer, which is a great way to make so much of their food. It is delicious. We are big fans of their they can put this in the airfryer we're big fans of their new ice cream. And we really love the cauliflower crust pizzas as well, which do really well. In the airfryer find out more, just go to Diabetes connections.com and click on the Real Good Foods logo. Now back to my talk with Benny asking him your questions. Mary says what advice would he tell a younger version of himself about being a teenager with diabetes? So I guess she means what would you say to yourself back Benny 16:52 then? Keep doing what you're doing. You'll be fine. Stacey Simms 16:56 I think that's an excellent advice. Benny 16:57 Yeah, I was a pretty good child. Questions like, Oh, I wish I had depression. No, I was the best. Stacey Simms 17:04 I think the only advice that you should give your younger self is, if you take your pump off to play football in the neighborhood. You might want to put it someplace smart like a mailbox, just because I lost it a couple of times worse, Benny 17:17 just because I lost it a couple times. It doesn't mean you have to bring it up again. We always found it. Yeah, I'm pretty good. You're pretty good. Yeah. Your mother had to go your mother. Who is that? Oh, Laura says does he have any good one liners when people ask about his tech? I'm a cyborg. You have so bad. And people believe me and it's really funny. Stacey Simms 17:39 Okay, so here's an example. We'll go to someplace brand new and you make friends everywhere you go, which is Benny 17:43 amazing. I'm kind of jealous of that. So we'll go to the beach where a smile. Yeah, we're just I just wear a smile, where it doesn't have to be real. Where I Stacey Simms 17:52 smile. We'll go to the beach. And you will, you'll make friends but you have your shirt off your decks calm with the beginning. Put thing on, you know, either on your arm or your stomach. Do people ask about that? And they want to Benny 18:04 tell him I'm a cyborg. Stacey Simms 18:06 I'm so serious. And then do you kind of go into any more detail? Not if they don't ask. They just leave it at that. Most of them most of the time. They just leave it at that. That's funny. Okay, so this the next couple of questions came from a different Facebook groups. So while I know a lot of people in the podcast group, these came from a different on a group of moms with elementary school aged children, you know, saying this just as much for the listeners as I am for you. smart alec. has been he ever been bullied over having diabetes. So Benny 18:36 let's talk about that. Then. No. Okay, unless I don't remember. Stacey Simms 18:40 No, no. Let's talk about why you think you haven't been bullied about diabetes or picked on? I think part of that is because you were always a bigger kid. Right? So nobody was mad. No. As you listen, I've been trying to edit out that I'm saying And he keeps saying it so now we just have to leave it but but you were you were a bigger kid and you were a nice and fun kid. So nobody ever picked on you for much of anything. Right? I mean, I think the only time that we were in a quote bullying situation was when you were in like fifth grade and a little kid was so trying to pick on you. And you he was like it was like poking the bear with a stick. Luckily, you didn't you didn't take the bait. But I think one of the reasons why nobody picked on you is because nobody picked on you anyway. But also, you were so upfront about it. Yeah, that there was what are they gonna pick on you about Benny 19:38 how your pancreas doesn't work? What if What a nerd Unknown Speaker 19:42 but you were always there first to tell people about it and to explain and I was also like, the most popular kid in my elementary school. So Benny 19:52 there's that too modest to ah, am I wrong? No, I remember explaining At least there was a time where we were in the gym, and I was running around giving everybody high fives. And they were all chanting my name. Stacey Simms 20:08 Well, that was I don't want to burst your bubble. There's fifth grade. Well, yeah, but it was also like a jdrf event. Unknown Speaker 20:13 Oh, that was that school? Stacey Simms 20:15 Oh, really? Yes. It was gonna be like one of the beam team. No, that that was Benny 20:19 that was beam team at school. Unknown Speaker 20:20 frayed right. I'm saying it was a purpose. Yeah, but I'm okay. Stacey Simms 20:25 But that's a perfect example of how a diabetes thing made you feel great. Yes. And it's hard because I think some kids don't embrace it naturally, which I understand everybody's personality is different. I don't understand it. Well, you will when you grow up. But like, you know, your sister has a completely different personality. She's very introverted. She would not have enjoyed that. And I think she wouldn't have had the same experience you did. So as I'm talking as you're listening, I'm not talking to Betty right now as you're listening. I think it's harder for kids who are Shire, and I don't have that kind of advice so much because Benny's not that way. Unknown Speaker 20:57 Some of the best. Well, you think you're the Stacey Simms 20:58 best and as I said, And modest rude, but I think it's okay if your kid isn't out there saying I'm a cyborg and yeah, diabetes and get well not you never said da da da da let's rephrase, yay, beam team and jdrf and all that kind of good stuff when you were younger. I think it's okay if that doesn't happen. But I think that can also the more you keep it into yourself, the harder it can be when other people ask about it, and I think that can kind of lend itself to some difficult situations. Let's put it that way. Benny 21:27 The lesson from all this tell everyone you have diabetes so you can't get bullied. Stacey Simms 21:31 Well, I think it helps to be upfront about it. But you know, it's it's not my lessons. Your lessons better also be a big dude. always have a smile on your face. And I hate that you're thinking I'm talking about when you were like six or seven years I was still chunky. Benny 21:47 I was cute though. Stacey Simms 21:49 Hey, let's talk for a second because you're bringing it up. Let's talk about your Benny 21:54 weight loss lost 50 pounds since the summer 50 Stacey Simms 21:56 pounds which is bananas. Benny 22:00 Turn on, keep going. Stacey Simms 22:01 Okay, that's fine. But can you talk about how you've done it a little bit only because as your mother, I was really worried when you start it, our dog is going crazy. I was really worried when you started because between diabetes and just body image and eating disorders and all this stuff, I was really concerned, but you seem to have done it in a really great way. Benny 22:19 I'm gonna be so honest, I've absolutely no idea like how to describe what I did. I ate when I was hungry, but just enough, and then I drink a lot of water and Gatorade. Stacey Simms 22:27 I can also chime in on just a little bit of what I observed. Because I was, you know, you know, I was making sure you were eating, you know, I was worried. Benny 22:33 Yeah, Stacey Simms 22:34 um, you seem to really just cut out empty calorie stacking. We never had a lot of junk food in the house, but you know, no crackers or you know, or things like that. And you stopped eating dessert. Not, not all the time, right. You do have dessert sometimes. But you really stopped eating when you're on the computer. Yeah. Because I think our house helped to now we didn't move until the beginning of March so you were already losing weight. The reason I bring up the new house is because In the old house, the playroom where you had your computer and stuff is right next to the kitchen. Yeah. So obviously it's really easy to snack. Yeah, but you get a lot of willpower and you stop that. But then we moved here. You have been away. The playroom is upstairs and the farthest corner of the house which is, which is great, because we have to hear you screaming. So do I know. But when you play Xbox, you're so loud and I don't really hear you until the hall has this quiet, dude, just don't scream. No, you Benny 23:26 don't understand. Screaming it's part of the enjoyment. Stacey Simms 23:28 But the point is, you've you've been able to have a lot of willpower. And also it's helped that you are farther away, but you eat dinner. You know, you eat breakfast, you eat food. It's really been amazing to see I would never have said you had 50 pounds to lose. So, you know, to me, you look you look really thin. Are you okay? I mean, Benny 23:48 he's kilo. 15 pounds to lose. Stacey Simms 23:49 Yeah, well, we're gonna talk about that off the year. With wrestling. We'll see Benny 23:53 17 actually. All right. Stacey Simms 23:54 The idea here is to be safe and be smart and get where you want to go without the interoceptive Okay, all right, you know, I'm right. We're gonna talk about that off the air. But, you know, the other things that comes with weight loss is you know, you're using a lot less insulin to, which has been really interesting to say, but you're doing great. Okay, and you need some new clothes. Benny 24:13 Just an entire new wardrobe. I mean, we can't go shopping because of the quarantine stuff. So it's been wild. Stacey Simms 24:20 I'm not taking you shopping. Okay, this is an interesting question. Elaine says, When did he start total self care, and then separately waking to CGM alarm. I don't wake up to CGM alarms. Benny 24:32 Okay, I woke up to my blood sugar. Stacey Simms 24:33 Oh, I was gonna say I know that. I was gonna say it wasn't true because I know you treat overnight and stuff so you feel that you wake up to your body. Yeah, I Benny 24:39 never once woke up to an alarm. I'm a deep sleeper. When Stacey Simms 24:45 I don't know because I'm not in your face all the time. But it seems to me that I've seen you go low and I know you treat and then you go back up. So you're waiting on wake up to alarm you're waking up because your body is alright. I've never woken up to an alarm. I will as the mom We'll let you say that I'm going to slightly disagree all Benny 25:04 tell me about what happens if you wake up and you're filled up. And I'm sweaty. And I'm like this does not feel right. And then I stumble out of bed and if there's low stuff in my room, I take it and if not, I go downstairs and get juice and sit down there until my blood sugar goes back up. When the dog comes, visits me, Oh, that's nice. When the dog comes as it comes visits, Stacey Simms 25:25 that's nice when the dog comes to visit. I said I said, to answer the question here, too, we still use Dexcom. Share. We got the Dexcom when you were nine. We started share two years later when it came out. But we spent the first seven years of diabetes with no CGM. Benny 25:41 That was scary. wasn't scary how we did it. Stacey Simms 25:44 Well, you really you think that was scary? Unknown Speaker 25:46 No, you don't remember it? Yeah. Stacey Simms 25:48 How did we do it? We did it and it was a lot of blood sugar checks. We'll do a show on that sometime. Or at least a discussion of like the olden days, but I'll tell you what, I never really remember being scared. Well, that's not true. There was one time when you were low and you would not come up. That's when I was scared. But I knew you were low. Oh, well, it happened at home and then you threw up and you were fine. You just need to throw up and then retreated. And you were great. I don't know what that was all about. Well, you're gonna say, Benny 26:15 so I had a counselor at a CCT diabetes camp. Yeah, name, Chris. And the entire week his blood sugar was just like 60 I remember that. He was not like a big dude. Like he was a tiny scrawny little dude. And he ate so much food. And his blood sugar just didn't go up. Stacey Simms 26:35 Now. I remember he telling me about that. It's crazy. Maybe he needed to throw up Benny 26:40 there, but it was the entire week. It's crazy. Like I had never seen a person eat so much food. And his blood sugar just didn't go up. Stacey Simms 26:48 But it didn't go down. Right? It just Benny 26:50 it was just 60 it was like 60 to 65 the entire week. Stacey Simms 26:55 Well, the thing I was getting to with CGM is that I used to check You overnight when you were very little. And then as you got a little older, we would only check you overnight if we'd had a weird day, like we just knew something was going on, or you know you were very active. But I also went to work at 330 in the morning, so I would check you at 3am. When I got up, it was kind of easy. That was I wouldn't in my head. That wasn't an overnight check, because I was getting up to go to work. But obviously it was an overnight check. So when you got to CGM, and now that we have share, you might not wake up to the alarms, but I do so I mean, with Control IQ. And with our living situation with you upstairs here. I think I've treated one overnight low. And it was a compression though, right? You were laying on your CGM and I came upstairs and just enrolled you over and went from there. But to answer Elaine's question for real is he hasn't started total self care. No, no. Well, I don't think it's appropriate. You're 15 years old, and you're wonderful, you're independent. I could send you away for a week with anybody and you'd be fine. But in terms of real true self care, we're saving that minute do that it can you do that? A Ken Coleman right. But we're saving self care really here at home until your senior year of high school to give you a year at least maybe. Well, that isn't always talking about that's nice that he thinks that was that really threw dead under the bus. Yeah, well, that's what I do. I were thinking senior year, you're only a freshman. You're finishing your freshman year here. So we're we're still working on it. But I think senior year is good. And yeah, you do total self care when you go to camp Coleman, which is your regular month long camp. Benny 28:30 The stories I could tell about the nurses. Well, some interesting ones. There's Stacey Simms 28:35 a medical staff there but not a diabetes staff. So Benny 28:38 there's a couple that are very good, though. Yes, that's a story for another But no, she only has to stay for two weeks. Stacey Simms 28:43 We love Karen. Okay, so the best Benny 28:45 she's the only Karen I like Stacey Simms 28:46 no that's me. Like how can my best friend grant was a Karen weird name. All right. What were the most helpful accommodations for us school asks Heidi, I'm going to be very interested in what you say here. Repeat. What were the most helpful accommodate for you at school, Benny 29:01 What was her name Miss? Oh, Miss Hyman Simon? Stacey Simms 29:05 Yeah. Okay, so Miss Iman was absolutely. I guess the school called her a floater. She was a teaching assistant, who in kindergarten would come in and help you know, she was like the our elementary school always had a teacher and a teacher's assistant for kindergarten, but in first grade they did not have that. Your first grade teacher though, who was a take charge and take care of business lady. Oh, Harrigan, Miss Harrigan? Yeah, she was like, we are not fooling around with this. We need more help. So she got permission to have this time and float in and out and do and help you with your blood sugar checks. And then by the end of first grade, there was another kid by the beginning of second grade, there were four kids in elementary school and Miss Hyman was like the diabetes lady. And she would just help. That's so nice that you remember that? Benny 29:51 I remember. Like I was with her all the way to like third grade. Stacey Simms 29:55 Yeah, well, she left the school it was in Benny 29:57 first grade to third grade. Stacey Simms 29:58 Yeah. And then you Didn't you really didn't need any of the diabetic nurse? Oh, Julie, who has diabetes? Yeah, she was on the islet cell thing, right? Yes. She had an islet cell transplant. She's been on the show before. So as you listen, yeah, she told all about her islet cell transplant. And yeah, she's a really interesting story. So we'll, I'll link that up in the show notes. You can go back and listen to that past episode. Like Kumbaya, Unknown Speaker 30:21 like if I Oh, yeah. Benny 30:24 Um, do you have merge? conflict? The merge? Stacey Simms 30:26 I don't have any marks. Yeah, one of these days I have my book. The thing that's nice about my book, Benny 30:31 Lincoln bio, Stacey Simms 30:33 Instagram, it's audio. Um, but I would say for accommodations, we had a very, very light 504 plan. And our 504 plan revolved almost all about testing. Because in our school district, unlike many school districts, we actually had a written out diabetes management plan, and every child with diabetes whether you're on a pump or shots or whatever you would Have a de m MP diabetes medical management plan. And you had to fill that out. So that was kind of like your 504. Benny 31:06 I have a question. Yes, of course, if like, let's say my 504 says I have to have my phone with me, right? Yes. And a teacher takes my phone. Stacey Simms 31:13 Yes. What do you do? That's a great question. If you felt that your health is at immediate risk, I would excuse yourself and go to the administration office and call me. If you felt your test was at risk. I would take the test. And then upon completion, I would like does that teacher get in trouble? Like what happens? Oh, it depends on the school district. If it was a mistake, it depends on the parent. Okay, so let's say that happened to you. And you were like, I took the test anyway. Okay, and you got a 95 on the test. Okay. I would go into school. And I would say or call the school and I would say, Hey, I understand there's a misunderstanding. Let's talk about it. Let's talk through it. And I would escalate if she was like, if she was great and said, Oh, my God, I'm so sorry. I didn't realize that's one thing. She says. That's outrageous. You couldn't possibly then I escalate, right? We go to the next person, we go to the next person and this person, let's say you take the test, you get to 65. I would lobby for that score to be thrown out. And you could retake the test. We've never had to do that. Because everybody's good. Yeah, everybody's been very cooperative and accommodating. But I'm all for fighting for you. But I wouldn't start out with a fight. Yeah, I would start out with a Hey, what happened? and go from there. But I don't think it's fair to make you totally advocate for yourself. Benny 32:29 I would hope you would. I mean, oh, yeah. No, if I knew something was wrong, I would leave the class I'd be like, ministration something's wrong. Unknown Speaker 32:37 Right. me right. Stacey Simms 32:38 Like if your blood sugar was high, and they wouldn't let you see the nerve. Here's a really good example. And let's not name the teacher. You used to have migraines. Oh my God, when you were growing up. Unknown Speaker 32:50 Your teacher didn't believe you. Benny 32:52 Even after I threw up right in front of her. Stacey Simms 32:53 Well, I think that was that was the action I was gonna say. What do you think you did that made her listen a little throw up right in front of her threw up in the classroom. I'm right in front of her all over the books. Now, if you were not in the what was that fourth grade? Okay, so let's say you were a freshman in high school, you probably would have left a classroom and vomited in the bathroom and then gone to the nurse. But because you were in fourth grade, and you were probably really nervous to leave, or, you know, there's all these things going on. It's really unfortunate that had to happen. But, you know, it's good to talk about, but back to accommodations, because we have the diabetes medical management plan, which spells out how diabetes was treated, and also said things like, you know, you have to leave the classroom to the bathroom, you're not limited to water, how much water you can drink, all that kind of stuff that was laid out our school district, which is a huge one in the Charlotte area is wonderful about that. So our 504 was all about how he's going to take tests. And we started it in. I had a 504 plan, but we never really used it because of the testing situations. Don't ever use it. Well. Yes, you do. It didn't come into play until third grade finals, right into grade. So in third grade, we started kind of testing at different ways. Big to take tests, the beginning of grade tests. So we decided for For Benny, he wouldn't do anything differently except he's allowed to have his phone with him. He doesn't need his phone right now, really, because your pump has everything on it. But you still take it in, I assume you lay it on the desk at the front of the classroom, sometimes you'll keep it your pocket. Well, so Benny 34:13 normal testing, like not finals and stuff. It's just in my pocket. But teachers are like, just don't cheat, but during and agree, like finals and stuff when like they like go and collect your phone. I just like, it depends on who's there. Sometimes it's just don't cheat, or sometimes I'll keep it at the front of the class. And if it buzzes, I'll tell you. Stacey Simms 34:31 Yeah, I think for us, we're gonna find out this year about accommodations for the AC T and the SA T, and things like that. And that'll be an interesting thing to go through as well. If your child is diagnosed younger, this is really easy. Because you you figure it out as they get older. Right. And by the time they're in middle school, I think High School is when testing really starts counting. But I mean, it counts in middle school too. But by the time they're old enough to take these tests that really matter. Yeah, you're understanding what they need because some kids need a lot more money. than you do, your blood sugar doesn't skyrocket because of test stress. We have friends who they walk into their final exam and their blood sugar goes to 300. Really? Yeah. But I think right in terms of most important accommodation, I would say it's actually on the parents side. And that is being able to work with the school as a team, being able to go into those meetings and say, I want to be I want to work as a team. I want to see how this goes like let's work together, which sounds very Kumbaya and woowoo. But it really helps it helps me rather than going in and saying, I'm gonna fight for my kids rights. Like there are a lot of situations, unfortunately, where you do have to fight. But you know, going in without guns blazing is very dark principles. Benny 35:37 Cool. Stacey Simms 35:38 Well, your elementary school principal was he loved you. Benny 35:41 I was his favorite. I don't know he was he didn't name favorites, but I was Stacey Simms 35:44 he was fascinated with diabetes. He was really interesting. I mean, he wasn't he wasn't fascinated, in a weird way. But he just he admired the kids with type one. He really did. I was his favorite. Well. Benny 35:55 He didn't say Stacey Simms 35:56 he really admired what you guys were doing. It was interesting. School. Yes, your school counselor was great. He was a good guy. He and he did our 504 plans, we would meet with him to go to the fiber floors and he was he was very nice. Benny 36:09 He was the guy that like if you got to go into his office, you were one of the cool kids. Stacey Simms 36:15 We were very lucky to have a great Elementary School. Okay, and has been principal Benny 36:19 had a lifted red Jeep. Like how much cooler does it get than that? I guess cool was an elementary school. Principal is the eye of the beholder. Stacey Simms 36:29 has been he had burnout. If So when did he have it? How long did it last? And how did he deal with it? Benny 36:33 Yes, yes. Stacey Simms 36:34 Yes. Ever? Yes. So explain. Benny 36:37 I don't want to do diabetes. Too much work. Unknown Speaker 36:39 You get that often. Benny 36:41 Yes. But how do you deal with it? video games? Unknown Speaker 36:44 Do you just change the subject? Yeah. Benny 36:46 I find that most of the time I just go Oh, well. It is what it is. Stacey Simms 36:50 Well, I find it interesting cuz I wouldn't have said you've reached a lot of burnout. Benny 36:53 Like I have my own opinions about that. I have been able to shoulder shrug a lot of things Stacey Simms 36:59 like kind of compartmentalize. I don't know what that means, like, put it in the back of your brain and move on with your life. Yeah. So what helps you should play video games? Is that also like, just you're with your friends? Yeah. Do you ever talk to people from Camp or no? Well, you mentioned Justin and Jeffrey early on, is it? Like knowing that they're there? You'd have to call them? Benny 37:18 I mean, I guess but like, I've never been the kid that's like, and life is terrible. I gotta just like, yeah, it is what it is. Stacey Simms 37:27 All right, I have two examples that I want to bring up and see how you react. And we don't have to share these two examples. The first is when you were about 10. And you want them to take a pump break. Do you remember that at all? Yeah. What was going on? Like, can you share anything about that? Benny 37:41 I remember talking to Michael. And like, the pens just seemed a lot easier. But then I was like, wait, there's too much math. Stacey Simms 37:49 Well, your pump requested about three days, but that's when you started because Benny 37:51 I was like, wait, there's too much math. Stacey Simms 37:52 Yeah. And that's when you started giving yourself your own injections. Because you had only used us we don't use syringes. Remember before that, I don't Benny 37:59 ya Yeah, I remember when I was like four. Stacey Simms 38:04 And so to switch to an insulin pen seems really scary to you, but you did it, which was awesome. And it's helped us a lot since then there's too much math. Yeah. And there's also too many shots because you'd eat breakfast, then you'd get in the car and want an apple. You'd be like, what I do another shot. But then the other time, I wouldn't call it burnout. But we had I actually wrote about this in the in the book, you had a really bad night, you had a night where everything hurt, your inset hurt your Dexcom hurt. I think you had to do the same night. You're doing both and it was tough. You were really upset about it. And those things happen. I think it's important to acknowledge even for a happy kid like us, that was a terrible night. Benny 38:40 But tomorrow morning, I was fine. The next morning, tomorrow. Ya know why? Stacey Simms 38:47 But really can do mine. You don't have to share about it. But can you talk a little bit about? Benny 38:51 I remember one time, like my incident didn't work like three times and then my Dexcom didn't work like twice. I gave up and I was like, I'll do it. The morning Stacey Simms 39:02 that was the week that you actually met Rodney, the pan guy who we already mentioned him he was the first question dangling. I love Rodney and, and Colt Scott, the American Ninja Warrior dude. So we met them a couple nights later because we were out to dinner and you didn't talk about the night that you were so upset. But I think don't Benny 39:20 remember what we talked about. I remember is Ronnie eating a lot. And I was. It was really fun. Didn't barbecue there too. Yeah. It was a fun night. Stacey Simms 39:29 Yeah, but I think that just helps to kind of breathe the same air as other people with diabetes. Even though you've had a crummy night, it helps to be with your people because your mommy is helpful, but only to a certain extent. All right, I don't know that you can answer this question, but this is one of the last ones. Okay. How did you realize like, when did you realize you had diabetes? And how did you feel about it? You know, I can't answer that. I just I've just always had it. This mom says I keep wondering for those who are diagnosed early like my daughter with the healthiest way of thinking about it is and how I can help with that. Benny 39:58 It's life. What are you going to do? Stacey Simms 40:00 Well, I think a non 15 year old person answering that question a parent might say, I think that there are ways of explaining it that change, because there's different age appropriate ways of talking about it. When Ben he was teeny tiny right after he was diagnosed, my parents got him a Curious George doll, who we'd love Curious George, and he's just not better. Right. And we thought that he would do like imaginative play, right demo demonstrative play right here. I'm gonna give he did not do that with the curious church, but he did. Oh, yeah. And so Elmo got shots. Elmo had juice boxes, Mo got insets Benny 40:34 mo love juice boxes, Stacey Simms 40:35 right Elmo love juice boxes. And that's something that helps kids process that they have diabetes when they're very young. And as he got older, we would read stories, we would tell other people, we did a presentation for your class every year that changed as you got older. And then we started talking about age appropriate stuff. So when you're talking about like independence, what has to be done? When you're talking about driving what has to be done right Later, we'll talk about about when you're living by yourself, right? Well think about it as a parent, how much? Benny 41:04 It's fine. You guys have no responsibilities, Stacey Simms 41:08 I'm going to touch on driving just a little, because somebody did ask about that. You're doing really well with driving. But you Benny 41:14 want to talk about what you have to do before you drive. I checked my Dexcom. Stacey Simms 41:18 And right, that's it, you check your blood sugar. If you're below 80, you can't drive. That's our simple rule. And we have to make sure there's stuff in the car. And I'll be honest with you, I'm going to make sure that you have low stuff in your car for the first year or two because it's just like anything else. You have to learn. You have to get used to it, they'll be independent. So with driving that's, that's I'm terrified, but not really because of diabetes, but you're pretty good driver, Benny 41:39 the best Stacey Simms 41:40 and modest to I am honest, Benny 41:43 like I'm really modest. All right, and then Stacey Simms 41:44 do you do any diabetes goals in the next couple of years like are there certain now Unknown Speaker 42:00 You're listening to diabetes connections with Stacey Sims. Stacey Simms 42:05 See, Why weren't you about how we are to each other, I can't believe I said, I hate you there at the end. Oh, although I gotta say, Oh my goodness, I am going to play a little bit more at the end of the show the very end so you can understand what I was putting up with for a lot of that interview and some of the stuff that we had to take out, but I hope some of that helped you. I'm also going to link up a few of our previous interviews with Benny, I've talked to him a couple of times on the show. And it's interesting. Not only is his voice changed a lot as you can imagine, but just to hear how things have changed. I'll do that at the episode homepage. There is always a transcription. I have no idea what this transcriptions gonna look like the first time I run it through the computer. That's gonna be fun, but we'll put that there as well. And update. Interestingly, after this interview, he really did agree to stop taking the true Seba. So for the first time in almost two years, we started the trustee but in August of 2018, he is not taking long acting With his pump it because his insulin needs have gone down so much, obviously with the weight loss, but also with puberty. He loves what I talked about that, and I'll keep you posted on how that's going. I'll tell you what, so far what he's not eating. It is amazingly steady just like it has him with Control IQ. It's maybe on average, 10 to 15 points lower. So if he was running at like 110, he's now running at 85, that sort of thing, because just that little bit more control of the algorithm is really helping, at least in the short run. But for the last two days, I swear that kid has forgotten to bolus for every single meal, everything he eats. I don't know what's going on. But I'm trying not to make a big deal about it. We're just gonna move on. We're just gonna remind we're not gonna nag. I'm sure he would say something different. All right. Well, anyway, I'll keep you posted on that, but he really is doing great. And I like that he comes on and talks about diabetes, even if it may not be what I want to hear or I want you to hear something. Tell me something good in just a moment, but first Diabetes Connections is brought to you by Dexcom when Benny was very little, and in the bathtub or at the pool, I always noticed his fingertips. I mean, you know exactly what I mean, right? When you've got diabetes and you're checking and checking and checking and poking and poking, when your fingertips get wet, somebody in the community called it Franken fingers. They were just full of little pinprick holes that you could really, really see. And you know, he is 15 I don't see his hands too much. Although I did peek when he was looking at the microphone and hanging out in the studio here, studio. Well, it is a studio, it's my office. I noticed and his endo looks at them every single time we go in that they are just normal. They are not those Franken fingers anymore. I mean, we've been using Dexcom for almost six and a half years now. And with every new iteration, we've done fewer and fewer finger sticks. The G six eliminates finger sticks for calibration and diabetes treatment decisions. Just thinking about doing 10 finger sticks a day, which is what we did in the past. I mean that was pretty every day makes me so glad that the Dexcom has helped us come so far. It's An incredible tool. If your glucose alerts and readings from the G six do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions, learn more, go to Diabetes connections.com and click on the Dexcom logo. And tell me something good this week, a quick book update, not my book, but some other terrific books in the diabetes community. And these are books that have been out for a while that are highly recommended. And we all pass them around to each other, but they're getting updates. And I think it's really important because Gosh, think about how much has changed just in the last couple of years. So the first one I want to tell you about is understanding diabetes. This is better known as The Pink Panther book. I still have no idea why the Pink Panther is involved in this. And it's the actual Pink Panther. I mean, they had to have gotten a trademark but if you've seen this book, you know what I'm thinking. This was the first thing I thought when they handed it to me in the hospital. Why is the Pink Panther affiliated here, but that's a mystery for another time, I suppose. Anyway, they're on the 13th edition which you Come get us a discount because the 14th edition is coming out this summer. This is put on by the children's diabetes foundation. I will link this up in the show notes so that you can order a new book, let your endo know as well, if they're interested and it does come in Spanish. It is also available in an ebook form in a Kindle, so you can get them in lots of different ways. The Pink Panther books, the mystery continues though as to why that character How do they get the trademark anyway? All right, the next book is think like a pancreas, which is a must have, in my opinion, A Practical Guide to managing diabetes with insulin. Gary doesn't need my seal of approval here he is already the number one new release in nutrition and medical health sciences on Amazon. But I think this is really important because I recommend this book all the time. And this is the newest update for it. It's a paperback and an E textbook. And as the description says the all in one comprehensive resource for the millions of people living with diabetes who use insulin. The updates here include, as you would expect new medications, new technologies, injection devices, dietary recommendations. We've had Gary on the show many times he describes himself as a human guinea pig, because he lives with type one and he tries all of these devices, but he also talks about the science behind them in ways that I think is really clear. If you've listened to my interviews with Gary, you know, I generally feel kind of like a goofball. When I talk to him, he's very calming as well. If you haven't gotten this book before, highly recommended. If you have and you're looking for the update, probably the textbook is your best bet and I will link that up in the show notes as well. And finally, and tell me something good, lots of graduations to celebrate. Of course they're not the usual graduations people got very creative with how to celebrate their kids this year, but I know a lot of you were hoping for bigger ceremonies and more tradition. I want to take a moment to highlight just one of the many valedictorians that were spotlighted in some of these Facebook groups that I saw Jeremy bright was valedictorian and thank you so much to his parents for letting me share his story. Jeremy was diagnosed with type one at age 14 and he has a scholarship to Florida Polytechnic University to study computer science this fall. And once Jeremy's parents posted about him in this Facebook group, several other people chimed in with my tea Wendy is a valedictorian as well and you know, they kind of went and listed a few other kids didn't get permission to share their names and or their stories and and that's okay, but I think it's great that so many kids are at least getting the credit that they're due for working so hard through high school I don't know about you guys but it seems sometimes that for these kids I know the workload on my daughter High School was almost worse than college maybe it's just the pressure of you know, they have to do so well and I tried to eat that off for my daughter, but man it is hard when all the high schools are telling them you know, take this class get this college credit all these tests AC t sad. Oh, all right, just a little bit of editorial on my part and we shall see Right with all the wackiness that's happening this year with some colleges not you know, counting the standardized tests, we'll see what happens going forward. But anyway, congratulations to these great kids. If you have a Tell me something good story, please let me know you can reach out Stacy at Diabetes connections.com post in the Facebook group, you know, send a carrier pigeon, whatever it takes. I would love to feature your child or you in our Tell me something good segment. Before I let you go, it's worth noting that we are right at the five year anniversary of the podcast I had Episode 300. A couple weeks ago, I made a bigger deal about that. The five year milestone is something I'm sure I'll mark on social media and talk about a little bit but I'm bringing it up here because well first of all, I can't believe it's been five years. I can't believe that I'm still doing this. I didn't have a timeline in mind when I started the podcast but I don't think I thought five years later I'd still be doing it and loving it as much as I do and it would still be growing but I bring it up because If you're listening to this point in the show, then you are a true listener. And I appreciate that. And I would urge you to please join the Facebook group Diabetes Connections, the group, I'm going to be doing some polling in the next couple of weeks. I'm not sure what we're going to do with the podcast in 2021. And I know it's a little bit early to start thinking about it. But I plan for the next year. I mean, in terms of sponsors, let's be frank, I usually have all that sewn up by August or September. And I don't want to be in a situation where I decide to make some changes. And then I'm scrambling at the end of the year. So I'm going to be asking questions like you know, frequency length, what do you want to hear? I think after five years, it's time to take a tough look at this like a hard look at it and decide what do we really want to do? Where are we going with this right? And if it stays the same, fantastic. I love doing it. But if there's something that you would prefer to hear, you know, maybe it's all technology news, maybe we go once every two weeks, but we only do news updates, that sort of thing. Maybe you really like the personal stories and we stay with that we do a mix. Maybe we make up Longer show a shorter show, you know, there's lots of options. But I want to hear from you. So please watch for surveys over the next couple of weeks. But you got to be in that group. I'm not going to make these public. I don't want people who don't listen weighing in. I mean, come on. And I really can't thank you enough, five years later, to have as much fun as I'm having and to keep doing this and hearing from people who enjoy it. That's the best. Thank you as always, to my editor john Buchanan's from audio editing solutions for making sense of this week's interview and everything else that he does. And thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself. Unknown Speaker 51:41 Diabetes Connections is a production of Stacey Sims media. All rights reserved. All rounds avenged Stacey Simms 52:04 You can you can take that to your room when we are done. Unknown Speaker 52:09 Disgusting. Unknown Speaker 52:11 No, take it with you Why? And I Stacey Simms 52:13 have a place to put it or leave it over there because I'm going to throw it away. If I well why would I keep it I take that two places with me like here. Let me interview with a man with a microphone that's been inside my son's mouth. I think you would love it especially in this day and age. Transcribed by https://otter.ai
Dr. Nat Strand is an anesthesiologist who lives with type 1 and a mom of two young children. She just contributed to a paper all about pain management guidelines in this difficult time, when many people can’t see their doctors to face to face. You also may know her as the winner The Amazing Race in 2010. Of course we also talk about having T1D and that crazy travel show! Check out Stacey's new book: The World's Worst Diabetes Mom! In Tell Me Something Good: virtual events, fire fighters and a lego master Join the Diabetes Connections Facebook Group! This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Sign up for our newsletter here Have a diabetes product or something to promote to the community? Check out Stacey's new Book to Clinic program. She's looking for sponsors - this program fits just about any budget. ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription: Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Real Good Foods real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:20 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:25 This week, Dr. Natalie Strand is an anesthesiologist who was diagnosed with type one as a teen. And she says people who live with chronic pain and people who live with diabetes have a lot in common. Dr. Nat Strand 0:39 and we may think the person who lives with it is thinking about all day long with every activity you know before they go to bed when they wake up in the morning, but the people around them even loved ones, you know and household. kind of forget because you look healthy. Stacey Simms 0:53 Dr. Strand just contributed to a paper all about pain management guidelines in this difficult time when many people Can't see their doctors face to face. You may also know her as the winner of The Amazing Race in 2010. Of course, we talked about having type one and that crazy travel Show. I'm a huge fan By the way. In Tell me something good: virtual events, firefighters and a Lego master. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I'm so glad to have you along. I know Stacey Simms. We aim to educate and inspire about type 1 diabetes by sharing stories of connection. And I am so excited to finally talk to Nat Strand. I can't believe that we haven't crossed paths before. I'm a huge fan of the amazing races. I mentioned I started watching it in 2001 when I was pregnant with my daughter, and I actually remember the commercials when it was like coming soon. And then of course September 11 happened and how are they going to be able to do this they thought the show might not have a second Season. So, gosh, that was such a long time ago. But it is amazing to see that even with COVID-19, which stopped the show again, they're going to be continuing that in the future. But that's neither here nor there. I mean, we're talking to Dr. Strand about pain management her life with type one. And of course, we'll talk about the amazing race as well, but she wanted with her partner and fellow doctor in 2010. So taking a look back, I want to bring you up to date before we get to the interview about something new that I just announced really a couple of days ago on social media, and that is my book to clinic program. Of course, the book is the world's worst diabetes mom. And one of the things that I have found really fascinating is that although I am obviously a lay person who wrote an advice book for parents of kids with Type One Diabetes, I've been really fascinated by two things. One is that adults with type one are buying and reading the book and then giving it to their parents to talk about, you know, their childhood if they were diagnosed as a kid or wants to learn Learn more about the parent perspective, which I thought was fascinating. But I'm also hearing from diabetes educators and endocrinologists who have told me and I know I sound surprised here and this is genuine. I'm not trying to make this silly. They have told me that they have learned things from the book. And you know, when you think about it, it really isn't a surprise, because it's the layperson perspective. These are things you do not learn in medical school, right? These are things you learn when you mess up diabetes, when you're at the beach, you're in the car. It's the middle of the night, you're macgyvering stuff together. This is stuff you've learned when you live with type one. And to that end, a few clinics reached out and said, Can we have copies of the book to give away and so I started a new program, it is called book to clinic. Bottom line, I'm looking for sponsors to pay for these books, so we can get them to people who need them. It's very reasonable. It's a very easy system. I will put more in the show notes and there's a video that's on social media you can see the whole thing and how it works. big thank you to my first two sponsors because the books have already gone to clinic. Thanks to T one d 3d year, and Big thanks to frio so you know I really appreciate the faith that they have shown and if you have a product or a blog or another podcast and you're looking for some very reasonable advertising that is targeted to an audience that is looking for you, please let me know and you can reach out to Stacey at Diabetes connections.com. I’m really excited about it. It's one of those things that you just don't expect to happen. But you know what, we'll see where it goes. Diabetes Connections is brought to you by Real Good Foods, and they have already new ice cream flavors. We love their ice cream and they're kind of hard to get right now. they've they've silted up a couple of flavors. But man they are so yummy. I cannot wait to try the mocha Java chip ice cream. I'm a huge fan of coffee and chocolate and their original flavors that we tried way back when beginning of March. I think we did that Facebook Live where Benny and I tried the ice creams. They were so delicious. We really liked them in chocolate chip, everybody in my household Loved the peanut butter chocolate chip ice cream or big peanut butter people. The new flavor sound amazing. I mentioned the mocha Java chip, the cake better ice cream. My kids love that. And something called super premium almond charcoal ice cream. That sounds amazing. So let me know what you think if you've sampled the new flavors, we haven't been able to try them yet, but I'm really excited and of course Real Good Foods has real good food. They have a whole line of high protein, low carb grain free gluten free. Good for a keto diet if that's your thing. Everything from cauliflower crust pizza to stuffed chicken and breakfast sandwiches, find out more Just go to Diabetes connections.com and click on the Real Good Foods logo. If you've already heard of my guest this week, chances are you're a big fan of The Amazing Race TV show. Dr. Nat Strand won the whole thing in 2010, part of the first all female team to cross the finish line first, along with her friend and race partner, Dr. Cat Chang. Dr. Strand is also the first winner with diabetes and she might really think We'll be the only contestant to compete with type one. I started watching The Amazing Race. As I mentioned when I was pregnant with my daughter and I have been meaning to talk to that for a long time. I'm so thrilled we finally worked it out. She's an anesthesiologist and a pain medicine specialist working at the Mayo Clinic in Scottsdale, Arizona. Recently, she contributed to a paper on caring for patients with pain. During the COVID-19 pandemic. She was diagnosed with type one at age 12. So we have a lot to talk about. Here is my interview with Dr. Nat Strand. Dr. Strand, thank you so much for joining me. I am excited to learn from you and to hear your story. I followed you for years on social media. So thanks for coming on. Dr. Nat Strand 6:42 Oh, well, thank you so much for having me. It's an absolute pleasure, Stacey Simms 6:45 so much to talk about. We will get to the stories and living with diabetes and your diagnosis story. I want to start out and just jump right in with what caught my eye recently, which is a study to what you contributed about caring for Patients with pain during this pandemic. I don't know that you can really share too much about the study. But I'm curious like, you know, your anesthesiologist, let me start with asking you what are you seeing right now? What's going on in your world, Dr. Nat Strand 7:14 where I'm located in Phoenix, Arizona, we are thankfully not experiencing the surge that we thought we were going to have. So four to six weeks ago, there was a lot of work as far as preparing on a community level. All the hospitals governor mandates to increase capacity of hospital beds, things of that nature. So we were certainly preparing for a surge. But I think a lot of people in our community have made personal sacrifices with the social distancing and the stay at home. And I think that that has helped us flatten the curve, as I say, not quite bend the curve because we're still increasing cases here but flattened the curves. Right now. What I do is practice pain medicine, we largely transition to telemedicine to avoid face to face visits and allow patients to access health care. While they stayed safe at home, so predominantly in the last few weeks, I have been treating my patients with telemedicine. Stacey Simms 8:08 And how does that work? Because I would imagine that pain management is already a very delicate balance. You know, we hear about, Oh, you don't want to take too much of this medication or you can get addicted. And then when people are concerned about not seeing their doctor face to face, you've got to be worried about well, are they even managing their pain? Or are they suffering? Can you share a little bit about how it's been going? Unknown Speaker 8:27 You know, I think for the most part, it's been excellent. With two way real time, audio and visual, I think you can get a good sense of how patients are doing. And as far as managing medications, you know, certainly the opioid crisis was there before we call the pandemic that the word crisis is still there during the COVID pandemic. So, you know, it's not the answer isn't just to prescribe a bunch of opioids. Now, some people benefit from it, but a lot of people can do manage with other texts. Consider that the anti inflammatories, neuropathic pain medications, lifestyle alterations, weight loss therapy and even with you know, the social distancing and stay at home, there's a lot of physical therapy that you can do from home too. So I think this challenge in medicine is really forcing our hand taking advantage of telemedicine and taking advantage of remote care and certainly providing access without being face to face now we are now open for elective procedures in Arizona so we are able to keep patients face to face but for a period of time there we really were forced to jump on the telemedicine bandwagon, maybe a little sooner than most of us were prepared to do that. I've been very pleased with the ability to offer access to patients, especially patients who are at higher risk, whether that be due to health concerns or age or even for patients that have to travel long distances to see a physician. So I think easing the burden on those patients and their situations to allow a little bit lower barrier to entry. healthcare access has Stacey Simms 10:01 pardon my ignorance on this question, but when I think of seeing a doctor for pain management, and fortunately, I haven't had to have a lot of that in my life. So again, I'm ignorant on this. I don't think of an anesthesiologist. Right as the person that I would see I think of you all in the operating room. Dr. Nat Strand 10:18 You're not alone. You know, when you do a residency in anesthesiology, you basically spend three years after your internship focusing on ICU level care, operative care, regional anesthesia, select nerve boss, epidural catheters, those kinds of things. So you become an expert at acute pain management, both with medication bandwidth intervention, so there's a fellowship option afterwards. And one of those planners either you can go into ob anesthesia, you can go into cardiac anesthesia, you can go into intensive care, you can also go into interventional pain medicine, so you kind of utilize that and there's a small skill set you developed during the anesthesia residency to further hone that Then focus on mega spinal injections, radiofrequency ablation of the spine or large joints, implantation of spinal cord stimulators or implantable pain pumps. So, you know, it doesn't seem like a natural progression at first glance, definitely. But when we kind of think about what we do in the bar and how that can translate to an office setting for chronic pain patients who kind of come to the bridge to the specialty, Stacey Simms 11:27 yeah, yeah, of course, that makes sense. So tell me about this study. Because this is all about caring for patients with pain during the pandemic, not necessarily patients with COVID-19. This is something that is more of a guide for physicians, Dr. Nat Strand 11:42 who's our recommendation, we worked with the American Society of we China presenting medicine to put out recommendations and then we also the paper you're referencing with that International Paper with the European society, of regional anesthesia also, and we just kind of want a different side provides some guidance during this pandemic early on, know how to handle urgent procedures, semi urgent procedures, you know, what was the risk of using steroids? You know, what can we do to manage our patients that were on chronic opioid therapy. So they really was sort of a set of guidelines after discussion of a panel of international pain medicine experts. Stacey Simms 12:22 It does seem that chronic pain as I read through a little bit of the study, you know, just the introduction, things like that. It seems like chronic pain is so debilitating, especially for older people. I know we're a diabetes podcast, we're going to talk about diabetes in just a moment. Unknown Speaker 12:37 But is there Stacey Simms 12:38 you know, any advice that you would give someone who is suffering who feels like I don't think there's something for me? I've had this pain for so long. I'm afraid of being addicted. You know, we hear all those stories. Any reassurance? Dr. Nat Strand 12:48 Absolutely. And one thing I want to say, You reminded me we talked about the food diary podcast. I think we're a lot of similarities between living with chronic pain and dealing with diabetes. I mean, they're totally different disease states. But if you talk about an invisible disease, that the person who lives with it is thinking about all day long with every activity, you know, before they go to bed when they wake up in the morning, but the people around them even loved ones, you know, a thing household, kind of forget because you look healthy or you look okay, you know, so yeah, that experience of living with diabetes is very similar to the experience of living with chronic pain. Stacey Simms 13:27 That's really interesting, especially and even to my question of people are almost afraid to speak out because they're afraid they won't be taken seriously, or they'll be blamed. I didn't even think about that. Dr. Nat Strand 13:38 Yeah, I mean, and, you know, you don't want to be a complainer or you want to put on a happy face. You feel like it's not interesting to other people, because it's the same thing it was yesterday and so, you know, I think living with diabetes myself, I bring a lot of that to counseling people who live with chronic pain because I get it, you know, and a lot of times they feel really, you can tell they can feel like, Oh my God, that's the first time anybody's really related to me on that way, you know more than just diagnosing the underlying cause of their pain, but actually, what it means to them to live with a condition like that. So I think that actually me having my experience of living with diabetes helps me relate to patients who live with chronic pain. Stacey Simms 14:16 So let's talk about type one. Let's talk about your experiences. You were diagnosed as a young teenager, really, pre teenage 12 to remember your diagnosis story. Right back in just a moment and telling your story there, but first, diabetes Connections is brought to you by One Drop, and I spoke to the people at One Drop, and I was really impressed how much they get diabetes. It really does make sense their CEO, Jeff was diagnosed with type one as an adult. In fact, I just talked to him last week about something else. It's always so good to talk to him because he gets it. He knows what this is like. Right? One Drop is for people with diabetes by people with diabetes. The people at One Drop work relentlessly. To remove all barriers between you and the care you need get 24 seven coaching support in your app and unlimited supplies delivered. No prescriptions or insurance required. Their beautiful sleek meter fits in perfectly with the rest of your life. They'll also send you test strips with a strip plan that actually makes sense for how much you actually check. One Drop diabetes care delivered, learn more, go to Diabetes connections.com and click on the One Drop logo. Now back to Nat and I had asked her if she remembered her diagnosis story. Dr. Nat Strand 15:34 Do I remember that summer being really annoying and my family's road trips I remember going up to Northern Arizona and having to stop use the restroom all the time and it's a short like two hour drive. So I do remember my parents saying we'll stop drinking so much. You know of course now we know that the opposite. And then I went to like a three day sleepaway camp and at camp I was getting some notoriety for how many cans of soda I was drinking, I was going to the vending machine. And I was drinking so much that point I'd like built a pyramid of all the cans. I think, obviously I was going into either some decay or you know, just hypoglycemic diarrhea. So, I came home, my dad is a radiologist, he started to suspect that I might have diabetes. And I think he brought home some like urine ketone strips or something and tested them. And I remember it was like black. So he actually took me into the hospital. And I remember him telling me I was going to the hospital. And I had this bag of gummy bears in my room. And I vividly remember looking at those gummy bears. And you know, in a typical kid, that was what I was sad about was like, Oh, I'm not going to believe me. There's I had no idea what the rest of the diagnosis meant. But at that time, you know, you were admitted. I think I stayed in the hospital for 10 or 12 days and learned how to give myself injections and carb counts and there you have it. That was kind of my guide. It was truly not traumatic in a way. I mean, I didn't have some big bad events that veiled the diagnosis. It was kind of suspicion. Then that was the summer before I went into middle school. So I got to carry a purse everywhere. So the diabetes supplies I thought that was pretty cool. Stacey Simms 17:17 Did you know you wanted to go into a medical field when you were that age? Dr. Nat Strand 17:20 No, I don't think so. I had dreams of being like an oceanographer or a National Geographic photographer, kind of more creative, worldly, growing, no roots type of careers. But it wasn't until later. I think I had an interest in medicine through diabetes and my you know, you get a lot of exposure to physicians and hospitals at a young age. But it wasn't until I was in college that I really solidified my desire to go into medicine. Stacey Simms 17:46 And what made you choose anesthesiology? Do you remember having a process Dr. Nat Strand 17:49 for that? Well, it's certainly you know, matters a lot about what rotations you get. And if you have a great attending on a certain rotation that makes you know just kind of lights it up for you and that kind It happened to me for anesthesiology, bad reputation as a third year medical student and I just had a series of phenomenal attending physician to let me you know, place IVs Let me place lines, I intubated patients, I was in on some bigger cases. And I remember at the time, which of course you you changed your mind on this as you get older, but at the time, I wanted to be, you know, really where the emergencies happened. I wanted to be, you know, a first responder I wanted to be someone went down and had an emergency, I wanted to be there to be part of it, you know, traumatic, and now that I'm older, I kind of like No, I'd like something with Office Hours. You know, nobody needs you in the morning. But at the time, I wanted to be right in the heart of the action and there's nowhere better for that than being you know, in an operating room every single day and you get to help people. That's often the most terrifying thing they've ever done. And you have just moments for them to establish trust with you. Even if it was pediatric cases or you know, even on babies, you know, a parent literally can do their baby. And then you take it down the hallway. And so there's this intense trust that needs to develop over a very short period of time. And I always felt like that was something I really helped sacred as that amount of trust that someone had any for their loved one or for themselves. Stacey Simms 19:22 We have had to have, you know, anesthesiologists, we've had surgery, both of my children over the years, and I always in the consultations, or when they come in, I always say to the anesthesiologist, you are the most important person in this room. And I try to say it when the search is not around, but I don't care. Because to me, that's the one and I, you know, it is such a huge responsibility. And I have such respect almost all and when you said, you know, you take your child down the hallway, if you've been there like I have, you know, your heart is in your throat for the entire time, and it must be such intense, not only the training, but just the experiences that you go through. Do you all Good, this is kind of a personal question, do you will have a community? Do you help each other out? Do you think there's Okay, mental health among anesthesiologists, because that's gonna be so difficult. So that's a huge weight to bear. Dr. Nat Strand 20:11 It's a huge weight to bear. And I think, you know, I don't want to pretend like I'm on the frontlines right now, because again, I do outpatient pain medicine for the majority of my practice, but especially some of the anesthesiologists that have been called to intensive care units, and that are on COVID airway teams. And some of my best friends from training are in hospitals that are saturated with cases and other states. And so I think that mental health is a huge issue, the amount of stress, the amount of burnout, the amount of anxiety, the amount of fear even about you know, PBE and that kind of thing, especially in the beginning, when some of the supply chains weren't, you know, as mature again, I'm not talking about my personal experience, but people at other hospitals. So, you know, I think in general, it's an issue and I think acutely, it's even a bigger issue. I do see resources. I think people do In the pandemic are very aware, I even read a story about a physician suicide in New York for an emergency medicine physician, you know, so people are aware, and I think there are resources available now, especially that are free for physicians. But in general, I think mental health is unfortunately still kind of has a stigma where in medicine, I think self care is often last care. You know, people go to work when they're sick. For the most part, people go to work when they're tired. People work long hours overnight, you know, into the next morning, so I think mental health kind of goes along with physical health and, you know, you just kind of do what needs to be done and the needs of the patient come first. And so for a lot of physicians and all specialties, I think self care, including mental health really is a challenge. Stacey Simms 21:42 I have to ask well, I have an anesthesiologist who also has type one and I mentioned you know, my kids, one has type one and one does not have both had surgeries where they required hospitalization and anesthesia. Are there any best practices or any bits of advice that you can share with the diabetes community to help us make the hospital stays, you know, we're not talking about COVID-19, obviously, but you know more routine stuff. Is there anything that we can do or better prepare, so that when we go to the hospital, if it's an adult or child with type one, that we can kind of help the healthcare teams take better care of us. Dr. Nat Strand 22:16 So I think one of the things is to try to speak with your anesthesiologist ahead of time if possible. So if you're having a plan surgery, and you know who the group is going to be, you may find people within that group that have a little bit more experience and interest in managing type one, that would be number one is to really see if you can identify someone, even if there's not someone who has specialized experience just so you can come up with a plan. I would definitely suggest having a plan with your endocrinologist written out that can be given to the anesthesiologists. You know, I'm thinking of when I've had surgery or when I you know, had my C sections with my kiddos. I think that having the endocrinologist involved so they can, you know, give their support and of course, the You're going to do what they're comfortable with and what they know how to do. And sometimes that's changing, you know, insulin pump to IV insulin. And you also have to balance that with if someone's not familiar with it, and they don't have trust in it, they have to administer the care that they have trusted. So there might be some education involved. Of course, it depends on you what the case is the length of the case, the intensity of the case, those kinds of things. So I think if you're able to, if it's a short case, if the anesthesiologist is comfortable with the plan, I would love to always keep my insulin pump on and my guests come on, but I do know that sometimes, that's just not possible and you have to switch to, you know, other types of influence. So it's kind of uncomfortable for everybody. But I think if you can communicate ahead of time and create a plan that's most comfortable for everybody involved. That's important. And of course, you know, whatever is going to keep anybody safe. You know, avoiding any hypoglycemia, avoiding any severe hyperglycemia. And of course, just getting you to the other side when you can take over management yourself again. Stacey Simms 23:59 Yeah, what We did the last time but he had surgery because the first the first time he had surgery, he was teeny tiny, I think had been diagnosed for, I think he was seven or eight months in. So he was about he was still two. And he had no, he had no decks. And he did have an insulin pump when this was like 13 years ago. So everybody was all excited to see the pump. It was very interesting. But he did great. And then this last time, he needed surgery, he had knee surgery late last year, and they were amazing. But we decided that it would be easier for the anesthesiologist to just look at his Dexcom numbers on his pump, not his phone, because the pump you unlock 123 right, the tandem pump is super simple. We figured the phone could lose signal, the phone could be harder to unlock, you know, just he's got like an, you know, a six digit code, and why would I remote monitor from the waiting room? What the heck was I gonna do? You know, they would know, they would know I had faith. They were great, and it really worked out well. So it was a really positive experience. And interestingly in the 1213 years that had come by that hospital Steph was really well educated about pumps and CGM, which was a really pleasant surprise for us. So that was good. Dr. Nat Strand 25:06 Yeah, that's awesome. Stacey Simms 25:08 All right. So I think I'm not alone in that the way many of us were introduced to you was on national television was on The Amazing Race, which is, it is the best reality show. It's my favorite of all time. I started watching it. I looked this up the other day that I couldn't believe it. I started watching it in 2001, because I was pregnant with my daughter and I couldn't sleep. And I used to watch it all the time. And I adored it. Unknown Speaker 25:31 And you guys Unknown Speaker 25:32 want it? Stacey Simms 25:34 I know a lot has been said a lot has been written over the years about this. What was that? Like? I mean, what do you most remember about it? Dr. Nat Strand 25:41 Yeah, that was 10 years ago now it's really crazy. But you know, there's there's the experience of doing amazing race of traveling around the world was nothing. I mean, you have a backpack but you know, you're going to the Arctic Circle, you know, you're going to go to sub Saharan Africa, you know, you're going to go we we didn't know exactly where we're going. Go back, watch the show myself enough time to know I'd be really cold, really hot, really dirty. But you have a backpack, you have no money, you have no maps, you have no cell phone, you have nothing. And so just being stripped down to sort of your just immediate resources to figure things out like that, because that was as interesting as it was to see the world. I mean, I had never been so stripped down of things I had access to, you know, being a study or I would have references for everything I kind of just get thrown into the world and open a clue and say, make your way to Stonehenge, you know what I mean? It's not like you get direction. So it was while that I did it with one of my very best friends, who's another anesthesiologist, Dr. Catching and we we had a blast. We went around the entire globe and I think it took us 21 days total. And then I came home and slept for like six. And after that, you know, the show starts airing in the fall and it airs. I think it aired from September to December or did at the time. So what sticking it was a whole nother like phase two. Unknown Speaker 27:03 Oh yeah, with all the Dr. Nat Strand 27:04 editing and the production that they do to their production, what the other teams were doing, you know, you see a lot of backstory or parallel stories that you didn't see at the time, right? Because you were just with your team, so very interesting to watch it after having lived it. And then I think phase three of it is getting to be like a C list celebrity for a year or two, which was also very weird. So there's like three phases of The Amazing Race that totally kind of changed my life. But overall, I was so positive, I have nothing but fond memories of doing it and the people that I met and, and I also remember thinking the world is a lot safer and friendlier than I would have thought, you know, if you just drop off to Bangladesh for 48 hours, with no plans, you know, people just kind of help and you and you're frenetic and you're tired and you're racing and you run up to strangers and you asked them questions really quick and, you know, now I would never go to Bangladesh for the weekend. You know what I mean? Like work to go somewhere for a weekend. But it was worth it, you know, you You definitely got to see things and get a taste of it. So afterwards I tried to tell myself, you know, even if you don't have a huge chunk of time to go somewhere still go, if you can, and, you know, to see the world and everybody was friendly, I don't think I had one time where I felt like somebody that's, you know, rude or aggressive or unwelcoming. And I think that was a very wonderful experience too. Because sometimes I think we can kind of become afraid of going places or being with other cultures and being there in person in so many different cultures. And having everybody be so warm was was phenomenal. Stacey Simms 28:34 Did you learn anything at that time about managing diabetes? Because you you I mean, I know you're stripped down, but you had your diabetes supplies, but I saw the show you're testing while you're driving. I mean, you know, to some extent, you don't have all the stuff you know, you don't you're not sleeping, right, you're not eating right. And I'm just curious, I think sometimes with my son, he'll go and forget something and muddle through when he learns from that. And even though we have all this wonderful technology, he kind of has learned that he can make it work. You can always MacGyver something. I'm curious if you had that experience. Dr. Nat Strand 29:03 That's the word I was just thinking. I mean, any type one becomes, you know, kind of a MacGyver where you're learning how to, if you need to draw and slip out of an old reservoir for a new wine or you're learning how to reuse parts of an infusion set because one part ripped off if you don't have enough to replace the whole thing, or you're learning how to keep insulin cold or you're learning how to package things. They don't take as much room by taking them out of their packaging and putting them in a Ziploc, you know, all together, I think, you know, I remember even the test strips, you know, opening the test strip bottles and filling one bottle with two bottles worth of strips just to save space. So, you know, you kind of by force have to get very creative with faith and efficiency and also problem solving. So yeah, I learned a lot about traveling with diabetes. And you know, one of the things I did was I typed out a letter that said I have type 1 diabetes. In case of emergency please help me get sugar or please You know, I'm getting 200,000 to a hospital and I printed that out in several languages. So, you know, if I found myself in Russia, for example, and didn't know how to say what I needed, you know, I would have that kind of to give. So I think, you know, just learning how to prepare, you know, anticipate what problems you might have, or where you're going, and then, you know, trying to bring the selections with you as possible. That was definitely a skill set that was honed, Stacey Simms 30:24 that's a great point. We were in Israel A while back. And, you know, we were on a guided tour, and everyone spoke English. But at one point, a guy wanted to take my son's medical bag to examine it, and he didn't speak English and then he figured out what was going on your tour guide kind of spoke to him and he was like, Oh, you know, kind of funny exasperated, like, come on, make this simple for me. And he wrote out this is a medical bag in Hebrew, and attached it to our bag. He was like, here Now you won't have any other problems like what's wrong with you people? Why couldn't you just do that to me? He was very funny back to us, like, you know, nicely exasperated with us, but I think in the future, that's Something that is just very helpful. You know, this is a medical bagger. I have type one diabetes in different languages. That's great advice. So I mentioned you have two children. Now you have I was gonna say toddlers, but you have preschoolers, right, five and four years old. You mentioned c sections. I'm not going to get all personal about type one pregnancies and that sort of thing. But when you were diagnosed at 12, I doubt you were thinking about children at the time. But you know, as you were getting older with the diabetes diagnosis, did you think about children? Was this something that you thought might be difficult or not possible with type one, or was it always in the plan? Dr. Nat Strand 31:32 You know, I actually, again, sitting with my adventurous plan for life. I wasn't one of those girls that really thought I would have kids. I never really thought about being a mom and stuff like that. I kind of was more thinking about how I was gonna travel the world. And so, I mean, we had all seen Steel Magnolias. And so I think, you know, I had this awareness but at the time, you know, I think it was more of an awareness that that movie was wrong. I think I thought it would be fine. If I had wanted Kids. And then once I got a little older, I met my husband, we got married and I started, my switch flipped and I was like, I need children. And then I was like, Okay, I started getting into the details of, you know, diabetes and what the control needed to be and what the risks really were. And, you know, that I think was overwhelming. I think, you know, type one pregnancies, it's definitely a full time job. It's not regular diabetes management is like, very, very intensive diabetes management. So I knew that people would type one could have kids, I just didn't know if I could do what it would take to be that strict for that long. You know, so I think I, I pleasantly surprised myself that I could, you know, I think when the stakes are there, you do your best. But you know, I think there are different personalities, obviously, that have type one and my brother also has type one, he was diagnosed in his 30s and he's very mathematical. He's got an engineering mind and I think Not that anybody is well suited for diabetes, but if someone was to be well suited personality wise, he is, you know, he is regimented. He charts everything. He stacks his thing. You know, he's like that, and I'm the opposite. I became like him when I was pregnant. Stacey Simms 33:14 So speaking of your kids, though, you you know, you've said you've been doing mostly at home consoles for your work. I assume that for the last couple of weeks, at least you've been home with your kids, maybe more than usual. How's that going? Dr. Nat Strand 33:28 Well, you know, I think that everybody will look back on this time with different different experiences. Some people are bored and they've organized every room in their house and they make all these new recipes and I will look back on this time and remember what I had a three to five year old, who didn't have anywhere to go and any preschool or any day until my house apart all day long every day. My couch cushions haven't stayed in place for more than 20 minutes of full time. I mean, it's just crazy, but it's gonna be exhausting. I mean, they're like feral animal. But it's been cool to see them develop their relationship. You know, they're they're playing together from sunup to sundown. They're imagining things. They're making no jungle. So it's been nice to see them spend some time together, but certainly be at home with two young kids and nowhere to go. That's not for the faint of heart. Stacey Simms 34:26 I salute you. Before I let you go. I know as you've said, you you're not in the ICU right now you're, you know, you're not seeing patients with COVID-19. But as a person with type one, I assume you're trying to stay on top of the medical literature and, you know, seeing what this may mean for people with type one who who get it who catch it who are at risk. Can you talk a little bit just either you know, your thoughts for yourself advice for the community? I'm just curious what's going through your mind on Unknown Speaker 34:52 this these days? Dr. Nat Strand 34:54 Well, you know, when they when it first kind of came out, I was reading a lot about what had happened in China. And also in Italy. And when I thought it was I kind of assumed it was type two diabetes, you know, because we were seeing a lot of age related and comorbidities. But you know, we've now seen with position statements from like the a DA and the jdrf, you know that they're not really differentiating type one and type two. So, you know, I know for me that my risk of catching this is not hired because of the diabetes, but my risk of a more negative outcome definitely is higher because I live with diabetes. So, you know, the way I look at that is I'm doing all you know, the recommended social distancing, masking thing at home, those kinds of things. And at the same time, I'm using this as an opportunity to really focus on all other aspects of wellness. You know, I'm kind of re engaging to bring my diabetes control into a tighter range because I know that's helpful. Now, as far as like rest, nutrition, exercise, all of those things are sort of, you know, you can think of it as like prehab instead of rehab, you know, what you can do before you deal with something to make you as resilient as possible. Physically. So I would just say, we know our risk of getting it's not higher, but our risk of complications if we get it is higher. And that's something that I think we should not let us talk on a topic from a place of fear, but rather from a place of preparation, and using that knowledge to just, you know, get our diabetes under the best control possible. Whether that means, you know, changing to a pump, or getting a CGM, or just re engaging with your endocrinologist or CDE. And then I think making sure you consider all other aspects of wellness to this to make you more resilient, which is, you know, nutrition, rest, stress management and exercise. So, I think we can use this knowledge to just put ourselves in the best position possible. A great defensive is really the best offense in this case. Stacey Simms 36:42 Well, thank you so much for talking to me for sharing your story. And for just giving us a little bit of an insight into the medical community these days. I really appreciate it. Dr. Nat Strand 36:53 Oh, and thank you so much for having me. I mean, like you said, I followed you on social media for so many years, and it's just an honor to be included on your project. Cast and thanks for everything that you do for our community. We all appreciate it very, very much. Unknown Speaker 37:10 You're listening to diabetes connections with Stacey Simms. Stacey Simms 37:16 That was so nice of her to say that at the end, it's funny, isn't it? The diabetes community, you know, we all kind of know each other from social media, or, you know, we've maybe we've met at a conference, but there's a lot of mutual admiration out there. It's always nice when people say that, but you know, as you listen, it makes me think if for some reason you feel like you're not really a part of this community, you know, maybe you listen or you're lurking in the group, and you've never reached out you're wondering if you know, what's it like, it's great. definitely reach out, definitely jump in. I mean, if you if you're fine, and you just want to listen, that's awesome. But we're doing a lot of really fun stuff in the Facebook group with zoom calls and surveys, and I'd really love to see you there and I really want you to know as you listen that your voice is really important too. So I'll link up more about Dr. Strand and her study and other information that we talked about in the show notes there's also always a transcript there at Diabetes connections.com And up next is tell me something good which is all from the Facebook group this week love it. But first diabetes Connections is brought to you by Dexcom. Now we have been using the Dexcom g six I looked this up it is two years now. We did a goofball video two years ago a little bit over Actually, it was the night that Avengers Infinity War came out and that's the night that we slept on the G six for the first time and we did a facebook live in for Benny wanted to do it but he was also really reluctant because he wasn't sure if it would hurt. So I will link up that video but I will tell you when I looked it up where to start because it's like an agonizing 10 minutes before he does it. But you know, the Dexcom g six FDA permitted for no finger six for calibration and diabetes treatment decisions. You do that to our warm up, the number just pops up. And after so many years of the previous dex comes we had to calibrate a couple of times a day you know you wouldn't get any blood sugar readings till you did so. It's amazing. We have been using the Dexcom for almost seven years now and it just keeps getting better. The G six has longer sensor were now 10 days and the new sensor applicator is really easy to use. You'll see on the video he was shocked, you know no pain. Of course we still love the alerts and alarms that we can set how we want. If your glucose alerts and readings from the G six do not match symptoms or expectations. Use a blood glucose meter to make diabetes treatment decisions. To learn more, go to Diabetes connections.com and click on the Dexcom logo. Tell me something good this week a bunch of great I'll call them little stories from our Facebook group. Last week I talked with these big athletic accomplishments, right, the Appalachian Trail marathons, but this week was a little different and I think these are worth celebrating as well. James said AP exams were easy on accommodations this time simply allowing students with type one, double the time so they could test treat etc during what was already A weird testing cycle. That is good news. Samantha says we sent out birthday cards to any kid among our friends that had a birthday this month since they can't have a party. And that was really fun. Her husband and her son are training for the new virtual jdrf ride. And they all just signed up for the Disney run again in January. She also wrote we are all alive. I see you, Samantha, that sense of humor. And speaking of the ride, Elizabeth wrote in that the reimagine jdrf my ride is good news. And she'd like to see me talk about the new program with one of the managers we have that in the works. I'm going to be talking about that. So the jdrf rides in person for the fall, unfortunately, were canceled, which I think was the right thing to do. But you know, there were a lot of people who really enjoy that and we're banking on it, and we're already fundraising. So jdrf my ride is a way for people to participate, even though they can't travel to these locations. I will put more in the show notes on this, but I will also be doing hopefully, a whole podcast on it soon. You're off Emil Altman, who is part of the Facebook group wrote in I don't know if this is what you're looking for, but I will be hitting 39 years of pumping the second week in June, and I hit 23 years of CGM use in March, he will mark 59 years with type one in November. I had him on the show a while back. He was an early adopter of diabetes technology. In fact, he worked in the industry for a while. So really great stories from him. Perry who lives with type two and is in the group. I'm always happy to see him. He said that his dad survived heart surgery that he is needed since March and finally had the valve repair last week, which would have been early May. Perry works with the fire department in South Carolina and he says good news. My crew has not liked masks gloves or hand sanitizer. And I gotta say, this is my favorite of the week. My dear friend and Sutton who is also the Outreach Manager for our jdrf is so creative, trying to keep people connected online. And she created two events for children who you know aren't able to meet up right now because we do a lot of that in our area. So she created And this isn't just for girls. And it isn't just for boys, anybody could go to anything. She created a tea party, a virtual Tea Party, and she created a virtual Lego build. And I'm going to share the photo of one of the kids built a meter out of Legos. And it's unbelievable. It looks so good. So I'll be sharing that and I hope you check it out really good and creative stuff. Do you have a Tell me something good story it can be. I think this is a great example of what I would call you know, these smaller stories, but still big accomplishments. Good news in our community. I mean, if you running a marathon or you're celebrating 59 years with type one, we want to share that too. But I just love this segment because it gives us a glimpse into the good stuff that's happening. You can share it in the Facebook group or you can ping me Stacey at Diabetes connections.com and tell me something good. Before I let you go tell you a story about something bananas that happened in my house recently and I think this might be the first chapter in my novel Next, The World’s Worst Diabetes Mombecause that book stops really right in the middle of middle school. And it's not as though we haven't continued to make mistakes. So I will tell you the punch line first in that everything is fine. Benny is fine. It's all good. But what happened was, he had had a day, just one of those Perfect Storm days where the decks calm had expired, I accidentally left his pump off. And of course, a few hours later, he was a very, very high now I since COVID-19, and we've been around each other so much. I've actually been less on him than I think I have been any time in recent memory. his bedroom in our new house is upstairs. Mine is downstairs, which is totally new for us. We have control IQ with the tanta pump, which has been a dream and he's doing really really well. But you know, things happen. So it's about six or seven o'clock at night. He realizes he's having the pump issue. Of course he didn't have the decks calm. So you know, we didn't know that there was an issue for a lot Longer than we would have otherwise, we did a blood sugar check and it just gives you that high, you know, there's no number associated with it. And, of course, we did all the protocol you're supposed to do. Huge shot, you know, gave him the correction by injection, change the pump inset slapped on the dex calm, drank a ton of water and checked for ketones. And I went downstairs because Ben he never has large ketones. I mean, in all of his years, he's had medium once I'm not would not get anything I can get. But you know, he's been high for a sustained amount of time through illness or just wackiness or you know, dumb stuff with diabetes, and he's never had large ketones, but we still do check because I just don't want to get lulled into complacency, right, people change things go I just I don't want it to slip. So he texted me and he said, Mom, the keto stick is black, which we've never seen before. So of course, I run upstairs and they look at it and it is it's super dark purple. So I'm like, Alright, well, you just had the injection because it's a urine stick. It's probably a couple hours behind. Drink a ton of water. We'll monitor From here, if in two hours, we still get a really dark, large ketone reading, we'll call the endo and he'll walk us through what to do next. Okay, so I'm freaking out, right? I'm thinking to myself, why don't I have a blood ketone meter? What's wrong with me? I'm the worst. Why don't I have so I'm online, I'm looking for blood ketone meters, you know, like, How fast can I get one and we just, you know, we, we've never had the need, so don't yell at me. Then two hours later, blood sugar is coming down nicely, he's feeling a little bit better, right? Things are gonna be fine. And I sit in his room and he goes to the bathroom and it comes out and he's like, wow, it's still really dark. And I look at the strip Unknown Speaker 45:33 and I noticed it looks really weird. We use the regular old keto sticks that have little square at the end, and it just has one square. Unknown Speaker 45:41 this stick Unknown Speaker 45:42 has two squares, and one is dark purple, and one is light pink. I thought Unknown Speaker 45:47 to myself, what Stacey Simms 45:48 the heck is this? So I look at the bottle. And if you know you've already know what happened, I had purchased diagnostics. These are sticks that measure glucose and ketones and The dark purple was the glucose hidden of large ketones. He had small ketones, maybe medium, maybe. So for, you know, big sigh of relief, and that was it. But oh my gosh, I was flipping out before that. So now we know now we have to be more careful. But that's the next chapter. I've already got The World’s Worst Diabetes Momstuff ready to go? Never a dull moment. All right, a big thank you to my editor john Lucas from audio editing solutions as always, for helping make sense of a lot of my nonsense. Thank you to you so much for listening. Don't forget about the book to clinic program. If you want to jump in on that or you know, a clinic that would like to get on the list to receive books. I'd love to hear from you as well. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself. Unknown Speaker 46:52 Diabetes Connections is a production of Stacey Simms media. Unknown Speaker 46:56 All rights reserved. All wrongs avenged Transcribed by https://otter.ai
There's a new superhero coming to the popular CW network lineup. Stargirl features actor Brec Bassinger, who lives with type 1 diabetes. We first spoke to Brec a couple of years ago, just after her run on Nickelodeon's "Bella and the Bulldogs." She shares what’s changed with her diabetes management since then, advice about speaking up for what she needs without feeling weird about diabetes & much more. Check out Stacey's new book: The World's Worst Diabetes Mom! It's an athletic edition of Tell Me Something Good with marathons! Hiking! And that feeling when you do something your middle school coach told you you’d never do because of diabetes. Join the Diabetes Connections Facebook Group! This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode transcript: Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes. By Real Good Foods real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:20 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:26 This week, there's a new superhero coming to the popular CW network lineup. Stargirl features actor Brec Bassingerwho lives with type one. After they started production, she found out another person in the cast and on her superhero team also lives with T1D. Brec Bassinger 0:44 I think it's more of having that companionship, that person who understands when we're on the 17th hour of work and they bring out another snack that just as carby but we're hungry and sleepy but we don't want to eat all these carbs and just being able to look at like okay, you get it, and talk to each other and understand that was just so nice to have. Stacey Simms 1:02 She'll share more about what it meant to have that actor Cameron Gellman on the set with her. We first spoke to Brec a couple of years ago after her run on Nickelodeon, in Bella and the Bulldogs. She talks about what's changed with her diabetes management advice about speaking up for what she needs without feeling weird about diabetes, and a lot more and athletic addition of telling me something good this week, marathons hiking, and that feeling when you do something your middle school coach told you, you never do because of diabetes. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I'm so glad to have you along. We aim to educate and inspire about type 1 diabetes by sharing stories of connection. I have a feeling that this interview is gonna bring a lot of new people into the show. So just a quick word. I'm your host, Stacey Simms. My son was diagnosed with type one right before he turned two He is now 15 years old. He's had diabetes for more than 13 years. My husband lives with type two diabetes. I don't have diabetes, I have a background in broadcasting. I spent a lot of time in local television and radio news. And that's how you get the podcast. A reminder popped up on my phone this morning about one of the trips I was supposed to be taking, like many of you, you know, of course, we had travel plans for this spring and this summer, and I was going to a lot of diabetes conferences. And it's so sad right to see those reminders pop up. But we have been doing a lot of virtual stuff. And that's been really fun to not the same, but a wonderful way to stay connected. And I'm bringing that up because I'm going to put links in the show notes. I've got a couple of events coming up jdrf and other organizations. I did one for Project Blue November not too long ago. They've been really great about scheduling these talks, the online summits, the webinars, and I've been thrilled because my topic right now is the world's worst diabetes mom, and it's been so much fun to share the information That's my book that is just out. And I'm still so excited about that. But it's been really fun to share it to people that I wouldn't have been able to meet, right? Because if I was going to Detroit, which I should have been going to this month, then we would be meeting people just at that summit. But instead, I get to meet people from all over the country. I'm trying to look at the silver lining on it. And really, that's about all we can do right now. But thank you so much the support for the book and just the last couple of weeks has really picked up if you want to check it out. Of course, I'll put a link in the show notes. It's on Amazon, The World’s Worst Diabetes Momis a parenting advice and humor book. It's kind of part memoir, kind of part, advice column and all about our experiences, making every mistake in the book when it comes to diabetes, and watching my son grow up as a confident and responsible and healthy kid, despite my many, many errors along the way. So thanks for letting me tell you about that. And boy, I hope we get back to see each other in person. Soon, it'll be a while, but it'll get better Right to Brec in just a moment. But first diabetes Connections is brought to you by Real Good Foods, nutritious food delivered straight to your door. They have so many options. They have pizzas, I think they were first known for their pizzas and they have this great cauliflower crust pizza, chicken crust pizza, and the pizzas come in different varieties or just plain crust and then you can make your own. We also really enjoy the breakfast sandwiches. They are seven carbs per sandwich. 22 grams of protein, they always post up on their Instagram, they have these grape varieties that what they show it you could really do to jazz this stuff up and people put all sorts of things to add to their sandwiches. I like them just the way they are. You can find out more about all of their products, where to buy How To order, just go to Diabetes connections.com and click on the Real Good Foods logo. My guest this week is the star of the newest superhero show on The CW Brec Bassinger plays Stargirl aka Courtney Whitmore, and this show is getting great reviews. I will link some of that up in our Facebook group. And if you're not familiar with the CW lineup, this is the same people behind the hit shows Arrow and Flash and Supergirl. I will put this clip in the group as well. No, you can't see it. But here's a little taste. (Show Clip here) Stacey Simms 5:38 Stargirl is set to premiere May 18. Now I first spoke with Breck three years ago, and since then she's moved out she's living on her own. And as you'll hear, that is a big reason why she now wears a CGM. I need to tell you we did this interview back in January before COVID-19 and the quarantines and all the changes we're going through right now. So I tell you that just So you're not surprised at the tone, right? It's a little bit different, a little bit lighter than we might have done right now. And she's also talking about travel and conventions and things that you know have absolutely changed. Alright, but here is my interview with Brec Bassinger Brec thanks so much for coming back on the show. It's been a while. It's great to talk to you again. Brec Bassinger 6:18 Yeah, three years. It's good stuff. Stacey Simms 6:21 A lot has certainly changed for you. This is so exciting. I mean, you were busy then. You're busy now. But what can you tell me about Stargirl? I mean, we'll talk about diabetes eventually. But let's talk about the show. Brec Bassinger 6:33 The important stuff in life. All of last year 2019. I was in Atlanta filming it. I've seen a few of the episodes and I'm really proud of it. I've never been part of something that I'm so like, shamelessly proud of where like the sounds are put doesn't like bragging I'm just so proud of I want every single person to see and I feel like that has to do a lot with the show runner. His name is Geoff Johns. He worked on like wonder woman and he just so amazing and like this spirit and happiness he brought to us that I feel like really just rubbed off on everyone. That was a part of it. So I I really am shamelessly. So excited for everyone to see it. Stacey Simms 7:10 I think that's great. And you know, we've been watching the CW, DC heroes comic book shows for a couple of years now. And you know, they're just fun. And they're for families. They're good hearted. Is this in that same spirit? Brec Bassinger 7:23 Yeah, it totally fits in with those. I've had. My family they got to all watch the first episode of the holidays with me, and they all really enjoyed it. I feel like as a whole, this one's more comparable to a film like a movie just the way films like the way it's written, like, like Flash and Arrow. It's normally like a villain per episode. And ours is more kind of like one season story arc like you can't just sit down and watch one episode and know what's going on. You kind of have to watch the full season more like a stranger things. I'd say that's kind of the main difference, the odds of like fear and it's just like happy it's not too dark. It's not Raise you like it's definitely a family friendly show, which there's not much of those. Yeah. Stacey Simms 8:04 a that is great to hear. All right. So I know nothing about TV process and CGI and everything else. But to watch what's out there already. It looks like not only are there a lot of special effects, there's a lot of practical effects and you're, you're doing a lot of stunts. Are you doing all of those stunts or some of those stunts? I mean, it looks like it's a very challenging role physically. Brec Bassinger 8:23 Yeah. So Stargirl, she has her her cosmic staff. So before we started filming, they put me in training with like staff training and stunt training. And so I got to do a lot of it. It was it was so funny because like at the beginning of the series, even with a couple weeks of training behind my belt, they would hand me the staff in a scene. And I just, like forget how to act because I would be so overwhelmed with having to like fight with this six foot long, both staff, but I thought that was really special because at the beginning like Courtney or struggle, like she shouldn't be as comfortable with that staff. And then towards the end of the season, when they gave me some staff, I felt so confident wasn't even thinking that it was coming. have like an extension of my arm at that point. And that's where Courtney should have been. So it was cool to kind of have that journey with Courtney. Stacey Simms 9:11 Yeah. All right. So let's jump in and talk about diabetes. When you're training with a six foot both staff and you are not six feet tall. What does that do to your blood sugar? I mean, I'm assuming that there was a lot of planning that had to go into that and you really had to stay on top of things. Brec Bassinger 9:24 Fortunately, like I exercise a lot so I know how to regulate my blood sugar cuz definitely like when I'm more active, it causes my blood sugar to drop. But with the stunt training stuff, it's a lot of just staying still and moving the staff around me so bad and it actually dropped my blood sugar. It was more trying to figure out like on fat I was working like one day I work 20 hours obviously that messes with my blood sugar and I really just have to learn to accept the circumstances and some days I was gonna have highs and lows and stop beat myself up about it because I I was I was working hours that aren't humanly normal. Unknown Speaker 9:59 Can you share your diabetes management. Do you wear a CGM? Do you use an insulin pump? That sort of thing? Brec Bassinger 10:04 Yeah, so I've always done insulin injections. I have my pin and actually have a half unit pin, which I got this past year, which has been really helpful. And then I have a CGM, a Dexcom. Stacey Simms 10:14 Oh, and when did you start using that, if you don't mind me asking Brec Bassinger 10:17 two years ago, Stacey Simms 10:18 so it's pretty recent. Brec Bassinger 10:20 Yeah, I started living by myself. And it was either that or one of the diabetes service dogs. And I had the CGM for the very first time I was like, Okay, I can't imagine a life without this just for safety reasons. And my mom wanted me to have something where she could feel more secure. Stacey Simms 10:36 I was gonna say who gave you that choice because as a mom of my child, Brec Bassinger 10:40 still in high school, especially during that time, I was having so many lows during the night, actually, when I started eating really healthy and working out a lot but because of that, I was just having lows all the time. And she's like, I do not feel comfortable. You living by yourself with all these lows. This is not safe. And so Stacey Simms 10:57 do you share with your mom like she just said does she see your number Is that not Yes, Brec Bassinger 11:01 I share with my mom, my dad, my boyfriend and my fellow diabetics with OnStargirl with me in Cameron Galvin, we have each other's follow apps. And that's really fun. Stacey Simms 11:12 Well, there's another person with diabetes on the show. Brec Bassinger 11:15 Yes. And we're both superheroes on the show. I'm like, come on. Stacey Simms 11:18 So did you know each other before the casting? Brec Bassinger 11:20 No. Well, that's the thing we had never met. I had a film something with one of my one of my friends. And she had reached out to me, she was like, Hey, can I give this guy your number? Like, you know, type one diabetic. He's talking about when you involve with Jr. And I told him, I thought you were so can I get in your contact info. So I got this random text like saying, Hey, are you going to the walk next month, if you are about to join you and your friend, Christina. And we just like it kind of sprinkled away. We never connected again. It just never worked out. And then he booked it in like, he goes to give me my number. And we're like, oh my gosh, we talked like three years ago. And he's like, Oh, it's all coming back to me. So it was like Cuz we hadn't met, we had talked it was really funny and weird. Stacey Simms 12:03 That's great, though. I mean, obviously not everybody who has diabetes is going to be friends. Right? I have my son accuses me of that sometimes like, Oh, you should meet this person. But it's like it worked out really well. Brec Bassinger 12:15 But I have to say like, I, maybe this is like an optimism or not not just rose colored glasses. Definitely. Every time I need a diabetic, they're the best person to my eyes and like, Oh, I lost them. We go through the same things for soulmate best friends, at least with my experience. Yeah, like I said, first podcast is might be a part of that as Stacey Simms 12:35 well. I think it's more, you know, a 15 year old boy doesn't want his mom making friends for him. Right. But everybody could definitely do that. Unknown Speaker 12:44 So all kidding Stacey Simms 12:45 aside, though, I'm sure you don't talk about it all day on the set. I don't want to imply that you do. But has it come in handy. I mean, do you both kind of help each other is there is it just a kinship and a friendship on set. Brec Bassinger 12:58 I think it's more of having Got companionship, that person who understands when we're on the 17th hour of work and they bring out another snack that just is carbee. But we're hungry and sleepy, but we don't want to eat all these carbs and just being able to look you get like look at each other and talk to each other and understand that was just so nice to have. Stacey Simms 13:18 And you're both Well, obviously you're playing the superhero, but the other actor is playing a superhero as well. Brec Bassinger 13:23 Mm hmm. Yes. Okay, so that Stacey Simms 13:24 will lead me to my one of my questions. I had a couple of listeners who wanted to know if you have any issues wearing diabetes technology under the costume. Right back to her answer, but first diabetes Connections is brought to you by One Drop, and One Drop is diabetes management for the 21st century. One Drop was designed by people with diabetes. For people with diabetes. One Drops glucose meter looks nothing like a medical device. It's sleek, compact, and seamlessly integrates with the award winning One Drop mobile app. sync all your other health apps to One Drop to keep track of the big picture and easily see health trends. And with a One Drop subscription you get unlimited test strips and lancets delivered right to your door. Every One Drop plan includes access to your own certified diabetes coach have questions, but don't feel like waiting for your next doctor's visit. Your personal coach is always there to help go to Diabetes connections.com and click on the One Drop logo to learn more. Right back to my interview. I'm asking Breck about wearing diabetes gear under the costume. So you don't wear an insulin pump. But you were a CGM. And the Dexcom is just a little bit of a raised bump. Do you have to do any accommodations for that? And I know it can be personal So Brec Bassinger 14:44 no, no, I'm, I'm an open book. When I was doing the cuts to the costume. It took in about 12 to 15 sittings hours and hours upon work like dozens of people touched and worked on it. And while we were doing the city I saw the G five which was bigger than the G six. It's still small but bigger. And they're like oh, but you can take that off. And I was like I can, but I'm not going to because I just I for safety reasons. It makes them feel more comfortable. It helps me like everything in Lj the costume designer, she was super understanding. But yeah, I haven't come my super suit is super tight. So I'm sure if you watch close enough in the series comes out, you'll be able to spot it sometimes but like it is what it is. Stacey Simms 15:30 Well, you just gave a challenge to everybody with diabetes in their family watching they're gonna be freeze frame. I know. Brec Bassinger 15:37 You're gonna be able to see it. Fortunately, I think a lot of times they would go in and edit it out. We do have that. Oh, yeah. And editing budget, which makes it nice, but I like some of the episodes I've watched. I've spotted it. So I'm so curious to see if other people will be able to as well. Stacey Simms 15:52 And let me ask you about Cameron, if you don't mind. And again, this is too personal. I'll take this part out. Let me ask you about Cameron, just as he were up. pump for CGM, can we be spotting for stuff on him? Brec Bassinger 16:02 Yeah. So see, I know he's had more experience in like the pump world than I have. I've never had one. So that doesn't take much. I'm not exactly sure. I know he was more lenient to take it on and off than I was. But that would be a question for him. I'm not really sure. Stacey Simms 16:20 All right, well, we'll just get a remote controls that will just stop it as the show goes. That's really funny. Yeah. You know, it does have to be difficult because as you said, there's crazy hours, they are feeding you, but maybe it's not exactly what everybody wants to have at those long hours. Those long days. As you mentioned, the carves, you've been in television for a long time. I mean, I'm curious, are you able to talk to people on the set and say, you know, I really would prefer this or I need that or is it just a question of you kind of finding your way through what's out there? Brec Bassinger 16:51 I have a couple things with that. It's really interesting. As an actor, it's so easy to get this diva persona you ask for anything in someone gonna call you a diva. And so I always felt really bad or that I couldn't ask for things because I never, I never wanted that. But then at some point, you have to realize there's people there that want to help you that will help you. It's their job to help you. And so walking onto this site, I made a pact with myself that when I needed help, I wasn't gonna be afraid to ask, because of what other people were going to think just for my own health, I say health as well. And so I went into the show with that new like perspective, and it definitely was helpful like, we have like a craft service guy, who who provide all the snack foods, and I became best friends with him. And they were absolutely amazing to me, they would get any like if ever there was a time I wanted something special. They never made me feel like a diva for asking for it, which is so great of them. And then also Karen and I share something else we both actually have celiac disease as well. So our diet is extremely strict and once again, not health that's not me being like a diva like Oh, I can't eat gluten because I don't want to it's I I can't. So once again, like I think maybe having these health issues makes it easier for me to ask because I kind of have an excuse. But it still was difficult to like, get over that hump. Stacey Simms 18:13 Well, and I know that there are going to be younger people, maybe more than usual listening to the show, because you're on it. And I'm so glad you said that, because it's very difficult to ask for things. Right? It's difficult to say, I'm different. I need nobody wants to be a bother or as you're saying, like a diva. You know, nobody wants to be perceived that way. And I'm curious, were you always like that? Or you said you made a pact on this show? Do you feel like it took you a while to build up to have the confidence to ask for those things. Brec Bassinger 18:42 100% I have to give a lot like living by myself for the first time. I think living in LA as I was 18 my mom and dad prepared me as much as they could, but it's hard living by yourself. And I think that's the time when I really learned to not be like diabeetus I, that's the time of my life that I learned that it's okay to ask for help. But it took practice, I think asking for help. It's a skill that you have to work on. And sometimes you have to swallow your pride. And sometimes you have to feel like a diva or needy. But in the long run, if you can do that, you'll be so much happier. Stacey Simms 19:17 That's fantastic. I know you've gone to jdrf children's congresses, and you've been very involved with jdrf What's it like for you when you meet these kids? Because they're so excited to meet you. You know, there's somebody on TV who lives with type one and goes through what I go through and take shots and has to put the CGM on and their mom worries and wants to follow just like my mom. Is it still for you talk to these kids? Brec Bassinger 19:38 Oh, yes. Like I said, maybe it's a rose colored glasses. But every time I meet another diabetic, I have like, this instant connection with them. I'm like, Oh my gosh, do you miss drinking a regular coke without having to pay for it for the next 24 hours? Like, oh my gosh, I can't remember the last time I did like, it's so funny. It's like what I like when you can connect to someone on such a personal thing. Like it's just fun and then yeah Like, I was a kid with diabetes, and so like, being able to, like, have these things that I've learned throughout the years and kind of helping them like if they've had questions, I think, oh, I've been in your shoes. Let me tell you what helped me. Hopefully it'll help you. I mean, all bodies are different, but kind of like that older sibling. I think that's so fun. Stacey Simms 20:19 Yo, I wanted to ask you, and this may be a really dumb question, but I'm gonna ask it anyway. I wanted to ask you, there was a movie that you were in and I couldn't see it. I'm sorry. I don't do any kind of horror movies. I don't do scary stuff. 47 meters down on K. Yeah. Right, which was water and scary and AR and was that and again, I don't know anything about how they make movies. So I don't know maybe it was in a swimming pool. But was that hard to film with somebody who has type one I did that presented a unique challenges. Brec Bassinger 20:47 That was the best experience for me. It's because I actually never was in the water. Not once the filming process that you were in the water was insane and like in hindsight, Cuz I actually originally auditioned for one of the main girls but whatever it was maybe I wasn't right for it shooting schedule a Stargirl didn't align for whatever reason I didn't get it, but they, they offered me a smaller like, I'm like the mean girl in it. And in hindsight like it would have been a really big team to overcome having to be under what they were under water for eight hours a day, I'm sure like, my blood sugar would have I would have figured it out because I refuse to let it stop me from doing anything. But it definitely would have been a battle that I haven't had to deal with yet. Stacey Simms 21:33 All right, sorry. For my ignorance. I find seniors I'm sure it would have known that but there's no Brec Bassinger 21:38 okay, every like every time someone finds out, I'm like, how'd you get killed by a shark? I'm like, I don't get killed. Like, oh, you're the one that survives the shark. I was like, No, I never see the shark. Unknown Speaker 21:51 Totally Okay, I got it. That's hilarious. Stacey Simms 21:53 Oh my god. That's too funny. When you were diagnosed, you were eight years old. And I'm curious. Did your family meet other people with diabetes right away. Did you do the jdrf walks and things like that? Or did it take you a while to find people? Brec Bassinger 22:06 I got involved with jdrf pretty quickly. I think I was diagnosed in January. And I think that October I did the walk. And that was actually I think the that year was the year I was most involved with jdrf not talking about like, recent years like ambassador, things like that. But we raise so much money, we had a team of like 40 people come out and all walk with like breakfast buddies shirts on pretty instantly I got involved with jdrf they've always been that sense of community for me, and I'm so grateful for them. Actually. Funny enough, I think when I was kin to be chosen for children's Congress is one of like the type of kids that goes you have to like write an essay. And I wrote an essay trying to get chosen and I didn't try it. Eight years later, or nine years later, whatever it is, I got to come as like one of the people speaking on the panel and one of like, the role models for all the kids who got Cuz I'm like, wow, that's full circle. I felt so blessed. It was such a cool like thing to look back on. That is Stacey Simms 23:06 great. Oh my goodness yeah children's Congress really is incredible. So your schedule for the next couple of weeks months is going to be bananas I would assume How does it work? So the whole the whole series is shot. Brec Bassinger 23:19 Yeah, so we shot for eight months last year and actually like the past few months has been pretty not busy for me because I'm just we call it the hiatus and we're waiting to hear about season two. So fingers crossed about that. But right now it's kind of like the waiting game and then I imagine I'll start doing press promoting first season I heard I can't talk too much about it. But I've heard about me getting to go to some of those conventions like similar like Comic Con or writer con things like that. And I'm just like, above the moon I think that's the coolest I'm so excited. Yeah. Stacey Simms 23:53 Well, and you know, superhero movies of the whole genre is obviously goes without saying is so huge right now. Is this something that When you were younger, that I mean not even as an actress because it means are great roles to play. But as a consumer did, is this your thing? Did you go to these kinds of movies? Did you are you into comic book characters, Brec Bassinger 24:10 so I never read comics growing up, but I've always been like the first one to go see the comic movies that come out. That being said, though, like, I remember one day on set in particular, I was in a harness, because I was supposed to be flying in the scene. So I was in our green screen room on set, hanging in this harness in my superhero costume with this like custom, beautifully made cosmic staff. I was like, Oh my gosh, my dreams have been made. I did not know this was my dream. But this this exact thing is my dream. He must Stacey Simms 24:41 be wild to work in the green screen setting. So I mean, as an actress, you know, you don't know what's around you. Brec Bassinger 24:47 It is so weird. I had never done anything like it before. And so in it, there's their strike. he's a he's a 15 1615 or 16 foot robot and while we had a practical one, any Time like we were fighting together, or a lot of times, if we were in random places just talking, it was all CGI. So I was talking to that tennis ball. Like if you've ever watched like BTS videos like, I had that as well. And I'm really I'm really hoping from many reasons that we get picked up for a second season, but particularly because like, I'll have watched the whole first season by the time we go back to phone. And so I like when I'm talking to that tennis ball. I'll know exactly what I'm talking to. For first season. It was pure imagination. I was just doing the best I could. I was like, What second season I would have more point of reference, but it was it was definitely hard, but it's really, really cool. Stacey Simms 25:38 I'm gonna dive in. We're gonna start wrapping it up here. But so here's a question I got from a listener. It's actually from Jessica wanted to ask her her daughter's question. And this is a might be a tough one. She wants to know why you like acting. This young woman is nine years old and has typed on herself. Brec Bassinger 25:54 Oh, why do I like acting? It's funny. So the only Everything I've ever wanted to be in my life was an astronaut because I thought the moon was made of cheap. And then when I found out the moon wasn't made of cheese, I said, Well, I don't want to be an astronaut anymore. I'm gonna be an actress. Like little six year old Breck was running around and people will be like, why do you want to grow up and I'm like, I don't want to be anything, I'm gonna be an actress. And so I feel like it really was just put in me. And I think I love it. Because the way it stimulates my creative side, and also the way it makes me, it's created this, I'm able to have empathy for other people in my work. So like, as I take on another character, I feel like while studying and becoming this character, I learned so much about the world and different people in it. Just that I'm such a people person. So it's like a job where I literally get to play other people and learn about people is such a perfect fit for me. Stacey Simms 26:52 And before I let you go, I don't want to make too much of an issue of it. But I do think it's worth talking about that in the last few years. It's been really Nice to see a lot of the superhero shows and movies be led by women. I mean, this show is Stargirl. And I think that's just phenomenal. I'm so excited to have young women and little girls watching this show. Does it make you a little nervous though? I mean, when you're filming this Did you kind of think of the back your mind, I'm gonna be somebody's role model. Somebody is Halloween costume. Brec Bassinger 27:22 Unfortunately, I feel like fell on the Bulldogs, which was the Nickelodeon show I was on for a couple years, like prepared me for that or prepared me for this. Like I played a female quarterback, very strong female lead. I had girls dressing up for me of Halloween. So I think that was like a good stepping stone for what the school be. I mean, I'm not sure what this will be. But I hope it's big and I hope girls are watching it and feeling inspired. I feel prepared. I'm not scared. Stacey Simms 27:49 Yeah, that's a great point because that show was terrific. And really was it was different to which was fun. You know, it really was different light. brick. Thank you so much for talking with me. Please tell kameron that we said Hi, and we're excited to watch the both of you on this show. I really appreciate you spending some time with me. We'll be looking for the CGM outline. And I hope we get to talk again. Thank you so much. Brec Bassinger 28:13 Thank you. Good to talk to you. Unknown Speaker 28:21 You're listening to diabetes connections with Stacey Simms. Stacey Simms 28:26 You can find out more about Stargirl and about Rick, just go to Diabetes connections.com and click on the episode homepage. We have transcriptions. Now I've been adding for 2020 and hoping to go back into that for many more episodes. But if you know someone who would prefer to read the show, rather than Listen, you can send them to the episode homepage. You should all be there along with the clip I was telling you about earlier and some more information about BRAC I think this is going to be a big hit. I'm so excited for her and I will follow up and see if we can talk to Cameron as well. nice thing to have support and somebody who gets it on the set. All right up next is tell me something good but first diabetes Connections is brought to you by Dexcom. And you know when you have a toddler diagnosed with type one like we did you hear rumblings for a long time about the teen years right over the treaded teen years, but it did hit us a little early. And I was really glad that we had Dexcom Benny's insulin needs started going way up around age 11. He looks like a completely different person. I was going through photos, my cousin was asking me to send some photos for an event that she's having. So I was going through photos from three to four years ago, right when he was in the swing of this right at the beginning. He looks like a completely different person. He's probably grown six or seven inches just since age 11. I don't have to spell out what else has happened. He's shaving. I mean, he looks completely different. It's so wild. But along with the hormone swings, I just can't imagine managing diabetes during this crazy time. Without the Dexcom continuous glucose monitoring system. We can react more quickly to highs loz see trends and adjust insulin doses with advice from our endocrinologist. I know using the Dexcom g six has helped improve Benny's agency and overall health. If your glucose alerts and readings from the G six do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions. To learn more, go to Diabetes connections.com and click on the Dexcom logo. In Tell me something good This week we have some great stories from athletes. I'm going to start with Zoe cook. She was told by a coach when she was younger that she would never be an athlete because of type 1 diabetes. So he says she was diagnosed at 10 kicked off the competitive swim team because the coach said she was too high risk that in middle school when she was 13. Her test coach told her that because she went low running sprints, she would have to leave the team. That was the coach who said she would never be an athlete. So he says she's really glad that she had parents who could tell me he was ready. Wrong way to go. So we and she also says that last year she ran the New York City Marathon with her mother who also has type one way to go. So we and way to show that dumb coach. You know what things really are all about. It is amazing how I always think that that's ancient history, right that someone will say you can't do this because of diabetes, but it still happens and we still have to advocate for our kids. Or if you're living with type one I know you know, you have to advocate for yourself. And you know, we'll get there. It's just a lot of education. Julie's Tell me something good is herself. Julie Raiden has been type one for 53 years. She posted all her wonderful numbers. She has a pretty extraordinary one c 4.9. She has incredible time and range and she is 61. If you listen to the show, often you know that I don't often share numbers. We all do this on our own way. But man Julie, I wanted to share that because I can't even imagine how hard you work. Good for you. She also is a hiker and stays very active. I did ask you I sent a note back and I said, What's something you didn't think you could do when you were first diagnosed that you have been able to accomplish? And I thought she would say, you know, hiking or staying active or something like that. And she really hit it on the nose when she said, I hate to say this, but successfully living to 60. I was always told I wouldn't. So that does give you perspective. Julie, thank you so much for responding and sending that in. I appreciate it. And finally, Mike Joyce. Mike shared that last year he hiked 2200 miles from Maine to Georgia. And this year, he is going to hike the Pacific Northwest trail that's a 1200 mile trail from Glacier National Park to Olympic National Park. I think I've profiled him before or mentioned him because I remember this last year when he was on the Appalachian Trail, right Mike? He says he uses a phrase of the inhaled insulin and packs a ton of food. Remember this Mike, I'm gonna have to look you up and put up a link from from last year when we talked about this. And he sent me some pictures that I'll share on social media. And one more story for today. Something good. I got a review that I wanted to share. I sometimes share reviews, I get reviews on podcast apps like Apple podcast player or whatever, you know, there's a bajillion of them. And it's always wonderful to get a nice review. So I appreciate that if you want to do that, you know, I love it. Thank you so much. It does help the show. But you know, frankly, Apple podcasts is kind of a pain to leave reviews on. But I got one that made me really smile and I wanted to share it. T Piper writes, Stacey is a diabetic. I love it. Thank you for being so Frank and direct with the head of Dexcom. You are our voice and we are so grateful. Our family is so appreciative. You know, that refers to the Dexcom interview we did recently, I believe about the CGM in the hospital. And if you haven't heard, I did ask about assistance, financial assistance during this time because other companies are doing that with Dexcom follow suit and they said at the time while we're thinking about it, we haven't done anything. And more recently, they did announce Some help so I will link that up as well. But t Piper, that's very cool. Thank you very much for that review. I have to tell you it made my husband really laugh. I showed it to him and he thought that was amazing. A diabetic, I appreciate it so much. All right, give me your Tell me something good stories. I love to share them on the show. I post in the Facebook group all the time, or you can always email me Stacey at Diabetes connections.com. Working on a couple of projects behind the scenes, if you have a homegrown diabetes, a company or a smaller diabetes company and you are looking for advertising, I'm going to be posting in the Facebook group and probably on the public page as well pretty soon about a new project that I'm working on. And it's an opportunity for smaller companies to get attention from the type 1 diabetes community so be on the lookout for that. I'm very excited about it. I already have a couple of partners on board and you know, we're just going to keep moving forward. Things do not look the way we thought they would look this year. But we have no choice but to keep moving. And thank you all for all of the support you show not only by listening, downloading and sharing the show, but by taking part in the zoom chats that I'm doing by just having the community in the Facebook group. It really helps me personally, I just feel better about things and I hope it's helping you as well. thank you as always to my editor john Buchanan's from audio editing solutions, who is slam packed jam busy Is that even a word phrase? Because everybody wants to do a podcast now and everybody wants to do one, you know, remote at home and doesn't know how to do it. So they're all calling john and he's really busy right now, which I guess is good. There's another silver lining. And thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Brec Bassinger 35:48 Diabetes Connections is a production of Stacey Simms media. All rights reserved. All rounds avenged. Transcribed by https://otter.ai
We started the show in Summer of 2015. This week, Stacey takes a look back at what was happening in diabetes technology at that time. Tandem had just announced you'd be able to upgrade without getting a new pump, Dexcom gave up on the Share cradle an Bigfoot & Beyond Type 1 were just coming on the scene. Check out Stacey's new book: The World's Worst Diabetes Mom! In Tell Me Something Good, we share your stories! What was happening with your diabetes in 2015? April Blackwell on Instagram Renza's Tiger Blog Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android
Chris Wilson helps run some of the largest diabetes technology groups on Facebook. He's also always on the lookout for the latest news from these companies and very involved in clinical trials. Chris also shares his diagnosis story, inside scoop on Facebook groups and even talks about bowling in sandals. Yikes. Check out Stacey's new book: The World's Worst Diabetes Mom! In Tell Me Something Good, a middle school 3D printing class helps out a 9 year old with type 1 and a running event goes virtual & big Join the Diabetes Connections Facebook Group! This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Sign up for our newsletter here Check out Aaron Kowalski's virtual run Twitter thread here 3-D printing club news story ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcript Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes. By real good foods real food you feel good about eating, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:21 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:27 This week, Chris Wilson helps run some of the largest diabetes tech groups on Facebook. It turns out he's also very involved in clinical trials. This one for a new emergency glucagon, Chris Wilson 0:39 kind of an interesting experience. They hook you up to IV and so on and push your blood sugar down, I want to say under 50 and then turn off the IV and give you the injection and watch what happens. Stacey Simms 0:52 Chris tells us more about participating in trials. Staying on top of diabetes news and bowling in San Jose. Tell me something good. A Middle School 3d printing class helps out a nine year old with type one. And a running event goes virtual and big. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I am so glad to have you along. I'm your host, Stacey Simms. And you know, we aim to educate and inspire about type one diabetes by sharing stories of connection here. How are we doing these days? I gotta tell you, I'm having good days and some rough days. I think like everybody out there. I don't know. I feel like I'm not doing enough. Right? I have this weird feeling some days where it's not like I'm not doing enough in my house, which I am not because we moved to a new house at the beginning of March. I know great timing. And so when I tell people that they're like, Well, you've had so much time to set things up and get organized. I kind of Yeah, I guess We haven't really jumped right in and set everything up the way I think we might normally do. We certainly have the time. And many rooms look very nice. Many rooms still have stuff in boxes. Because I don't know, there's there's some days where I have a lot of urgency. And I feel very efficient. There are some days when I lie on the couch and watch YouTube all day. So I'm trying to be kind to myself, like I always advise everybody else to be, you know, I don't think this is very unusual. There are some people doing amazing things out there. I mean, I don't so, you know, I'm trying to figure out what I can do. I'm trying to serve the diabetes community, certainly, but you know, I think we'll find ways to help as we move forward here, certainly in my local community as well. But I was talking to my kids about school. My daughter was concerned about the number of credits she was able to register for, I mean, long story short, like a lot of colleges out there. They're making some changes they're adjusting. No decisions have been made yet, but the way that people registered for classes changed a little bit. And so she was really concerned about Getting the number that she wanted as an incoming sophomore. And I said to her, you know, why? What's the big deal? Because this school year may look totally normal. Everybody may go back to college, everything's fine. You know, who knows? It may look extremely different. Nobody goes back to college, they continue online learning or they get there and things change. I mean, who knows what's going to happen this fall? So all we can really do is act like it's going to be, quote, normal, register for the classes that you can, but expect the unexpected and realize that, you know, maybe you'll take some summer classes. Maybe you won't graduate in exactly four years, which horrified her you she's a very good student. And I was able to say to her look, did you have big plans for 2023? Yes, she's not on a set schedule, which kind of made her laugh, but also made me realize I've got to be more kind to myself, too. I mean, the podcast is not getting out on Tuesdays, like clockwork, as it has been, and I very much pride myself on that schedule. I think it's Hey, to let these things go, right. I mean, we want to come out of all of this with our mental health as best as it can be. And if that means tonight, I need to watch the what's up with that skit from Saturday Night Live on repeat, because and if you haven't seen this, I'm not really into Saturday Night Live lately, but I saw the one from home. I laughed so hard at the what's up with that, and I couldn't believe it was an ongoing sketch. It's so stupid and so funny. And it was just remarkable. And the one with Zach Galifianakis where he's playing the flute, I'll link it up in the show notes. That's how much I left and it's so dumb anyway. But if that's what I need to do that night, I'm going to let myself do that. So a long way of saying, I hope you're hanging in there, I hope you're not being too hard on yourself. For You know, when we went into this, we all thought I'm gonna organize my house and I'm gonna work out every day and you know, there are people doing wonderful things, but it's okay to do ordinary things and be there for each other and just come out the other side of This was a feeling that we made it through. I keep reminding myself we're doing something important by staying home. Right. That's how we're helping. One thing that really has helped me a lot through this is doing some of these live events and chat events and just the zoom calls. I've been doing a bunch lately, had a lot of fun last week doing the world's worst diabetes parent meetup. That was amazing. Thank you Project Blue November for letting me do that on your page. We got a great group chat with some parents told our mistake stories and gave away some books gave away some amazon gift cards. I'm doing stuff this week with the college diabetes network. And of course, I will be doing the 300th episode taping. As you listen, that will be Wednesday. So I believe this episode is going to be coming out either late Tuesday night or Wednesday morning. So Wednesday, April 29. I will be live on Facebook answering your questions and talking about the diabetes community in June of 2015, which is when I launched the podcast holy cow So that's the episode 300 taping. Okay, all right, getting to Chris in just a moment. Diabetes Connections is brought to you by real good foods. And last night Ben he came downstairs and said, Hey, do we have any ice cream? And we're at the point of this where we have quite a lot of ice cream we have, but we didn't have what he wanted. We had like regular I think my daughter had some Ben and Jerry's. We had some mini ice cream sandwiches, but he wanted the real good foods ice cream that I've talked to you about. And I said, I think maybe there's some in the garage freezer and he went and looked and there wasn't any love, so I have to order some more. And as I'm looking right now there is a sale 20% off on their ice cream, so I forgot to get Benny's order today. He really liked the peanut butter. They have the super premium peanut butter chocolate chip ice cream is so delicious. I happen to be a big fan of just the chocolate and my husband likes the mint chocolate chip. We didn't try the salted caramel list. I'll have to put an order in for that. This ice cream is so tasty. It's not like that. A lot of lower carb ice creams, you know that chalky kind of chunky weirdness that you can get sometimes, but this is, as they say, a real ice cream experience with real ingredients, low sugar, 200 calories per serving, they list all the ingredients online so you can read everything that goes in it. And of course, when they ship it to you, they ship it in a cooler with dry ice when we got our first shipment of ice cream. It had we're in North Carolina, we're in Charlotte where it's already warm. I know it may have just snowed where you live, but it's been beautiful here and when we got our first shipment, the ice cream is frozen solid. They do such a great job free shipping on orders over $50 just go to diabetes, connections calm and click on the real good foods logo. My guest this week is well known to a lot of you who are on Facebook, or maybe his profile picture is you may not actually know too much about him and that's why I'm talking to him today. Chris Wilson is one of the admins for two very large closed Facebook groups. We're talking thousands of people in these groups all about tandem and Dexcom. Well, if you're not familiar, and I know some people still aren't on Facebook or have left, you know, an admin is somebody who may have created the groups, but is always there to make sure things run smoothly. They can add or remove people or kick you out for bad behavior, that sort of thing. I run two groups on Facebook, and it's a lot of fun, but it can be a lot of work. And Chris always seems like he knows an awful lot of behind the scenes stuff. He doesn't work at tandem or at Dexcom. He gets asked that a lot. And we also talked about his clinical trial experience. I didn't realize like he had so much to say about that was very interesting. So here is my interview with Chris Wilson. Chris, welcome to the show. Thank you so much for jumping on to talk to me. I really appreciate it. Well, thanks for the invite Stacey. You know, it's one of those situations where I feel like I know you because we talk on Facebook all the time and I see your posts and you know, I read the valuable information you provide And then Chris Wilson 9:00 I realized as we were recording as I, as I hit record, I don't really know that much about you at all. I'm not sure I've been less prepared for an interview in a long time. So I appreciate you writing this out with me. Well, I mean, that's kind of the the nature of the the online community is we interact with people, you know, we get to know them, at least in one aspect of their lives, but somebody that you've never met in person, you never had a chance to sit down and have a drink with or whatever. So, Stacey Simms 9:29 well, I'm gonna start with a very hard hitting question. I did my research and I looked you up on Facebook. And it was very difficult because we're already Facebook friends, but it does say the last time I wore shoes was January 2015. Is that true? And if so, what's with the not wearing shoes? Chris Wilson 9:47 That is true? It just sort of I mean, I wear sandals. outside the house, it just sort of happened by accident. My job's done. don't require me to, you know, wear close toed shoes or anything I live in Southern California on a really cold night in the winter it might get down into the 40s there's you know, no real need to wear close toed shoes and insulate one's feet. Stacey Simms 10:18 All right, okay, so I have a much better mental picture of your day to day life. No close toed shoes do formal wear. You're not going to the office with a briefcase. Chris Wilson 10:28 Right? I even actually have a pair of custom made bowling sandals that I use for bowling. Stacey Simms 10:33 You do not you? I do. Can you post a picture of that when we do the when we hear this? Because that just sounds like you never got hurt wearing them Unknown Speaker 10:42 now. Oh, man. That's funny. Chris Wilson 10:47 Well, when I had the idea to do it, because bowling was at that point, the only time I was wearing shoes, and I sort of had the idea of Hey, I could you know, take the soul off of these a tournament a bowl of cheese, replace it with a bowling soul and be Half of my friends said, Oh, that's awesome. And about the other half said, That's the dumbest idea I've ever heard in my life. Stacey Simms 11:07 Well, now that I know you're not getting hurt, I'll refrain from commenting, but I'm what my initial reaction was. Okay, so we're going to talk bowling, we're going to talk all sorts of stuff. But let's start with diabetes, which is really kind of how we know we found each other. Certainly, Tell me your story. When were you diagnosed? Chris Wilson 11:26 I was diagnosed my freshman year of college. Oh, wow. I had and I was probably starting to really get the beginnings of symptomatic as I was leaving for college. But you know, you go away in August and I went to school 3000 miles away from my parents on the other side of the country, and so no interaction with them. You know, they didn't see me for anything like that. And I started losing weight in the classic symptoms thirsty all the time having to go to the bathroom all the time, but you never crossed my mind that something that could be diabetes. This lasted all the way until Thanksgiving. I went to go see my grandparents for Thanksgiving. And my grandmother took one look at me and said there's something not right with you. My grandfather was type two. So he had a meter and two mornings in a row, they prick my finger and got readings in the three hundreds. And I went to calling the advice nurse for my health insurance and said, you know, hey, what should I do? I'm from California. I'm in DC going to school. Right now I'm in Pennsylvania, my grandparents house and they said, stop whatever you're doing, do not pass go do not collect $200 get yourself to the nearest emergency room. When I got there. Actually, the meter wouldn't even read. They had to send my blood to the lab to get a blood sugar reading and it came back at almost 1000 milligrams per deciliter. And I was well into DK And the doctors looked at me and they said, We can't explain how you're alive, let alone conscious. Oh my gosh. And so I got to spend a couple of days they actually sent me to the pediatric ward even though I was an adult, because that's where all the people that knew type one were right. So I spent a couple of days in the hospital there my my mom flew out to come and collect me and they taught me how to give myself shots and prick my finger and everything else. And then after that, I went back to school when finished out the semester. Stacey Simms 13:32 Okay, I have a couple of quick questions for you. Do you remember what it felt like when you got your first dose of insulin? I've heard that that's just an amazing feeling after you've been feeling lousy like that for so long. Chris Wilson 13:43 Oh, it is it's you can almost like feel the the ketones leaving your blood is sort of the the way that I think about it. almost feel like pins and needles inside as things get really bad. And if it's happening slowly and building up, you don't necessarily feel it acutely. You just sort of build up a tolerance to it when they started me on the insulin and everything else it was just like this weight was lifted and I didn't even realize how bad I had been feeling until I felt better. Yeah, that's amazing. I Stacey Simms 14:14 you know, obviously not living with diabetes myself I don't have I can't I can't relate to that at all. But I can only imagine how much better you must have felt. But then to go back to college, what was that transition? Like? Because I assume your mother did not move into your dorm Chris Wilson 14:27 always wanted to? She did not. She made me tell my roommate and all the other people on my floor. What was going on? Some of them or were actually like oh, wow, cool. You know, you get syringes and stuff. It's almost like we're living with a druggie. Lots of joking about it, but at least the first couple years actually, it was almost like an extent I had a really long honeymoon phase. And so I didn't even really need it. You know, I gave myself the insulin and I ate when I was starting to feel hungry. You're low and didn't really even think about you know, managing intensely or correctly or the way that we do now. It was just okay this happened. We'll we'll deal with it. And Stacey Simms 15:15 and when when was this What year was this? If you don't mind me asking? This was 1997 Okay, so before certainly before CGM, and well before a lot of people even had an insulin pump, Chris Wilson 15:25 right he will log was I believe brand new at the time. Stacey Simms 15:29 It is wild to think about that stuff. I mean, Lantus had just been approved pediatric Lee when Benny was diagnosed, we thought Wow, this is so cool. We get to use this new insulin that just got approved. You know, it was really it's amazing when you look back on it. When did you start getting interested in technology and I say it like this because I assume you are pretty interested since you run these these groups now on Facebook. Chris Wilson 15:50 I didn't pay too much attention to it because for the longest time, I was surviving uninsured haha and the over The counter Rnm I actually couldn't get to a Walmart. There wasn't a local Walmart. I was getting it from CVS in the basement of the Watergate hotel, if you believe that. That was the the local CVS. Wow. And that was just, you know, kind of what I knew. I mean, even at that point, anything newer than that, the more modern analogs and stuff like that was just prohibitively expensive without insurance. So I figured that out, I figured out you know, which meter had the cheapest test strips that I could could get and I didn't test nearly enough wound up in it DK and hospitalized briefly, once during that time, although not entirely due to the insulin regimen. My parents had come to visit me and I, being a impetuous college student got mad at them and decided I was going to take a road trip so I hopped in my car and drove to Florida from DC without any insulin. By the time I got back, I was feeling pretty awful and went and checked myself into the yard. Stacey Simms 17:00 I feel like I want to say something. It's funny, Chris, as a parent, I'm, you know, I hold my breath when I hear stories like that, but as someone who's talked to people with diabetes for a long time now, so many people have done things like that it's just life, you know, and if you as you're listening you're I could never imagine, you know, things happen, right? It's nobody's perfect. So I'm glad you were okay. That is kind of scary. Chris Wilson 17:24 Well, I wouldn't do that now. Oh, of course. I know. I know a lot better. Now. Stacey Simms 17:28 Of course, when were you able to get insurance and then to get you know, a pump or CGM and everything that you have now. Right back to Chris in just a moment, but first Diabetes Connections is brought to you by One Drop and getting diabetes supplies is a pain. Not only the ordering and the picking up but also the arguing with insurance over what they say you need and what you really need. Make it easy with One Drop. They offer personalized test trip plans, plus you Get a Bluetooth glucose meter test strips lancets and your very own certified diabetes coach. Subscribe today to get test strips for less than $20 a month delivered right to your door. No prescriptions are Kobe's required. One less thing to worry about not that surprising. When you learn that the founder of One Drop lives with type one, they get it One Drop gorgeous gear supplies delivered to your door 24 seven access to your certified diabetes coach, learn more, go to diabetes, connections comm and click on the One Drop logo. Now back to Chris talking about when he was able to get coverage for what he really needed. Chris Wilson 18:39 It was with the ACA when in fact, I had actually looked at insurance options briefly and the one insurer in because I've moved back to California by this time, the one insurer in the state that would even offer me a policy quoted me a premium that exceeded my gross income once the ACA went into effect and they couldn't raise the premium Just because I had type one diabetes, all of a sudden it became an option and you know, we went through the the standard of Okay, we're not going to do the the regular the mph anymore, we're going to get you on lattice and get you on human log. And after trying that and tweaking things here and there and figuring out what worked and what didn't, and they decided that really, my basal needs fluctuated so much throughout the day that I needed to, to be on a pump. Then after I was going through, I don't know 1015 test trips a day cuz I was testing about once an hour, trying to catch the spikes and dips and figuring out where things were. And I was regularly having my blood sugar dip into the 50s and 40s without feeling it. At that point, my endocrinologist looked at me and said, You know what, we should probably put a CGM on you. Hmm. I said, Okay, yeah, let's let's do that. Stacey Simms 19:58 What did you think? When you got on Dexcom, Chris Wilson 20:01 my first thought was, oh my god, this is amazing. I can actually, you know, see, maybe not quite in real time but basically close enough what's going on and where I need to make adjustments to things that are crucial say, you know, make knowledge your superpower. And then a lot of ways it really is. And that kind of actually dovetails in with my job because as an IT consultant, I do a lot of working with data and data analysis and stuff like that, and actually having enough data to be able to analyze it and then make changes based on it. Yeah, was almost a perfect fit. Stacey Simms 20:40 So how do you get from being you know, a regular guy, work for yourself and you're on a pump and you're on a CGM, taking care of yourself. You're doing well to suddenly having thousands of people in these Facebook groups where you big Facebook guy from the beginning? Chris Wilson 20:54 Well, I've actually been on Facebook. Basically since there was a Facebook. I was in college. We were, I want to say the fourth or fifth school to get Facebook. That was number one was obviously Harvard, that Stanford was second. And then they started expanding to two other schools. And where did you go to Unknown Speaker 21:15 college? I don't know that you said it Chris Wilson 21:16 was it was George Washington University. I see. Stacey Simms 21:19 That's funny. I mean, I went on, I got on in 2008, which I thought was really early. If you go, there's no record of that. Because long story short, I messed up my Facebook when I left my old job at the radio station, and went from like a friend to a pub, whatever I did, I messed it all up. But I was on in 22,008. And I thought that was early. But oh my gosh, you've been there really? Since the beginning? Chris Wilson 21:40 Yeah, I want to say it was like 2001 or two, when it was the Facebook when it was the Facebook. My endocrinologist actually had encouraged me to when I was even just starting to research pumps, and then CGM and the other things. I was encouraged to go online, find user groups, do some research. So I joined initially the the tandem t slim pump group. And as I got better at using it and more familiar with it and figuring out how things worked, and at least the best way to do things for me, I started answering more and more questions. After a few months of that, I think one of the, the original admins of the group asked me if I would be willing to help out with admitting and you know, making sure people didn't do things that violated the rules and answering questions and stepping in when incorrect information was given out, and that sort of thing. So that happened, and not too long after that happened. Then, when the G five came out, one of the admins of that tandem group started the G five CGM users group. She sort of tapped me to come in and help out with that. So that's sort of how I wound up there. I mean, both of the groups have have grown significantly since then. It used to be that we, you know, let anybody post whatever they wanted pretty much. It that's, you know, had to be clamped down on somewhat just to keep things orderly. Stacey Simms 23:12 What's the what are some things that people should know about Facebook groups? Like, is there anything that's kind of behind the scenes stuff that would help us either post better or use them better? Or they just drive admins crazy. Chris Wilson 23:24 One of the big things that that gets me at least is Facebook is not Twitter. There's no character limit. You don't have to cram whatever question it is that you're asking her describe the situation in 140 or 280 characters or less, you know, by all means, use lots of words be as descriptive as possible, because sometimes in there, there's a little curl that have a little nugget that gives away what the actual source of the problem that person is having is the other Stacey Simms 23:56 thing that was really interesting. We saw this so much with control IQ When it first came out was people don't search the group to see if their question has already been answered. I mean, I run to smaller groups, and they're usually really great. But that's kind of drives me crazy. Chris Wilson 24:12 It used to be, it drives me crazy less, because I've just kind of learned to shrug it off. In large part, it's a function of just the way that Facebook's algorithms and ranking in the way that it orders the posts that people see works. Facebook's always trying to get the most recent stuff up at the top, or the stuff that it thinks you might be most interested in based on stuff that you've interacted with in the past. And there's, I'm sure tons and tons of algorithms and things that go into deciding what you see and when. And it's not even intuitive, especially looking at it on a phone or on tablet versus on the desktop website. There's even really a search to group option in a lot of cases. And there are Tons and tons of people that do search that that's one thing. But the people that do search, almost never actually post a question because they get their answers by searching the group. So those are the people that that we frequently interact with. It's you know, and you, you wind up seeing somebody posts a lot, because they've never realized that there's a search function. Good point. Stacey Simms 25:24 So when control IQ came out, and this is particular to the tantum group, like hundreds of people, thousands of people, it seems like came into that group. Was it that many or is it just, you know, I'm sitting on the outside wasn't really that many people, Chris Wilson 25:37 I want to say, because the group's kind of, you know, had a long steady growth. But I want to say for especially that few months when it was approved and not yet released, and then right after it was starting to roll out, there was definitely a spike in interest. We were seeing the group grow at almost three times the rate that it had been before that Wow. Stacey Simms 26:00 So if you don't mind, let me ask you about your experience with control IQ because there's still you know, certainly a lot of people who haven't who have tanto haven't tried it yet. And there's a lot of people who've listened who haven't switched over to it, you post a lot of, you know, very publicly posted about your experience. How's it going now? Chris Wilson 26:16 It's so going along, okay, I've actually backed off because, of course, when it was new, I'm paying attention to it all the time, right? I'm looking at it, I want to see what it's doing. I want to see why, you know, see if I can figure out why it's deciding to do what it's doing right now. Now, I've gotten to the point where I trusted enough that I frequently just let it go. And sometimes that means that I don't catch or foresee something that I would have otherwise. So my time range has dropped back down a little bit from where it was I'm not running, you know, 9597 90% time and range. It's closer to being in the low 90s still, but a slacker in all honesty The low 90s is fine. And my average blood sugar has come down significantly. And the biggest thing that I was anticipating getting help with from it, I'm still getting out which was gone phenomenon. I'm still seeing that improvement. I'm not as a general rule waking up at 180 or 200. Even though my basal rate doubles before I wake up, Wow, it's so definitely helping. And I've kind of decided I'm gonna let it go and try to be a normal user, not a someone who's focused on it all the time, and sort of see how that rides out. Stacey Simms 27:38 I think that almost in a way, it's better. I think that and I have because I have a 15 year old son, who is very responsible. I mean, I don't want to put him it's gonna sound like I'm putting him down. I'm not he's very responsible. But truly being a person who really would prefer to never touch this pump again, has helped him so much because I know people who overreact everything and they're not doing as well with control like you He bonuses for food and then leaves it alone. And you know, four or five hours later, he'll be like, Oh, yeah, it's good. You know, he doesn't, you know, and I'm not I'm not checking him as much as I used to because he's a teenager. But it's amazing. When you would let it do its thing if your settings are right, which is a whole other story. It really works out great. So, you know, we'll see how it goes for you. But I think that you know, anything you can do to think less about diabetes is also very nice. Chris Wilson 28:23 That's right, it gives you you know, more time to think about the other things in your life. Stacey Simms 28:27 So let's talk about other things in your life. You're okay, so you bowl, you're an IT guy work for yourself. There's some surfing stuff in your bio, do you surf or is that a company that you work with? Chris Wilson 28:37 It's primarily my biggest client is a nonprofit organization that focuses on ocean waves of beaches that includes access for recreation. So there's a lot of surfing related stuff there. I can surf I have served. I'll be honest wearing a pump and CGM is is not necessarily conducive to being out in the water recreating, I would need to figure out some sort of untethered regimen or something if I wanted to do it regularly, I can at least paddle out and catch a wave or two and not get tossed around too much. But actually, the the big surfing thing is comes from my dad. My dad who's now in his 70s, you know, started surfing when he was 15 or 16. And still goes out and in surfs, usually two or three times a week at least when he can when we're not all under house arrest. Stacey Simms 29:38 Yeah. Oh, that's great, though. That's really cool. Do they live nearby? Chris Wilson 29:43 They do. They live about a mile mile and a half for me. Oh, that's great. So how Stacey Simms 29:47 is everybody doing? I you know, I I don't know exactly when this will air but I assume it was it will not be at a time when we're all running around outside yet. So how are you holding up? Chris Wilson 29:57 We're all doing okay. The nature of my job is such That I can largely work from home. Most of the time anyway, that hasn't been a huge impact for me. My parents have figured out Netflix and zoom, and doordash. And so they're adjusting to their new restrictions, although they still do get out and walk around and make sure they get their exercise in as well. So Stacey Simms 30:25 well, who knows what it's gonna look like on the other side of this. So we'll just do what we can. But one of the questions that you I've seen you answer in the groups and I want to talk about is, you know, people sometimes think you work for them, or you work for Dexcom and you don't, but you get a lot of really good information. Can you talk to us about what you do? You know, how can lay people stay up on information from these companies, because it's all public, I assume the things that you're looking into. Chris Wilson 30:55 It is, none of it's a secret. It's just a lot of it isn't well publicized. I pay attention to every press release that the companies put out. You know, I have one of the stock tracking apps and I have it set up to notify me whenever any of the companies on my list put out a press release, and it's not just Dexcom in tandem, it's insolate for the Omni pod. Medtronic psionics. Basically, almost anybody in the diabetes space, I try to at least keep up with what they're doing. I listened to the conference calls that they have for investors. Stacey Simms 31:33 I salute you, because I have been on some of those conference calls. And they are so boring, but they are they have great information, but they are a slog, sometimes Chris Wilson 31:42 they can be most definitely and if it doesn't work out schedule wise that I'm able to listen to the call. Honestly, sometimes I prefer to go back through and read the transcript after it's done. There's that I follow the diabetes media. You know, I read everything that gets Put just about everything that gets posted on diabetes mind or diatribe, or any of the other publications that sort of track what's going on in the diabetes world. And well, I do have some friends that do work for those companies living in San Diego or near San Diego, where they're headquartered is kind of inevitable, but they don't share any inside info with me or anything else. It's just a matter of really paying attention. I'm curious why you Stacey Simms 32:31 do that. What is it that makes you so interested? Obviously, you have diabetes, you were the technology, but most people don't Chris Wilson 32:38 follow it that closely. I think part of it's just sort of the way that I brought was brought up, I have sort of the the engineering bent to and that goes again, with with the job, but, you know, I like looking at things and taking them apart and figuring out how they work and how they're put together. And that's not necessarily always a option with diabetes technology. Although obviously the, the we're not waiting, the CGM, the crowd group has has done a lot with reverse engineering, what goes into these devices and how they're communicating with the radio signals and figuring out ways to sort of hijacks some of that to use for their own purposes, in ways that the tech wasn't necessarily originally designed to be used. But I've got some of that same sort of inquisitiveness about how things work. I mean, I remember when I was eight years old, I took apart my mother's computer that she had at home to install an expansion card so that I could attach a joystick to it to play games. And I remember being told that man, if you put that to get back together, if it doesn't work, you're not getting your allowance for the next four years. And you were eight and it worked. And I was about eight and it worked. was safe there. Stacey Simms 34:01 It's funny. But that says a lot. Right about being curious about, you know, having a knack for things. And for having the I don't know, there's something different about people who take a look at technology and say, I can do that. It's like you said that like the night scout people in the DIY crowd to be able to look at something and have the confidence or just even the curiosity to say we can make this better. I think that's really admirable. I don't have that. There's no doubt I'm, I'm scared of it. Chris Wilson 34:28 Well, a lot of it just comes down to looking at it looking at what is the data is going into it, looking at what the actions are, that are coming out of it and figuring out what must be happening in between those because you don't necessarily have any insight as to exactly what the system is doing. But if you input a two and it gives you a four, and then you input a four, and it gives you an eight, and you input an eight and it gives you a 16. It's probably just taking whatever the input is and multiplying it by two and giving you the answer. Stacey Simms 34:57 When you look at the technology and I No that, you know, who knows exactly what timelines are going to look like after this situation that we're all in right now? What's coming that excites you down the road for diabetes technology, because there's a lot that's on the horizon. Chris Wilson 35:13 I think the biggest thing that I see and it's actually sort of already here is the option to be able to infuse multiple hormones both insulin and glucagon. Now that we actually do have a shelf stable liquid glucagon on the market, that being the G voke. from Paris, I would assume that Zealand's product isn't too far behind that since that's what's being used for the for the island with beta bionics. So we should have two options before too much longer. Hopefully, just having the ability to not just take your foot off the gas, so to speak, but actually be able to apply the brakes is I think, going to be a major thing and then going along with that and something that I haven't really seen talked about too much is Lily's faster humalog which I mean, that's one of the big challenges is always that food is fast and then slow, the slow. And so anything that that can be done to speed up the insulin action to get it closer to what you would actually seen that happen naturally when your pancreas dumps that insulin straight into your veins, I think gonna be a big improvement. Unknown Speaker 36:26 You mentioned g Volk. Did I read you were in one of the trials. Did you talk about that at some point? I did. I've discussed it. Chris Wilson 36:33 From time to time I do various clinical trials as they as they pop up. A lot of the research gets done here in San Diego, and if nothing else is an option to get paid for having diabetes, which is nice to have happen. Once in a while. I did participate in the phase three clinical trial for for the G Volk, where they actually compared it to the standard glucagon kit to prove that it was of equivalent efficacy. That was Kind of an interesting experience, they hook you up to IV insulin and push your blood sugar down, I want to say under 50 and then turn off the IV and give you the injection and watch what happens. And the sort of the cool thing was that they actually didn't make me take off my CGM when I was doing it. So I saved and screenshotted the data from the days that I did both the traditional glucagon kit and then the, the product that they were testing the G voke to be able to look at and sort of compare the two, but doing that kind of stuff. And I also did the G six clinical trial, proving that it was good for 10 days if you wore it and also that it would block at least up to a certain dose of Tylenol. Stacey Simms 37:43 Oh, that's interesting. I didn't realize you're in that trial too. Did they give you a bunch of Tylenol? Chris Wilson 37:47 It was thousand milligram pill of kill of acetaminophen. They had as a saw, I want to say it was you know, 15 ish people and all basically crammed into a clinic room. IVs in so they could do blood draws every five or 15 minutes depending on what stage we were in of the of the testing. And they were running them through the lab grade glucose meters right there in front of us and comparing the readings from the CGM because we were all wearing both the G five and Digi six so they could compare the two. That's wild. And it was it was basically controlled chaos for about six hours. Stacey Simms 38:28 Yeah, I've signed up any for a few you know, to get into some clinical trials. But here in Charlotte, North Carolina, we really don't have the access. We could drive to Virginia sometimes sometimes there's some stuff in the Raleigh area, you know, the Research Triangle, but and the pediatric ones are hard anyway, but we'd love to do one that's really interesting. I'm going to tell them about that thousand milligrams of Tylenol in one pill Chris Wilson 38:51 which actually isn't too much more than the extra strength the normal extra rectangle Stacey Simms 38:56 so Oh, wow. I used I thought it was like 200 milligrams in one And then so it would be five. But I didn't think that the extra strength oh my goodness, Chris Wilson 39:04 well, if nothing else, I mean the the clinical trials also give you a chance to have testing done that nobody would ever pay for as a normal patient. They're looking at all kinds of stuff I've done at various stages of research trials for other things where they're looking at measuring your resting metabolic rate. And they've actually got a giant plastic hood that they put over your head to measure how much oxygen is going in and co2 is coming out. And based on that they can calculate how fast your normal metabolism is running. And they'll do it under various conditions where they're running extra insulin into you and extra sugar to counteract that insulin in an IV. Under normal circumstances, I would never do think it was 100 gram of carbohydrate challenge to see what would happen but I do Did a trial where they did it before and then after giving the medication that they were experimenting with to see what the difference was how high did your blood sugar peak? How fast did it come down? And nobody would ever do that. They're laying in the bed and they're practically doing blood draws and you've got your CGM on and you can see exactly how your body responds to various things. And it was actually kind of cool because if I had not done that trial, I would not believe that in score lasted five hours in my body. Oh, yeah. But because I did that, I've now actually got documented proof that I can show that no, like, here's where I had the hundred grams of carbs and gave myself the the bolus of insulin. And I could then watch as the blood sugar's slowly comes down and tails off. And that was six hours of measurements. Well, I Transcribed by https://otter.ai
What happens when you're diagnosed with COVID-19 and you live with type 1 diabetes? It happened to Patric Ciervo in early March. Patric shares his story, including how his diabetes reacted, hospital issues with people who don’t really understand insulin pumps and how he’s doing now. In Tell Me Something Good, a familiar name in the diabetes community, recovering from COVID 19 and now donating plasma, we salute more health care heroes. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's new book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription Stacey Simms 0:00 Diabetes Connections is brought to you by one drop created for people with diabetes by people who have diabetes by real good foods, real food you feel good about eating and by dexcom take control of your diabetes and live life to the fullest with dexcom. Announcer 0:21 This is diabetes connections with Stacey Simms. Stacey Simms 0:27 This week recovering from COVID-19 while living with Type One Diabetes, Patrick servo was diagnosed with the virus. In early March, Patric Ciervo 0:36 my temperature started going down like a 101 to five times 5am it was about a 93 I woke up in a puddle of sweat, we call 911. Fearing that I was going into some type of shock Stacey Simms 0:50 Patrick wound up in the emergency room with a committed he shares how diabetes was managed issues with people in the hospital who don't really get insulin pump And how he's doing now and tell me something good a familiar name in the diabetes community also recovering from COVID-19 and now donating plasma and we salute more healthcare heroes. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of diabetes connections so glad to have you along. I'm your host Stacey Simms, we aim to educate and inspire about type one diabetes by sharing stories of connection. My son was diagnosed with type one right before he turned two back in 2006. He is 15 now and a freshman in high school. My husband lives with type two diabetes. I don't have diabetes. I have a background in broadcasting and that is how you get the podcast I used to work in local radio and television news. Before I jump in with Patrick a little bit of housekeeping, we are fast approaching Episode 300 This is Episode 298. I have never made a big deal about numbering episodes because I don't know, it doesn't really matter what order you listen to the show in. I do number them internally just for organization, you know, keep track that way. And depending on what app you use, I know Apple podcasts will number them, you can see it right there in the app. Depending on what you use, it shows up or it doesn't. But we do have a very robust search engine on the website. And that does not rely on numbers. You just search by topic. And for me as I listen to podcasts, that's how I want to find previous shows, right? If I want to look something up, I'm gonna put the word into the search. I'm not gonna remember Oh, that was Episode 212, or whatever. I bring the numbers up though, because at 300 episodes, a lot of podcast apps start limiting what you see, when we get to 301 or you know, 350 or who knows 400 You're still only going to be able to see 300 episodes in the app. I'm not quite sure how many people are scrolling through to see everything. I am putting something new at the website you should be able to with one click to see all 300 episodes something unfortunately we don't have right now, because frankly, it just takes forever to load. But watch for that at diabetes, connections calm, they'll be a way to click and see all 300 episodes, if you're interested in kind of going back and scrolling through back to 2015. I should also mention if you subscribe on a podcast app like Apple podcasts, which is a really easy, easy way to listen to the show, if you listen through social media, that's fantastic. Listen, whatever, you know, whatever is easiest for you. But if you use a podcast app, and you subscribe, that 300 episode limit doesn't apply. you subscribe for free, I wish it was called something else. But when you subscribe to a podcast, it has nothing to do with buying a subscription or signing up for a subscription. You're literally saying to the app, give me all the episodes for free. So there you go. Gotta say a quick thank you for getting me to Episode 300. I'm so thrilled when we started I wasn't sure how long it would last. I certainly wasn't looking five years into the future. So thank you So much for listening for sharing these episodes and for frankly, becoming part of a community. We have an unbelievable Facebook group and I've connected so much with people over zoom and the chat over this time. I really appreciate it. So thank you for letting me continue to serve you. Diabetes Connections is brought to you by one drop. And I spoke to the people at one drop and you know, I was really impressed at how much they get diabetes. It makes sense because their CEO Jeff was diagnosed with type one as an adult. One drop is for people with diabetes by people with diabetes. The people at one drop work relentlessly to remove all barriers between you and the care you need. Get 24 seven coaching support in your app and unlimited supplies delivered no prescriptions or insurance required. Their beautiful sleek meter fits in perfectly with the rest of your life. They'll also send you test strips with a strip plan that actually makes sense for how much you actually check. Imagine that one drop diabetes care delivered, learn more, go to diabetes connections calm and click on the one Drop logo. My guest this week was one of the first people in his community officially diagnosed with COVID-19. And Patrick servo was diagnosed with Type One Diabetes more than seven years ago. So like you I had a lot of questions about what it is like to live through Coronavirus, while also living with type one. Now, of course, keep in mind as we're speaking here, every case is different. Every case of Coronavirus of COVID-19 to be specific, presents a little differently, some very mild, some much more severe, a lot of asymptomatic cases we hear about and type one diabetes kind of goes without saying on this show. Everybody handles that differently as well. So please remember that this is about Patrick. We can extrapolate some information from here. Frankly, I find it very reassuring. But at the same time, please talk to your healthcare provider. Don't jump to conclusions and I will link up much more information at diabetes dash connections. Calm the episode homepage in the podcast show notes. So here's my interview with Patrick servo. Patrick, thank you so much for joining me. How are you doing? How are you feeling Patric Ciervo 6:09 these days? I'm feeling well, thankfully, my symptoms have been gone for a while. And yeah, I've been feeling good. Stacey Simms 6:19 Wow. All right. So from where I sit, not knowing anything really sad. It just seems so scary. So I appreciate you sharing your experience. Let's back up. How did this all start? You've been living with type one we should say for for seven, seven and a half years now. So you're not exactly new to type one. But what happened in terms of feeling ill a couple of weeks ago. Patric Ciervo 6:40 So basically, early in March, I had a busy weekend and everything. There was a work event on Friday, about where we went out because there was someone's last day, but I was running around Friday and Saturday, Sunday night. I was at my girlfriend's apartment and we were just beat from the weekend she works with me. So we were just beat from the whole thing. And she noticed that my body temperature had started feeling hot. But because we were both rundown, we didn't really think too much of it. So, the next day I woke up, I felt good. I didn't really feel bad at all, like maybe a minor thing, but nothing to worry about. So I went to work Monday, but that night, my body temperature was hot again, and her roommates a nurse, so we had a thermometer, and my temperature was 103. So we went to the primary doctors on Tuesday, I was tested for the flu, which came back negative Faker really diagnosed me with anything. I didn't mention Coronavirus, but he didn't think it was that he tested me for the flu again with a more accurate test but the test will come back the next day. So in the meantime, he gave me an A biotic and Tamiflu and told me to take Motrin Tuesday night, my temperature started going down like a 1012. By the time was 5am. It was about a 93. I woke up in a, like puddle of sweat, we call 911 fairing vows going into some type of shock. And I was in the car since then. Unknown Speaker 8:19 So when you guys called for an ambulance, were you thinking this is diabetes related? or What did you Patric Ciervo 8:25 think? Well, she had looked up and everything that diabetics have more like more of a chance to go into a shock from fever or something like that. So she was kind of the one pushing the 911 call. So we did that. I didn't think too much of it until a little bit later on. When I was like in the ambulance, I still wasn't feeling well. By the time I got the ER, I was feeling good, and my temperature was normal. Stacey Simms 8:53 It's so hard to be the person in that circumstance, right? You're not thinking exactly clearly the person that called you know, is trying to figure out What's going on? When do you remember? Do you remember when they said okay, this is gonna be COVID-19 Patric Ciervo 9:06 they didn't they test me again for the flu in the ER, they tested again twice, and that both of them came back negative. We got the call from our primary the second flu test that he did came back negative, but I was already like things were back to normal, my temperature was fine. So they tested me for COVID as a precautionary, and because they tested me, they put me in the ICU and my own room and they want me to be there until the test results came back, which they were told would be the next day. I didn't get it back till that Saturday. I was in there on a Wednesday. Wow. But the doctors that would come in saw me like I was immediately getting better and everything. My only symptoms before the diagnosis were the fever and a cough. I didn't have trouble breathing, but they thought I looked good enough that they didn't think It was COVID Stacey Simms 10:01 That's amazing. So you start feeling better and that's when you find out that's what you had. Patric Ciervo 10:05 Yeah, I know. So I'm thankful I can't like I was already on the mend when I found out and it was a little bit before like all the craziness started in the world and so I didn't go in in too much of a panic state. When I found out I was diagnosed with it. There was still like a shock like, oh God, like diabetic and I've been hearing these things aren't good, but I was getting better each day. So after like a deep breath and everything able to get back to a good mental state. Stacey Simms 10:35 I know everybody wants to know about diabetes and you know what you now looking back what you think of that part of it, but I want to ask before we move on, How bad was that test for COVID-19 you hear like it's really far up the nose is that How bad was Patric Ciervo 10:49 it? Yeah, it was. It was exactly that out the nose and everything as they did in both nostrils, two different ones at once. It was not fun at all. You know, it was something I could live with and everything. Stacey Simms 11:04 I'm sorry to ask. I just you know, I think about what how they test you for strep. Yeah, right. It's always like you gotta gotta gotta get it far enough to gag a little bit. Uh huh. Your Patric Ciervo 11:12 nose. Oh my god. Yeah, it was pretty much yeah, exactly like that only your nose and I was like, flinching and everything. But it was totally doable. Stacey Simms 11:23 And I know it's worth it. Please don't send me nasty emails like, yeah, it's just one of those things that I don't want to ask about. But looking back, what about your diabetes during that time? I think people do get very concerned about you know, treatment and blood sugar's you didn't know you had it. So it was kind of difficult or different to think about managing that way. But looking back, anything stand out? Patric Ciervo 11:45 Well, in the hospital, my blood sugar was higher than normal. For the most part. I'm not sure how much of that was the illness related. I was very stressed in the hospital and could not move at all. So I think that also had part to do with it. Because I didn't have a problem coming down from the highs, there was nothing with my diabetes to think like something's off. I need to get checked out the days leading up to it. I've been fairly decent you know for the most part Unknown Speaker 12:14 so you didn't notice any like really wacky high blood sugars before the diagnosis. No, no treatment, right like that. Patric Ciervo 12:21 No, no. Yeah, thankfully. Stacey Simms 12:23 So when you got the test back at the hospital You said you were already kind of on the mend. How much longer did you stay there? Patric Ciervo 12:28 They released me Friday, and I got the test back Saturday. So I was self isolating just to wait for the test result. And then that's when I got the call. Stacey Simms 12:40 What do they tell you after you test positive what happens next even at home? Patric Ciervo 12:44 Yeah, they had given me in the hospital what to do if it does come back positive. They gave me a worksheet like to do less than everything. Just basically everything we've been hearing, you know, self isolate for two weeks. I think it was something like 72 hours, but two ways you can be like out of the quarantine is for 72 hours, you can't have a fever and other symptoms have to be gone. And the other one was or you have to get tested again, it has to come back negative. And I didn't get tested again. When I was at home quarantine. I only had a fever one other time. Stacey Simms 13:21 So you feel pretty confident your past. Patric Ciervo 13:23 Yeah, I did develop a headache and the quarantine. Stacey Simms 13:27 So again, back to diabetes. Did you ever sound like the mom now? But did you call your endocrinologist and loop them in? Right back to Patrick as he answers that question. But first diabetes Connections is brought to you by real good foods. high protein, low carb, grain free, gluten free and terrific. If you're trying to eat keto, their line of foods just keeps getting bigger. We've been talking about them for so long. Now. I think when I started they only had pizza. Right, but now they have stuffed chicken breakfast sandwiches, you can get the pizza, just the crust, so you can kind of make it whoever you want. They have entrees. They are of course available in the grocery store freezers, but they're also so easy to get to your door, their whole line can be delivered. And they have a lot of specials right now. There's free shipping specials, but also on their website. If you sign up, you can get all the coupons and promos delivered directly to your phone, make it very, very easy. Find out more go to diabetes, connections comm and click on the real good foods logo. Now back to Patrick and I was asking him if he caught his endo when he was admitted. Patric Ciervo 14:44 You know what, I had an incident in the hospital where when I got there, they asked me if I had an insulin pump. And I told them I did and they asked me if I wanted to like you know, administrate my own insulin. I said yeah, and there was a bit of a next up with The nurse who was under the impression she was giving me insulin shots, but they weren't not taking the fact that I already had insulin on board. And that, like they would not be calculating that. And so the insulin they gave me and they seem to not want to give me any type of basal insulin, they just wanted to do like check every two or three hours. If I was Hi, give me a correction. I didn't call my personal endo, because they're kind of hard to get ahold of. But I have a, I go to this camp for athletes with Type One Diabetes called diabetes training camp and the endo that has that, that ended that runs it. I texted him about that initially. And every day since then, he had texted me or called checking in how I'm doing. I told him my blood sugar's were high. He told me don't try to get to like 100 to 120. Don't aim for perfect, just as long as you're able to get to 140 to 180. You should be fine. I have any problems. Stacey Simms 16:01 And yeah, I mean, that's one of the worries that I always have in the hospital. I mean, I'm there with my son being crazy mom. So you know, they're not going to give him extra insulin, but it's so frightening for you if you're there by yourself, which you had to be clear that up. I mean, I'm envisioning this nurse trying to give you a shot and you holding up your pump, you know, you're trying to ward her off. Did you argue with them? Patric Ciervo 16:24 Uh, yeah, I mean, I'm not like, I like I don't like conflict at all and everything. But this was like, there was no way I wasn't standing my ground this and everything because I had like, four or five units on board, because I was trying to come down from like a 260 or something. And I'm explaining it to them, and explained that the doctor said that eventually they understood what I was saying after a few minutes. They said, All right, they'll talk to the doctor. And about 15 minutes later, they called me saying that the doctor says fine. Stacey Simms 16:56 No, thank goodness. Do you use a CGM as well? Yeah. And did they let you kind of use that in the hospital? Did they insist on doing finger sticks? Patric Ciervo 17:04 They did do finger sticks for their own record, they said, but that's all my phone. I was just going off that the whole time. Stacey Simms 17:11 All right, so have you followed up with your endo? I mean, it sounds like you're on the mend. Doesn't sound like you needed to check in with him. I'm not trying to mom you Patric Ciervo 17:17 right? Yeah, chicken. I mean, he was texting. We were texting and calling back and forth when I was doing the two week quarantine as well as my primary. My primary had called and everything I told him I had a low grade fever the one night he said, You know, sometimes that happens, I won't be too worried about it unless it's kind of a stays. And it the was one night and I woke up the next morning fine. Stacey Simms 17:44 Alright, so I'm gonna ask you some personal stuff you do not have to answer. All right. Here we go. One of the things that I that we see so often when people in the diabetes community are talking about the fears of Coronavirus is you know, you have to have quote good Control to come out of this in good health, you know, and that we've seen that people, especially with type two diabetes, and all those comorbidities don't do well, but COVID-19 and I hit I always hate asking people I actually I don't I don't ever ask anybody in the show with their agency. And I'm not going to ask you, but are you a perfect diabetic? Patric Ciervo 18:18 I'd say a B plus student. I'm definitely not perfect, but I overall I pretty well control. Stacey Simms 18:27 I just think it's important to ask because, you know, I think there's a lot of fear that if you're a one c isn't 5.9 or 6.1, you know, consistently that that illnesses are just going to knock you down. And it's just not the case. Obviously, you want to be in good health, in quote, good control. So you know, share as much as you'd like. I think that's important to hear. I have seen a video or two of your Oh, yeah. You should say your comedian. Yeah. And you know, I've seen some of your blood sugars. They're not all the time. Unknown Speaker 18:56 Right, right. Yeah. Which videos are you talking about? Stacey Simms 19:00 Seek specifically there. I was thinking of the drinking game. Okay. Yeah. Patric Ciervo 19:05 So yeah, just along with this episode. Oh, cool. Yeah, I that was a few years ago. So I kind of forget what was going on that I did that about three years after I was diagnosed three or four years. And my whole thing was FM pi, it's fine. But as long as I like, come down, I'm not gonna stress about it. Because in the beginning, my educator introduced me to one of her, like interns one day or, and she goes, like after I've been a diabetic for a year. And she says, This is Patrick. He used to call us every time he was about 200. And well, because I was told I wasn't supposed to be 200. So like the first like, year and a half, I was kind of like, going like crazy, making sure I could blood sugars. But once I realized I could be a little higher, and I'll be fine. Just as long as I came down. I was happy. Stacey Simms 19:56 Yeah, definitely. I think we all handle this in a different way. You I have long decided that perfection is not an option. Unknown Speaker 20:03 Yeah, Stacey Simms 20:04 exactly. So I think it's just important to, to just kind of spotlight that a little bit and I appreciate you sharing that. I'm not gonna make you the spokesperson, I promise for people with diabetes who have been through something like this, but having gone through it, you know, what is your advice for other people with type one? You know, is there anything that you would tell people to to concern themselves with more or less? Patric Ciervo 20:27 I mean, I kind of feel like basically, I didn't have that too hard at that experience, which is, in some ways I kind of feel bad because you know, I would like to say that like I fought all genders everything, like in spite but and I know everyone's experiences not gonna be like that. So I feel very fortunate, but like, I think a lot of the things like me recover quickly, was that the second I got to the hospital, I got there like when symptoms were early, and I've shot up with like fluids early. I think that's the number During my quarantine, I was drinking water, like non stop and take and taking vitamins. I was just doing everything I could to make sure even though I was feeling better that I wasn't going to let this slit, if you had to be in the hospital, I'd say definitely advocate like the hell of your diabetes management and how you go about it. I think for nurses who like work great, otherwise, they kind of have misinformation about what to do. Yeah, Stacey Simms 21:29 I'm curious too. Did you bring a bunch of supplies with you? I've seen some people recommend, you know, take up to two weeks, you know, if supplies if diabetes supplies to the hospital if you have to go? Patric Ciervo 21:40 Yeah, I mean, I'm on the on the pod so I grabbed all that I grabbed strips, and my my Omni pod and I grabbed pumps. I had my girlfriend put like juices and gummies in her purse, and then my parents did come up and everything from South Korea. They would go to my apartment and they bought more stuff when I need it. Stacey Simms 22:04 It's so interesting because you were in the hospital before much of the lockdown or I shouldn't call you know, the the states that decided to self quarantine whatever we're calling it stay at home shelter in place. This would be for most of that went into place, wasn't it? Patric Ciervo 22:20 Yeah, I mean, my first day in the hospital was the day Tom Hanks was diagnosed. So that's then. So that's basically my buck marker for how early it was you in Telmex? Yeah, same day. Unknown Speaker 22:34 Uh huh. Stacey Simms 22:35 You were diagnosed as a young adult. were you diagnosed correctly right away because I keep hearing more misdiagnoses at that age. Patric Ciervo 22:41 I was diagnosed correctly. I really like my primary from South Jersey. I was in Ireland for a week, the week before. And I was drinking water non stop. I was in Ireland with my family. And my mom noticed two days later, we had a surprise birthday for At the surprise party all our friends are saying I look super skinny. So about two or three days later actually one day after her birthday, her actual birthday, she made me go to the doctor she talked to me and I told him my symptoms and he looked at me and he told us nurse to get the stuff to test me with instead tell my patients I'm going to be a while And so yeah, so my blood sugar was like 500 something and he made arrangements for me to go to the hospital and all that and gave me his personal cell phone if I need him at all during the night or something like that. And thankfully I didn't but yeah, Stacey Simms 23:38 and you mentioned the the camp and then in the athletes that you've been involved with and you know, you believe I've done a lot of bike rides. Haha, did you find all of that because that makes such a big difference once you find that community? Patric Ciervo 23:49 Yeah, that's definitely been like my lifesaver and everything prior to the diagnosis, went against into cycling, and I wasn't spiking like that much but Now my friends went to bike. So I was looking for a group to bike with. So in the hospital, I googled cycling and diabetes. And I found that jdrf ride to cure. And I contacted one of the coaches, who is also a type one. And the endo that runs this camp is his personal endo. So he gave me his information. And I think going there since Stacey Simms 24:23 Oh, that's great. Yeah, going forward. Now, have you been instructed to do anything different? Are you just kind of back to full health? Do they monitor you? Do you diabetes wise or otherwise have to think about anything else? Patric Ciervo 24:34 No, I did get a call from the health department and and Hoboken where I'm living now and in South Jersey, where I'm from, but other than just kind of initially checking in on me. I haven't heard anything. We get a call from my primary doctors nurse. I got a call from her a few times, just checking in, but since I recovered, no one seems to be concerned about me. I guess I Have a lot on their plate. But I've been self isolating. I've been doing everything. Basically everything everyone else has been doing washing hands. What? If I go out to walk the dog? I'll wear a mask and everything. You know, I don't know what's what. So just kind of be precautious in any area I can. Stacey Simms 25:18 And I meant to ask when you were isolated for those 14 days. Did you live with your girlfriend? Did you live with anybody else or was that difficult for you guys? Patric Ciervo 25:26 When my test result came back Saturday, she had already thought she had it. But she got tested then after my test result, and she came back positive. So we don't live together. But I have a roommate up in North Jersey, and my sister has a house to herself. She said she would go to Mar parents beach house for those two weeks and that I could use her house. So I was there for like a few days by myself. But once my girlfriend was diagnosed and everything, she has two roommates as well and she didn't want to be around them. They would still be isolated. together Stacey Simms 26:00 in the hospital or otherwise they didn't treat you with anything did they? It doesn't sound like you were you know ascribed anything special? Patric Ciervo 26:06 No they basically they did give me an A biotic when I left. And I think I don't even remember they were giving me lots of fluids and everything. Maybe they did give me some type of tail or something. I don't even remember what that was. Stacey Simms 26:18 Yeah, yeah. But nothing on an ongoing basis. Unknown Speaker 26:21 No, no. Well, Patrick, Stacey Simms 26:23 I'm so glad you're okay. And thank you so much for sharing your story with us. Yes. Posted if you get the call to I don't know, donate plasma, or whatever the heck they're doing. Haha. You know, let us know what where you go from here, but I really appreciate you sharing your story. Patric Ciervo 26:37 Yeah, thank you for having me in everything. Unknown Speaker 26:45 You're listening to diabetes connections with Stacey Simms. Stacey Simms 26:51 More information at diabetes connections.com. I will link up more information about generally speaking, you know COVID-19 type one diabetes and other interviews with people with type one who have been admitted, diagnosed officially with COVID-19 and have recovered and are speaking about it. So I will I'll post all that information. I will also put the guest Patrick's blood glucose drinking game video that we mentioned, that's in the Facebook group. And I will post it in the show notes as well just go to diabetes, connections comm and click on the episode homepage. Patrick and I talked off the air briefly about the new policy or the provisional approval from the FDA to have CGM used in hospitals. And that would be hospitals would actually give the people admitted a continuous glucose monitoring system. dexcom is involved. Abbott is giving the Libra array. So it's very, very new. In fact, it was after Patrick was released from the hospital. I believe that the FDA approved that provisionally but what I'm trying to figure out still and maybe by the time this airs, we'll have the answer to this. I'm trying to figure out if that is Only for people who come in without their own system, right? mostly people with type two diabetes, as we had talked about in the conversation with dexcom CEO Kevin Sayer, or if you come in with type one diabetes, and they're more willing to use your own system, or if they give you one if you don't have one, so there's still a lot to figure out there. But as you heard, he still had to do a lot of educating. And that, to me is so difficult when you're the person who has type one and who is in need of medical care. I mean, not everybody is going to be as able, as Patrick was to describe the situation and say, you know, I've got this. So man, um, you know, we've got to keep advocating, we've got to keep educating, time for Tell me something good, which is usually a good segment for that. But first diabetes Connections is brought to you by dexcom. We started with dexcom back in the olden days before share, and I always meet people who have no idea that there was a thing before share, right that there was a time when you couldn't look at your kids blood sugar on your phone. So trust me when I say using share and follow up really made a big difference. Benny and I have always set parameters about when I'm going to text him, you know how long I'm going to wait, that kind of stuff. And it really does help us talk and worry about diabetes less. If he's asleep over if he's away on a trip. It gives me so much peace of mind. It really helps me if I need to troubleshoot with him, because you can see what's been happening over the last 24 hours and not make a decision based in just one moment in time. The alerts and alarms that we set also help us from keeping the highs from getting too high, and help us jump on lows before there were a big issue. Internet connectivity is required to access separate dexcom follow up to learn more, go to diabetes, connections comm and click on the dexcom logo. Tell me something good. Recently, we have shifted to talking about healthcare heroes and stories of people with type one diabetes who are in healthcare fields. And I'm going to talk about one in just a moment. But first, I want to share a great story about a gentleman who doesn't Have Type One Diabetes doesn't have diabetes at all. But he is very much a part of a diabetes community. You may know Mike mangus, because I've talked about him here on the show. And I've certainly talked about his products. Stay put medical is not a sponsor, but I love them. After all these years of trying different products. I think about two, maybe three years ago, we finally started using stay put, and this is gonna sound like a commercial, but it's unbelievable for Benny, everybody's skin is so different. So it can take a while to figure out what's right for you. Here's the example I give last summer stay put kept his decks calm on the entire week of diabetes camp. And then for three and a half days at the beach. Yeah, we restarted the sensor. So they were in the water every day at diabetes camp. They were sweaty, they were gross. And then we went to the beach and did ocean swimming and all the gross stuff in the sand. So that thing is unbelievable. But I'm supposed to be doing a commercial for state but sorry, just kind of setting it up. But Mike who heads up state but he was diagnosed with COVID-19 In early March, and he spent four days in the hospital, he is also fully recovered. And he's able to donate plasma in the hopes of helping others. Plasma donation for COVID-19. I mentioned at the very end of the interview with Patrick, it's newly regulated, it's experimental. So it isn't widely available or used yet. But Mike was right in the front saying I want to do this. He was knocking on doors as soon as he recovered. I will link up more of his story. He's got some coverage in the media, especially in Florida, where he lives. So I just think that's a great news story. And we'll follow Mike and kind of see how that goes and see what happens with plasma donations that could be really interesting, and hopefully helpful. I also want to tell you about Amy She is an RN. She's a mom to Marcus Marcus is 16. He was diagnosed in June of 2016. And he was 12 at that time, so Amy is a nurse at a rural health clinic in Oregon. And she says finding the balance between the demands of work she does have reduced it hours now, but even so, managing medical costs and keeping her and her loved one safe these days is a big challenge. She says I'm a quilter. So I've been making fabric masks for my co workers, high risk patients and acquaintances to keep myself busy. These are crazy difficult times. But I firmly believe this world would be a better place having made it through until then she says I'm taking T one D mom life by the horns, and one day at a time. Amy, thank you so much for sending that in all the best to you tell Marcus we said hi. And if you have a Tell me something good story, please go ahead and share it. You can shoot me an email Stacey at diabetes, connections calm. You can post it in the Facebook group. However you want to get it to me, you can message me on social media. I would love to tell your good news stories. And of course we post them on social media every week as well. Hey, can you hear that? Benny is playing video games. And the kids you can call them video games anymore, but you know what I mean, he's on his Xbox or whatever. He's screaming soul. Right now that if I didn't know better, I would think he was being, you know, physically attacked. And I've talked to my friends, this is very typical of teenage boys. Oh my god, they're so loud. So I'm gonna go yell at him when I'm done taping, I think it's gonna be all good. And maybe I'll go secretly record him some time. Just you can hear it. Oh my god. But hey, that's one of his big social outlets right now. You know, he gets in the headphones and plays with his friends and they're all together. So I'm not gonna complain too much. I'm gonna go in there and tell them to knock it off. The big threaten my house these days is you better behavior. I'm changing the Wi Fi code, you know, fate worse than death right now. And we're all on the systems all day long. I don't want to look at my time on my screen time, right or the time on your phone. They all have those features. Now you can tell how much you've been on the phone. Oh, my goodness. Well, this is the part of the show where I generally talk about where I'm going. And I have been going a lot of places online recently. Yeah, I mean, it's all virtual. But I only bring that up because I want to tell tell you about a discount that I'm doing for the world's first diabetes mom right now. Yes, of course, if you're new, this is my book. It's available on Amazon. There's an audio book, you can get the Kindle version, of course ebook. So I'll put the link. It's always in the show notes. But I bring it up because I was talking to groups this week online, and I did a special discount code for them. And I want to pass it along to you. As I am taping this, I am scheduled to talk to jdrf in Michigan, and I'll be doing a world worth D parent meetup, which will probably already have happened by the time this episode comes out. But I've got a promo code not for Amazon, you have to go to diabetes connections.com and order the book through my website to get the discount. And it's very simple. The discount code is worst, just the word worst w o r s t. And that promo code will be good. Until next week, April 28. Again, that promo code is worst. I believe it saves you five bucks off the cover price. Unfortunately, you still have to pay for shipping. I know a lot of people go to Amazon because of that, but this will actually still be less than it costs on Amazon. promo code again is worst. And I can't wait to get back on the road, not just to sell books, although that's a lot of fun too, but you know, to meet people and do these presentations in person. There's so much fun to still do, but it's a little weird to talk to my computer and not talk to a crowd of people. I like the people a lot better. Well, thank you as always to my editor john McKenna's from editing solutions. Thank you for listening. I so appreciate you being here every week. What a time we're living through. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself. Unknown Speaker 35:48 Diabetes Connections is a production of Stacey Simms media. All rights reserved. All rounds avenged Transcribed by https://otter.ai
This week.. making CGM available to hospitals.. something new because of the healthcare crisis caused by COVID 19. We talk to Dexcom’s CEO about training and more. Kevin Sayer explains how the program came about, why it’s needed and how he hopes it will help people with all types of diabetes in hospitals. We also talk about other Dexcom news, financial issues and more. More about Abbot & Dexcom in hospitals from DiaTribe In TMSG – taking flight.. finally and a birthday, a diaversary and a family of healthcare heroes. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Check out Stacey's new book: The World's Worst Diabetes Mom! Insulin assistance due to COVID19 crisis: NovoNordisk 90 day no cost Lilly Diabetes $35 copay The first pilot with T1D gets FAA clearance for commercial flights Follow Pietro on Instagram Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode transcript: Stacey Simms 0:01 Kevin, let me let me start by asking how are you doing everybody staying safe and staying home as much as possible? Kevin Sayer 0:09 I am staying home and staying safe as much as possible I since the office is deserted quite frankly, it's safer than home is respect because there's no one in the neighborhood. So we're I've just been going in maybe once once a week for a little while to take a couple of calls and then working from home I have learned I have learned a lot of things about work at home tools that I that I need, like I needed a better camera on my computer and some better it's interesting as you go through this and realize just little things. Our company. So me personally, my kids are all great. So that's good. Our company Stacey we have done absolutely everything we possibly can to to take care of our people and our employees. We you know, mid March when we Send everybody home. We were definitely the first in our area one of the first in our area. I think Illumina might have been a little bit ahead of us, but we were very quick there and we have work from home tools that we put in place. Our IT team has just been tireless and getting people the type of connectivity and voice services and stuff they need from home. That's been great. We've had to keep the manufacturing plants open, obviously, because patients need product. In light of that, and light the fact that we are taking a group and making them come to work. We've provided them with economic benefits to whereby we can compensate for the fact for example that they are leaving their kids are home from school home. Whereas you don't have the summer daycare plan or the camps you could put them in so we've compensated our people a bit more to make sure they can take care of their families. We've reorganized the place and manufacture train with respect to small pods of people working together. So if someone went might get exposed, they we don't wipe out a manufacturing floor of 800 people just a few. We're making take breaks in groups, we're making them take it literally, we've got thermal scanners, we've we we've got time between shifts, so we're not at full capacity, but we're close. So I think our company's been absolutely as responsible as we possibly can. Through this to our people. And we said that in the beginning that aren't you know, our first goal is our, our employees our second priorities can be making sure is our patients to make sure that they our product and our third goal for community and making sure we're good citizens in the community and do our part and I think our hospital efforts fall into both two and three diabetes patients but also this community in general because when we think of the risks our healthcare providers are going Through to find this. My, my second son is 36. Now so obviously this back many years, but when he was 10, he had bone cancer and he went to a camp called dream Street, a kid's camp, kind of like the diabetes camps, but it was really just a lot of fun. And one of his counselors there was a young man trying to be a stand up comic who abandoned comedy becoming an ER doc in New York City. And our family gets text messages from him on it on a daily basis, just he's giving us a diary. And when you read that, it's like, oh, my goodness. And that's what we need to do to help the community is is a burdens for guys like him. Stacey Simms 3:42 Let's talk about the hospital program then. So tell me what Dexcom is doing the the release is shipping continuous glucose monitoring systems directly to hospitals, indeed, what is the thinking here? Kevin Sayer 3:55 Well, let me take you back a little bit. When this all started More than a month ago when things started getting very big here in the US and even before that in Europe, it became very clear that people with diabetes are more at risk. If they get contract COVID than those without diabetes statistics, statistics are pretty, pretty staggering. I mean, it's, it's plain black and white here. And we had heard from hospitals in Europe and back east. This thing started to grow. They wanted to use our system in the hospital, where we are not approved for use yet. Our system has been used in a hospital and some IRB approved studies in the past because we were preparing for that day and trying to develop a body of evidence that would support this. But it you know, it early phases by us in early discussions with the FDA, because before we roll on full on commercial into the hospital, we need to understand all the things about how our Bluetooth interacts. With all the other communication protocols, in hospital rooms, what is going to talk to where it's going to be displayed. And also make sure that the actual sensor from a chemistry perspective functions the way it's labeled on people in a hospital who are on multiple compounds versus those of us who are home and other routines who are on the compounds we're used to. And so we've done some work on that, but once it started heating up, particularly in centers where an endocrinologist who knew of Dexcom got involved, it quickly became we want this and we want it now. We didn't have FDA approval there. So we started speaking with the FDA. We did get an emergency provision that All right, go ahead. ship to hospitals. And we we we've looked at this and and and we've taken a lot of time on this Stacey . We got 100 f he's worked on this hospital thing full time. We put that many of our people into this to make sure that works. We needed to build a pricing structure for how they could buy it. We're charging the hospitals less than the commercial patients as part of our, our contribution to the community. We know that the sensor, the transmitter has to talk to something either a Dexcom, receiver or a phone. The phones are better options. So we are giving the hospitals phones and or receivers for the beds to manage the patients. We've developed separate training materials for the hospital, devoted our entire Education team, pretty much to them full time right now as they're training the hospitals get upon the system. We have developed a surveillance team literally to take calls to if we are anything going on with sensors to investigate and make sure we understand so that there's not something that we would have missed. We devoted a lot of time and effort to this as a company. We want to make sure it works. We want to make sure we're getting Go there, we are going to help people. The most appealing thing about Dexcom in the hospital over anybody else in the space, there's a couple you know, the first one is the connectivity, like connecting to a phone. Theoretically if the phone can be outside the room where a patient is, or even if it just hangs from the bed, from the from the bullet the bed, but it's a phone and you can use Apollo on an iPad out in the hall, you're able to monitor patients remotely. You know, I've been an ICU use around the country as we studied this market. And I've seen ICU is where the protocol is a finger stick every 30 minutes 48 finger sticks a day. Don't think nurses are following that protocol right now they're too busy. So to the extent we can make that labor much more efficient, and if we can take and the problem in the hospital is not hypoglycemia as it is for the patients in the field so much it's hyperglycemia not only our They they're getting too high because they don't want to be too aggressive on on a direct insulin. If they're not going to be sticking the finger every half hour, they don't have a CGM. So they're monitoring less aggressively. On top of that the steroids treatment and some of the other treatments for the respiratory ailments can go Cause glucose to rise much faster than it would if you weren't in that environment. So what we're seeing is patients going DK and fighting DK at the same time they're fighting to breed. And that's what the physicians and the hospitals are saying. So we have developed a plan and a protocol as to shipping products to the hospital supporting the hospitals, educating hospitals, training hospitals, giving them a place to call, learning as we go, because the other thing remember, most of the doctors here are not people who are used to CGM every day right there, your docks. Stacey Simms 8:57 That's the question I wanted to ask is Can you tell us a little bit more about the training? You said you had people who develop this? I, you know, I'm a huge fan of CGM. We've unfortunately we had to take Benny to the hospital - not diabetes related. But having the CGM was fantastic. It helped so much, but we brought it in, you know, they didn't provide it. But how is an ER doctor? How is a nurse in an ICU? going to take the time to be trained? Can you share any of kind of the process here? Kevin Sayer 9:28 We started with 108 slides user guide and realized that was never going to work Stacey Simms 9:33 108 slides like a PowerPoint? Kevin Sayer 9:36 Yes, slides because that's what you do you become FDA compliant, and you do a follow on user guide and try and walk them through every page. And after one training session. We said yeah, that's not gonna work. And so we condensed it. We have a two page quick starter. And then we have, I don't know, just a several page, other user guide and then we have people available by the phones that they need to solve. For that, and then what we're providing is video training. And we find we can get those trainings done in just under an hour. And then what really is happening, I will tell you where the early phases of this hospitals are phasing it, they're putting it on a few patients and watching seeing what they learn seeing what the outcome is. And then after they do that, then the roll it out bigger are constraining items so far has been getting phones, we've had to go procure the phones ourselves. We've had to buy them from the usual sources and pay cash to get them so we're getting the phones, we're pre configuring the phones. We've got another entity involved who's literally pre programming the phones whereby the only app running on the phone is going to be the dexcom g six app. So again, we are learning what physicians aren't gonna want to do. You talk about training, we don't want to have to train them to program phones. It's easier if we have somebody else program the phones when we're funding that effort as well. But every day you come across a new barrier and a new hurdle to jump over to make this work everywhere. Some of the stories we've gotten so far, anecdotally have been extremely positive. The, but I can tell you the the hiccup today that I heard from one facility is we got we got phone shipped to this hospital, one of the first ones to get phones. And their ID department won't let him use them on the wireless network, because they haven't been tested to meet the hospital security. And so you think you know everything about the hospital environment. And Stacey, that's why we have been so deliberate and thoughtful, and methodical as we do this. We don't want to just drop sensors on a hospital and say use these because if we do what we're going to get as a bad outcome, we have an opportunity to make this work and to make this For patients going forward, so we are really heavily invested in making sure we do this the right way. And, and so yeah, we train them, we get calls back in the cases and several of the hotspot hospitals. We're dealing directly with an endocrinologist who's training patients because there's so much diabetes in the hospital that the endocrinologist literally got involved in the training. Yeah. And and, and so that's been good, but it has been. It's just been crazy. And we have, we very much appreciate the FDA willingness to let us go here. We're going to gather all this data. When we're done. We're going to gather every bit of data that we can gather, and use this as real world evidence and then go back to the agency and say, Look, here's what we've learned about use of the product in the hospital. What do we do next? Yeah, I think that is a great use for this product. Stacey Simms 13:00 You had mentioned that the you're going to be giving the phones and possibly the receivers to the hospitals and selling the sensors. And I believe the transmitter correct me if I'm wrong, a discounted price. What happens to the patient? Because I would be very concerned, having you know, the most notorious - you get an aspirin in the hospital and it costs you $800. You know, if I come in with my own Dexcom sensor, it's one thing but if a hospital puts one on me, is there a guarantee here that the patients that are using this discounted system are not going to be charged full price or even more on the other side? Kevin Sayer 13:44 These people are so sick, that's the least of my concerns. Stacey Simms Interesting Kevin Sayer 13:44 I think I guess I would hate that. This is not being used to keep somebody there to keep somebody safe at school. This has been useful. Thanks. somebody's life and and if our data can can make somebody healthier and better one of the initial stories I heard, for example, young woman comes into the hospital type one, she's in total renal failure. Things look bad. They're gonna put on our ventilator. They said, Wait a minute, she's DKA, let's put her on CGM first. Four hours later, her glucose levels are back down in the range. And not only did she feel well enough to be conscious, but they didn't even put her on a ventilator. And she got Well, what's that worth? Stacey Simms 14:34 Well, Kevin, and let me ask you this, why not then give the sensors free and clear to the hospitals so that they won't I mean… Kevin Sayer 14:42 I will tell you, I will go through that as well. First of all, they don't have devices to receive the data with. Second of all, we've been very thoughtful and plan this as much as we can. Because I don't want to be the person who tells all the parents of Children that you don't have sensors anymore. So when we started this process, we have three groups. We're considering our employees, our patients and our community. We are going to make sure our patients who have CGM in the field still have CGM. And we and we will do that we are charging the hospital some we're giving away the phones to the receivers. This is not a money making endeavor for us, given the amount of people we have working on it, or we're going to get enough to cover what we put into it at best when all of a sudden done. The reason we're charging and we're limiting demand is because the last thing we can afford would be for our patient community to have every patient in a hospital walking on maglev CGM slept on can't do that. We don't have the capacity for that. We have the capacity. We're very familiar with the number of we built models Stacey , based on the number of ICU beds, based on the projected number of cases based on peaks by state Based on everything you could think of the percentage of the patients that have diabetes, the percentage that don't we have a sensor forecast. We said in our initial news release, we've allocated up to 100,000 sensors. And that also means 50,000 transmitters to this, and if the need comes for more, we'll certainly evaluate it. But those allocations are based on what we could see being used in ICU beds. And the demand, we believe we'll have enough. And we'll make enough available demand from the hospitals and supply everything to all of our patients. Stacey Simms 16:37 Kevin, my question was not about Dexcom making money. The question was about the hospitals charging patients and the unintended consequences. Kevin Sayer 16:47 They won't. They won't. if they do, like I said, if they do, I can't control it. The hospital does but but if you look at a hospital and I've, I've had discussions here, Stacey and it's, you know as we go through this crisis, And we look at this as a country and as an economy now I'm getting way off base, I apologize. But it's fascinating to me how the the, the ramifications are going to reverberate through the community. elective procedures in the hospitals are not being done. So because nobody's going in, if you can get that knee replaced in two months, you're probably not going in today. And so you have, you have an economy that's going to be affected long term by all this. I have no idea what hospitals will charge for these sensors. They'll build what they'll bill we've made it as as affordable as possible. And if we can get all these logistics worked out, and the connectivity and all the other issues, we think it's just going to be a win for them all. Going forward. We're also relatively convinced based on the data that we have seen and again, you go to the University of Washington, john hopkins, we've mapped out the peaks in all the states, how many people they think will be in hospitals, and we're very comparable, we can serve that with what we have and then we'll go from there. Stacey Simms 18:11 I'm jumping off the the point of how things are going to change. And as I know, you saw, obviously the whole diabetes community is following Lilly's move to cut insulin to $35. With restrictions. I got a lot of questions from listeners when I mentioned we were talking today about whether Dexcom had any plans for financial assistance programs for people who have lost their jobs and lost their insurance or and feel that the Kevin Sayer 18:37 grant we're studying that right now. And putting together they're putting together several alternatives for me. We are studying that. I won't commit to anything but the time absolutely initiative that we are undertaking and looking at, because this does has become that important to our patients. So we're trying to figure out how that works. And I've had calls with Numerous other companies in the industry to discuss what they're planning and what they're doing. Just so I can get a grasp as to how that works. But we were working on something I don't have anything to announce. And it may be a while we'll see. But but we are considering it. Absolutely. As, Stacey Simms 19:17 as the as you said, as the landscape changes, you know, we're not quite sure what insurance will look like I'm unemployable. Like, there's so many people who have been on the, you know, Dexcom customers for a while. Oh, yeah, I know. We're gonna run out of time. Kevin Sayer 19:28 Go ahead. No, I I agree with you 100%. There are people now Stacey , who have no idea how to manage their glucose without a CGM, because they didn't even learn on finger sticks. These new patients have learned on dexcom from the beginning. If we have learned one thing through this process, in the diabetes community, and we do hold it very reverently, how important this technology is becoming people's lives. And it's not just the patients we're getting every day. testimonials from dogs saying the only patients I can care for my next commerce, because I have their data in clarity. And I've got this role monitoring capability of my account patients I don't have with the others. This is awesome. Thank you. And that's the clarity. Stacey Simms 20:16 So making some changes this week. Unknown Speaker 20:20 Could be Stacey Simms 20:20 I got an email about that. Unknown Speaker 20:22 Yep. Okay. Well, Stacey Simms 20:24 I was just curious what why or if there's any you want to say about that, while we're talking? Kevin Sayer 20:29 I don't think they're major are going to change the whole system. Okay. We continually try and improve that. Stacey Simms 20:36 And then another question I'd like to ask is that this month Dexcom announced that in June, it will discontinue g4 Platinum and G five transmitters Kevin Sayer 20:50 That's a plane I'm sorry. Are you still there? Stacey Simms 20:53 That's okay. Can you talk about that? You had mentioned that at one point this would be happening. But can you talk about that? And then I'll also ask the same question this on the front end g7 where we stand with that, Kevin Sayer 21:06 you know, I'll start with the easier one g7 we're working through, obviously, with what's going on clinical trials has slowed down significantly, our ability to purchase equipment on the outwit while we purchase a lot of manufacturing equipment, our ability, set it up and get it in, has been affected by all this will give more color on the earnings call about that. We're still extremely bullish on it, and we will do everything we can to accelerate those timeframes we, we really haven't taken a full inventory of where everything is. We'll talk about that more in a couple of weeks. But there certainly are are environmental factors that will have an effect on it right right now what my team is doing is looking at the mitigation possibilities for any of this stuff and I don't have anything in front of me but it is front and center. I thought it was back to G four and G five From a manufacturing and a cost perspective, it's costing us a tremendous amount of money keep those lines running. We need the space for G six and G seven. And in addition to that, by supporting g four and G five we're supporting. They gave me a list of how many dexcom software apps we were supporting the other day. And I went, yeah, it's time. We believe g six is the right product for our patients. We believe when they use it, they will find that it is I know why people don't want g five and G four shut that discontinued all always relate to extending the life of the center and I get it. I'm hopeful that over time we can make it easier for patients to get and and a better commercial structure to whereby it's not as important economically as it was before as we continue to drive. For more pharmacy coverage which typically results in lower CO pays for our patients. But operationally It just doesn't make sense for us to continue to, to build those things. And we shut the transmitters off first because we know people will still have sensors. If they have a transmitter that works, they will still want some sensors. But there's a day shut off day for sensors coming Not long after that. And we'll be P six driven and then be getting all our g7 lines up and running. And this is in the, you know, this is in, in conjunction with the plants we had at the beginning of the year. So this is not a data we've moved up from a back that's exactly what we were planning on. Stacey Simms 23:32 Right. And you have mentioned that here before as well. Um, Kevin, before I let you go, I do have to ask I feel a responsibility as a person with access to you. And again, I appreciate how accessible you are you always come on and answer these questions. It's not always sunshine and roses and I do appreciate that. But I feel obligated to just ask you one more time, or at least put this out there. This is really an unprecedented time. I'm so appreciative of what Dexcom is doing, getting into the hospitals, you know, making things more affordable that way donating what you are donating, putting all these people to work to get this stuff done. But as you consider pricing and help for people who have lost jobs and lost insurance, please keep in mind the diabetes community that has helped Dexcom get to a point where you're about to join the NASDAQ 100. I know with a successful product. Yeah, I mean, it's exciting times. But it's also a time of worry for so many people, our Kevin Sayer 24:37 hours, our culture from the beginning has been if you take care of the patients, things will eventually work out. We will absolutely consider this and do everything reasonably possible while maintaining obviously our position as a public company and taking care of our shareholders as well. There are a number of things going on internally that we really haven't talked about. As we increase capacity, as you know, as, as we phased out in G four and G five, quite frankly, can double that space to G six and G seven, that might give us more flexibility with respect to to our inventory because a lot of our calls last year Stacey was me explain to you why we had 10 day weights before we could ship. And we don't want to. We don't want to go through that again. So we are absolutely looking at all these things, all the logistics involved, all involved, everything involved all over the world as well. And that's another thing. You know, one of the things used to be much more simple about XCOM. We were so us focus that we just did whatever we wanted to in the US and now our worldwide basis getting very large. So we were making worldwide decisions to which is really cool, but it's also complex. Everything has to be everything needs to be considered. We'll be more cognizant of that. We will think It, we will develop what we hope will be a good plan. Stacey Simms 26:06 Because, you know, the fear is that if you can sell the hospitals, you don't really have to worry so much about individually. Yeah, Unknown Speaker 26:12 that's that's very difficult to hear for people. Well, Kevin Sayer 26:15 as I said in the beginning, that's why we've taken this hospital approach, very measured, and very thoughtful, and and made sure that we have enough capacity to take care of our next commerce, who depend on this each and every day we have to. And fortunately, as we've spoke with many of the hospitals when they get an endocrinologist involved, they very much know that we have to take care of the diabetes patients first and foremost. So that has been that has been easy to explain so far. Stacey Simms 26:50 Kevin, I forgot to ask you one. I have to ask you one technical question that I did not ask earlier. I'm sorry about the hustle. So much of the COVID reporting has been that it's devastating. For people with type two diabetes, obviously we were talking about people with all types of diabetes. But are you finding that are these decks coms going to the hospitals? Are all these people using insulin? Is this for all people with type two who use insulin? Is it just for type two? Are you just leaving it up to the hospitals? Because it just used to be that putting a dexcom on to type two doesn't use insulin? I don't understand why no endocrinologist, I'll Kevin Sayer 27:24 be able to explain it to you. What is happening with type two patients when they go in as their glucose is spiraling out of control every bit as much as an insulin user. It appears that the effect of the virus and the treatments related to the virus are causing glucose challenges in these people far beyond what one would have anticipated. We're very early in our hospital phases, I believe. haven't talked to all of them, but I believe that they're starting with the insulin using patients. But in all candor, a lot of these type two patients are being put on insulin IV insulin as well, to get there Their glucose levels under control. So it's being used across everybody. I think I need to give the FDA kyudo akuto here because they gave us permission to treat anyone, not just people with diabetes, that's a huge step. For us, if somebody glucose compromised during this time in the hospital, if we can bring their glucose back under control, that that's a big win. And we are reading a lot about, about type twos who have glucose levels that are just going nuts Actually, I'm hearing about people who don't even know they have diabetes, who this glucose levels are behaving like that. So it's like this is it's unprecedented times on a number of fronts. And we're still here we are absolutely working on things and considering things for our patients first, but we see an opportunity. Whereas if this thing works, and we can can save some lives and make health care givers you Better, and make them able to treat this better. We're gonna we're gonna do this and we're gonna do it right. while balancing the two, we're never gonna, we're never gonna ignore patients, Stacey , that that's just not how we're wired. Stacey Simms 29:16 Well, I really appreciate you spending time with me, Kevin to talk about it and explain the system and we will look forward to seeing how it works out, you know, we'll follow up. So thanks for being here today. Appreciate it. Kevin Sayer 29:25 Well, thank you for taking the time to chat with me really inspired the airplanes zooming over my head I it's always fun to talk with you. And again, kudos to all those on the frontlines doing this. But kudos to our team, these people. I mean, it's been 24 seven for about a week and a half. They're, they're tired. So getting this this thing rolled out. It's just been it's what we're best at. We are really good at figuring things out Transcribed by https://otter.ai
D-Podcasters Unite! Stacey teams up with Alan Nolte, co-host of Dads and Diabetes podcast, Amber Clour, host of Real Life Diabetes, part of Diabetes Daily Grind and Matt Vande Vegte, co-host of Pardon My Pancreas and co-founder of FTFWarrior. They talk diabetes, podcasting tips and tricks and even previous experience with pandemics! More on Amber's Spanish Flu story CDC Pandemic Resources CDC info on Spanish Flu Check out Stacey's new book: The World's Worst Diabetes Mom! In TMSG – some wonderful healthcare heroes in a diabetes community.. and a big religious milestone while we’re all socially distancing. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android
Lilly Diabetes announced this morning it would cut the price of its insulin to $35. What does this really mean? How long will it last? Why are those with government insurance left out? Stacey asks your questions and gets answers from Lilly's US Insulin Brand Leader, Andy Vicari. Here's the Full Lilly News Release (link) From the press release: “In response to the crisis caused by COVID-19, Eli Lilly and Company (NYSE: LLY) is introducing the Lilly Insulin Value Program, allowing anyone with commercial insurance and those without insurance at all to fill their monthly prescription of Lilly insulin for $35. The program is effective today and covers most Lilly insulins including all Humalog® (insulin lispro injection 100 units/mL) formulations.” That’s right. Lilly is putting the price of insulin – including Humalog – at $35. You need a coupon, but it’s for anyone with or without commercial insurance, except for those on Medicaid. “The savings can be obtained by calling the Lilly Diabetes Solution Center at (833) 808-1234. The Solution Center is open 8 am to 8 pm (EST) Monday through Friday. Representatives at the Solution Center will help people with diabetes obtain a card in the most convenient way for them, including through email or the U.S. mail. A card can typically be received within 24 hours by email. If you already have a co-pay card from the Lilly Diabetes Solution Center for an amount higher than $35, no action is necessary. Active co-pay cards have been re-set to a $35 co-pay.” Link to Stacey's conference call March 16th with Andy Vicari ----- Check out Stacey's new book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcript: Stacey Simms 0:06 Welcome to a bit of a breaking news episode of Diabetes Connections. I'm your host, Stacey Simms and I wanted to jump on as soon as possible. And talk about the news from fully diabetes this morning and this is April 7 2020. I'm going to read right from the press release and then we're going to jump into an interview I was able to do with Andy Vicari, who is the US insulin brand leader at Eli Lilly. So as you may have already heard on social media, or on the news, this is directly from the press release. I'm just going to read what it says here, “In response to the crisis caused by COVID-19 Eli Lilly and company is introducing the Lilly insulin value program, allowing anyone with commercial insurance and those without insurance at all to fill their monthly prescription of Lilly insulin for $35. The program is effective today. covers most Lilly insulin, including all humalog formulations.” So that's right, Lily is putting the price of insulin, including Humalog at $35. Now, you need a coupon. But this is for anybody with or without commercial insurance except for those on Medicaid, and government insurance. I'm going to link up the entire release in the episode homepage. I will be putting the phone numbers, the call center information, pretty much anything you need. And let me know if I'm missing anything at the episode homepage at diabetes dash connections.com. And as always, there is a transcript of the interview you're about to hear. If you are brand new to the show. I'm really glad you found us I hope you continue to listen. I am a parent of a child with type one. My son was diagnosed 13 years ago right before he turned two. And my background is in broadcast journalism. So I hope this is an interview that gives you the information that you would ask if you had Andy Vicari on the phone yourself. I also I should say if you're new to the show that three weeks ago, I was on a conference call with Lilly, and I was able to ask a question about insulin pricing. We played that bit of the conference call last week. And while I do not get me wrong, I do not think that because I asked this question, that is why this change happened. But I think if you go back and listen to the question and answer, where I did ask, why not at this devastating time, during this world health crisis, why not? Do it now? Why not cut the price to $35 or $25? I had pushed for if you hear that question, and then Andy Vicari’s answer, I do think it gives you some context as to what has changed. But he talks about that here as well. There's going to be a lot written about this. There is going to be a lot of information yet to come. What will the other insulin makers do? It's possible by the time you're hearing this, things have already changed. So stay tuned to the website diabetes, connections, calm and follow on Social and we will keep you posted. Here is my interview with Andy Vicari, Lilly's us insulin brand leader. Andy, thank you so much for jumping on the phone on what's got to be a very busy day. I appreciate you spending some time with me and my listeners. Andy Vicari 3:15 Absolutely. Stacey. We're delighted with this announcement and happy to hop on a call with you. Stacey Simms 3:19 The news broke earlier this morning. And you've already got calls coming in. We're only speaking about half an hour after the call center opened up. It sounds like it's already very busy. Andy Vicari 3:30 Absolutely. And we expect that it will be a banner day when we had the press release a little more than a week ago with Dave bricks and some major publications. We had hit an all time high for the calls that we had received in the day and we hope to double that if we can we have it staffed and ready to go. And we want as many people to get us up as fast as possible. Stacey Simms 3:51 You know, we spoke on that conference call in the middle of March about the insulin pricing issue and about many other things and when I am Then about lowering the price to $35, you had a lot of concerns about supply chain contracts, pbms wholesalers, what changed? Andy Vicari 4:12 So we were in the works. So this solution was being prepared. But those back end dynamics are things that we have to work through. So while it would have been inappropriate for me, Stacey to promise it at that time, it was something that we've been moving towards for several weeks now all in response to the COVID-19 crisis. And I think, you know, as well as anybody, but for perhaps the listeners that aren't as attuned to some of the nuances of the drug supply chain, we have to work very closely with our partners and the last thing we would want to do is to create any sort of a panic or a rush, and then have this wonderful program that people can access or insulins. We're delighted that we are shipping out 100%. We have no back orders, we have no issues with our insulin, which is outstanding. So that's it timing is right for this program. But yes, to answer you directly when we did speak, this was something we had in the works. We're trying to get ready for market. Stacey Simms 5:09 Great. I didn't mean to imply that it was as simple as me asking you on that call. But I am curious, you know, is this why it's a coupon? Because you, you have to work through the contracts that you already have. Is that why it's not just a blanket, hey, you go to the pharmacy, and it's automatic. Andy Vicari 5:27 When I say contracts, or when I say on the back end, yes, we do have partners that adjudicate these claims. So for example, when anybody goes to the counter to be able to pick up their insulin, we want to make sure we had the things in place. So those that already have a card, that they are automatically reset to this $35 and it just takes time with some of our third party partners to make sure all of that is set. So that the experience when someone goes to the counter is as promised in the press release. So That's that's really some of the nuance behind it. But the conversations with yourself, the other advocacy groups, they are critically important. And I really love Stacey, something you had just recently wrote about. People speaking up and speaking out. We listen. I know, it's often a case where people are feeling like Big Pharma in general, isn't attuned to what's happening. But we've tried to lead from the front on the insulin issue as literally the heart of who we are and what we're really trying to do. So we always welcome those conversations. Stacey Simms 6:32 You know, the press release doesn't mention an end date as I read it, and correct me if I'm wrong there. Is this indefinite after, you know, we get through COVID-19. What's the plan for that? Andy Vicari 6:45 Yeah, you bet. important question. I think that's on everybody's mind. And what I can tell you is we don't have plans to change this program to turn it off. What we always do is constantly evaluate all of our Savings Programs and other reasons. forward as with legislation that's coming or perhaps going to be in place, it's important for us to constantly evaluate but right now, we have no plans to alter this program in any way. Post COVID-19. We hope we are hopeful for a lot of the legislation that is in the works. But we were I would say appropriately impatient, and not waiting for any of that to change and happen and we need to just get this done and get it done. Now, Stacey Simms 7:26 talk to me if you could about Medicaid, Medicare, the government insurance programs, why are those excluded here. Andy Vicari 7:34 For legal purposes we actually cannot they are not eligible for any coupons with any manufacturer on any product. We've taken other steps Stacy with our half priced insulin so that's a nice bro is the most recent that's out as of last year, and we plan to the middle of this month. are 7525 and quick pin Junior versions of those that are also at half price that helps people that are in those government programs get a much reduced insulin experience. Now we also have and have been running for some time through really cares for anyone that is in any of those federal or state programs, but is that 400% or below the federal poverty level. And to put that in perspective for people, that is somebody that makes a family of four would make 100, roughly $105,000. And for an individual, that is somebody that makes about $51,000. So anybody that at or below those levels, is eligible through really cares to apply for free insulin which, given the rates of unemployment and people filing for unemployment, I think that's a it's a well needed resource as well. Stacey Simms 8:44 So would you recommend that if someone's not sure, someone who is over the age of 65, or was on another government program, another government insurance program, should they just call to find out what they're eligible for because I think a lot of people don't realize that they may be eligible for some discount. Andy Vicari 9:01 Absolutely, you nailed it, Stacey, that is the most important thing. That's why we have chosen to implement this program the low insulin value program through our diabetes Solution Center. Because it is a little bit complicated out there. Sometimes when these healthcare professionals that answer those calls, they can help navigate that. And most of the time those people that call in that think they're not eligible, frankly, are end up being eligible for something. So yes, get them to that call center. And that is the best way for them to get the most affordable experience. Stacey Simms 9:33 I don't know if you can answer this question, Andy. But I assume when you call into the center, that you know you give a lot of information. Does Lily collect that for purposes other than pricing? I mean, I guess there's there are some privacy concerns that I've heard a few people mentioned who have not necessarily called in, but who have said well what happens to that information that I'm sharing Andy Vicari 9:56 it take as little information as possible. For example, but Give a real world example of somebody that's called in as of this morning and wants to access this $35 really influence value program. They'll take name, they'll take a callback number in case they get disconnected. And then for the quickest purposes, if they're willing to give an email address, they'll be able to email them this coupons so that they can go immediately to a pharmacy and start to use it. If they choose not to. We can send it over over mail. But the direct answer to the question is we don't use that information for anything other than to make sure people get the gift the discounts or insolent experience that we can give them. Stacey Simms 10:38 I also had a question that came in early this morning. If it does end, can you commit to giving people enough notice? In other words, you know not, not the next morning we wake up and say sorry, it ended last night at midnight. Andy Vicari 10:54 Sure, understood. So terms and conditions on all discount programs across manufacture. They have to be renewed each year. So this program, which again, as you and I talked about, we don't have plans to turn off in January, one of 2021, people will need to access a new card, so that that's no different than than any other program. So in that timeframe, they would know in calling into the call center, we'll be continuing that or not. But like I said, the most important thing we want listeners to take away from this is, we don't have plans to change this. We always evaluate the external environment as legislation changes. But we know this is an absolutely much needed program, especially since it covers those without insurance. Stacey Simms 11:38 And if that's really interesting, you know, to realize that it will go at least through January and then further as you said, You sound like you're just going to renew it and move forward. You've been in the insulin business and in the pricing arena for a very long time. I'm sure you've heard a lot of angry comments and a lot of concerns why people are going To ask Andy and I'll just ask it for them. Why did it take so long? If this can go on for a long time, I assume Lilly thinks it can stay in business. So why did it take so long? Andy Vicari 12:10 You know, really, for us it's been this isn't a new behavior, Stacy. What I mean by that is we've been looking for different ways, within the rules of the healthcare system today, to ensure that we can get the direct savings to people with the people that are actually filling their prescriptions and not go to some other third party within the drug supply chain. That's why things like standing up the diabetes Solution Center and insulin lice pro launch was so important. It's why we've continued on the back end, which we will continue with our programs where even if somebody doesn't know about this program, yet, they'll still get bought down to $95 or less. But if they have a card that they're already accessing, it will automatically get them down to $35. So the direct answer to your question is we've been at this for a while and we've been coming You need to find different ways. And the last one of the last gaps we saw Stacey was those that have no insurance. And this experience is one that we'll be able to, to ensure that those people that are paying cash or paying full retail price, get the maximum savings. So it's a it's a way for us to ensure that it happens at the right time, which is right now, given everything with COVID-19. And we felt like our other programs that were in place, we're doing an adequate job up until recently, as you can see from all the unemployment numbers, Stacey Simms 13:34 and I'm sorry, that went by quickly pardon my ignorance when you mentioned $95 automatically. I'm sorry, could you repeat? That was Andy Vicari 13:42 sure we'd been running for a couple of years now. programs in the background through a third party called relay health, where it automatically a fewer I go to the counter and say our bill was we're on a commercial insurance and our bill was $150 Unbeknownst to the person at the counter, they would never know that we'll lose doing this. They don't need to sign up for anything. They don't need to activate anything, it just automatically ensures that they pay, right around $100 or less, really $95 is what we shoot for. So that has been happening for quite some time. And it's something that we're certainly proud of to try to give a reasonable experience for people given COVID-19 right now, go ahead. Stacey Simms 14:27 I was just gonna say, is that something that since the person buying it doesn't know, do they have to ask their pharmacist to run it through? Does the pharmacist know about it? Andy Vicari 14:35 They do not. So there's pharmacies that participate with relay health and for those pharmacies that do, it just automatically happens. It's Think of it this way, Stacey, if you were I don't know where your favorite grocery store is. But as a customer, they're probably scan your card and you get some automatic savings. It is exactly like that. The difference is you don't need to do anything as the consumer. It just happens in the back end in our actions with really help In the pharmacy, so, for any pharmacy that participates with really help, that automatically happens unbeknownst to the consumer. Stacey Simms 15:07 All right, let me ask you a pie in the sky issue. do you envision a time with the complicated health system that I know we have in the United States? I know this is not all on Lilly. But do you envision a time where instead of calling to get a coupon instead of thinking Do I really health and you know, scanning my my quote my Vic card at Harris Teeter, that's the grocery store I use? You know, do you envision a time where insulin is just priced lower and we just go get what we need? Andy Vicari 15:35 I do think there'll be legislation that will happen. I think it's it's less about the insulin. I think it's about chronic medications overall. And I think that is to us, the most important thing is insulin easily the front and center conversation around it. Absolutely. Until that day, we're going to continue to push and find ways but I do foresee with chronic medications from legislation standpoint, I think one of the ones one of the things that I'm most excited about is what Center for Medicaid and Medicare has done in their Innovation Group. All three insulin manufacturers have announced that we're partnering with them as of January 2021, to make sure that those health plans that participate, have their their customers pay no more than $35 a month for those in Part D, which is incredibly important. If we rewind to part of our conversation, we talked about the legality and the rules. Right now those people aren't eligible for some of these savings and coupons. But that is a program that would ensure that this $35 a month is for not just commercial, uninsured. Also the Part D That to me is a significant step. Stacey Simms 16:46 Well, Andy, I really appreciate you jumping on when we spoke a couple of weeks ago, you know, we were talking about how a crisis is a time to define what companies are all about. I really appreciate this and I wanted to say thank you to Lily. It's going to help a lot Have people it's a it's a great opportunity to stand up. So we blessed you when it's appropriate. But kudos, and thank you for doing this. And I hope it does continue. But thanks for spending some time with me this morning. I appreciate it, Unknown Speaker 17:13 Stacey, and thank you for what you do for advocacy and helping get the word out. So we can't do it without you. Stacey Simms 17:23 Again, all of the information that we spoke about is on the website at the episode homepage, diabetes, dash connections.com. There's a transcript of that interview as well. If you want to share that with people who would prefer to read rather than Listen, I get it. And as I said before the interview, I do think things are going to change more information is going to come out that sort of thing. And we'll see what the other insulin makers do as well. They usually do follow each other when it comes to price increases. So we'll see what happens now that Lily is offering this coupon and this program indefinitely. It sounds like right. Look, I know there's already a lot of criticism online about how this doesn't go far enough. And I get it. And I've already this morning been called a shill for Lilly. I do think there is a way to have polite conversations about this and to keep pushing. So if you have questions, I'm gonna have an opportunity to talk to them again, I know, not everybody is fortunate enough to do that to speak directly to these folks. But I want to bring your questions and your concerns to them. So keep those questions coming. You can always reach me Stacy at diabetes, connections calm. We'll have a big discussion about this, I'm sure in the Facebook group diabetes connections, the group and we will keep it going. But I'm telling you, this didn't happen in a vacuum. This happened because people like you raised your voices, tweeted, spoke out, talk to your state representatives. I really do think I've said this for many years. The pressure from the state legislatures is what is going to change the insulin pricing problem in this country. The drug pricing, the medical pricing In this country, it's going to come from the States. And we're already seeing that happen. I don't think that this movement alone this change of price alone is going to stop what's happening in state legislatures because it doesn't cover everybody and you do need a coupon and there's a lot more that needs to be done. And as I'm taping, it's only Lily it's not noovlog. It's not novo, Nordisk it's not Sanofi. So the work is far from over, but this is a big, big step. Okay. In terms of the show, our next episode, which would have been the regular episode for today is going to come out on Thursday. If news stops breaking, we'll get back to the regular schedule, which is a regular episode every Tuesday. However, I am more than happy to continue to bring this information to you. And I think it's more than the information right because you can read a press release. But to me, I like to hear the voice of the people behind the stories. I really feel like you get a lot of nuance, a lot of information and a lot of fetal if that makes sense. Thanks for joining me. Let me know what you think. Keep your questions coming. Let's keep pushing. I'm Stacey Simms. I'll see you back here for our next episode. Unknown Speaker 20:08 Diabetes Connections is a production of Stacey Simms. All Rights Reserved all wrongs avenged Transcribed by https://otter.ai
Since we’re all stuck at home, here's some cooking advice to help you through. Chef Mark Allison has three boys.. one of whom was diagnosed with type 1 as a baby. He has tips and tricks for us.. starting with: just get started. Mark teaches healthy cooking but isn’t above eating smores with his three sons. Check out Stacey's new book: The World's Worst Diabetes Mom! Mark currently works with the Cabarrus County Health Alliance teaching needed home cooking skills. He’s been the Director of Culinary Nutrition for the Dole Nutrition Institute and he spent many years teaching classical chefs at the Dean of Culinary Arts Education at Johnson & Wales University in Charlotte. Join the Diabetes Connections Facebook Group! Mark has a new book out Let's Be Smart About Diabetes: A cookbook to help control blood sugar while getting the family back around the kitchen table In Tell Me Something Good – a lot of mac and cheese and a lot of help for someone who has always been giving it. Talk about paying it forward… and back. Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcript (Rough transcription, has not been edited) Stacey Simms 0:00 Diabetes Connections is brought to you by one drop created for people with diabetes by people who have diabetes by real good foods, real food you feel good about eating and by dexcom take control of your diabetes and live life to the fullest with dexcom. Unknown Speaker 0:20 This is diabetes connections with Stacey Sims. Stacey Simms 0:26 This week, how are you eating these days? Some kitchen and cooking advice to help us through Chef Mark Allison knows his way around the kitchen with a family he has three boys one of whom was diagnosed with type one as a baby. As a professional chef teacher. He says just get started Chef Mark Allison 0:45 getting in that kitchen and making something over the next 30 or 40 minutes and then sitting down eating the food but actually having a conversation instead of everybody upstairs playing Xbox or some kind of games. You're actually in one room. Communicate it and you make them so think that hopefully everybody's going to enjoy. Stacey Simms 1:03 You'll hear Mark's unique story. He and his wife moved to Alaska for an international program back in 1999. And their 14 month old son was diagnosed shortly after that in Tell me something good. A little bit of help for someone who's been giving a lot of it, talk about paying it forward and back, and a lot of mac and cheese. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of diabetes connections we aim to educate and inspire by sharing stories of connection and in this time, it is so important to stay connected. On this week's show. We are not going to be talking specifically about the corona virus. Rather, this is a show that will maybe inspire you or help you to get in the kitchen at this time when we are all first in our house and I don't know about you, but I've been Looking more than ever, but maybe to look at things a little bit differently, get your kids involved, try something new. I was so excited to talk to Mark Ellis. And we've known each other for a long time. And I've been trying to get him on the show. And it's just one of those. You know, the beauty is in the timing sometimes, because maybe this episode will kind of give you a fun day and some fun ideas to try at a time when boy, we do need a little bit of fun, and a little bit of inspiration. So there will be more information about Mark's cookbook. Let's be smart about diabetes a little bit later on. And I would urge you if you're not already in the Facebook group to please join that it is diabetes connections, the group because I'm going to be putting some of the recipes and notes that he gave me into the Facebook group, I cannot put them in the show notes. It's just a format thing. So I apologize for that. They will not be on the episode homepage, but they will be in posts in the Facebook group. So head on over there to that. And just another quick note before we get started. Thank you to everybody who continues to buy my book, the world's First diabetes mom, if you need a laugh in these times, maybe it's there for you. I've heard from people who are really enjoying it right now who have the audio book to who maybe didn't have time to listen before, although I mostly listen to audiobooks in my car. So my audio book and podcasts consumption, frankly, is way down right now. Because I'm at home, I'm not commuting. I'm not driving anywhere. But I do listen when I clean and do laundry and stuff like that. So maybe that's it. But thanks again, the world's worst diabetes mom is available at Amazon. It is in paperback, Kindle and audiobook. You could also buy it over at diabetes, connections calm but frankly, Amazon's probably the easiest right now. And I was so happy to be involved in the children with diabetes virtual conference that happened recently. I bet you can still find that online. I was able to take my world's worst diabetes mom presentation for them. Of course, as you know, like many of you, I was planning to go to lots of diabetes conferences in the last month and this spring and it's all on hold right now. So a little bit of online goodness. For you, I will also link up the children with diabetes conference which had tons of presentations in it. I think it's going to be a real resource going forward for a lot of people so I'm thrilled that they did that. All right Mark Ellison coming up in just a moment but first diabetes Connections is brought to you by real good foods. We got a sample of the real good foods ice cream. They sent it to us a Benny and I did a Facebook Live. I think it's almost three weeks ago now. Wow. About what we thought our reactions and I gotta tell you, I have been enjoying the real good ice cream since then. It is so delicious. It is a lower sugar ice cream that tastes like ice cream. You have probably had ice creams that are lower carb that tastes kind of chunky and chalky. And there isn't none of that I sat down. I shouldn't say this. I ate almost the entire pint of the mint chocolate chip. I stopped myself but it was going there. So check them out. You can find out more at really good foods calm. They ship. Yes, they're the grocery store for you. Right now I know a lot of you and us included group looking at home delivery, and you can find all of their stuff online. They'll deliver it for you some great shipping deals as well. Just go to diabetes, connections comm and click on the real good foods logo. My guest this week is a terrific chef, who as you know here teaches healthy cooking, but isn't above eating s'mores with his three sons. Mark Allison works with the cabarrus County Health Alliance, a local county to me here in North Carolina teaching needed home cooking skills. He has been the director of culinary nutrition for the dole nutrition Institute, and he spent many years teaching classical chefs as the Dean of culinary arts education at Johnson and Wales University here in Charlotte. Yes, Johnson Wales does have a campus here in Charlotte. One of Mark's sons was diagnosed with type one as a baby and his wife was diagnosed with stage four cancer in 2008. Now she did pass away But as you'll hear it His wife was able to live longer than anybody expected her to, which he says really made him a believer in the power of a plant based diet to fight disease and prolong life. Mark has a new book out called Let's be smart about diabetes, a cookbook to help control blood sugar while getting the family back around the kitchen table. We are putting recipes in the Facebook group, as I said, and of course links in the show notes. Here's my talk with Chef Mark. Allison. Mark, thank you so much for making some time for me. I know you've got all your boys home. And while we're not, I guess we're not doing much these days. It still seems like the time is filling up. But thanks for being here. I appreciate it. Chef Mark Allison 6:40 They see You're very welcome. And it's a pleasure to be on your show. Thank you very much. Stacey Simms 6:43 I'm excited to talk to you. We've known each other for a long time. I was thinking I think we met possibly the Johnson and Wales cooking competition of some kind where I was an extremely unqualified judge. Chef Mark Allison 6:59 The good old days here In the good old days, Yes, I remember you there and you were totally qualified for the position to be church exceptionally well because I enjoy eating. Stacey Simms 7:11 So there you go Chef Mark Allison 7:12 to nature, you know, in my opinion chef is fitted very nicely into my lifestyle, because I love to eat. I love it. Stacey Simms 7:19 Well, you know, I want to pick your brain as long as we have you to talk about how to try to eat well, as long as you know, we're all stuck at home. But let's talk about let's talk about diabetes. First, let's get your story out because I know everyone already hearing you knows that you are your native to North Carolina. That's a beautiful Southern accent that you Chef Mark Allison 7:37 see I was born in Charleston, South Carolina. People get that mixed up all the time. I'm actually from a little town called at Newcastle upon Tyne which is in the northeast of England. And I grew up there and the place where the usually state calls from Newcastle on Newcastle brown ale on Newcastle soccer club whether the three things that people read knowing you're comfortable, but that's where I was born. I moved to South Wales and lived in South Wales for 10 years, traveled all over Europe and in 2004 landed in Charleston, South Carolina, lived there for yet then moved up to Charlotte and I've been in Charlotte now 15 years and absolutely love living in Charles. That's great. Stacey Simms 8:20 All right, so but your your diabetes story your son's really starts in Alaska. Can you tell us that Chef Mark Allison 8:26 I was one of 30 people fit by the Fulbright teachers Experience Program, which is a program that started after world war two to get the world together through education. And teachers apply and they are asked to go to different countries around the world. And I was asked to go to America and I thought Yes, this is going to be fabulous. being brought up in the 70s in the 80s. On Starsky and Hutch and streets of San Francisco. I naturally thought I was going to California, but I would have 500 teachers that apply to come to Europe, there was only one chef and he did not live in California. He actually lived in Anchorage, Alaska. And we actually turned down the position first because my wife said we are not taking a two year old and an eight month to Alaska. So we turned it down. And then Glen, the teacher rang me over to him and said, Look, can you do me a favor? This is the fourth year I have applied. And my daughter has won a four year scholarship at Oxford University and this is her last year. Can you please take the position so we can be with her for the last year that is in the UK. So we decided to move over that and we actually had an absolute fabulous year. But while we were living there, Matthew, my youngest son at the time, who was it month when we arrived, when you go to the age of 14 months, he became ill, and we took him to the doctors and the doctor said he just had a bad case of the flu, he'd be okay. And about a week later, he had lost a tremendous amount of weight. He was drinking a lot of fluids and just happened to be Tom My brother on the forum that weekend who is a type one diabetic and has been since the age of 15 years old. And he said, I think he may be a type one take him back to the doctor's. So we took Matthew back. And we had a young doctor, she was lovely lady. But she said, there's no way as a type one diabetic it normally it's going to be about seven or eight years old. He's only 14 months. And she just said, No, I'm not testing as blood. So of course, my wife who was there, like any mother has said, well, we're not leaving your office until you actually test his blood. So there was a bit of a standoff for about 30 minutes. And then she tested this blood and within 30 minutes, Matthew is in intensive care and he was there for the next seven years. And his blood sugar's were so far through the roof that we were told that we had left her office and went to him more than likely would have been in a coma that night. So we were exceptionally lucky. And the doctor from that stage could not do enough for us as he was at his bedside every day. And as you know, Life changes. So we decided to look at food as sort of medicine and changed all our eating habits for Matthew. So from the age of 14 month, Matthew has been on a really healthy diet, you know, just turned 22 in December, and he's in great shape, but he's at college at the minute, and he's doing exceptionally well. But that's where it all started back in 1999. Stacey Simms 11:24 And I think it's worth repeating for people who are you who have children who are newer diagnosed or maybe have been newer diagnosed themselves. There really was this thinking because the same thing happened to us, Ben, he wasn't yet two years old. And they said, Yeah, under the age of two, it's Yeah, it'd be type one. There was this thinking and I don't know if it's just that they're getting better at it or there are more cases and infants and babies, but it has changed a lot thanks to people like you push an educated Oh my goodness. Chef Mark Allison 11:51 You know, it is frightening. Because you've got your doctor and you just think they've got all the answers. And but something like Type One Diabetes is you know, in Now it's becoming more and more people become more and more aware. I remember when my brother was diagnosed that he was in hospital for six months because they were unsure of actually what it was. And the unfortunate thing for my brother, he was 15 at the time, so he was nearly an adult in England. And he was actually on a cancer Ward for six months, and was frightening with him was he was watching people that were dying around him. And unfortunately, that marked him for life. He is now nearly 60 and he's in good shape and he's healthy. But he still remembers them times where people were actually dying around them because they thought he didn't have diabetes for 30 years cancer at the time, but times have changed and I think it's a lot more easy to diagnose now. And we've got great doctors, people like that more fonder. Well, it's just amazing. I think now we can rely on the medical professionals to diagnose a lot quicker than what was said 20 years ago. Stacey Simms 12:58 And when you're Your son and your brother must have had some interesting conversations about not only the difference of diagnosis, but the difference of treatments. I mean, I'm so your brother is doing well, because I can't imagine. Chef Mark Allison 13:11 Well, my I can remember my mother have sterilized his syringe and needles every night. Because the other days, whether we're like the one inch long needles, and you could reuse them, and the syringe was reused, and he was getting injected twice a day, now he's on the pen. So you've worked a lot better for him, but I can remember those days and the previous thing, and testing was blurred and then cleaning the syringe and countless cops. It was a difficult time for my mother. I know that. Stacey Simms 13:44 I feel you never want to say we're lucky with diabetes because it still stinks. Yeah, but also to make me grateful for insulin pumps and pens. My good. Chef Mark Allison 13:54 Yeah, my back muscles just changed over to a new pump. The Omni pod and you know, he He's been on the pump for at least the last 12 years and what a difference others made. You know, we as parents, I'm sure you have the same feel a lot easier that he's on something that basically regulates everything. And as long as he tests his blood, he knows when he's either going to go low, go high. And these instruments these days are just amazing. Stacey Simms 14:21 It really is. I feel really grateful. Yeah, let's jump in and let's talk about food. Because not only are you a renowned chef and a you know, an educator of other chefs, but now you work to educate the public which I just think is absolutely amazing because we need all the help we can get mark, as you well know. First of all, let me let you explain what it is that you do you work for the Harris County Health Alliance, which is a nearby you know, county to mine here in the Charlotte, North Carolina area. What do you do right now in terms of teaching the public right back to mark answering Question, but first getting diabetes supplies is a pain. Not only the ordering and the picking up but also the arguing with insurance over what they say you need and what you really need. Make it easy with one drop. They offer personalized tester plants. Plus you get a Bluetooth glucose meter test strips lancets and your very own certified diabetes coach. Subscribe today to get test strips for less than $20 a month delivered right to your door. No prescriptions or co pays required. One less thing to worry about. not that surprising when you learn that the founder of one drop lubes with type one, they get it one drop, gorgeous gear supplies delivered to your door 24 seven access to your certified diabetes coach learn more go to diabetes connections comm and click on the one drop logo. Now back to mark and he is answering my question about teaching people the very basics. Chef Mark Allison 15:55 I have a wonderful job and it's funny how I started the shop at 16 and I printed with French cuisine, and lots of thoughts, sugar and salt, and nobody counted calories or anything. And now I've went closer to being a healthy chef. And I tried to teach people how to improve their diets. So I work for the cabarrus Health Alliance, which is based in kannapolis. And my job is a fascinating job. And the fact that I go out to the general public, I go to schools and hospitals and churches, and I also do cooking classes at the cabarrus Health Alliance, and I try to teach people how to cook because if you think about it, Stacy, cooking is a life skill, but nobody knows how to cook these days. What I noticed just last week, when the food stores were out of canned goods and frozen goods, actually the produce section was still full. And my advice to anybody, especially at this time with the corona virus is eat healthy by eating as many fruits and vegetables as you possibly can because they're just packed full of vitamins, minerals and phytochemicals. So my job at the Cabal ourselves Lyons is basically trying to teach people how to cook and choose better food choices, and not so much processed food, not so much food that is packed with fat, sugar, salt, and try to get a healthy balance. You know, it doesn't all have to be healthy. But if you do choose healthy options, you'll feel better. Your health will improve and it'll fight off viruses. Stacey Simms 17:23 So when we're all stuck at home and we have this mentality, which is this is very unique, obviously. Yeah, I mean unprecedented. But now that we're stuck at home, what would your advice be? Because I did the same thing I'll be honest with you when I went to the grocery store a couple of days ago, I picked up you know, some apples some oranges, but I wasn't I was thinking hunker down. Yeah, I bypassed a lot of the fresh fruits and vegetables now that it seems and again we're as we're recording this, it seems like the grocery stores are gonna be fine. There's no problem with supply. What What would you suggest we do next time we go to the store, Chef Mark Allison 17:54 I would look at the air fresh produce and you know, start by Picking the fruits and vegetables that you like to eat. And then why not try something different? Something that you've seen before. But though you know what, I wonder what that tastes like, give it a try. You'll be amazed, I normally teach this in class where we'll have like a surprise ingredient. And part of the classes, everybody's going to try everything I make. And I might have a fresh fruit or vegetable and I chop it up and I pass it around. And it's amazing that nine times out of 10 everybody likes it. We've got these preconceived notions that we'll look at something think No, I don't think I like that for actually when you put it in your mouth and try it more than likely you're going to try something new and it's going to be interesting, then you're going to enjoy the test. So I would go around the fresh produce section and try something new, try something different. And I found the best way so especially with having three boys, if I wouldn't try something new with them. I normally just make a smoothie or soup because you can easily add something new and disguise it and they don't even know that they're in and then we told them that believe in something new. See, you know what, that wasn't too bad. Let's try it again. So I think it's all about experiment. And we've got the ideal time that you've just said, There. See, we're all cooped up at home. Why not get in the kitchen with the boys or girls, or family members and make something delicious to eat tonight? I've got to be honest, people tell me when they asked what I do for a living, I say, well, I've never worked a day in my life because I love what I do, which is I love food, and I love to cook. But our sound, it's the best way to make new friends. It's the best way to keep the family together, getting in that kitchen and making something over the next 30 or 40 minutes and then sitting down eating the food but actually having a conversation. Instead of everybody upstairs playing Xbox or some kind of games. You actually in one room communicate and you're making something that hopefully everybody's going to enjoy. Stacey Simms 19:50 Alright, a lot of people listening are gonna say, Well, sure that sounds great. But I never learned to cook. I'm afraid to cook. My Stuff always comes out. Terrible. How can you start adults who really did not learn the skill? Chef Mark Allison 20:05 You know what I was very lucky because when all my friends chose to do woodwork and metalwork, I was doing home economics. And as you can imagine, back in the 70s and 80s, that didn't go down too well with a lot of the guys, but you know what my thinking was, they see one instead of being locked up in a room with 19, sweaty guys, I was in an air conditioned room with 19 girls. And it worked out pretty good, because I found out very quickly two things. Everybody likes people who can cook and it's the best way to make friends. So I understand that a lot of people don't know how to cook. But actually, you can go online now and on YouTube, and you can learn practically any technique that you need. And I'll tell people all you really need to start with is a chopping board and a knife, and then find a recipe that you've always wanted to try. And you can easily download any recipe now from online or watch a YouTube video and cooking There's one of the simplest things you can ever learn. It's all about temperature control. It's either gonna be hot or cold. And if you can control the temperature you can make and eat anything you like. Wow. Stacey Simms 21:11 Do you remember I'll put you on the spot here. Do you remember what you first taught your boys to make when they were little I pictured them standing on stools in the kitchen, you know, learning from dad, Chef Mark Allison 21:21 and properly. And this isn't exactly healthy. And actually, we did this last night, we were sitting in the backyard having a fire pit and we all had smalls. So I'm guessing probably smalls are probably one of the very first recipes. I taught my boys. But I also taught them something very important. It's all about moderation. Whatever you make, have it in moderation. But my three boys all know how to cook, obviously, because they've been brought up by a chef. I tell people when I'm at work, I'll text my boys and be the dishwasher, prepare the vegetables, set the kitchen table, and then when I get home, all that's done, and then we get in the kitchen together and we cook dinner That night, but if I forget the text one day, believe it or not today, see, I get home and nothing has been done because boys are boys. Stacey Simms 22:08 Oh, yeah, I've been there with both of my kids boys and girls. Yeah. Oh yeah, but you didn't send the text that's funny but I'm you know, it's good to know you're human. I think it's always more fun to know with the s'mores, right that you know, yeah. And food and it's fun to learn. And then you can use those skills. I don't know what quite what skills are making but you have to control the temperature. Chef Mark Allison 22:33 Don't right. Yeah, that was our main skill. I think Stacey Simms 22:36 that's an important one in the kitchen. Chef Mark Allison 22:38 people. People ask me all the time, how do you make a healthy dessert mock and I'll say there's no such thing as a healthy dessert. So just enjoy whatever you're going to eat but have a smaller portion. Stacey Simms 22:50 You're not free and substitutes and things like that. Chef Mark Allison 22:53 I don't use any sugar free ingredients if I'm going to make something and add sugar and the sugar because normally Even if you make an a cake and asks for half a cup of sugar, when you consider that cake is going to divide a divided into eight or 10 portions, that half cup of sugar comes down to practically nothing. So I'd rather use the ingredients that are meant to be in a certain food items, then start trying to guess, well, if I put sugar free, I mean, it's going to work out the same because I'd rather just enjoy it the way it's meant to be, then try to mess around with it. That's the same with all these gluten free products and low in sugar products. You know, you're taking out one thing, but you're adding something else processed. And to me, you're far better off eating ingredients that you know, are ingredients that are more healthy than something that is a preservative or an additive or colorant. Unknown Speaker 23:49 So tell us about your cookbook that you have out right Chef Mark Allison 23:52 now. I brought out let's be smart about diabetes a few months ago and that actually started 2008 but that was the same year my wife was diagnosed with stage four cancer. So the book was shelved. And then when my wife passed away in 2015, I was approached by the American diabetic association to publish the book. And so they, they bought the rights to the book, but then they held on to it for two years. And then unfortunately, they laid off most of their editorial stuff, and said they were only going to publish well known authors, which I was not one of them. So they give me the full rights back. And so I just published that about six months ago. And it's all family recipes that we've used over the last 20 years with Matthew, all the recipes, believe makes a car very easy to use. You know, most of them take between 10 and 20 minutes, and the all healthiest there's nothing outrageous. I'm not asking anybody to buy superfoods. I don't believe in superfoods. I believe in it, eat an apple, that's probably the best food you can eat or a banana or if you had broccoli or cabbage. They don't have to be super foods. They're just packed Anyway with healthy vitamins and minerals and phytochemicals. So it's all based on practicality and what you can actually buy in your local store. And so this is packed full of soups and breakfast ideas, snacks, lunches, and meals for the kids and sort of healthy desserts. Stacey Simms 25:17 I'd love to ask you and I, we didn't discuss this in advance, but would it be possible to grab a recipe or two from the book that you think might help people who are you know, stuck at home right now? Maybe dollar level or something that would keep and we could post that for the podcast audience? Chef Mark Allison 25:32 Yeah, please do. Just choose whatever recipe you think is suitable. There's over 150 recipes in the book to choose from, and like I said, very easy to put together. And this could be the ideal time to grab a cookbook and try some of the recipes. Stacey Simms 25:45 No doubt. All right. How do you stand on we've talked about you know, going to the produce section trying to buy fresh whenever possible. Where do you stand on canned and frozen ingredients? Chef Mark Allison 25:55 Yeah, I'm a firm believer in fresh wood. If if you've got no option, then throw would be my next choice and then can't but if you're going to buy canned fruits or vegetables, make sure that they haven't got any added sugar. Unknown Speaker 26:07 Yeah, you know what I saw in the supermarket recently forget added sugar. They were packed in Splenda, their sugar substitute in the quote for juice. Chef Mark Allison 26:16 Yeah. Well, you know what people have got to make their own minds up on if they're going to use artificial sweeteners or not. I personally don't so you know, it's a choice you've got to make. But to tell the truth, if I've got the opportunity I always buy fresh because fresh normally isn't seasonal. So if you can buy seasonal fruits and vegetables, then they've got the best nutrient dense properties within them. They haven't been touched. Make sure that you wash your fruits and vegetables when you get them home and either eat them raw or add them to some kind of soup or lunch or dinner item. And to me that's the best way to keep yourself healthy. I'm a firm believer and my boys follow this practice as well. If you have half your plate, fruits and veggies But then you know, it's going to go too far wrong from being healthy and the idea with that's great advice. Stacey Simms 27:05 Yeah, back to the the canned fruit though I gotta be honest with you and you don't have to you don't have to take a stand. But I was appalled to see canned fruit with Splenda added because the big packaging was like, you know, low in sugar, and I thought, Oh, good. Water or something. And I turned it over to look at the label. I was like Splenda, how much processing you have to go through to add that and I was like, uh, so I put that back. But in these, I know, people are worried right now, and many people may have purchased more canned and frozen goods than you ever really do. Looking at me. So we're all looking to try to do the best we can. Chef Mark Allison 27:38 Yeah. And it's baby steps. It's baby steps. You know, you can kind of just turn your diet upside down because it's not gonna work. And I tell most people start with breakfast and just eat something healthier at breakfast and that's the ideal time to have a smoothie, you know, and you can Pocket full of vegetables, you know, cut back on the fruit so much, but ask or kale to smoothie out blueberries, but look at your your breakfast first and just change your breakfast for about a month, and then work on your lunch. And then finally work on your dinner. So, you know, if you just start slow, then your body becomes adjusted to it and you'll feel a lot more healthier. Stacey Simms 28:17 What's your favorite movie? Chef Mark Allison 28:18 Actually, when I used to be the director of culinary nutrition for the dog food company, I came up with a smoothie that obviously included bananas. It had almond milk, bananas and coffee. And that was a coffee fix up and the number of people that complimented that smoothie was unbelievable. But my favorite smoothies as always got blueberries and because blueberries are one of the best fruits you can eat for your memory as you get older and talk about with blueberries and spinach I use gave a banana and I use almond milk and a handful of almonds. And that saves me all the way through to lunch. Stacey Simms 28:55 I liked spinach, mango and Domino. Chef Mark Allison 28:58 That's Like mangoes my favorite fruit. Ah, Stacey Simms 29:02 I'll tell you what, I use the frozen mango because it keeps it cold and gives it that exactly feel. But I was a big I was very reluctant to put anything green in a smoothie. I thought it was disgusting. I really did. I really did. And finally my husband convinced me and it's delicious. I'm shocked shocked. Yeah, Chef Mark Allison 29:25 you can get your best and fishy and all that as spinach has got more protein than the average piece of meat weird for weird. So if you put four ounces of spinach in your smoothie, then that's got actually more protein than four ounces of beef. So probably I hit it right yeah. Spinach and spinach is one of the best foods in the world you can eat that as well as kale. Stacey Simms 29:47 Yeah I'm still I'm not around to kale but maybe I'll try it all if I could. Finish I can try to Chef Mark Allison 29:55 kill you can get away with in smoothie and solid j the like it are you doing Stacey Simms 30:00 Exactly. All right, well, that's a great idea. Um, and then I know you said start with breakfast, move on to, and then ultimately do your dinners. But I have to ask for people who are listening who have younger kids, easy suggestions for dinners that the kids can help with? Is there anything that comes to mind that you did with your boys, Chef Mark Allison 30:17 you know, you can always make your own chicken nuggets, that easy to make. In fact, there's a recipe in the book for that. But start with things that they actually like. And then just all the some of the ingredients to more healthy ingredients. Because most of the things you can buy in fast food outlets, or and most restaurants, you can replicate at home and make them a lot more healthier. It's just like anything. If you want to learn something, you'll take the time to learn. And to me, the good thing about coupon is it's a social event that actually gets people together. And it's a great way when my wife passed away five years ago, that was one of the things I insisted with my boys that every night we went in the kitchen now five years on We do exactly the same thing they were, they can't wait to get in the kitchen, see what we're going to eat that night. And usually they choose one of the evening meals during the week. And then we'll all muck in together all your sleeves up, we'll all cook together. And then again, I said, we actually sit down at the kitchen table and spend the next 30 to 90 minutes just having a conversation, which is fabulous. It's the highlight of my day. Stacey Simms 31:22 I'll tell you what, it really is an amazing thing when you can get everybody away from their electronics sitting at the table. You know, we set we did that too. We set the table every night. Yeah. Even if we're bringing in, we do bring in occasionally, you know, it goes on the table, it comes out of the takeout. Chef Mark Allison 31:39 What is social experience food is this food is one of the one things that will bring people together. And even if it doesn't turn out great. You can all have a laugh about it. And just try it again the next day. You know, nobody's gonna have a fight over a burnt pancake. You know, they you're just gonna laugh about it and say, You know what, I'm gonna cry better tomorrow. Stacey Simms 31:58 You know, I'm glad to hear you say that because I I've been there many times. Before I let you go, you know, your life has been so interesting to be touched by type one diabetes in your family. And then of course, you've had that unbelievable experience with cancer and losing your wife and I'm so sorry, Mark, but now working with people who are honestly dependent on you to teach them better ways to manage health, whether it is diabetes, or trying to avoid complications from other illnesses. And I'm curious, you know, when you do meet with these people having, as you said, you started with, you know, French cuisine, fancy restaurants fancy chefs, now you're meeting with people who may not even understand how to fry an egg. You What was Chef Mark Allison 32:39 that been like? Interesting. Before, before I took this job, I was a culinary instructor for 20 years, so I could have dealt with a lot of people and different learning needs. And it all always comes back to the basics. If you can pick up the basics of anything that You'll be successful. So when you consider, I'm now working for the health department and I didn't realize these stocks until I actually started working for the health department. But 85% of all chronic diseases such as heart disease, type two diabetes, obviously not type one, and cancer are food related. And we live in an epidemic at the minute with the rise of type two diabetes, and the continuing rise of heart disease and cancer. And if people just realize that food is so important to prevent heart disease and cancer and type two diabetes, but also it's so important once you've got one of these diseases, to actually improve your immune system by eating healthy food, and the healthiest foods on the planet are fruits and vegetables, nuts, seeds, beans, seeds, and lean proteins and lean dairies. You've got to look at your food supply, try not to eat so much processed food because that's where all the additives are. That's where they put in the colorings the preservatives. You can't buy a loaf of bread that was moldy in a day. And now, you know that loaf of bread will stand there without gathering more for a week to two weeks. Now that isn't good. You know, actually, I just had fresh bread last night. I couldn't get any bread at the store yesterday. So I decided to get the flour out and I had some dry yeast. And making bread is so easy, it took less than five minutes. But just look at the food that you generally eat. And just try to you know, when you consider the rising costs of health insurance, every year, it goes up and up. And you will know because I know with Matthew's insulin and equipment for his pump, it just gets more and more expensive for free and, but if you're healthy, then look at that as being a lifesaver for you, as far as money is concerned, because if you can stay healthy and off prescription medication, you're gonna literally save thousands of dollars every year, and your life is gonna live longer, and you're going to enjoy life more. So A lot of it's all about prevention. But if you do have an illness, then really look at your diet, because the food, it's food is not medicine, but it can help in a way that will make you feel good about yourself and make you lose weight. And it'll keep you alive a lot longer if you pick the right food choices. And the right food choices are eat more fruits and vegetable. Stacey Simms 35:22 Well, I really appreciate you spending some time with us. It's just always wonderful to talk with you. I'm glad your boys are doing well. Everybody's home now. Chef Mark Allison 35:29 Everybody, so yeah, everybody. So James got led over school for the next two weeks, possibly more, who knows? Matthews at college, but he's at home at the minute and he's just doing everything online. And then unfortunately, my son who works in a restaurant, he just got laid off yesterday. But you know what, things could be a lot worse. We've just got to knuckle down and stay healthy and hopefully this virus hopefully will be gone in two or three weeks in the golf fleet. The nation can get back to normal. Yes, I hope so, too. Stacey Simms 35:59 Mark, thank you so much for joining me, we will link up all the information about the book, we'll see how I can go about posting a recipe or two. And I'm just wishing you and your boys All the best. Thank you so much for talking with me. Chef Mark Allison 36:10 Thank you for having me on the show and you and your family stay safe and stay healthy. And hopefully we'll catch you up with another diabetic conference. Stacey Simms 36:19 Yeah, hopefully down the road and everything is rescheduled. I think the best thing is gonna be it's gonna be a very busy fall, I think. Chef Mark Allison 36:25 I think Unknown Speaker 36:32 you're listening to diabetes connections with Stacey Sims. Stacey Simms 36:38 Lots more information at the episode homepage. And of course, as I mentioned, we'll put some of the recipes and other information Mark was very generous and giving me an excerpt from the book. I will put that in the Facebook group, diabetes connections, the group, I don't care what he says I am not trying to kill smoothie. I've been there done that. But for somebody like me, having a green smoothie is a big step. I do eat a lot of vegetables. But I never thought I'd like smoothie. But like I said, the spinach smoothie was great. So he just like he said, one new thing, one new thing. Try it, see if you like it. You know, I've tried to teach my kids, although my husband is a really good cook, and he's done a much better job of teaching the kids actual cooking skills, but I try to teach them that mistakes are okay, which is coming out of my mouth. I just realized that just sounds like everything else I say with diabetes. But I mean, it's my philosophy of cooking too, because I make a ton of mistakes and everything somehow tastes good. I mean, sure, I've burned things. The first book I wrote was, I can't cook but I know someone who can. Actually Mark has a recipe. That book is a wonderful recipe. The conceit of that book is that I can't cook so I went and asked all of my restaurant and Chef friends for recipes. And it was a big book for charity for jdrf. And it was a lot of fun, but I did write a whole bunch of kitchen disaster stories into that book. Yeah, I think my life philosophy is make all the mistakes. Hey, it's working out so far. Up next, tell me something good. But first diabetes Connections is brought to you by dexcom. We have been Using the dexcom g six since it came out almost two years ago is that possible? It is just amazing. The dexcom g six is FDA permitted for no finger sticks for calibration and diabetes treatment decisions. You do that to our warm up and then the number just pops up if you like us have used x come for a long time before that. It's really wild to see the number just kind of self populate. You just have to do a lot more finger sticks for calibration. We've been using the dexcom for a long time. It was six years this past December and it just keeps getting better. The G six has longer sensor were 10 days and the new sensor applicator is so much easier to use. And of course the alerts and alarms we can set them how we want if your glucose alerts and readings from the G six do not match symptoms or expectations. Use a blood glucose meter to make diabetes treatment decisions. To learn more, go to diabetes connections comm and click on that dexcom logo and tell me something good this week. If you saw this post on social media you might have thought Stacy, you're telling me something good backgrounds are usually blue. Why was this one orange? Well, that's because my friends It featured mac and cheese. So let me tell you about Ty Gibbs. Ty is a swimmer at Henderson State University in Arkansas. He was diagnosed in 2017. It was actually very serious. He was being rushed to the hospital at the time. He was in intensive care. He spent time in the ICU, but his mom Cheryl says as he was rushed into the ICU, he was just starving. And he kept asking for mac and cheese over and over again every year since we celebrate with a ton of mac and cheese. So this tells me something good on social media the photo if you saw it was his teammates and friends celebrating his diversity with seven pounds of mac and cheese and a cake. You want to talk about a carb explosion? No, of course the celebration took place weeks ago. I believe this has And very early in March or maybe it was even in late February when they actually celebrated it before the social distancing was taking effect. But I really appreciate Cheryl sharing this story. I love the idea of celebrating with a mac and cheese. That would be something for my daughter more so than my son. When the kids are left to lane. They were asked to empty their dorm rooms of food. They weren't ordered to it was a food drive for people in New Orleans. And a lot of these kids like my daughter, most kids into lane are from far away. So a lot of them were jumping on planes or getting out of there and going long distances and didn't want to pack up everything in their dorm room. So the school organized a big food drive. And I tell you all this because my daughter donated her mac and cheese. I know she had other junk in her room that she didn't share with me but oh my gosh, she's definitely the mac and cheese lover in the family. So thanks, Ty and congratulations on your dire versary hopefully next year we can celebrate again we'll send you some mac and cheese to our other Tell me something good comes from Laura Bilodeau. A familiar name to many of you. She is the powerhouse, behind the friends for life conferences and so much more with children with diabetes. But recently, Laura found herself in the unusual situation of asking for help. She has connected thousands of people over the years. It's no exaggeration, the friends for life conference is 20 years old. And the children with diabetes organization is older than that. And I'm telling you, they have connected so many people to each other, for help for education for inspiration for friendships, including me, I've made so many friends there. But her son actually needed to help her adult son doesn't live with them, but with everything that was going on, came back home to Michigan a couple of weeks ago, and they were having trouble with diabetes supplies. They had been I'm not going to go through all the details. But like many of us, you know, they had insurance issues, somebody wasn't following through. The supply wasn't coming when it was supposed to come. And so they turn to the diabetes community for help. And as we always do, People reached out and so she posted a great picture about two weeks ago now almost that Mike Hoskins who's also been on the show is a great writer over a diabetes mine and his wife Susie. They met for coffee although they met you can see the picture. They're six feet apart each Zingerman's coffee roastery which was still open for takeout and this picture looks great. I bet that's a terrific coffee place. I'd love to check it out if I'm ever in town there but of course the big deal was that Michael was able to help her with the supplies that she needed. Is your community doing that we're having a lot of that here in the Charlotte area where people are just reaching out I already no surprise gave insulin to a friend of mine who's got an adult son who does not have insurance and is really struggling right now. So we were able to donate to them. I've got friends who had you know my Omni pod PDM knocked out and you know, they're going to get us a new one but does anybody have one in the meantime? Anybody spare sensor, little things like that goes such a long way. You know, I mean, they say little things. They They're really not when you come to rely on this stuff day to day could we go without except for the insulin? Of course, we would do finger pokes, we would use shots. But you know, you don't want to be without this technology once you have it. So way to go. Mike Hoskins way to go Laura Bilodeau, because it's tough to ask for help, especially when you've always been in the position of providing it. I'm so glad everybody got what they needed. All right, tell me something good. It's the best segment of the show each week. Tell me what you got. You can send it in Stacy at diabetes connections calm posted in the Facebook group. Or if I see it like I did, Laura, I'll just get your permission to share your story. But I really love when you send them in. So keep them coming and tell me something good. Not too much to say here before I let you go. I do apologize for sort of the weirdness of the schedule. I always pride myself on every week the consistency of getting the show out there on Tuesdays and then those mini episodes I was doing on Thursdays foot, gosh, I feel I bet you feel the same. It's almost like time has been Meaning right now. Right? what day of the week? Is it? am I eating breakfast? Am I having cocktails? You know, it's just a crazy time right now. So I am giving myself the grace to put out episodes when they make sense. I am listening to podcasts right now when I am listening, that are entertaining and distract me. I'm listening to a lot of my Game of Thrones podcasts, a lot of my history podcasts, a lot of podcasts that make me laugh. So I'm not that concerned about getting my news up to date from podcasts. I hope an episode like this, you know, gave you 40 minutes or 50 minutes. I honestly don't know where that's going to come out to yet of distraction entertainment, something good to think about and a feeling that you're not alone. As we go forward in these weeks, I'm not sure just like everything else. I'm not sure what the podcast production schedule is gonna look like. Of course, I have my sponsors and I will do what is responsible and we'll get those episodes out. But I really liked connecting on zoom calls, Facebook Live, other things like that. So as with everything else after this is over We'll see what the podcast landscape looks like, right? I mean, who knows? I hope to keep doing this, but we shall see. We'll see where you all are. It's gonna be a long, long time before things go back to quote normal. And I don't know what that's going to look like. I do hope and expect that we will be in it together as we have been as the diabetes community always is. So please let me hear from you. Tell me what's on your mind. And I really appreciate you tuning in. As always, thank you to my editor john Pugh kennis of audio editing solutions. JOHN, I hope you're staying safe in Philadelphia and doing well and that your kids are alright as well. And thank you, as always for listening. Stay safe. I'll see you soon and more now than ever before. Be kind to yourself. Unknown Speaker 45:50 Diabetes Connections is a production of Stacey Sims media. All rights reserved. All rounds avenged. Transcribed by https://otter.ai
In mid-March, the folks at Eli Lilly held a conference call for diabetes writers, bloggers, and podcasters. The call was to talk about Lilly's participation in the new Part D Senior Savings Model, as well as general updates about our insulin affordability programs. After listening to some of the remarks, Stacey asked about the price of insulin and suggested a bold way forward. You can listen to what she asked, and the response here. Transcript is below. Please note: there were many other advocates on the call - this excerpt only features Stacey's question but she was not the only person pushing for change. In particular, Amy Tenderich of DiabetesMine was also vocal about lowering the price of insulin. Check out Stacey's new book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here Links to insulin assistance programs: Lilly NovoNordisk ADA GoodRX ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Transcription: Stacey Simms 0:06 Hey everybody, welcome to diabetes connections. Although this isn't really going to be show today. This episode is more like an audio excerpt. I'm Stacey Simms, of course, and we will have a regular episode with all of our usual segments dropping as soon as later today, or more likely tomorrow. I debated putting this one out. The production quality isn't exactly as it always is, because I'm doing a quick turnaround here. And it isn't usually how we do things, but I think it's important. So here's what happened on March 16, the folks at Eli Lilly held a conference call for diabetes writers and bloggers and podcasters. The press release said during the call, you'll hear more details from Andy Vicari a leader on the Lilly diabetes insulin team about our participation in the new part D senior savings model as well as general updates about our insulin affordability program. grams. That was the PR quote, these calls are rarely groundbreaking. They do them sometimes they'll put out a press release that says largely the same thing. But they do give you the chance to speak directly to the people who help mold the policy. And I do try to join when I can. I am so glad I did this time. The PR team welcomed us and told us that in addition to the planned remarks, Mr. Vicari would speak to the company's response to the Covid 19 situation. It became pretty clear though, that this really just meant he was going to go through the already published ways to get coupons and use the Lilly call center, you know, that kind of thing, which I will link up in the show notes along with other ways to try to get a break on insulin prices from all the manufacturers. If you're a regular listener, frankly, it is the usual stuff as far as I know as of this date, which is March 30th 2020. Nothing substantially new has been announced. It's important to note and you'll understand why when you hear the audio From the call that I'm going to play, when you hear my question, there have been no widespread reports of people not being able to get insulin. There isn't a supply problem. I asked a little bit about that, because I had just been contacted by a woman whose local pharmacy wasn't carrying what she needed. But that was a local situation, and as far as I know, has since been resolved. When it became clear that they weren't really doing anything new for what is an unprecedented world situation, a world health crisis, I decided to ask another question. I asked the folks at Lilly, why not? Why not do something very bold, very different and really show us what they stand for. And I want to play you that Please come back around at the end for an important announcement about what you can do to make your voice heard on this issue. Here is the unedited version of that portion of the call. The gentlemen answering my question is, as I said earlier, Andy Viacari, senior director, diabetes US insulin brand leader for Lilly: (Call begins) All right, I'm going to ask this question and I understand it might not be a very popular one. But, again, looking ahead to as you said, there will be things in place for people who are, you know, losing their jobs who are poverty level, that sort of thing. In a time of really what is very much uncertainty, understanding that people with diabetes cannot live without insulin, as you know, why not be a hero in the space and say right now, that Lily will cut the price of insulin to one level to $35 to $25. Why not let people fill prescriptions for whatever they are written for from their physician for a price that while would obviously be very dramatic, very different, would help people around this country feel better about the one thing that they are? I can't, I can't. I'm not exaggerating this, you know what we are in this community all of the people on this call one thing that people are devastatingly worried about, there are already reports of people who don't have insulin in their pharmacy. They're very, very isolated. I have no idea what brand they are. But this is something that's on the minds of everybody was type one diabetes and many people with other types. Why not consider something that dramatic, even if it's temporary? Andy Vicari 4:32 Yeah, appreciate the passion and and some of the frustration in the question, I think it's important to acknowledge that, you know, what I can say from a human log standpoint. You know, similar to any other time, if we cut that price, could that disrupt the supply through our other supply channel partners that certainly we have contracts in place with them for a certain price so it would go beyond our ability just to cut that price. We would be having to negotiate with them. So certainly something that I think is feedback for us. I like the way you framed it. Why not? Maybe not the hero I think yourself and the folks that have any type of diabetes is the hero in this case, but we can play a significant role. What I what I will say is, we are constantly from a leadership standpoint, it's not a an overstatement to say, Mike Mason in our executive committee is constantly looking at for things we can and should be doing this time. So while I can't sit here and say it is something that has been considered and being planned, I think these conversations are further fuel for those types of interventions at a at a at an enterprise level. What could we be doing around this space? And it's important that I'll make sure that I continue to come back to my leadership, as we close this call and have those conversations What else could we be more vocal about? What else could we come out and announce to help people in this time and it may have all Just given the circumstances with the country and what's happening. So what what I can't promise you is that there'll be an immediate reaction. But what I can say is we're always looking at these things. And the steps that we've taken, the quickest way for us to do that would be with our authorized generics. Again, we have similar contracts the same contracts in place with our, with our wholesalers and with our pbms and payers, so we would have to be renegotiating with them, and they'd have to be okay with that. Now, you could argue that they they can and should be, it would be very difficult for them to say anything other than that's a good idea, but I can't comment for others in the supply chain. I know that's perhaps not the exact answer that you'd like but it's a it's a real answer on we are always considering these other options. And by cutting our price just automatically, we would put at risk those folks that are stable on our products with just not getting covered by the P ends and payers that have us on today. Stacey Simms 7:00 I do appreciate the answer. I just think that - just a bit of an editorial statement, you know, a crisis is a time to define what your company is all about and what an opportunity, I really hope you guys consider that and let the pbms and the others say no, I mean, let's give them the chance to, to not step up to the plate. And let's see what happens. (end of call) But do you think will Lily take any bold steps? I know most of you are skeptical, but you never know. And as I said that was an unedited portion of the call. There were other diabetes bloggers and writers on the call asking their own questions that hat tip to Amy Tenderich of diabetes mine for seconding. My thought and backing me up and and pushing ahead on that too. But what can you do? Is there anything right now to take action on Patients for affordable drugs. A group we've talked to here on the show before, has put out a call for all three insulin manufacturers to lower their prices right now, in response to this health crisis. There's a letter it is being released on Tuesday, March 31. I've signed it virtually, of course, and I would urge you to check it out and sign it as well. I'll link it up in the show notes and I'll share it on social media once it is live. Let's keep pushing on this issue. It is in times like these, that companies truly show us what they're about that big change can happen. And as Amy said on the call, that it's a time for disruption. It The time is ripe. So make your voice heard. Let's do what we can. I know a lot of you already, as I said are not optimistic, but we cannot give up. Thank you for tuning in. Regular episodes are coming your way the next one will be out as soon as tomorrow. I'm Stacey Simms. Subscribe to the show on any free podcast app so you don't miss out or just come back the way you found this audio excerpt. Thanks again for joining me Unknown Speaker 9:09 Diabetes Connections is a production of Stacey Simms media. All Rights Reserved all wrongs avenged. Transcribed by https://otter.ai
We asked and you answered! Listeners sent in their audio to let us know what's going on in the diabetes community right now. It's a tough and stressful time, but you're not alone. Listen to stories and thoughts from people from the US, Saudi Arabia(!) and of all different ages. Truly a time for Diabetes Connections. Want to send in your audio? Here's how - blog post Check out Stacey's new book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcript: Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes five people who have diabetes by Real Good Foods, real food you feel good about eating, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Unknown Speaker 0:20 This is diabetes connections with Stacey Sims. Stacey Simms 0:26 How is everybody doing? I'm not exactly sure how to even start these episodes anymore. We're not really doing regular episodes, full episodes of Diabetes Connections. But I didn't want to wait until I'm doing a full episode or a regular episode to let you hear what is in this one. So hi, I'm your host Stacey Simms. You know that and just like probably the vast majority of you almost everybody listening. I'm home. I'm very, very grateful to be home with my family. My daughter came home from college and you know, my son's at home. school my husband often works at home. In fact, he almost always works from home unless he is traveling for business. So he's either on the road or in the house. And I'm so grateful that he hadn't been traveling a lot this year already. And you know, we're very fortunate that he can work from home. So what have we been doing? Well, I will share with you I may have mentioned this on a previous episode, we moved recently, just across town, not the best timing because I do have a house to sell now, but we will be fine. We will figure that out. But in the meantime we have a house just set up we have lots of things to unpack. We have lots to keep us busy. We spent yesterday cleaning the house we've been in for about 10 days. And we just did the regular type cleaning that you would do you know dusting laundry, that kind of stuff. I can't say it was a lot of fun, but it was certainly something to do and we realized we were missing a few things including a broom. Apparently our broom did not make it my husband said it was trashed on the way out of the old house. So add broom to the list of things that we are picked up at the grocery store when we had to go out the next time, it's kind of a weird thing to have in your grocery store list. But you know, we don't want to be running around town to different places. I don't even know what's open right now. Got our broom. So my husband who is the much more fastidious cleaner in the family was very happy with that. Our dog is very happy that we're all home. I think like most dogs right now, she's pretty confused as to why the heck everybody is in the house all the time and why we are walking her and living with her. My daughter and I have started doing yoga. we're grabbing a YouTube channel and just trying out some different yoga classes online. I've been taking yoga in person for about a year and a half. But I'm certainly not very good at it. But it's fun to do with my daughter. But our dog is super confused and she's coming in there with us and wondering why we're on the floor and was very concerned. But now she's calmed down. She just kind of lays there with us while we do yoga. And Benny I think like most 15 year old has been keeping really busy on his phone, facetiming all his friends. He was taking these long bike rides. Before everything got shut down, he was by himself. You know, he wasn't with other people. But he's staying home now. And I think that's why. So that's our situation. But I wanted to share more of your situation. And that's what this episode is all about. A few days ago, I put out a call I, you might have seen the graphic, I put it out on social media, and it said, stuck at home, share your voice. And I really wasn't sure if anybody would respond, right? I was trying to make it easy. Just use your phone and tell me what's going on in your world. I did put out a few prompts. I'll talk about that in a moment. But a bunch of people sent in their audio and that's what this episode is going to be just a short episode to share some other voices from the diabetes community. And then in a couple of days, I will be putting out another episode our next full regular episode, whatever I'm calling them these days. I'm excited about that because I was able to talk to just a great guy, a chef with a child with type one he's an adult child is type one now, but he was diagnosed very young and Mark Been a chef his whole career. And we talked about what are we cooking now that we're stuck at home? It was a really fun interview. And I'll be sharing that in just a couple of days. I don't know if you can hear it, but I feel like my voice is not that great right now. It is allergy season here. I mean, it's always terrible. And then, you know, I feel like if I'm coughing or sniffling, gosh, you know, I mean, I'm just home, there's nobody to look at me, give me a nasty look or worry about me, but it really is just just allergies right now. So I apologize if you're hearing any of that in my voice. And if you're going through it, you know exactly what I mean. We're just you know, we're all worried we're all on a bit of an edge. So rather than hear from me the whole time, let's get to the people who sent the audio in. Let me just set this up a little bit. Some of the audio here is great. Some of some of the audio here is as you would expect, you know, people just talking into their phones. There's some homes and some buzzing, that we were not able to take out and that's okay. I was just hoping for some real voices and some real feedback. back. So I do hope you'll listen. None of these clips are especially long, but I think they give really good insight into what we're all going through at the moment. So we are starting with Molly Johannes she was diagnosed 22 years ago. She lives in Massachusetts. I'm smiling because I have met Molly. I've been fortunate enough to be at events with her. She has a blog called hugging the cactus. And I mentioned I had put out some prompts and some questions. One of which was, what is it like knowing that so many people with diabetes are stuck at home right now? Here is Molly answering that question and more. Molly 5:37 And I have to say that I'm finding it a lot more unifying than isolating. What I mean by that is, it's really nice to go on to all of my social media channels. And for the most part, I'm seeing a lot more positivity than negativity. A lot of people are coming up with different ways to stay entertained at home, whether that's going outdoors and enjoying nice weather when it's around. Or if it's staying inside and pursuing hobbies or spending more time as families, it makes a big difference. I think in my mindset just to see something other than the news, you know, certain social media sites, you kind of log on to them. And it's nothing but a barrage of like what's going on in the world right now. And while it is super important to stay informed, it's also important to focus on mental health. And I think that distractions are one way to kind of make sure that mental health is not ignored. It's really nice to just be able to talk to others and know that we're all feeling the same way right now. So with that said, I'd like to share some of the things that I'm doing to stay busy. So when I'm not working, I am lucky enough to work a job remotely. So that's something I'm very grateful for. So when I'm not working, I am watching TV, watching movies, you know, typical things like that, but then I'm also pursuing hobbies that I don't normally have enough time for, whether that's knitting or reading some new books or you know, just spending some more time I'm working on my blog, which is important to me. And I find that a lot of the times Monday through Friday, it's really hard for me to focus on certain aspects of managing my blog. But now that I'm, you know, spending a lot more time at home, I don't have a commute, things like that, it is nice to be able to work on it a little bit more. But besides that, I am just spending time with my dog making sure that I'm connecting with my friends, you know, all of my group chats, we're just kind of checking in with each other on a daily basis. And I'm thinking of doing a couple of other things to really just promote the feeling of togetherness. So with some of my friend groups, that's probably going to be a couple of virtual sleep overs that we've talked about. We're discussing certain movies that like we can watch together as a group. So that would be really fun. But I'm also thinking for the diabetes community. Like it might be really cool to do a virtual meetup slash Hangout, and I don't know I think I'm gonna look into that and hopefully come up with some dates that might work for people get a whole bunch of people on camera and maybe we can just get to know one another and play games you know, just things that will keep us going. That will Keep conversations going and reassure people that they're not alone right now. That's the big message that I think it's important to bear in mind. So yeah, with that said, Everyone, just stay healthy be well and don't forget to take care of yourselves and keep mental health a priority. Stacey Simms 8:16 Thank you so much, Molly. It is great to hear from you. I really appreciate it. Okay, next is Doug. He is from Florida. He was diagnosed when he was 15 years old. He says he's 27 years into it. Now. He is currently finishing his dissertation he sent in his audio and this you'll understand why I'm saying this one. You hear him on March 17, which was the day of the Florida primary. So he talked a little bit about that. I did not include it all because it was very important to that date, but that's what he's talking about voting by mail. So thank you, Doug. And here's what he had to say. Doug 8:52 I am doing fine. It just so happens that I am a bit of a socially awkward introvert Bert, and the kind of self isolation and social distancing policies that have been recommended by the Centers for Disease Control and Prevention. These are things that come quite naturally to me. I don't spend a lot of time in crowded environments and I'm not a touchy feely person. I hope you all will continue to stay safe, wash your hands, don't touch your face or other people in the future. And consider using some social distancing practices in your ordinary life outside of this type of pandemic situation. For example, mail your vote, mail your ballots, and I hope everyone out there is taking care of themselves. Stacey Simms 9:53 The next bit of audio came from Saudi Arabia. I was so surprised and really Just pleased to get this. So Sarah, who lives in Riyadh city, thank you so much for sending it in. She was diagnosed in 2004. And she makes a really good point about how everything around us seems to have changed except for diabetes, Sarah 10:15 to all type one D nation. I'm so happy today that everyone can hear me through this podcast. I'm sada. I have been living with Type One Diabetes since 2004. And from Saudi Arabia, I live in Riyadh city. And currently we're living in a very, extremely and exceptional situation. The whole world literally is facing the same problem of a smooth, tiny virus that changes all our meanings of life. I've been questioning myself the last two days. What are the essential things in our life? What do I really want to do? If I don't have any plan today to go to, to study, or to go to visit, what's add stress to me is living with type one D has no No, no break. So I kept saying to myself, everything has stopped. We stopped education. And we have been learning now not really stopped education. I mean, we have stopped going to schools or universities, but we're learning now through virtually and everything we're doing now is virtual, except diabetes. Nothing has changed about it. Every day. I check my BG every day I monitor my CGM every day or every three days I changed my pump site. So everything has changed except my type one D So I looked at myself and I questioned myself, the way we deal with type one D really shapes big Big, big part of our lives and really need to make sure that the way we approach and you will type windy, really healthy, and guide us toward better control. And I'm so happy to share my thoughts with you guys. I was trying to be as much as continious. Thank you Stacy for this amazing opportunity. And I want to say thank you, everyone, and hope you stay safe and healthy. And thank you very much. Thank you, Sarah. Stacey Simms 12:37 All right. This is Michael and a lot of you regular listeners who are also on Twitter probably know Michael without really knowing him because he's very active on Twitter. He's MTL 613 and when I heard him say that I was really excited because I we've been following each other for a long time now, but of course I've never heard him. He was diagnosed with type one at the age of 420 years. ago, he starts out by answering that question about knowing that the diabetes community is out there right now, even as we feel very much alone. Michael 13:12 And I think that's a very important thing. Generally, for me even without, you know, this whole situation, to know that there are people out there who are going through the same or similar things that you're going through is very important to that you don't feel alone. And it's even more important now with this whole virus situation and, and a lot of people, myself included, are trying to stay home and avoid direct contact with other people. So being able to connect over social media and in different ways and to see that other people are doing the same things you're doing even now is even more important than usual. Maddie 13:54 Hi, my name is Maddy. I'm from Arizona, and I'm 14 years old. Mandy 13:59 Hi I'm Mandy from also Arizona. My daughter was diagnosed about a year and a half ago. So Maddie, what is one good thing about being home right now? I think Maddie: 14:11 one good thing about being home right now is that it's easier to control my height a little bit better, and catch my lows. Because when you're at school, you're mainly focused on your work. And then you always hear though, beeps and alarms and then it freaks everyone out and embarrasses you while me. And so it's sort of nice to have it at home and we can control it and yeah, okay. What is one thing your parents do that actually helps you with diabetes? Well, um, they do of course, everything and I love them so much, but my main thing I guess is that my mom especially makes food that is easier on my blood sugar and dinners that coordinate with like, how Having good blood sugars, and it also helps our family in general because she has celiac. And that's hard to have, as you know, eating too and just keeping family healthy. Mandy 15:13 Yeah, we are watching our carbs a little, a little bit. It helps both of us. Yeah, for sure, was a diabetes or community event canceled that you plan to attend. Tell us about it and what you were looking forward to. Unknown Speaker 15:27 So one event that was cancelled was the jdrf walk. And I was diagnosed a year and a half ago. And one of the first things we did was go to the JRF talk. And it was just really nice to see that there are so many other people that you know, we're going through the same things as you and that I always love to see and I made a lot of friends and camp diabetes camp has really helped that and so I would be really missing out on seeing more of that, I guess. Unknown Speaker 15:56 Yeah, but it hasn't been canceled, right? It's just it's a Virtual walk now. Unknown Speaker 16:01 Yeah. So it was still having virtual walk and of course will still Unknown Speaker 16:05 attend, Unknown Speaker 16:06 but it's just different than, you know Unknown Speaker 16:08 in person and we're waiting to hear about camp or keeping our fingers crossed cross cross capsule on. We'll see that was one of my favorite ever things and Unknown Speaker 16:20 of course when you're newly diagnosed it's you get a first step in but it was just one of my amazing most amazing things that have ever experienced. So Absolutely. Stacey Simms 16:32 Okay, thank you. Big thanks to Maddie and Mandy, I appreciate you sending that in. I am thrilled to hear that you are still cooking healthy and doing what you need to do. I'll be honest with you. We have a talk in my house the other day about eating and it was basically about how well we don't have a house full of junk food. But how we're not going to police each other because there's enough stress right now and if somebody wants to eat a big cheese knows, you can go ahead and eat a bag of Cheetos. I will say that Benny is probably eating the best out of all of us right now. He has some wrestling goals that he is still keeping an eye on and he's doing great. But the rest of us might be a little bit on the track to game the unknown about the freshman 15. But the quarantine with what goes with that. quarantine? 15? I don't know. I'll keep you posted on that. Big thanks to everybody who sent in their audio. I know that's not easy to do. You know, even if you're bored, and you think, Oh, this is gonna be a way to pass the time. It's still hard to open up your phone and press record and then just talk and share your thoughts and then hit send. You know, I get butterflies every time I do a podcast episode. So I can't imagine what it's like for everybody just kind of talking and sending their audio in big, big, big thank you. If you'd like to do this again, let me know I'll put out some different prompts. Because I'm so thrilled to always hear more stories in the diabetes community. Everybody's story deserves to be told. Everybody has something to say we can all learn from your experiences. So stuck at home, share your story. We'll keep doing this if you'd like. I really enjoy hearing from you. You can refer back to the original blog post for how to do this. It really is as easy as opening the voice memo app on your phone. Every phone has something like this, recording something quick and sending it in. As you listen. I know you've heard some different backgrounds there it is better to go to a quiet background if you possibly can. some suggestions, a closet is great. Your car is a great little studio, a bathroom, you know any place in your house that is kind of small and quiet. But we will take as you here, we will take what we get because to me the message is so much more important. And yeah, I cleaned all those up. I can edit those out and things like that. And john Buchanan, of course, my editor really does the magic there. So we want to hear from you. Maybe it's even just an activity With the kids for a few minutes, thank you so much for joining me for listening regular episodes different episodes more Facebook Lives Who the heck knows what we're going to do is we're all stuck here at home. But thanks for sharing your story. I'm Stacey Simms, and I'll see you back here for our next episode. Benny 19:20 Diabetes Connections is a production of Stacey Sims media. All rights reserved. All rounds avenged Transcribed by https://otter.ai
Atrium Health doctor Mark Vanderwel answers questions on the minds of many parents these days. We will be adding a transcription later today. Quick turn around on this episode! If you saw the original Facebook live, skip ahead 17 minutes - it dropped out after some audio issues but Stacey & Mark picked it back up again, off of FB. You can watch the full interview here Check out Stacey's new book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription Stacey Simms 0:00 Diabetes Connections is brought to you by one drop created for people with diabetes by people who have diabetes by real good foods real food you feel good about eating by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:19 This is diabetes connections with Stacey Sims. Stacey Simms 0:24 Hey everybody, welcome to another episode of the show. So glad to have you here. I hope these episodes are helping. Today we are talking with a pediatric endocrinologist starting off by talking about Covid 19, of course, and things that people with diabetes specifically type one needs to keep in mind but then going down the line of listener questions things that my local Facebook group chimed in with things that the diabetes connections group chimed in with. Because if you're not seeing your endocrinologist for longer than expected, which is the case for a lot of us kids and adults, what should you You'll be doing and that's a lot of what we talked about what to do in between how to make sure that you are taking care of what you need to take care of some things you might not have thought about. And just a great chat with Dr. Mark Vanderwel, this was originally done as a Facebook Live Alright, that's only half the truth. This was originally done as a stream yard which is a an audio and video hosting system hosted Facebook Live, which crapped out halfway through and then mark and I jumped onto zoom and record it that way. So the whole video I kind of stitched it together. The whole video is up on YouTube, on diabetes connections there. It is also on our Facebook page. And here is the audio. That's what we're running is the audio of the initial Facebook Live and then everything that you didn't hear. So if you watch the Facebook Live already, the new stuff is about 17 minutes in from the beginning of the interview. If you want to skip ahead, I'm not coming back at the end of the interview. I do want to say, though, that I appreciate all of the messages I'm getting about, you know, putting out episodes. Look, we're all looking for things to do at our homes. We're all looking for good, reliable information. I am hoping to do more episodes like this more zoom Facebook stuff. So let me know what you'd like to hear. I've also been collecting audio from you from people in the audience. And I'm going to be releasing that episode and kind of figuring out how to use that great audio people just keep me posted on what's happening in their homes and what's on their minds. So I'm not really sticking to a schedule. And I guess what I'm trying to say is, I'm sorry, if you were expecting every episode on Tuesday, and sometimes on Thursdays like we normally do, but I don't know about you. I've already lost all track of days of the week. So we're just gonna put out episodes when they're ready to go. And if you want to still listen on Tuesdays, that's awesome. If you want to let me know that that is or isn't working for you. That's great, too. I just think we all need to be here for each other in these wild times. Thank you so much. All right, so here is my talk with atrium health Dr. Mark Vanderwel, welcome to everybody who is watching. I'm so glad to have you with me for this little bit of an unusual circumstances bear with us. This is the first time I've done something like this. I am Stacey Simms, the host of diabetes connections and with me is Dr. Mark Vanderwel, a pediatric endocrinologist here in the Charlotte, North Carolina area with atrium Health. Dr. Vanderwel. Thanks for joining me, Dr. Mark Vanderwel 3:26 Stacey. It's an honor as always, Stacey Simms 3:29 well, we should say before we get going, we do have some disclaimers. But the very first thing in full disclosure that people need to know is that this is my son's endocrinologist and I've known Dr. V, as I've called him many times on the show and in my book for more than 13 years now. So we've never done an interview. Dr. Mark Vanderwel 3:48 Yeah. At least recorded interview for for diabetes connections. We did some back in your radio days. Oh, that's right. Stacey Simms 3:56 Yeah, I thought you were implying that I like interviewed you when I All right. Dr. Mark Vanderwel 4:02 So it has been a long time since we've communicated it never on this platform. Stacey Simms 4:05 Well, I really appreciate you jumping in because as you know, people have a lot of questions nervous times right now. So the The first thing we need to do is is do some disclaimers, obviously, while Dr. Vanderwel is our pediatric endocrinologist, he is not yours. So please, any comments questions that you may have addressed them to your own physician as well? Nothing I will put words in your mouth here, nothing that Dr. Vanderwel says today should be taken as your own personal medical advice. We're here to get general answers to general questions. And that's really about it. So I'm gonna put you on the spot a little bit, I think. But as you listen and watch at home, just you know, let's use some common sense here. Dr. Mark Vanderwel 4:43 Yes, I'm not speaking for the pediatric endocrinology community in general. I'm speaking for myself and different physicians have different perspectives on how they take care of kids with diabetes. Different physicians will have different perspectives on Covid 19. And what I am saying is my perspective And it will not even apply universally to all of the patients I take care of because we know you are all different. Similarly, I am not a pediatric infectious disease specialist. I'm not I am not an epidemiologist, and I'm not a fortune teller. And I think we're all worried and we do not know what's going to happen in the future. And a lot of what we're talking about is just predictive, then we don't know. Stacey Simms 5:21 All right, so good things to keep in mind. Also, this is first being broadcast live on Facebook. If for some reason as you're watching it, just bonks out or something crazy happens. We're recording the audio, this will be rebroadcast as a podcast, it may be broadcast in video in some other forms. If you have questions or comments. We're using technology called stream yard, and I can see your comments on Facebook, but we're not actually on Facebook. So there's a big delay, most likely, so bear with us. And I do have a lot of questions that I took in advance. So if we don't get to your question today, I promise it may not be with Dr. Vanderwel schedules permitting, but we are going to be addressing Senior questions going forward. And you know, we're just here to see what we can do. So we want to just jump right in. Sure. Let's go. All right. So my first question is really just about what you're hearing these days because I'm talking to you at home, you're not in the office offices is closed, but are you still getting close? Okay, so what are people asking? Dr. Mark Vanderwel 6:16 Yeah, so, you know, I think the the primary things are, will we still have appointments? And the answer is we will eventually have virtual appointments. Although a lot of people will also need to be rescheduled, we don't only take care of kids with diabetes, and there are some conditions that we do need to see face to face. In general though, I think most of our kids with Type One Diabetes will be able to seen by a virtual visit, and we'll talk a little bit about that in just a minute. We do still have nurses answering phone calls in our office, I'm not sure what other offices are doing. So we have nurses answering phone calls. We have a physician that's on call 24 seven for hospital based medicine. And so we will we are creating a schedule. That's why our office is closed. We're working on developing virtual visits. And we've never done this before the platform that atrium uses was originally designed for perhaps five, six pediatricians to use to handle only general pediatric calls. And now this platform is being spread out to be used by pediatric specialists, as well as general pediatricians. And I think more than 100 physicians and, uh, and other providers are going to be on this platform. So we're still learning how to do it. And that's why we canceled appointments for a few weeks, but we will have virtual visits up and running hopefully, by next week, Tuesday, Stacey Simms 7:34 because we're going to be in that soup, right? Yeah. Dr. Mark Vanderwel 7:38 Your name on my schedule when I was telling everyone that exactly. Stacey Simms 7:43 Alright, well, I won't call your office and ask what you're doing with me. I will let them reach out to us. When you're talking about virtual and again, this is kind of specific to your office. I don't even know yet. Do we on the other side have to do anything yet or you'll read? Yeah, we'll watch. No, Dr. Mark Vanderwel 7:58 we we Will for our type one diabetes patients will likely have a medical assistant call you first maybe on the day of the appointment maybe beforehand to review any changes in medications, any new allergies, the types of things they usually ask you while they were checking you back in. And then in preparation for the phone call with a physician, we are going to ask you to gather diabetes data for us whether it's a pump, download a CGM, download a meter download, and that'll be the main thing that we as physicians will review. So we'll tell you more. We'll try to talk through a little bit more about how to do that. Although hopefully you all know how to do that. The physician will also will hopefully again, this is all new. We'll have all that information online. Stacey Simms 8:42 If you're watching, you kind of saw me roll my eyes there. Dr. Vanderwel knows this but it's a little embarrassing to admit, I never upload anything in advance. I tell them please don't be mad at me. I think the only time I ever logged into T Connect is to upgrade the pump. So Dr. Mark Vanderwel 8:57 well you know, I think the thing is, we We'll be able to get that data without, without advanced uploading, I don't want to come that 100%. But I think if your data is there, we should be able to access it. But we're gonna learn that over the next three to five days. Stacey Simms 9:12 That's what we're all be learning it, I am sure. Um, in terms of questions that people have in between these appointments, you know, one that came to mind this morning was, you know, if I, if I need refills, if I'm worried about supplies, are you here? I know most people just call their physician pharmacies are open, but are you hearing anything about issues, shortages, that sort of thing with supplies Dr. Mark Vanderwel 9:35 whatsoever, and I hope we don't, um, you know, Covid 19 is going to affect people in every sector. And I hope we don't get to a stage where there's problems with pharmaceutical production at this point, there is no anticipated problem with production of insulin production of test strips production with any other diabetes related spies. And so No, I do not foresee that as a problem. I know there's the temptation to stockpile And that's one of the things that we've seen in the general public, obviously, with toilet paper, hand sanitizer, etc. And there's that desire Should I stockpile my insulin? Well, we can't commit insurance fraud. And so as physicians, I cannot write a prescription to your pharmacy saying suddenly that a child who used to use 20 units of insulin a day is all of a sudden requiring 200 units of insulin per day, so that your insurance will cover additional insulin, I can't do that. That's illegal. And so we will be honest with the pharmacies. I'm not sure how you can get extra insulin just in case that might be something better to work with your pharmacy in terms of what they will cover or what they will allow your insurance to cover. But I do not foresee a deficiency in any diabetes related supplies. Stacey Simms 10:45 Let's jump in and talk about Covid 19 best that we can. One of the questions that seems to be coming up over and over again is you know, we've all seen in the early days of this at least, the charts that came in from China and Italy saying they're the comorbidities and diabetes Sure, can you do you know what that means? Because one of the questions was, is it all type two is it you know, work? Dr. Mark Vanderwel 11:06 Right so earlier this morning I saw some data recently published in the New England Journal of Medicine related to the children 10 and under. And the only fatality in the Chinese data that was published was a 10 month old, who had had intussusception, which is basically when your intestines telescope on each other. And so the child was already previously ill because of that, and there were no other fatalities in that population under age 10. I do not have the data for other age groups stratified out but that was what I saw on the New England Journal of Medicine earlier today. When the word diabetes is used, obviously, that is a big word and often refers to both type one and type two diabetes. And so as far as I can tell from all the Chinese data, when it says diabetes is referring to the big group of both and everyone's worried at greater risk, because I have type one diabetes, or let's face it type two diabetes? And the answer is, we do not think that people with type one or type two diabetes are at any greater risk of contracting Covid 19 than the general population. So there's no increased risk of picking up this virus as far as we know. Now data changes every day. That's the caveat here. We are still learning but at this point, there's no reason to think that people with diabetes type one or two are more likely to get Covid 19. Just like any virus, whether it's the flu, whether it's the cold, being sick, when you have diabetes makes taking care of diabetes more difficult, and we see that frequently during flu season, that when people are feeling sick, and they may not be eating or drinking quite as well, they have the predisposition to go into diabetic ketoacidosis. And so my answer to how do people with type one diabetes are people who have children who have type one diabetes, better take care of their children, either if They have been exposed to the virus or if they are already showing symptoms of a viral infection. And the answer is us you're sick. And by Sick Day protocol, I mean check for ketones. Even if your child's blood sugar is 124, you can still get ketones if they are not eating or drinking very well. So remember, ketones are what happened, or what happens when your muscles become desperate for energy. And usually with people with diabetes that happens when you don't have enough insulin in your system to help your body take the sugar out of the bloodstream and get it into the muscle cell to be used for energy. But sometimes ketones can happen if you're just not eating or drinking very well. And so ketones can happen even with a blood sugar 124 if your child has been sick, or if she is vomiting or if he is not eating very well because he feels sick. ketones also can be happening more often in the presence of fever. So although as far as we know right now, nausea and vomiting are not necessarily symptoms of Covid 19 like they are the flu. For example, fever is When you develop fever, that can also cause greater metabolic need, your muscles become more desperate for energy that can lead to the production of ketones and cause an increased risk of diabetic ketoacidosis. So my summary is related to kovat, 19 and diabetes, your child is not at greater risk, their immune system should still work just fine to fight off the virus However, they are at greater risk for developing diabetic ketoacidosis in the context of a viral illness. Stacey Simms 14:29 A couple of follow up questions on that with keep checking for ketones. Do you recommend a keto blood meter? Are you comfortable with sticks and easily? Dr. Mark Vanderwel 14:40 Yeah, I mean, most people check urine for ketones a blood ketone meter can give you more up to date information, for example, that tells you what's in your blood sugar level. That's what's in your blood right now. Whereas your urine is often saying, well, we made this urine an hour ago and it's been sitting in the bladder for an hour so it's not as up to date as before. glucometer as a blood ketone meter is, but still I think you can get the information you need from, from urine, ketosis, I don't feel you have to rush out and get a blood ketone checker just because of our current situation. I mean, Stacey Simms 15:13 I'll be honest with you, and I don't know if this is true confessions time, we've never we've never purchased a blood ketones. This was the time I thought maybe, you know, the back of my head was like, should I get on Amazon? And then I got on Amazon, and there were so many and I thought, oh my god, I'm gonna buy a terrible one. So, um, stick with what we know maybe for me? Dr. Mark Vanderwel 15:31 Yeah, I mean, there are many other things to worry about. And if you felt comfortable checking your child's urine for ketones, there's no need to suddenly change to use a blood glucose blood ketone meter. Stacey Simms 15:42 Well, he's 15. So maybe, Dr. Mark Vanderwel 15:43 Stacey Simms 15:46 I'm sorry, this if you're just joining us, we did have a bunch of disclaimers that this is not medical advice you should be taking personally, but this is my son's pediatric endocrinologist. So I might sneak in some personal questions. We'll see. But the follow up question. fever. And then I'm going to ask you that question about repro fantasy. Before I even get to that one, do you recommend? I've heard that sometimes it's better to let the fever go, you know, not to 104 but to 101, things like that. Dr. Mark Vanderwel 16:17 That is a great question Stacy and I am no longer a general I should say this. I am board certified in general pediatrics, but I have not practiced general pediatrics for 15 years. However, that all being said, fevers makes you uncomfortable. When your temperature is high, you don't feel good, but many people are excessively afraid of fever as something that can hurt you, either in the short term or the long term and in general fever just makes you uncomfortable. So when we're sick, and we have a fever, we often for other illnesses have taken an antibiotic whether it's acetaminophen, whether it's ibuprofen, and what some, some French suggested Scientists have suggested is that ibuprofen and other anti inflammatories may blunt your immune response as of right now that information what's the exact word I had it pulled up is still up for debate. It is not necessarily something that is. That is a stocking answer that we say you must not use ibuprofen in the case of a fever related to Covid 19 unproven was the word I was looking for unproven so let's let's get the elephant out of the bag. What is killing people with Covid 19 is not fever. What is killing people with Covid 19 is respiratory distress is the inability to get breath in and children with diabetes are at no greater risk for developing that than children who don't have diabetes when it comes terms in terms of managing fever. Yes, ibuprofen is a anti inflammatory, ibuprofen at this point. We don't know if it's safe or not. My recommendation, though, is is to say, you know, we want to make sure you're drinking. We want to make sure you can keep fluids down. And if you are so uncomfortable that you can't drink or keep fluids down because of the high fever, then yes, we probably should treat the fever and at first maybe you treat with IV or with acetaminophen. But if all you have is ibuprofen, and you're you're miserable, at this point, it's still unproven that ibuprofen will make Covid 19 worse or prevent you to impair your ability to fight it off. Stacey Simms 18:27 Well, and will continue to follow that obviously, Dr. Mark Vanderwel 18:29 just new information. Stacey Simms 18:31 It's unproven, but I mean, I can't lie. I still you know, I take ibuprofen here and there I immediately was like, No, because it's it's scary. Dr. Mark Vanderwel 18:39 Sure. Yeah. Stacey Simms 18:41 I went and checked everything in the house. How much acetaminophen do we have? What What else? Oh, because acetaminophen isn't so many cold medicines, sir. Let me ask you that people with type one and type two people with diabetes. Let's just say that who use CGM know that with Tylenol acetaminophen come warnings with death. calm. Now my understanding is Dexcom je six you can take 1000 milligrams of Tylenol safely by safely means it's not going to burn out your sensor you can is nothing to do with them anything beyond the sensor we're talking about here is that what you were understanding? Dr. Mark Vanderwel 19:15 My understanding and just for clarification even in previous versions of Dexcom if you're using g five if you're using g four acetaminophen does not prevent it from working. It just may mean the readings it gives you are not as accurate as they might be without acetaminophen in your system. But that's also my understanding for the for the Dexcom g six, Dr. Mark Vanderwel 19:35 just think or stick. Agreed? Dr. Mark Vanderwel 19:37 Yeah, if you feel your ducks comm isn't accurate whether you have acetaminophen on board or whether you don't have acetaminophen on board, poke your finger. Stacey Simms 19:46 Right? Which means that a lot of people need to make sure that not only do we have a meter and test strips, but that we have the batteries or that our stuff is plugged in because um I know A lot of us are very reliant on CGM. Let's just put it that way. And I'm looking at my phone, not to be rude, but to look at the next few questions. So as you're watching, Dr. Mark Vanderwel 20:10 I know you go Okay, fair enough. Stacey Simms 20:15 That was more for these guys. But seriously, um, I'm curious too, with, with not knowing when many of us will see our children's, endo next, or if we're adults are watching. Are there things that we should be doing? To check in between? I mean, I know that I'll give you an example. You always check penny for you know, scar tissue. Dr. Mark Vanderwel 20:40 Right? Like lipohypertrophy. Exactly. Okay, Stacey Simms 20:42 so go for it. Tell us what we do. Yeah, Dr. Mark Vanderwel 20:43 so, so lipohypertrophy is when you will put your infusion side in the same place too often, or you give yourself insulin injections in the same place too often. And the downside of that is not only does it look funny, but it can prevent the insulin that you give yourself from getting into The bloodstream, and then it doesn't get from the bloodstream to the eventual target tissues of liver and muscle. So if you are thinking you're giving yourself a bolus, but you're giving it giving it into an area of life or hypertrophy, then perhaps the insulin isn't doing what it needs to do. And that can obviously be dangerous and increase your risk of decay. So, yes, I do think that parents should be checking your child for life or hypertrophy in the same way that their endocrinologist probably does regularly. And the thing that I would probably say is, the easiest way to do is just make sure it doesn't feel like a tricep, you know, flex your tricep right here. And you can feel a little bit of muscle tissue right there. And light by hypertrophy feels a lot like that. It feels kind of clumpy. It doesn't hurt the child, but it feels it like oh, it seems like there's a big clump of subcutaneous tissue here. You can even see like oh hypertrophy a lot of times and I might wind up doing that when I'm doing virtual visits is just have the kid in the room and say, Show me where you Put your palm but just look to make sure it's not looking clumpy now, I'm not going to do anything. Like make them show me their family or anything like that. But you know, their arms, their belly, that sort of stuff. Yeah, I might do that at the opposite. Stacey Simms 22:13 That makes a lot of sense, though. You know. And another thing I was looking at my list of questions when we were talking about supplies, one of the interesting things is people seem to be posting quite a bit about not being able to get those little alcohol wipes. Yeah, we haven't used those in a very religiously for years. Sure, sure. Is that something people need to be concerned about? Should I be getting out the rubbing alcohol and checking to make sure as a pediatric Dr. Mark Vanderwel 22:36 endocrinologist I should say the standard line Yes, the proper protocol for either giving an insulin injection or putting a new infusion site in or putting a new Dexcom in or poking a finger is to wipe that area with alcohol first. That being said, You are probably not the only family. I take care of Stacy where your child does not use rubbing out Color an alcohol swab every time. So yes, we want clean skin. We know that giving an injection or anything that punctures the skin. without alcohol, there is a slightly increased risk of getting an infected site. There's bacteria everywhere. Obviously there are viruses everywhere. But when we're thinking about using alcohol swabs, we're thinking about killing the bacteria on the skin or removing the bacteria from the skin so that you can give a cleaner injection, or a cleaner infusion site or a cleaning Dexcom or cleaner Dexcom site etc. So if you can't get alcohol swabs, you still need to give your child insulin and you still need to figure out what her blood sugar is. So all in all, what's better to give a shot with alcohol to give a shot without alcohol swabs or to give no shot at all. They go in that order best is with second best is without third best is no insulin at all in that's not best. That's bad news. So Stacey Simms 24:00 So, you know, another thing, that I have a whole bunch of questions here that I'm trying to get to the right order to go in, when, when we're talking about these in between visits for a long time, and again, I know that you may be limited as what you can say, because we are talking in official capacity. So some of this is on, you know, I don't say on the record off the record, but you'll understand. So there are a lot of people who are very comfortable adjusting pump settings. Sure. There are a lot of people who aren't, you know, what's your advice for a family? And this was a question that came up in our group. I'll say, Michelle asked this, how do you advise or empower, newer diagnose parents on taking pump settings into their own hands? You know, are there ways to tell when something is a basal issue or a QRP? Sure. Dr. Mark Vanderwel 24:46 Yeah, so first of all, I'm speaking for myself, I'm not speaking for every pediatric endocrinologist out there. I feel comfortable with my patients adjusting insulin settings without my permission, you do not need my permission to adjust your pump settings or your insulin dose. Is, however other pediatric endocrinologist may feel differently. I'm not speaking for all of us. In general, if your basal rate needs adjustment, that means that your child has been going a long time without eating. And her blood sugar either goes up, or her blood sugar goes down in the absence of all other factors. Best time is overnight. So if your kids waking up with a high blood sugar in the morning or higher than it was when he went to bed, that probably means he needs more basal. If he's waking up with a lower blood sugar than it was when he went to bed in the absence of the correction dose at nighttime, then chances are he needs less basal insulin. And kind of the same thing goes for carb coverage, if you notice every time after a meal, and I'm not talking about just that postprandial spike on a Dexcom because that is related not to the insulin quantity but to the timing of the insulin absorption. But let's say two hours, three hours, three and a half hours after every meal. If your kids blood sugar is going up that means That she needs a stronger carbohydrate factor. And remember, Stacy, I know you've written about this in your book, the factor is the denominator, right. So of insulin to carb ratio of one to 10 is stronger than insulin to carb ratio of one to 15. It's the denominator of the fraction. Similarly, for the instant correction factor, if you're giving a dose of insulin through the pump, or through the sliding scale that you've written down, and your child's blood sugar doesn't come far enough, universally, don't make adjustments based on just one thing, let her wait for a pattern to develop. But if you're noticing that you're that your child's blood sugar never comes down far enough after you give them a correction dose. That means let's make the correction factor stronger. And by that I mean maybe change it from 60 to 50, or from 50 to 40 or from 40 to 35, etc. Vice versa, if you are scared to to give a correction dose because your child's blood sugar because it doesn't come in or comes down too far after for extra dose that make it a little weaker. And by doing that I've seen baby move it from 50 to 60 From 60 to 75, or 75 to 90, etc. Stacey Simms 27:04 So if you're watching this, and I covered my face and kind of made a joke, the reason is because in the book, I do talk about this, but I have definitely made the mistake of thinking that a smaller number meant less insulin. Dr. Mark Vanderwel 27:18 So it is confusing. It is it, just think about it in terms of the denominator of the fraction, a half a pizza is bigger than a quarter of a pizza, even though two is smaller than four. Stacey Simms 27:30 You know, and that brings, I know this, this interview is getting a little bit away from Covid 19. But we've got plenty of time to talk about that. The just a follow up on the calling your physician and you know, there are a lot of wonderful presenters like yourself, who will take a call every day for a month from a nervous mom of a newly diagnosed kid. But there are a lot of parents who worry that they're bothering the doctor for things like that. Obviously, it never bothered me. But all kidding aside, can you assure people that if they're calling for instance adjustments that Dr. Mark Vanderwel 28:00 it's okay. Yeah, it is absolutely. Okay. Like I said, I want you to feel empowered to do that on your own. But if you need help, we are there to help. And my office still has CDs answering the phone during daytime hours, you can take blood sugars and help make adjustments. The physician on call over the night or weekend can also do that, although it's probably easier to do that during office hours while we have CDs answering the phone because they can pull up the child's chart whereas if you call me on a Saturday afternoon, I'm not going to have your child's chart at my fingertips to make those adjustments. So yes, but please don't feel you are on your own. And please don't feel you are bothering us. Yes, when we take call. We also are seeing patients in the hospital and we are usually seeing patients in the office although now we may be doing more virtual visits. We are doing other things. It's not like all we do is just feel phone calls. We are doing other things and so we appreciate that one. If it's not an emergency, if it can wait until morning. That'd be great to wait until more But there are emergencies. And we also understand that when people have a child with diabetes, they worry at three o'clock in the morning, and if they're worried enough, please call us. Yes, that's what we're there for. But remember, we also are not general pediatricians. And so when it comes to Covid 19, if you are worried that potentially your child may have been 19, that is a better question for your primary care provider rather than us. We are not your general pediatricians. However, if you're feeling like your child was getting sick, and you're having trouble managing their blood sugar's because they're sick. That's a question for us. Stacey Simms 29:32 Well, and that was what I was just going to ask if someone says, Oh my gosh, I think my child has Covid 19 and they have type one diabetes, what would you advise them to do? Dr. Mark Vanderwel 29:43 I think we're still learning more and more, you know, testing is not really readily available and everything that I've heard about testing to this point, it's been difficult to get a test now hopefully, that'll change soon. Um, and However, our primary care providers are at the frontline of giving of getting people coded testing. figuring out who needs to be tested? So I would defer that question to your primary care office because they will have the most up to date answers about whether you should simply, well, we should all be quarantined ourselves, right, we should all be practicing social isolation, but especially if you have any suspicion that you or your child has Covid 19 you need to stay in your house. And you do not need to expose any other people to this. So in that situation, though, whether do you bring your kid for a Covid 19 test? Or do you just try to isolate them and pray that they get better and again, they should I mean, kids with type one diabetes are not at greater risk for developing Covid 19 or having the respiratory complications, it just makes them more likely to get ketones. So anyway, um, if your kids healthy enough to just stay at home and continue that quarantine. Right now, that's probably what we're recommending, although things may change anytime, Stacey Simms 30:57 and I guess you've answered this, but I'm going to ask them Again, just in a different way, to be perfectly clear the evidence as we're speaking right now, would say that if a child comes down with Covid 19 has type one diabetes, there is nothing different Dr. Mark Vanderwel 31:11 to ground at home. Just Just differently from a diabetes management perspective perspective, make sure they're hydrated check for ketones if they're actually acting sick, even if their blood sugar seems fine. Um, follow your sick day protocol. But yes, nothing different compared to your other children who might not have type one diabetes. Stacey Simms 31:32 Um, something else I wanted to ask. Gosh, I should have closed the blinds. Whoo. It's getting hot in here. One of the things I meant to ask when you talked about the time in between visits because I had a lot of questions on this in our Facebook group. People are saying like me, Benny's appointment was supposed to be in two weeks, we'll do a virtual visit, but I assume we're not going to get that a one. See that? We usually get quarterly. Do you? Look we have a CGM so I can see what it probably is. But do you ever recommend a homemade one T tests. Dr. Mark Vanderwel 32:01 Okay, you and I, about a one says yes, yes. So again, I'm not speaking for every pediatric endocrinologist out there, but people definitely overrate the importance of A1C, and so many people come into my office on pins and needles because they're so nervous about what that number is going to be in. As we've said before, you've heard me say it. And I think that's one of the reasons you and I get along so well is because we have a similar perspective, and everyone has different perspectives. But my perspective is, the ANC is just a number. And it's right now the best number we can get in a six minute turnaround test, tell us to summarize blood sugars, but it's just that it's just a number. And as we have more CGM data available, I think we're going to learn that time and range, maybe an even better predictor of avoidance of long term complications, because that's what we're talking about, right? We're talking about not necessarily trying to get your kids A1C to be less than x. We We are talking about trying to help your child be as healthy as she can be when she is 85 or 90 years old, right? And so it's not about the agency, there are plenty of kids I take care of where I'm worried. This kids having way too many low blood sugars, it's affecting their lifestyle. And I'd be much happier if they're a once you jumped up a half point or a full point if they had fewer low blood sugars. So my perspective on it once you may be different than many of my colleagues, I don't think it's worth it for you to check anyone see in the middle of between office visits, especially if you have the capability of looking at a continuous glucose monitoring system that can tell you time and rich. Stacey Simms 33:38 Is it homey? Once the test even accurate? I've always wondered about Dr. Mark Vanderwel 33:41 Yeah, I mean, I think so. I mean, I have not seen I'm sure there are studies out there comparing the home a woman c test to a serum drawn that means coming from your arm type of A1C test versus a finger poke A1C test, which we do in our office. Um, I honestly have not looked at those studies, so I can't answer your question. But my guess is yes, it's probably pretty close. Okay, so Stacey Simms 34:04 I have another one. You know, all these people in my group know you very well. And the question, I've lost the question, Where did I put it? Ah, here it is. Okay. So it's a two parter. The first part is all about technology. Have you mentioned time and range? You mentioned CGM advice for parents. This is a question who says, Are we overly reliant on technology? Or is that a thing? Does she need to worry about being isolated? If something doesn't work? Dr. Mark Vanderwel 34:35 Yeah, I mean, you use what you have. I mean, we didn't have dex comes when Benny was first diagnosed. We didn't have insulin pumps, when I was, you know, or there were they were out there, but they were not commonly used when I was a resident. Um, when my senior partner Dr. Parker was doing his medical school, they didn't even have finger stick blood sugars, right. And so diabetes management is changing and we not relying on technology, but the technology has been good. And it's helped make diabetes easier, not a cure, but a little easier unless you become a slave to that technology. And you can definitely overreact to the readings on a Dexcom. I know plenty of people who will not put their phone away because they always want to know what every second what their child's blood sugar is. And that's not healthy either. Dr. Mark Vanderwel 35:22 I know what you're talking about. Stacey Simms 35:26 I'm only half kidding. But yeah, nothing really can be a problem. I think the bottom line for that too, is if as you're listening, you think, gosh, I don't even know where our meter is. Or do I have test strips? You know, that's the kind of thing that you'll definitely want Dr. Mark Vanderwel 35:40 to check but you do need to have a beat. You need to have a meter even when your child wears a Dexcom or a Libra or Medtronic CGM. You will need a backup way to check blood sugar. So yes, please have a meter and strips and lancets that's the finger poker available. Stacey Simms 35:55 lancets we all have 5000 of those. Dr. Mark Vanderwel 35:57 Yes. Dr. Mark Vanderwel 35:59 Last question was Do bow ties help you in your practice? Stacey Simms 36:03 choice only. Dr. Mark Vanderwel 36:04 So, my grandfather always wear bow ties, you actually might be able to see him right over here at Grand Prix right over there over my shoulder. Always wear bow ties. Um, and so I got that from him. Um, and someone said, I looked smarter when I bought a bow tie. And I was like, you know, great. I like looking smart, even though I so, but to be honest, yes, um, especially in this age of viral transmission, you're probably not going to see me wear a tie when we do a virtual visit. And you may not see me wear a tie as much in the office in the near future. The reason that many of the pediatricians through Boston Children's Hospital other of the older pediatricians wear bow ties rather than long straight ties is because there's less germs from this than there are from something dangling and so I will for virtual visits, I probably will not I almost certainly will not have a bow tie on and for the for visiting the office, I probably won't either just to have one less thing on mice around me that can collect your Dr. Mark Vanderwel 37:06 which is your grandfather in the medical field or, you Dr. Mark Vanderwel 37:09 know, furniture industry. Stacey Simms 37:13 All right. So before I let you go, because this is the first time I've ever had you on the podcast, hopefully not the last. But you know, it was in the interest of kind of feeling a little strange about, you know, that kind of relationship, my son's endocrinologist and that sort of thing. But now, I this has been great. I'm curious, you know, you've been in practice for us at 15 years. I finished Dr. Mark Vanderwel 37:34 my fellowship in 2005. So this is this will be my 15th. year as of July one or the end of my 15th year. Dr. Mark Vanderwel 37:42 Yeah, we caught you Dr. Mark Vanderwel 37:44 right at the beginning. Right, exactly. You were one of my may not my very first but one of my first patients now, I shouldn't say that. But yeah, Stacey Simms 37:51 I mean, in the first couple of years, Dr. Mark Vanderwel 37:52 right, exactly in the first few years. Exactly. So Stacey Simms 37:54 I'm curious, you know, it's hard to sum up in just a few minutes, but from then to now. already mentioned the technology have things. It's kind of a pet question. I was gonna say, Have you seen things change, but I really want to know, like, how is it to be a pediatric endocrinologist from then to now? I mean, it's got to be difficult with insurance things and all that sort of stuff. But are you still happy? This is a field you chose? Dr. Mark Vanderwel 38:20 Yes. I love my job. I love taking care of kids with diabetes. I kids with diabetes are only about 30 to 35% of my patient volume. And so I take care of 60% of other kids that I also love taking care of. It's the dream job. And yeah, I did not grow up thinking I wanted to be a pediatric endocrinology. I didn't know I really wanted to be a doctor. When I was in high school. I mean, there are some people that say they knew it from age two for me, that was not the case. But every step along the way, I've kind of thought yeah, maybe I do want to be a doctor. And then I go to medical school and yeah, maybe I do want to be a pediatrician and then I do my pediatric rescue. See and yeah maybe I do want to become a pediatric specialist etc so each step has kind of led me along the way and it's been a great choice I love taking care of your own as well as the all the other kids that I take care of. It's a dream job except for the paperwork. Stacey Simms 39:15 Alright, so I'll check in with you again if I can during this time who knows how long we're going to be at home you guys doing? Okay, you can have your own everybody Dr. Mark Vanderwel 39:22 do everyone's healthy. You know? I mean I I'm worried I mean, not about my kids not necessarily about my health I mean when one of those middle age brackets right but I'm worried about my parents, my grandparents who are still alive, you know, I'm, I am worried about I'm worried about the economy of not only our country, but the world I'm worried about, about the financial well being of my patients, even though I'm you can kind of get the sense I'm not really all that worried about the health of my patients with Covid 19 as long as they Following Sick Day protocols and but that doesn't mean go out and get exposed because obviously we need to contain this virus. I am worried about our world. But I'm not necessarily worried about the children that I take care of related to cope with it and I just don't want them spreading this terms to their grandparents. Dr. Mark Vanderwel 40:17 I think you're absolutely right on that. Well, we will leave it there. And hopefully we can check back in and I will see you for a virtual visit. I'm sure we'll be hearing from Dr. Mark Vanderwel 40:28 that. Stacey Simms 40:31 But I do appreciate it. Thank you so much. Dr. Mark Vanderwel 40:33 Yes, thanks for getting the word out states you remember, wash your hands stay inside socially distinct yourselves. Dr. Mark Vanderwel 40:41 But don't forget to call your parents all the people you love. Dr. Mark Vanderwel 40:50 Diabetes Connections is a production of Stacey Sims media. All Rights Reserved or wrongs avenged Transcribed by https://otter.ai
This week, the perspective of a diabetes dad. Tom Karlya has become much more than that since his daughter was diagnosed in 1992 and one of his sons in 2009, with many efforts extending through all parts of the diabetes community. But he says it all comes back to family. Check out Stacey's new book: The World's Worst Diabetes Mom! We’ll talk to Tom about his story, his efforts with the Diabetes Research Institute – the DRI – his acting career – and much more. Tom is a tireless advocate and if you’ve never heard him speak, we promise you’ll be inspired. Join the Diabetes Connections Facebook Group! In Tell Me Something Good – college sports, school scholarships and a young JDRF advocate answers Stacey's questions. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode transcript: Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Real Good Foods real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:21 This is diabetes connections with Stacey Simms. Stacey Simms 0:26 This week, the perspective of a diabetes dad Tom Karlya has become much more than that since his daughter was diagnosed in 1992. And one of his sons in 2009. With his efforts extending through the community, but he says it all comes back to family. Tom Karlya 0:45 Communication is the most important thing. And for the for dads to realize, to look for places where you can pick up the ball and run with it, where you can be part of your child's life. Don't let your wife do it. Make yourself part The solution Stacey Simms 1:01 will talk to Tom about his story, his work with the Diabetes Research Institute, his acting career, and much more. Tom is a tireless advocate and if you've never heard him speak, I promise you'll be inspired in Tell me something good college sports school scholarships, and a young JDRF advocate answers my questions. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I'm so glad to have you along. I am your host, Stacey Simms. We aim to educate and inspire by sharing stories of connection when it comes to type one diabetes. My son was diagnosed just before he turned to 13 years ago. And I know there's an awful lot of stress in all our lives right now. This is a difficult time to say the very least. I'm not going to fill you up with a whole bunch of cliches here, but I do hope That as you're listening, you do know that even if it's online, the diabetes community is there for you. We're here to help. We're here to share stories. Hopefully your local community is banding together. I'll talk about that a little bit later on in the show. But this week's show is not going to be about COVID 19. It is going to be about some inspiration. You know, with everything that's going on, I thought it would be really nice to have something like this. Tom Karlya and I actually spoke a while ago. And while I was listening back to this interview, like I do all the interviews, it struck me that it sounds a bit like a keynote speech that you would hear at a JDRF summit or another diabetes gathering like friends for life, because all of those conferences have been canceled. I really thought maybe this would make you feel like you're hearing a speaker at a summit. Right? So let's listen to it. Maybe in that vein, and if you're bummed out like I am that those conferences have been canceled. I mean, let's face it, they are for education. They're for learning. They're for resources, but they're also just to get together and see friends, right? You know, maybe this podcast or the Facebook group can be some support for you a place to hang out. So you can always email me Stacey at diabetes, connections calm, or jump into the Facebook group, which is diabetes connections with the group. I know that diabetes makes us tougher to begin with, right? This is such a great community. And we do know how to help each other out because we do it all the time. Right? I think we're seeing some neighbors come together in the greater community, at least if where I lived, you know, do you need this? And can I go to the grocery store? People with diabetes, have been doing that for a long time. So let's just not stop doing it. Now. As you'll hear Tom say, as he has said for many years, you just don't do nothing. You can do a little something and really help. And we'll hear from Tom in just a moment. But first diabetes Connections is brought to buy One Drop. And you know, I spoke to the people at One Drop and I was really impressed about how much they get done. Diabetes. It just makes sense. Their CEO Jeff was diagnosed with type one as an adult. One Drop is for people with diabetes by people with diabetes. The people at One Drop work relentlessly to remove all barriers between you and the care you need get 24 seven coaching support in your app and unlimited supplies delivered, no prescriptions or insurance required. Their beautiful sleek meter fits in perfectly with the rest of your life. They'll also send you test strips with a strip plan that actually makes sense for how much you actually check. One Drop diabetes care delivered, learn more, go to diabetes, connections comm and click on the One Drop logo. My guest this week was brought into the diabetes community back in 1992. When his then two year old daughter Kaitlyn was diagnosed one of his other children he has two other sons would be diagnosed 17 years later, but Tom Karlya jumped Writing to see where he and his family could help taking part in early JDRF campaigns, the Diabetes Research Institute and children with diabetes. I think Tom vo would tell you the best thing about him right now is that he's going to be a grandfather. The news came after we had spoken for this interview already, but his daughter Kaitlin, and her husband Andre, are expecting later this summer. And yeah, that's the Kaitlyn diagnosed as a baby herself basically back in 1992. Here's my talk with diabetes dad, Tom, Carl. Yeah, Tom, thanks so much for joining me. I cannot believe that I'm just now finally talking to you for the podcast. I appreciate it. I know how busy your schedule is. Tom Karlya 5:42 Wow. They Thank you, to you. I mean, it's it's you know, I guess they say when people are busy, they're busy. And those are the type of people we like to hang out with. So I know how busy you've been, how busy I've been, and now the twain has met. So that's terrific. Stacey Simms 5:55 So much to talk about here and I want to talk about your you know, your experience. ances over these many years, but let's start by, you know, your work with the Diabetes Research Institute foundation. Do you mind telling us, you know, for people who may not be familiar, what is that? Tom Karlya 6:13 The Diabetes Research Institute in the foundation is is has support for the Institute. It is all the money that the foundation raises goes to the Diabetes Research Institute, which is an 87,000 square foot building that sits on the campus of the University of Miami about 35 years or so ago, when the Diabetes Research Institute foundation first began by a group of parents like many of the diabetes organizations that are out there, somebody there had a connection to the building and construction trade union. And that gentleman said, Why don't we try to raise more money for you. And during June on Father's Day weekend, they created debt, dollars against diabetes and they stood on street corners around the country with buckets and they collected change from anybody at the stop. The lights, etc, etc, etc. And they continue to do that. So they had enough money, and they raised like $14 million. And they took and they built the Diabetes Research Institute, which when it came time when the building was done, the foundation said, Let us name the building after you and all the terrific people of the building trades unions, and they sit down and they say, let's just put a plaque on the wall that said this building built by the hands and hearts of Americans construction unions, and that plaque is still there. It represents a beacon of hope nobody expected it to become the research center that so many organizations, the wonderful organizations out there, the JDRF the ADA is the National Institutes of Health. They fund us We are the scientists doing the work at that center, Stacey Simms 7:52 and d-ri to be clear if people are not familiar. The work that Dr. II does is cure, cure focus research. Right, Tom Karlya 8:00 secure focused all the stages of research, basic preclinical and clinical happen within one building. A lot of time in academia, you come up with a finding, then you have to go someplace else to find somebody to collaborate with, we go from one floor to the other floor to the other floor. And our saying is, if we can't move it up, we move it out. Because funds are so limited, we have to make sure that we stay focused on that supply, sustainability insight, which is the three main pillars that we look for, to cure this disease once and for all. And there's also a d-ri Federation, we share all of our information, we hold on to none of it, and we have federations around the world for that matter that we share information with because in Italy and in China, they can do the research a lot cheaper than we can do here. So a lot of times we'll test things out there, then bring it here and follow through the steps of the FDA that are set, etc. to try to get it from the bench to the bedside. Stacey Simms 9:00 It's so interesting when you kind of dial down and look at how these things work. And I know that as some people are listening, they may be thinking, well, if it's so cure focused, and it's been around that it's funded, you know, how can we don't have more progress? How can we don't have a cure? Unknown Speaker 9:14 I hate to put it in such simple terms. But Unknown Speaker 9:16 can you talk a little bit about some of the progress that has been made? Tom Karlya 9:21 Yeah, that's, you know, I said this before, that's your mouth to God's ears. That's been our hope since the beginning. And it is such a complex disease, and all the wonderful organizations out there as well as the research centers out there. This is just not an easy disease to figure out. I mean, years and years ago, when we first it would there was nobody funding research years ago for type one diabetes, and then to go out there and say, well, we're going to try to cure it. Well, as we went along, and as many other organizations that have, in their wonderful ways have funded our work and work around the world for that matter, have found out just how calm Flex this disease is years and years ago, we were actually told we were one of the first centers. And actually Dr. Kamila, recording our scientific director. He invented the machinery with a board member, Ramon Poe, who donated all of this time, they created the machinery to separate the islet cells from the pancreas when they get donated, and we give that to anybody around the world just to help them try to move it forward. But nobody knew that taking islet cells. So this is interesting, because I've been at this for 26 some odd years since my daughter was diagnosed at age two. And there was a time when people thought you will not be able to take islet cells, insulin producing islet cells and down years later became trying to re engineer stem cells and things to create insulin. There was no proof out there, that you could take islet cells and put them in another body and they would work well. They Did and I have and what's happened since that time is that as we move science forward, you know, I think we should do everything we can to try to figure out how do we make islet cells produce insulin in another person's body without being attacked? And why so many of these are immunosuppression drugs. You know, when we first started, people would say, Oh, yeah, but there are immunosuppression drugs. What people need to understand is that when it came time for the scientific studies, the quality of life of people who entered these research projects, they became patients for the clinical trials, they had no quality of life, because they could not feel going hypoglycemic. They could not feel their blood sugar going low. They couldn't drive, they couldn't hold jobs. They be talking to people they just kill over. So for a lot of these people, this first islet cell transplant became lifesavers because their quality of life was just not existed. something interesting happened when we did that. And around the world, this was done to a lot of different centers and not just at the d-ri, but we were at the forefront of it. And the interesting thing about it, even patients that went back on insulin, for the most part, not in every case, but in the majority of the cases, probably even excess of 80%. But that's just my layman's guess. They're hypoglycemic reactions went away. Even if the islet cell transplant did work, and they had to go back on insulin again, they did not suffer from the hypoglycemic episodes that they had. It has always been this great moving science forward. But the truth of the matter is, is that we will continue to work and I and I was active, I was doing other things when Caitlyn was first diagnosed. And for those who don't know the story, I was an actor for years. I was in a show in New York for for 1314 years talk about that. And we'll get to that and I've done a lot of great things, but I was on my way to a matinee performance when my beeper went off you tell people about beepers like What's that? And it just was said 911. And I went over to the phone, I can tell you right where it was, I remember to this day, I went to hold off of the of the bridge and the Lancey street in New York City. I went to a phone booth, for those who don't remember phone booths or things that had a phone in it. Right. So I called home and my wife said, Tom, I have to rush Caitlyn to the hospital. They think it's type one diabetes, and she had been sick and she had the flu. And, you know, again, it was everybody thought it was something else. And when I got to the hospital, which took me two hours, that was a whole episode in itself. I saw I looked down the hallway and I remember my wife Jill had Kaitlin's jacket was hanging from her hands. And we just looked at each other and I went in and Kaitlin had all these wires and everything attached to her. And I pushed the hair out of her face and I said, Hi honey, and she said Daddy, and she looked at everything she was attached to and she looked me square in the eye and She said, and it stuck with me. I remember it every day when I start my day. That was a promise I gave my daughter. And I became, you know, whatever. I became an advocate and constantly working at it. And then I got really, really angry because I thought my reward was 2009, my 13 year old son was also diagnosed. So I was pretty angry. And that was also four days after my dad died. So when someone tells me they had a flat tire at a supermarket that week suck, they said, Oh, no, no, I can beat that. Well, so an X and here we are, you just Stacey Simms 14:35 have your two year old daughter looked you in the eye and say daddy fix to something that there is no fix. I don't want to make you relive that moment. But when your son was diagnosed, and that was Rob is diagnosed 17 years later, the change in the diagnosis. I know it's not a fix. There's no fix yet, but what was your perspective at that time because the diagnosis had to be different and the care had to be different. Right back to Tom answering that question in just a moment. But first diabetes Connections is brought to you by Real Good Foods and there is something new from Real Good Foods. They have ice cream. Oh my gosh, real good ice cream. My whole family tried it. We have our favorites. I'll share a little bit more specifically down the road. But oh my gosh, the vanilla is delicious. That's the first one we tried right because you can't hide anything with just a vanilla. So we went right to that. I mean they have other great flavors. They have mint chocolate chip, they have chocolate, they have peanut butter chocolate chip, and we started with the vanilla and it was really good. It tastes like real ice cream because that is what it is. You can find out more at the website and preorder. It's available in select stores. As always, there's the store locator on their website, find out more just go to diabetes, connections calm and click on the Real Good Foods logo. Now, back to Tom Carl. Yeah. And he is answering my question about how different it was when his son was diagnosed with Type 117 years after his daughter. Tom Karlya 16:13 Wow, you're absolutely right. And again, the tools, I always use that phrase, the tools that our diabetes toolbox for our kids has become so amazed, we used to have to wait 90 seconds. After we put Kaitlyn at that time, we couldn't even do our fingers. We had to do her toes. So we get a blood drop on a glucometer. And then we would wait 90 seconds. See if I could help everybody understand one main point that get diagnosed today than when not only 2009. But 1992 when Kaitlin was diagnosed, that the tools we have now are so far advanced. We always say when we try to get our children to live normal lives, you literally can live as close to a normal life as you can accept and there's a huge death there is your child. Type One Diabetes. But for those who have it understand what I mean that with the technology we now have, there was no, Caitlyn was the second child on Long Island to go on an insulin pump. Wow, could you imagine people don't realize that these things were the size of backpacks when they started these. I mean, it's not, you know, like an astronauts backpack, they were huge, but they got smaller, they got better, they got quicker. And that's why research to me, that's why I will never give up hope. Somebody looked at somebody checking their blood sugar, and they said, We can do better with that. And we have, and it's the same thing with research as long as there's a research center. And for me, this is just and everybody else can find their own place where to give their time and energy, but the Diabetes Research Institute, the fact that they are focused now that's a very interesting greement to have with academia, that we are focused on curing type one diabetes, and when we do that many of the patients type two patients for an insulin We'll probably benefit from that as well. But our focus is to cure this disease. As long as there's a place like the d-ri that focused on curing this disease, then I will never give up hope. Stacey Simms 18:11 My question on that you said something very interesting. You said it's a very interesting agreement to make with academia. Do you get pushback from people who want to do research, but it's not cure focused, Tom Karlya 18:22 we get not pushback, but we get increased from any university has the right to do and the University of Miami and we have to be honest, as you know, it's such a wide range University. It's got so many different aspects to it. But when they come to us and they say, look, can we look at looking into the type two type of research? Well, we tell them to go to another part of the campus and look for it. And they do. There are places probably on us campus that will focus on complications, you know, transplants they have, you know, they have a lot of different aspects of us, because it is such a great medical campus on a lot of different ways and areas that they can go someplace But when it comes to the Diabetes Research Institute, we have an agreement with them that that's where that focus will say. And a part of that is, in essence, the Diabetes Research Institute foundation is the largest donor to the University of Miami for all the money that we give only to the institute because that's all we'll fund. It won't go anywhere else. And that's because the foundation years ago, the parents had the, the, the wherewithal to say down the line, we want to make sure that this institute stays razor focused on a cure. And that's why that agreement is so important to be in place and we love being part of the University of Miami. They've been very supportive of us. It's a great relationship. And it's been incredible because it also being part of the University of Miami. It gives it the credibility that the world needs to see that this institute is part of academia, but also has raised focus on curing a disease that is only for type one diabetes. Stacey Simms 19:58 Tom, you're handled your blog. Dave has always been diabetes dad, and I want to talk to you about being a dad for a moment if I could, you know, you've spoken many, many times in your blog. And when you speak in person about your wife, Jill, and how she took care of the kids diabetes, you said it, you know, really the responsibility mostly fell on her that sort of thing. You've given her a lot of credit. But I'm curious as you look back and your kids are grown up, and they're married, and you know, you have a different perspective. Now, what's your advice to other diabetes dads, you know, I think more men want to do more. I don't know exactly how much you did. But can we talk about being a diabetes dad for a minute and what that means? Tom Karlya 20:36 Sure. And then, and just to be clear, and this is very important part of this discussion, the responsibility did not fall on jail. And actually, when Caitlyn was first diagnosed, we sat down and talked, because I didn't want to make the decision for myself. I didn't say, Well, this is what we're going to do. So she and I sat down and I said, Look, one of us has to stay home. And it was Okay, I didn't say, Well, I'm going to work, and you're going to stay home, we discussed that. And to me, that's one of the biggest keys to parenting with diabetes is keeping that open line of communication and dialogue open. I look at now, I mean, I mean, there was a time, we almost lost everything. Because she couldn't work. I had to work. I was working three, four jobs, whatever it took to keep us moving forward. I knew two things. Income had to keep coming in. And we had to have insurance from that day forward. So everything I did was working toward that. But it came about that I would work the jobs, and she would stay home with the kids and she would work when she could if she could, and then it became we had to find times that I had to realize that this is a partnership and dealing with this disease. So I would say on the days that I could get out of here go someplace, go see a movie go out with friends, we had to try to find time for ourselves as a couple. This is a very strenuous disease and a lot of different areas. And I tell couples and parents all the time, communicate, make sure you're talking with each other, not at each other. You know, I have to tell you one of my favorite stories. I was at the children with diabetes conference in Orlando, Florida. And I usually run the dad's group when I'm there. And there was a man talking and he said, I'm divorced, and this that the other thing, and he said, and I'm here, and the man next to him said, I'm in a second family. I married my wife, and they have a child with diabetes. And it was the father of the child and the new husband of the wife at the same meeting, finding it that important to learn about diabetes. And that was one of the most touching things I ever saw. I said, I wrote to the gentleman who was newly married, I said, You're like my new hero. Unknown Speaker 22:55 Wait, wait, wait, I'm confused. So the family gets divorced. The EX is there and The new husband. Tom Karlya 23:01 That's exactly right. Wow. And, And to me, that's as powerful a statement as that could ever be made that the child has to come first. And look, divorces Can I hope never to cut through it and I hope never to have to deal with it. But sometimes it can be very bitter. But you have to remember where your child is with diabetes is the same thing when both parents go to work. And the grandparents want to be involved. I say this all the time, grandparents are the most forgotten people when it comes to the family structure and dealing with diabetes because they want to help. But a lot of times it's like mommy telling the son or daughter what to do. And that kind of, they don't get accepted in as they should. But the grandparents hurt as much as the parents do, if that could be possible, because they want to help and we have to let them and find the mechanisms for them to do so. So the answer to your question is, communication is the most important thing and for the for dads to realize To look for places where you can pick up the ball and run with it, where you can be part of your child's life, don't let your wife do it. Make yourself part of the solution. And you will be. And that's exactly what we did. And because of what I ended up doing for my life, I ended up being the go to person for what was new in technology and what was coming down the line, and you was dealing the day to day management. But that's the balance. You will get to the late Richard Rubin, who is just an incredible, incredible man in the world of psyche of diabetes. He's the one who coined the phrase, diabetes, self willfulness. And it happens to all of us. And it's all about balance. It's all about choices. Such great advice there. Stacey Simms 24:41 All right, Tom, I got to ask you, you mentioned this earlier that you were acting and you you were on these TV shows, but you were in Tony and Tina's wedding. For people who might not be from the New York area. You're from Long Island. I'm from Westchester County, which is really close by. This was not only a show This was like a party. Can you try to describe Tony and Tina's wedding? Tom Karlya 25:04 Yeah, it's what's called Point to Point improvisation. The same things would happen every night. But basically, you went to a church in New York City, and then the service would end and you would walk three blocks to the catering Hall. And that was in snow, rain, whatever it was, and it was anything that could go wrong in the wedding would go wrong. An old boyfriend shows up. The father is divorced and is going out with this very interesting woman who, but he used to go out with Tina's mother. It took the whole thing just becomes a mess. But it at the time when it first opened. It was probably the first show that was all about improvisation. Now there's many of them, but they had they been in every city just about in the country and what some of them with long runs like Chicago ran for a really long time, as well. But it was a role that was very interesting for me. I played tennis. Over the years, I ended up doing four different roles. I ended up playing Tony's Father, I was a teenager. Father in the host of the catering Hall and he was like this kind of emcee which saying, tell jokes, whatever. But it was all about the engagement of the audience. So we, the audience, were the guests of Tony and Tina, every night, and we would have to interact with them. And the key to that was to listen, because you could pick up something and then come back to that person later and bring it up. And they're like, how did they know that? And it made it all like they were part of the family. And I mean, there was a time when all these celebrities came and it was it was one of the one time it was probably one of the hottest tickets in New York. You couldn't get tickets yet to wait two months. Kim can't imagine it was the Hamilton of the day but it certainly was a great show and the audience had a wonderful, wonderful time. Unknown Speaker 26:45 Did you have fun doing that? I mean, I imagine it was it was very hard work, but it had to also be very kind of exhilarating in a way. Tom Karlya 26:52 Well, it was an active job and it's probably one of the most Yes, exhilarating and and challenging to stay in character mind. came to see the show. And I didn't talk to anything else, but my character. And so it was always fun to make sure that at any given time that we had to stay in character no matter what power failure happened once and we all had to get out of the theater. Well, we all I mean, we met this is like leaving a catering all these people all sitting around tables all around you. And we all had to stay in character when we did that. So it was a challenge. It was fun. But yes, it was a job that you had to be able to stay in every night. You had to pace yourself. I mean, there was a time we were doing eight shows a week. And that's a lot of shows. So it's like any training that you do in the acting world. you train yourself to do the role, because you tell yourself every night that people seeing the show are seeing it for the first time. Unknown Speaker 27:44 So before we let you go here, give us an update on the kids. The grown up kids now How's everybody doing? Tom Karlya 27:51 My oldest doesn't have it. TJ he's with the New York state mental health police department. Kaitlin now interesting thing about Caitlyn as I remember you Years and years ago, someone told me you really should just hope for college for your kid. And I said, What are you talking about? You mean she's not gonna make college? He said, I'm not saying that he said, it's just you have to understand how devastating this diseases but make college a goal. Well, that person didn't stay a friend clearly. So, Stacey Simms 28:17 but but that was a belief at the time people I've heard Well, it was thought that Tom Karlya 28:21 Yep, yep, yep. And I think that's one of the keys for all of us is to keep our kids so positive that they can do anything with this disease. So not only did she graduate college, not only did she graduate nursing school, but in December, she graduated with her nurse family practitioner ship, and she's now a family nurse practitioner, and she's in practice and she'll be hopefully her goal is to deal with people with type one diabetes. My youngest son is a computer guru, and he was working for a company called Best Buy. And he got tagged by their Geek Squad when he was 18. And I said, Do you like it? He said, Yeah, dad, but that's not where I'm going to stay. And I said, What do you mean? He said, My goal is to be tapped from the Magic Castle. I What's the Magic Castle? He said, it's the corporate headquarters in Minnesota. I said, Well, that's a lofty goal. He said, Well, that's my goal. Well, earlier this year, my wife and I went, saw my son's new office, at the executive row in Best Buy in that building, that they are all in and looked at his new office, because they did just that when he was 21. They tapped him on the shoulder and they bought him out there. And he now works for the corporate headquarters for Best Buy Geek Squad. Now I share that not just because of who they are. But if you have a dream, if your child has a dream, our job as parents is to do everything we can to help them fulfill their dream. That was my son's dream. She's been there now for two years in Minnesota, doing just what he always wanted to do. Stacey Simms 29:46 That's just wonderful. I mean, I'm getting kind of emotional. Actually, as you're talking about it. I think it's incredible, because you have to let them pursue what they want to let them dream. And when Type One Diabetes comes along. It's kind of easy to think to yourself, Well, maybe We should damp down the expectations. And you didn't do that for any of your kids. And your mantra has always been at least since I've known you is just don't do nothing. So for people who are listening, you don't have to, you know, be a senior vice president of the Diabetes Research Institute. You don't have to you speak all over the country like you do. But as we leave here, is that really your advice? Just do try to do something. Tom Karlya 30:26 It started with a step. If you told me back then that I'd end up where I was today. I would have told you you're crazy. Start with a step. If you're looking for something to do hang posters around your community about the warning signs for diabetes. There's a mom in texas a mom in Texas, she and I connected years ago and created get diabetes, right. org and all that is is posters that you can download and put around your community for people to know about the warning signs of type one diabetes, and we're not alone. Beyond type one does it all bunch of other people JDRF does it all People have these warning signs. It starts with you looking in the mirror saying the status quo of diabetes in my life just will not do. What can I just start asking the question, What can I do JDRF started by parents. The Diabetes Research Institute foundation started by parents, people out there doing things, podcasts out there, Stacey Simms says, gotta do something. This is my background. This is what I can do. This is what I'm going to do. It's something there's nothing so small, that cannot change a life a life around, just by starting with the first step. This disease will not do in this world, my world, or any world, and look for something you can do to change it. Tom, Unknown Speaker 31:48 thank you so much for joining me. It's been such Stacey Simms 31:50 a thrill to hear your story and to talk to you today. I really appreciate Tom Karlya 31:54 it now. Thank you and thank you for everything you continue to do. And these are the stories that people need to hear because there's a A lot of people out there who don't know that what they can do and how they can do it and, and that's what people need to just keep hearing these stories so they get, you know, there's so many people out there that is so inspired now, and professional sports and dance and drama and theater in studies in school, excelling, diabetes just won't do and just don't do nothing when it comes into your life. Unknown Speaker 32:26 You're listening to diabetes connections with Stacey Simms. Stacey Simms 32:32 You can find out more about Tom at diabetes. Connections calm is the episode homepage. Of course, I will link up information to his blog to the d-ri to everything else we talked about and there is a transcription just like there is for every episode this year. And I am working to fill in the blanks on transcriptions in the past as well, because I'm getting such a great response. I wasn't sure right? Do people want transcriptions? Is it worth the time? Let me tell you, it is totally worth it. I've been hearing So many people who maybe just don't have time to listen or prefer to read. And it's a service, I am more than happy to provide as frankly, the technology is getting better. It's still not perfect. I mean, you know, most of these transcription services do not speak diabetes. So I've had to go through and fix a few things. But I'm happy to do it. Because I think it really is enhancing everybody's experience. So thank you very much for the feedback on that. Up next, tell me something good. But first diabetes Connections is brought to you by Dexcom. You know, when you have a toddler diagnosed with type one, like I did, like Tom did, you do hear rumblings for a very long time about the teen years, but when it hit us at full force a little early, frankly, I'm so glad we had Dexcom it just helped us see and really take stock of the changes we made because Benny's insulin needs started going way up around age 11. And he's 15 now and it's almost settling down. I don't wanna get too personal, but you know, along with the hormone swings, I can't imagine managing diabetes during that time. Because we made so many changes without the Dexcom continuous glucose monitoring system, we react more quickly to highs and lows, see those trends and adjust insulin doses with advice from our endocrinologist and I know using the Dexcom g six has helped improve Benny's a one C and overall health. If your glucose alerts and readings for the G six do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions. To learn more, go to diabetes connections comm and click on the Dexcom logo. Our Tell me something good stories this week come from a Facebook group called poked parents of kids experiencing diabetes. I'm part of that group and I posted that I was looking for good news stories and oh my goodness, did they deliver so let me bring you a couple. Sarah wrote my daughter just signed to play college soccer. She is so excited to keep breaking down misconceptions about type one and sports Susan says my daughter with Type One Diabetes earned a scholarship and direct admission into a competitive nursing program. She's in her freshman year living on campus and successfully handling it all. Her goal is to be a diabetes educator. And then Beth wrote in this kiddo, Frankie, who has lived more of her life post type one is rocking control IQ the new software from tandem best says slightly off label since she's barely six and definitely under 55 pounds and just got invited to present on a panel at JDRF type one nation in Denver. That was a couple of weeks ago before everything was canceled. But I asked Beth to ask Frankie Yes. And she was on a panel. I had some questions for her. And Beth was happy to oblige. And Frankie answered my questions. So my first question was, what is one thing she would tell a kid her age was just diagnosed with type one, and Frankie said, I would tell them it's okay. Don't be afraid and you can still do everything you want. And then I said What's something she does to feel better when she has a hard day, and Frankie responded, I tell my mom and dad when I've had a bad day, then we usually do something special together to make me feel better. Again, Frankie is six years old, and she was diagnosed at two. But thank you so much for sending that. And thanks to all the parents for responding to my prompt in the group, I really appreciate it. If you have a Tell me something good story you just want to share about your kid or yourself. It can be everything that you heard, it could be a diversity, just you know, with everything that's going on. Let's have some good news in our community. I love it. It's my favorite part of the show each week. I really would love to hear from you. Before I let you go, just a quick note on everything that's going on. I mentioned at the beginning of the show that I was going to talk a little bit about local groups. And all I really want to say about that is if you have a local Facebook group, as many of us do, you know, just check in on each If you have a local text chain or WhatsApp or things like that, maybe your kids have a diabetes camp, I don't even know what kids are using. I was gonna say whatsapp group, but you know, you know what the kids are on tik tok or whatever. Check in with their camp community or other people you may know through your local JDRF chapter. If you're an adult with an adult group, please check in on each other. If you have nobody. If you're concerned, you're by yourself, you're worried we're here, right? I don't know what we can do other than say, we can help. I don't want to make empty promises. But I do think it's really important that we get social connection during this scary time, which really can lead to in real life help. I know that in my community, when somebody needs insulin, we get it to them. When somebody needs a Dexcom sensor. We get it to them if we can. The diabetes community for a very long time has already taken care of the people within it. And I hope that that spirit extends to the whole community during the scare both At the very least, if there are people in your diabetes community that you can help, let's find a way to do so, you know, if you're halfway across the country, there are so many ways to connect, that it's really not that hard to find somebody nearby. So hey, diabetes connections, listeners, that's my challenge for you over these next couple of weeks. I know most of you are already doing it. But if you've listened this far, if you're hearing my voice at this point, check in on your diabetes friends, check in on your community, and let's see what we can do to help each other. We may never need the help, but it is nice to know it's there. I think that goes an awfully long way. All right. Again, I don't know what I'm doing in terms of scheduling for the next couple of weeks. I'm not going to do lots and lots of coronavirus episodes. I don't know that they're needed. I think I will check in if I can with some endocrinologists over the next couple of weeks. Maybe we'll do some Facebook Live. You tell me what you want to hear. But in the meantime, right now I am planning to go back to the regularly scheduled diabetes connections episodes. I have a Few that I've recorded already a few interviews, and I think we'll just put those out as planned. And we will go from there. Thanks as always to by editor john Deakins from audio editing solutions. Thank you so much for listening and for letting me into your lives right now. I really appreciate it. I'm Stacey Simms, and I'll see you back here soon. Until then, be kind to yourself. Unknown Speaker 39:28 Diabetes Connections is a production of Stacey Simms media. All rights reserved. All rounds avenged Transcribed by https://otter.ai
A brief update on COVID-19 and type 1 diabetes recorded March 11, 2020. Stacey talks to Dr. Satish Garg, an endocrinologist at the Barbara Davis Center for Diabetes. Dr. Garg talks about what we know right now, what he's telling patients and advice for anyone with T1D. Find out more about Coronavirus: CDC Info JDRF Beyond Type 1 DiaTribe ----- Check out Stacey's new book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription: Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes. By Real Good Foods real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom Announcer 0:20 this is Diabetes Connections with Stacey Simms. Stacey Simms 0:26 Welcome back to another episode of the podcast really glad to have you along. And once again, we are doing a short episode on Coronavirus and type one diabetes. I'm your host Stacey Simms. And you know after we put out an episode at the end of February about this, I heard from a lot of people who asked me to keep updates coming. Now as I have said before podcasting isn't really the best medium for breaking news. You can listen to this episode immediately as it comes out. You could be listening to it weeks or months years down the line. But I do think we can use the podcast here to get some good information out. So in the limited way that we can, that's what I'm trying to do. This episode is going to be on the shorter side, maybe 15 minutes of the interview with an endocrinologist just sort of talking about where we are right now and answering some specific questions from listeners. We will have a regular Diabetes Connections, interview and show next week. I'm going to come back after the interview and I'll talk a little bit more about the show going forward. I am recording this on March 11. The same day the interview with Dr. Satish Garg was recorded, obviously, the information may change. That's why I'm telling you the date. Please make sure you check the links in the show notes. They are on the episode homepage, or in the show notes. If you're listening on an app. It's kind of hard to find sometimes, but most podcast apps will have a place that says details or more information and that Where I'm putting the updated links, the ones that will automatically update when it comes to the coronavirus. And one more thing, you're going to hear Dr. Garg mentioned people with type one diabetes as having compromised immune systems. I did press him on this off the air and he says he uses that term to talk about people who have an autoimmune disorder like Type One Diabetes because he says, once you have one autoimmune disease, you're likely to get more like celiac disease or Addison's disease or other auto immune issues. He said, and you will hear him say this, it does not mean that people with type one diabetes are more likely to get sick from viruses like the flu, or COVID 19. With all due respect, I think it was a confusing way to talk about autoimmune conditions. And if you've listened to the show, a compromised immune system is not how anybody has talked about it before. So I did think that was worth pointing out to you. All right here is my interview. It is with Dr. Satish Garg of the Barbara Davis Center for Diabetes. Dr. Garg, thank you so much for spending some time with me. I know you're not only seeing patients but you're trying to reassure patients that I'm sure are calling in about the situation right now. how busy is your office at the moment? Are you fielding a lot of worried calls? Dr. Satish Garg 3:24 Very many. I mean, my staff is swamped and getting calls and wanting us to write letters because they have Type One Diabetes should they go to work? And not only me and my emails are also we have nine different providers on the adult side here at the Barbara Davis center for diabetes and so many educators and all of them are swamped with these emails and text messages they're getting from patients. Stacey Simms 3:52 So what are you telling patients who are asking if they should go into work? Dr. Satish Garg 3:56 We primarily tell them to go on to these websites. JDRF has created a nice website giving guidelines for people with type one diabetes and also tell them to go on our website we posted some through University of Colorado and to coronavirus.gov and that is to the CDC. And if they have some degree of comorbidities, for example, if they are older, older than, you know, 60 or 65, and they have heart disease, hypertension, obviously they have diabetes, they may want to avoid places where there are larger crowds, or they may want to avoid unnecessarily getting in contact with somebody, for example, going for rallies and things like that people need to avoid so general precautions nothing specific to people with type one diabetes, except if they have comorbidities. We do recommend people to get the flu shot but they are specifically not at high risk of getting Any of these infections if their glucose control is good. But their immune system is compromised, because they have autoimmunity, it does get confusing. So the bottom line is that people have tried to maintain their glucose control as best they can to avoid hyperglycemia and avoid wide glucose excursions. And those are the general precautions. And of course, if their glucose control is not good, then they might be more prone to get bacterial infections and other infections, but their immune system is not normal, quote, unquote, on a healthy individual like you and I, who don't have type one diabetes, our immune system is different than the ones with Type One Diabetes. So it makes sense. Stacey Simms 5:45 Yes, absolutely. I totally understand where you're coming from with that. But bottom line, good glucose control, you are not more likely to get COVID 19 if you have type one diabetes. You said right before we started taping that you had just seen an 84 year old patient with type one, what's your advice for that person? Dr. Satish Garg 6:05 So we have more than about 400 patients who are older than 60-65 who have type majority of them have type one diabetes and some have type two, but they are requiring insulin therapy. Anybody who is in that age group, I always advise them especially many of them have comorbidities hypertension, hypercholesterolemia, heart disease. So those individuals I tell them specifically avoid, I'm not asking them to quarantine. Of course, if they have dry cough, and they start running fever, they should self quarantine, do advise them not to travel because right now, we don't know how the aircraft and what have you are being cleaned. Avoid large crowds. So just the general precautions that CDC advises that's what we are recommending to go People go they are definitely at high risk, one because of the age, second type one diabetes. And third, they have majority of them have some degree of comorbidities. Stacey Simms 7:11 You know, one of the questions that we see a lot is, how can I prepare to be self quarantined? You know, a person with diabetes or household that has a person with type one diabetes in it. What are you recommending people keep on hand for two weeks, 30 days? Dr. Satish Garg 7:28 Well, I think there might have been an overreaction to that people are slightly overreacting. Oh my God, we might suddenly be locked down, like Italy's logged on, like part of China was locked down. I hope that doesn't happen. So people are going on ordering insulin, masks and what have you. We don't anticipate that for example, in the state of Colorado, we only had about 15 to 20 cases now having a tip that they haven't tested a whole lot once you get a lot of people tested that One will really know the hard numbers right now, unfortunately, we do not have the hard numbers to how many people have been really affected by this disease. But we just give general advice to these individual. Stacey Simms 8:15 You mentioned people trying to stock up on insulin. You know, one of the problems is a lot of insurance companies will not pay for that much, right, people are trying to get the prescriptions renewed. Are you running into that same thing, Dr. Satish Garg 8:26 most of our patients would have about three months of supply, and if some of the insurance companies won't give them luckily for us at the Barbara Davis center, we have so many samples, we just give them one or two extra pens or vials so that they don't have to worry about it. Again, I'm hoping that this won't be a major event. Let's hope as the temperature turns around, that this virus will be just like what was Spanish Flu back in 1918. That will go through the cycle, but we don't know that a lot of people most of us Do not know the exact cause of this particular virus. Stacey Simms 9:03 I will defer to you as the medical professional, but you're hoping it's like the Spanish Flu of 1918? That killed an awful lot of people. Dr. Satish Garg 9:11 Well, but the Times have changed. You're right, that killed millions of people. No, we're not seeing anywhere close to that. Because what healthcare was 1918 100 years later is night and day. For example, back 40 years ago, I used to tell all my type ones, you're not going to live beyond 35 to 40 years of age. Today, I tell all of them, you're going to reach 80-90 years of age, I'm not aiming at 100. But you're going to reach nearly full potential of your life expectancy. So times have changed healthcare quality and what is available had changed night and day. So I think it'll be unfair to say that we're going to see those sort of mortality rates, but we saw back in 1918 because of the health care standards that are changed dramatically. Stacey Simms 10:01 Um, you know, another listener of mine, I'm reading you some questions that I took from my listeners. And one of them had asked that there are some studies that people with type one have worse outcomes after major events like heart attacks, because of the autoimmune issues that people with type one already have. So she's concerned about that with Corona virus. Is there any indication? I know it's still early that one of the reasons that it kills people is because it does affect the immune system. Dr. Satish Garg 10:32 So here's the problem, Stacy with that we do not have data to say that affect anything right now we have so few deaths in the US or even worldwide, and leave alone people with type one diabetes now convert to the best of my knowledge. None of the patients with type one diabetes has died. But again, that may be what I know of the numbers. Again, we do not have any for example here, the Barbara Davis center. We don't have any patient with the corona virus, and they have a significant number just like any other clinic of comorbidities. But we don't have any such problem right now. We are telling people in general to avoid travel for example, please don't be on a cruise ship that is a living source of petri dish that you're going to be definitely there is even 1% chance that you can avoid that you should avoid going on a cruise ship. Now, regarding other travel, the University of Colorado has already banned all our personal and domestic and international travel. So some common sense is to be taken into con in the sense if you really don't have to travel anywhere. avoid that. That this thing's bad. Through, hopefully just like a flu virus, and over time, it will all go away, we'll hopefully find a vaccine. And this will be a thing of the past. But right now, there is too much unknown, especially in patients with type one diabetes. Stacey Simms 12:14 All right, so I have a question for you from Julia, one of my listeners who is actually a flight attendant, so she says, I have no one to ask this question. I don't know if you'll be able to answer it, but we'll give it a try. She says I fly internationally to London. I do everything I should to avoid getting it but I have accepted is likely I will get COVID 19. When this happens, and I'm told to self quarantine, unless it's very life threatening. She says, What should she do for herself in a mild case scenario? So here's the question a person with type one who does get this and is not having a life threatening incident of it. What should they do? Dr. Satish Garg 12:54 I would do self quarantine. Make sure you have enough insulin, fluids and whatever else necessities of day to day life you need. Yeah, they should be no different course to the best of our knowledge. Again, as you asked me earlier, the effect on diabetes, But again, we have no data that anybody with type one diabetes who is well controlled, behave any differently than the ones who don't have type one diabetes. So, General precautions, you got mild cough, small fever, self quarantine, and you should do fine, just like you would do it for a regular flu Stacey Simms 13:33 and your regular sick day plan that everybody should have their endocrinologist in ketones, that sort of thing. Dr. Satish Garg 13:39 Yeah. Great. Stacey Simms 13:40 You know, we've said well controlled several times, and I know every one is different. And I almost hate to ask this question, having a child with type one for 13 years. So I think I know the answer, but I'll ask it anyway. When you mean well controlled, is there a number again, knowing that everybody's different? Is it an A one C of 7.5? Is it a Is it an in range? The time in range number, you know, when do we start worrying about well controlled type one diabetes, we know an A1C of 14 isn't going to cut it. Dr. Satish Garg 14:08 So there are many ways here, as you rightly said, for example, somebody at the age of 70 or 80, I probably don't want their A1Cs to be in the 7s, because they have lived their life. They don't have any significant comorbidities. Why don't you just take it easy and avoid the risk of hyperglycemia. Someday in the teenagers 30s and 40s, you probably want to me one sees around seven, with a time in range of 65 to 70%. That's our goal. 70% of our patients use some sort of a continuous glucose monitor, which is what we recommend and that is true for everybody who is at risk of getting Corona virus. That is one advice I would definitely give them that they should go on a continuous glucose monitor if they don't have one just because when you're sick, your blood sugars are To be higher that you need to be rather than having to finger prick every five minutes. Why don't you have a continuous glucose monitor, preferably a Dexcom g six because that is far more accurate as compared to the average Libra, which is cheaper. However most insurance companies pay and thus you can continuously be monitored and adjust your insulin dose accordingly. Rather than having to prick yourself 10 times a day. That's the only advice I would make change, especially to the flight attendant. Also, if she's not using a CGM, I would strongly recommend that to use as one. Stacey Simms 15:36 It's interesting when you mentioned cost. I did get a question and I know it varies state to state. I know you're a doctor, not an insurance expert. But do you know when a governor declares a state of emergency, you know, in North Carolina, our governor has recently done that it is mostly about federal funding. It's not about emergencies in the street. I think most people recognize that by now. Is there any leeway for people To get extra supplies to be able to pay for things at the pharmacy, like a Dexcom? Dr. Satish Garg 16:09 Yeah. I mean, I wish I had an answer for that. The only thing I would say is, if that scenario happens, I'm sure we can get a special prior authorization. This is a scenario that nobody has seen or confronted with. So we don't know answers to many of the questions you're asking. However, if one is facing that situation, we could definitely look into it and get a prior authorization for that individual. Stacey Simms 16:36 Has there been any information coming out of you know, China or Italy or elsewhere, where they've been dealing with this for longer about people with diabetes and about how it reacts with COVID 19. I know when we say diabetes, that they lump everybody in there as one part to separate it, but have you been able to parse anything Dr. Satish Garg 16:55 and that's what I was going to tell you next one in China. According to To quote unquote, what they say, Type One Diabetes is rare. I don't know to what extent is that rare, they just don't have the information on that attack. Secondly, they lump all diabetes, type one, type two, type two, who has a lot more comorbidity is a very different ballgame falls into those individuals who are more vulnerable and who are elderly. So I don't think those criteria may fit. So we don't have any data to that effect, specifically, type one diabetes. Stacey Simms 17:30 What are you all doing in your office? As you said, You're seeing patients, you're they're talking to me today? What are you doing to stay safe? Dr. Satish Garg 17:38 Just the general precautions, asked my staff to make sure they clean all the clinic rooms, we have like 44 exam rooms, clean all the exam rooms, surfaces and whatnot. And again, we've been lucky. None of our patients have yet been at least reported to have any of these coronavirus to so far be unlucky but who knows when you Going to be confronted, I'm sure you must have heard there was a meeting in Boston, where there were 200 biotech people, and I believe 17 or 20 of them have come down with the corona virus. So that is obviously put issue, whether we should have these large gatherings at all. And I would just lastly say to all patients with type one diabetes, just take care of your diabetes, the usual way, it's not a bad idea to have some extra supplies in case like what they have done in New Rochelle in New York area where they're calling it containment, basically, allowing less movement in the community. So it's not a bad idea, do a few extra days worth of the supplies but take care of your diabetes, the usual way as best as possible. I strongly recommend using a continuous glucose monitor does if you were to be infected, you have continuous access to the data. just you glucose management much better. But otherwise there is lack of data in specifically to type one diabetes and there is no different we will behave just like as a non diabetic individual. Stacey Simms 19:13 Well, thank you so much for spending some time with me. I appreciate it very much. And we'll check back. If any of the information changes or frankly, we get more of it. Right. We'll get it out there. But thank you so much. Unknown Speaker 19:29 You're listening to Diabetes Connections with Stacey Simms. Stacey Simms 19:34 As Dr. Garg mentioned, there is a lot that we as recording on March 11 still do not know especially any kind of breakout information when it comes to type one diabetes. So keep in mind as of right now, when you're hearing people talk about diabetes, they're lumping everybody with every type of diabetes together. You will find more information in the episode homepage including The links that Dr. Guard mentioned at the very beginning of that interview. Alright, so here's the situation on the show going forward. And you know, this may just be for this next week, I have no idea. Like I just said, there's a lot of uncertainty here. But I am not going to make the show all about COVID 19. At least not right now. In the Facebook group at Diabetes Connections, the group, I took a poll, and the vast majority of listeners wanted regular podcast programming with COVID 19 updates as needed. Now, I do come from a news background as you probably remember. So I admit, it's just a little hard for me to pull myself back from breaking news mode. I mean, I'm thinking you know, wall to wall coverage. This is how we would do it. This is how you're seeing media do it, but I hear you, and I'm here for you and to do what you as listeners want to hear. Because I'm getting this episode out early, the next one may not air Tuesday, our episodes usually drop on Tuesdays. If you subscribe to the show, that is probably your best bet. It'll just come to whatever app you use. And if you follow on social media, of course, I will post there, too. So please check back in. And let me know what you're thinking and what you want to hear. And by the way, maybe I should have said this upfront. If I sound a little bit different, it's because I have moved my office. And frankly, I wasn't really ready to record yet, but we moved this up so I don't have everything in its perfect place. Hopefully it sounds just fine. But if it's a little different, that is why All right, thank you so much, john, you can as my editor for rolling with these changes and being able to get these episodes out. I very much appreciated. Thank you for listening. And please check back into the Facebook group, social media or wherever you listen for the next episode. I'll see you back here then. Unknown Speaker 21:52 Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged Transcribed by https://otter.ai
Lilly Diabetes announced they were getting into the pump and pen business almost two years ago. How’s it going? We get an update from Marie Schiller, Vice President of Product Development for Connected Care and Insulins at Eli Lilly – Connected Care is what they’re calling this platform of pumps and pens – now to be integrated with Dexcom. Check out Stacey's new book: The World's Worst Diabetes Mom! We’ll also have a bit of an update on some other pump companies’ plans for the near future.. bolus from your phone?! In TMSG a big fish, a hula hoop winner and a chance meeting over a foot? Join the Diabetes Connections Facebook Group! This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcript: Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Real Good Foods, real food, you feel good about eating, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:21 This is diabetes connections with Stacey Simms. Stacey Simms 0:27 This week, Eli Lilly announced they were getting into the pump and pen business almost two years ago. How's it going? We get an update. And of course I asked about price and access. Marie Schiller 0:38 Look, we're not here for the sake of having this innovation sit on a shelf somewhere, not why I'm here. It's not why others are here. And so it is really important for us to be laser focused on how people act. So Stacey Simms 0:53 that's Marie Schiller, Vice President of Product Development for connected care and insulins at Lilly We'll also have a bit of an update on some other pump companies plans for the near future. Well, let's sing from your phone in Tell me something good a big fish, a hula hoop winner, and a chance meeting over a foot. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I am your host Stacey Simms, so glad to have you along for another week. As always, we aim to educate and inspire by sharing stories of connection. My son was diagnosed 13 years ago with Type One Diabetes. My husband lives with type two. I do not have diabetes, but I have a background in broadcasting. And that's how you get the podcast. I'm excited to catch up with Lilly. I know a lot of people don't want to hear anything from them until they address the price of insulin. And I do understand that I want to be sensitive to that. And I definitely asked Marie all about that. Even though she has nothing to do with the price of insulin but she doesn't work at Lilly and this system. I can't be really separated from that, let's be honest. But I also think I have a responsibility to share what's going on in terms of diabetes technology, and Lilly plans to be a big player in this space. So that's what the interview is all about. We'll be talking about their system. We'll be talking about their partnership with Dexcom and other things as they move forward. Before we get to that, I want to thank Kerri Sparling and the folks at children with diabetes. We replayed the interview that Kerri did with me this was on their YouTube channel and then last week in the kind of the mini episode although it wasn't really a mini we replayed the audio from that interview. It's always a little weird for me to be on the other side of the microphone, but it's always a lot of fun to I bring it up not to hammer on the interview again, if you wanted to see it or listen, you know, you know where to find it and I will link it up in this episode. But because they are doing a contest. The contest is open until March 20. And to enter you do have to email them so I will link that As well, it's over on the children with diabetes a website. But all of these links will be in the episode homepage. They're giving away a paperback of the world's worst diabetes mom and the audio version. So I'd love for you to go and enter and find out more on their websites. Speaking of the book, I am having such a blast on the book tour that I'm doing this year. You know, we'll see how it goes. Obviously there are some health scares out there right now. And I'm not sure that all the events are going to stay as scheduled for right now. They're all on the books that's on the website as well. And if you're interested in the world's worst diabetes mom, that's an easy place to find out more but I have to share with you that I got a great note from a woman in Australia who listens to the show and you know, has read my book she bought it you can get it on Amazon really in so many countries now print on demand is absolutely amazing. And she got it in Australia and she reached out to me because her local group wants to do a bulk order. So we are doing that. And if you have a situation like that where you would like a little large number of books for your group. please reach out to me directly. You don't have to just buy it on Amazon for the full retail price. I am happy to work with you. My publisher has given me some ways to do this. That really makes sense. It's an amazing thing to think about people all over the world reading the world's worst diabetes mom. It didn't say America's worst diabetes mom. So I guess I have to stand by that now. All right. We will have the interview with Marie Shiller from Lilly coming up in just a moment. But first let me tell you about Real Good Foods Diabetes Connections is brought to you by them. Have you tried their cauliflower crust Margarita pizza. They have a full size and a personal size as well. So yummy. It is low carb high protein real simple ingredients. And you know you gotta be careful because some cauliflower crust pizzas are made with corn starch. You know rice flowers, processed grains. And if you're looking for something that is 100% grain free and gluten free, this is what you're looking for. I love how Real Good Foods keeps creating Eating new products, they keep coming out with new yummy foods for us. It's the kind of thing where you as soon as you don't feel like cooking, sometimes you want the convenience. And when you go for convenience, you really don't want to sacrifice nutrition, right? I mean, you don't want to just pull out some junk food. I love Real Good Foods, it tastes terrific. And the people behind them are solid. They get involved in our community. They listen to what we have to say. It's really nice, find out more, go to diabetes, connections comm and click on the Real Good Foods logo. My guest this week is Marie Schiller Vice President of Product Development for connected care and insolence at Lilly. Two years ago, I was part of a group of writers and reporters from the diabetes community invited to Cambridge, Massachusetts, to take a look at Lilly's entrance into the pump and pen market to give feedback on those plans and to hear from their partners. We did an episode back then and I'll link up what I and others wrote at the time. No pictures still of what they show. Very briefly that day, they showed us kind of the prototype, but it is a tiny pump. It's kind of like a fat little disc. It's much smaller than an omni pod pod. It's maybe about the size of the tee sport that tandem is coming out with. I'm actually going to talk more about that after this interview a pump update from tandem some news from Omni pod. We'll get to that after this interview, but I'll put up some photos of the T sport, but this is thinner than that the Lilly pump is just a small thin disc. It is tubed. So the idea is that you can stick it to your body or use longer tubing and put it in your pocket. We do talk about that. It'll fit in the palm of your hand very easily. Of course we do talk about the price of insulin, and what that means for access of anything coming from Philly. So here's my interview with Marie Schiller. Marie thanks for talking to me. I'm excited to catch up. It's been about almost two years since we've MIT in Cambridge, thanks for coming on the show. Marie Schiller 7:02 Thanks for having me. I'm excited to be back. Stacey Simms 7:05 All right, so give us the update. I know we're going to talk about the partnership with Dexcom and some other things that Lilly is working on. But when we last left this episode, the last time we talked at least in person, you over talking about the device that Lilly had been working on, can you give us an update on that Marie Schiller 7:25 I can and maybe to be helpful Stacy just to remind the audience of what we've been working on. So Lilly has a personalized diabetes management system that is incorporating inform delivery devices, software and analytics. And obviously that will be combined with glucose data and other contextual information in order to hopefully to improve diabetes management. We have two parts of that system. So we obviously have a pen based platform where we'll be using our refill disposable insulin pen, with data coming in from glucose monitoring devices and be able to combine that with different elements of care in that platform. And then the pump based platform, which would be a hybrid closed loop system, integrating the the pump itself in with a continuous glucose monitoring and an algorithm as well. So that's the journey we started on. I think we were we had not just kicked off the program when we last talked a couple years ago, but it was certainly early in the development program. It's been a frankly, an awesome couple of years is advancing both of those areas we had started I know when we last talked, but with the development agreement with Dexcom, which we have continued to advance our relationship with Dexcom and now have entered into a global commercialization agreement with them. We continued our clinical trials with the pump based system we'll be talking about Some of the first clinical data will be shared this coming February at the the conference in Madrid at TCU. And on the connected pen side we have, so we secured a supplemental drug approval for the pen that will be compatible with the personalized diabetes management system. And we're in the midst of working with the FDA on the other components of the system that we will need to bring forward and launch the entirety of that integrated solution. Stacey Simms 9:35 So there's a lot of moving parts, there are a lot of different things going on. You mentioned the clinical trials, and let's kind of take this step by step. I'm sure you can share the information ahead of the release. But what were you looking for this was for the pump system. Was this a safety trial? Was this an outcome trial? Can you share any information Marie Schiller 9:55 for you know, I won't go into any details that we will be sharing at the conference, but As has been seen with other products going through on that hybrid closed loop system, we are focused on showing that the system is functioning accurately. So we are looking at that first stage looking at different you know, stress situations with the system making sure the system is responding as we would expect it to respond. And obviously as part of that is the safety of the system. Stacey Simms 10:27 So, as we're talking about this system, what's so intriguing about it to me is that it is a pump, but it acts more like a pod. At least it did when I last saw it or I saw a mock up of it even so is it still that way it's very teeny tiny, but it it acts as a tube pump with a very small tube that goes into a traditional inset Is that still the hardware? Marie Schiller 10:47 It is so we what we like to call it is that is a hybrid system meeting on the days that you want to carry it and put it in your pocket or wherever is your choice of carrying it. You could use a standard length infusion set or a long infusion set, whatever your preference, but on days that you wanted to wear it, and adhere it to your body, you could do that. And so it would still work with a standard catheter infusion set, but you would obviously be using a shorter tube in that instance, if you choose to wear it on those days. Stacey Simms 11:24 You know, it's funny, Marie, I've I didn't ask this when I first saw it two years ago, and I keep thinking about it, because now tandem has a I don't know where they are in their development stage. They have the T sport which sounds very similar that they're hoping to come out with. How do you actually were these tubes, tiny tubes, pumps, the hybrid pumps on the body? Did they just kind of dangle from the tube? Do you stick them to your skin? Does it work? Marie Schiller 11:47 Yeah, I can't comment on tandem. It's a great question though. Stacey, you know, obviously with our so there's an adhesive component where you are wearing the pump. It's not obviously on the infusion set right? But ours is where you would be adhering to the pump itself. Stacey Simms 12:04 And my frustration was I thought you're gonna say I can't tell you anything. But that's great. There's like a sticky on the pump and it sticks to your skin. does it stick to the body? Like a? Is it like a Dexcom? sticky? Or is it like the ever since which is more like what I call a color forms? Remember those color forms? You could take them on and off and on and off? Is it more like that? Or is it once it's stuck to your skin? Then you kinda have to pry it off. Marie Schiller 12:34 Yeah, I may, at this point, just pull back a little bit because I think I may be going down. I may be going down the rabbit hole as if I'm trying. I feel like I'm going to be playing a game of charades as I try to walk you through how the system works. And it may be more confusing than helpful. So yeah, as I mentioned that you have the ability to wear it and there's an adhesive system and we'll leave it at that. Stacey Simms 12:59 All right. But it's very interesting. So then my next question is, do you know if Lilly is going to be developing new infusion sets? And I asked this because I've shared for years and years, and I'm not the only one, that I really think that the traditional infusion sets are the weak link of any pump. They're just not great. And I'm always hoping that somebody is going to come up with a better one. Any chance, this is part of your plan? Marie Schiller 13:24 as we've talked about, look, we are looking at all components of the system. Right. And so we are starting with our core system, we're looking at all aspects of the system. I would say, you know, it's hard for me to say yes or no, on that side. I think we're looking at the need in the marketplace. Right. I think on that infusion set side. I'd be curious to sort of hear your experience with that. I think in in some of the research we've seen, it's different sort of aspects where people would say they'd like improvement. Clearly. Extended wear is something that we're hearing a lot I know jdrf and others Groups are focused on that. But what areas are high on your list Stacey Simms 14:03 that they work better, that that you can push more insulin through them that they don't get kinked and they don't get occluded. And they don't need to know that they're, they're not as damaging to the skin that they're not as painful that I feel I could go on and on. But truly, I really think they're the weak link of pumping and you know that they even what was the one from BD for a while like it had a better flow, it didn't just float the bottom of the canula even to be able to rotate it there was one you used to be able to spin you know, that would go with that would turn you know, there's there's so much so sure, I'll be in a focus group anytime or recall me. Marie Schiller 14:38 I'm taking furious notes here to make sure I get all of this feedback because this is exactly what we need to hear, you know, and exactly what we're excited about. I think we just continue to feel that there are so much room for improvement on these systems. Albeit we've made a ton of progress today. But these are all of the nuances right then each of us I deal with every day and why, you know, the more innovation the better and space where we can continue to look at all of these elements and make progress. Stacey Simms 15:09 So let's talk about the pen system too, because that's very useful and very fascinating. The pen is, as you had already said, It is not just an insulin pen, it is part of a connected system. Can you talk a little bit about what that means? We've mentioned Dexcom. already. I assume you use your phone. You can see where you've been it recommends dosing, that kind of thing. Right back to my talk with Marie but first One Drop is diabetes management for the 21st century. One Drop was designed by people with diabetes for people with diabetes. One Drops glucose meter looks nothing like a medical device. It is sleek, compact, and seamlessly integrates with the award winning One Drop mobile app, sync all your other health apps to One Drop to keep track of the big picture and easily see health trends. And with a One Drop subscription you get unlimited test strips. lancets delivered right to your door. Every One Drop plan also includes access to your own certified diabetes coach have questions but don't feel like waiting for your next doctor visit your personal coach is always there to help go to diabetes connections calm and click on the One Drop logo to learn more. Now back to Marie answering my question on what a connected system means and whether the pins help keep track of dosing as we expect. Marie Schiller 16:28 It does so as we mentioned, it's based on the the quick pen platform is is a core component of it. So if you look at the quick pen platform that we offer in forums and we have our current basic lar influence and humor log both in the half unit one unit and two units, and then we have our ultra rapid insulin that's under review today. So as in and I don't know what's your son ever on 10 before you move to pump, Stacey Simms 16:58 he was actually uncertain Because the dosing was so teeny tiny, and they didn't even have half units, but he was on quarter units. But we have since we use pens a lot, because it's a backup for him. If he gets to fly and feels like his infusion set isn't working, he'll take a shot. And he is also a little unusual in that we use. We use a long acting shot with the pump. So he does use a pen every day. Marie Schiller 17:25 Okay, well, then you're familiar with it. And I can share with you that I was a pumper for years. And now I'm back to two shots, as we all sort of go through those journeys, but what I was going to describe is when you're taking those informs, especially as you know, you're taking the long acting in the short acting. There are just some basic elements that we still don't have today, right? You're running out the door, you're trying to get your son to school or I'm trying to get to work that I did I just take that shot or not again, remember right and just some of the most the simplest aspects of being able to be like up there. If I took that dose, right, and being able to have that check in place, but there are, you know, as you move down that level of sophistication, most people on informer fire some level of glucose testing, whether that is blood glucose monitoring, or as we're doing with the continuous glucose monitors. So the idea is, is that you would have the informed data from the pen, you would have your glucose data, whether that's blood glucose or CGM data, and you would take that in integrate them into this diabetes management system that depending on what you want, is how you would interact with that system. So some would have a preference of saying, you know, when I'm doing okay, or my regimen maybe easier, I don't need as much variation. So, for me, it's a place that I can capture that data and not have to go to different places to get that data for others having some different elements of support in that system. will be beneficial, right? If you think about things on the Faisal influence side for people with type two diabetes faisel, type tration as you get started on the insulin, or maybe after I'm on insulin for a couple years, how do I make sure I'm optimizing? Right? You can go through sort of that journey and see all of these different places where how we can do better than we're doing today. And I'm honing in on the glucose data and the informed data. So we all know I sometimes say life gets in the way right exercise and food you know, all those things that are pretty standard, but for a lot of us can make the road pretty bumpy as we're out there. So you know, over time being able to get the system smarter and smarter with that exercise data and then learning system. So, you know, we all talk about the algorithms that are out today are very much rule based systems right if my glucose is going up by default Like take this action and then be informed is delivered in the future. It may be well for Marie, her level is going up at x rate. And that's, that's not good for Marie versus for Stacey, that might be okay. Because I've trended back and looked at that data and say, you know, we're going to predict that she won't get to an elevated level as an example. Right. So if you start thinking about the personalization of these algorithms over time, it will not be day one, as we all know, it's going to take a lot more research and beta for us to be able to continue to get to that ideal state. Stacey Simms 20:41 So I'm trying to read between the lines. So the plan sounds like it is to launch with a more let's call it a more static algorithm. Like we just started using control IQ from tandem which is a hybrid closed loop software system. It is a great system for us so far, but it doesn't learn anything. It's probably If This Then That, but it doesn't learn my size. Okay, it's not personalized. So I assuming you're kind of saying that Lilly will launch in a similar way, but the idea would be to eventually get to a learning algorithm. Marie Schiller 21:11 Yes, I think that's a fair statement. Stacey Simms 21:14 All right. So let's talk about the announcement that you're gonna be working with Dexcom. Just if you could spend a minute talking about what that means. It's not exclusive as I read the release that y'all sent over. So it sounds pretty interesting. Let's start with what it means first to work with Dexcom are they making? Sometimes there's, I hear special transmitters for certain things, certain software for certain things. Is this a Lilly Dexcom? Original? Marie Schiller 21:39 no meaning we are basing it off of the transmitter that Dexcom has. So we will be compatible with the G six and we'll continue to work with Dexcom in our development arrangement as they continue to iterate and we continue to iterate to make sure we've got access to each other's latest technologies right because the last thing any of us want to do in these collaborations is to be behind in generation integration, right? I mean, that's what was happening and some of the first generation systems, right, you got people still on, I think it was what g4, and they'd want to be moving to the G six, and there was no way to do those updates, or the G five. So we've established our development, work with them and ability to make sure that we can continue to be running in parallel, as each of our platforms evolve over time. So it will be based on their latest transmitter based on our latest pump in our latest pen, and be able to integrate the the CGM data from Dexcom system into the diabetes management system, where some of the functionality that I talked about before could be available. Stacey Simms 22:53 So I'm always trying to read between the lines You'll have to forgive me but when I see a press release that says non exclusive, I'm always thinking, you know I don't know of too many, or any pump systems. Gosh, it's so funny to say that Marie, because there's really only a couple in the US. But I don't know if I hear we hear a lot about interoperability, but it isn't here. Yeah. So my question, I guess, is when I see now exclusive, I'm thinking, Okay, are you do you have an eye to working with other CGM companies? And is that practical in the short term? When we all know FDA approvals, things like that, you really kind of have to stick with one system, at least so far, to get it through? Marie Schiller 23:29 Yeah, you know, it's an interesting way you sort of posed the question, I think, let me say big picture and then sort of dive down to where we are right now. You know, at the end of the day, we believe having access to sort of the latest and greatest technologies is really important, right. I mentioned even with dex comm that we want to be on the same innovation curve that they're on. So people using our system can have access to that. It's really important that all of us, keep pushing For this innovation, right, and the way that you do that is to make sure that I have the ability to integrate other technologies into my system. And I think both of us hold that premise that keeping as a non exclusive allows both of our team to be able to, you know, have access, or have our users of our system have access, I should say to the latest and greatest technology. We have started our program with the XCOM and are really excited about the progress. But we think it's important to make sure that we will have the opportunity to bring different technologies in for different users, even on the systems available today. Right. There are differences in the system, and people are choosing different platforms because of that. Sure. Stacey Simms 24:51 Yeah, it's really interesting. I mean, I keep hearing about interoperability, which I know is going to come someday but my interpretation of that which is I always call it the Mr. Potato Head. system is not the realistic system. So I try to temper my expectations but why not? Come on? I want to mix and match as much as possible. Why not? Marie Schiller 25:10 I don't know. Did you like playing Mr. Potato? I was never a huge fan. Stacey Simms 25:16 It's a it's an easier thing to explain, right? Why can't I use the lead Ray? With the tandem pump? Why can't I use a Dexcom with a barefoot pen? Why can't right i mean if it works better for me and my skin and my kid and my like, why can't I and I, I get it. But at the same time, I really hope that someday we're working towards that, hey, look, it could be worse for you. They could make us play operation or perfection or something terrible like that. Marie Schiller 25:39 Those are worse. Yeah. But you know it, baby. I think there are a lot of people were having that sort of turnkey solution is, you know, where it's all comes in on and I just understand it and it's all designed to work together. They prefer that and other people would would like that choice, right. So I think we're gonna probably see both of those emerge over time. And the FDA to be fair, has opened the door to that event, right? I mean, they're trying hard to separate the approval of each of the components. We saw that with the ACE ban. We've seen that with IC GM, and now with AI controller that can pass. So, you know, I think, at least from the FDA perspective, they've worked hard to try to enable some of that. Stacey Simms 26:25 I agree. Alright, so from interpretability. Let's talk about the proprietary aspect of this. Because I think when a company like Lilly, that makes insulin gets involved with the hardware in which the insulin goes, a lot of questions come up, and you mentioned the quick pen. So can you just confirm again and correct me if I'm wrong? Will other insolence be able to be used in either of these systems pen or pump? Marie Schiller 26:52 Yes. So on the pen side, the system is being built around our quick pen platform. So it will be a system that work with really insulin on the pump side of the equation. In addition, we'll have a first generation that will be a patient built component, but over time, that may shift as well. So on the life cycle plan for that pump, we're looking at the ability to have Lilly insulin in that system, as well. Stacey Simms 27:27 Okay, so to be clear, and not say, not putting a judgement on this, but just to be clear with the idea is that this would be a proprietary pump, that Lilly would make the pump and Lilly would want its own insulin. We've been human lock used in the pump. Marie Schiller 27:38 Yeah, I think the system is being designed around Lilly's insulin. Stacey Simms 27:43 Alright. So you know, we've Marie, we've known each other for a while now and I know you know, this question is coming, but I think it has to be asked in a day and age where people are so angry about the pricing of insulin. Why should we get excited about systems like this when people are worried about But affording the stuff that goes in the hardware, let alone affording the hardware, whatever it is, and how great it is. There's a lot of concerns about cost. I know it's not your department, but I can't have you on and not ask about it. Can you comment on that? Marie Schiller 28:14 And no and not and I appreciate you asking it. And you have no need for a while as well. So I appreciate the service candid question. Look, you know, and I've said this before, and I'll say it again, you know, we are committed to be able to let people with diabetes, access our medicines, and in the future, disconnected diabetes system that will include sort of the pen based system and the pump and other components. I know you'll be frustrated at this next part of it. But I can't fit here in sort of the position I'm in and where we all want this platform to be any, you know, give you any speculation of the details of how that will happen, or how that reimbursement will be in the marketplace. It just wouldn't be fair to you or your user's to speculate on that, except to say that we are 100% committed to making sure that that access is available. Look, we're not here for the sake of having this innovation sit on a shelf somewhere, not why I'm here. It's not why others are here. And so it is really important for us to be laser focused on how people access the system. Stacey Simms 29:24 And I mentioned in the introduction, but you live with Type One Diabetes, I definitely have another question for you. But it just occurred to me, are you allowed to even say this, have you tried this system? Like, are you in the trial? Can you trial your own? unprepared? Marie Schiller 29:38 I sure how to answer that. I have no, I'm not in the trial, but I can give you that answer. So I am not in the clinical trials that have occurred today. Stacey Simms 29:50 I'll tell you as a person who doesn't have diabetes, obviously, you know, it's just something that I always wonder about when I talk to researchers or clinicians or I know there's there's obviously rules for clinical trials. But you've got to think, alright, I want to try this on myself. I know a lot of people have done that. Okay. So the real question I wanted to ask Marie Schiller 30:05 is okay, I can't wait. I can't wait. That's why there's no, we're pushing hard to justice available. I, I'm waiting, like out there to make sure that I get this. Stacey Simms 30:18 Alright, so I've got a difficult question. So my real question about living with type one is difficult is it right now to work at Lilly, when people are so angry, and a lot of that is directed? We've seen protests separately headquarters, you know, and again, it's not you, you're not in the price department. Even if there is one. This is not something I know you can control. But is it difficult and frustrating for you to see the problem, frankly, with insulin pricing at all of the insulin companies? Marie Schiller 30:46 And the answer to that they see and I think we may have talked about this, either the last time on the phone or when I saw you it's like how do you not feel the pain in you know from people, right? I mean, this dishes, dish issues difficult issues people are dealing with. So of course, you know, what I would say is is that worse from, you know, being here? You know, I look at what we're trying to do. And And And again, I'm not the person to sort of comment on this, but it's a priority for Lilly. And I'm really proud that Lilly has made it a priority to make sure that access is there. Stacey Simms 31:25 Going back to two devices that we've been talking about. I always hate to ask about timelines, but I always have to ask about timelines. Can you give us a goal timeline here? Is there any indication of when it might be submitted to the pen or the pumping, which will kind of go in first? Marie Schiller 31:42 Yes. So let's talk about the pen first. So as I mentioned, and you can see on the FDA site the supplemental approval for the pen has gone through. We are working with the agency on the other components of the systems. We are not giving an update right now. on the timeline for that system, but we expect to be giving updates over the next couple of months on the pump. As I mentioned, we'll be sharing the first clinical data and our signaling that we're still over the next couple of years hoping to get that system to market Stacey Simms 32:16 where we thank you so much for joining me. I know it's a difficult conversation to have when you've got, you know, a lot of things about to come out and then other things that I'm asking that aren't really your department. But I appreciate your frankness. Before I let you go as a person who lives with type one, what is it like to work in the diabetes sphere? I mean, I think part of me would be kind of tired, like my whole day is diabetes. My whole life has diabetes, but it's got to be exciting as well. What's Marie Schiller 32:41 it like? It's an interesting question. For me. I just don't know any different facing effects? The answer is, I don't know my kids would probably answer the same way. I don't know what I would do with myself if I wasn't doing this all day. My weekends are spent so much in the diabetes space as well. It's just something that that is it's just a part of me, right? so much a part of all of us who are living in this space. And I'm impressed every day by all of the people working so hard to make these advancements. And it's amazing, right? As you've seen, we're actually getting some of these solutions out and reading about the improvements that are there. And I'm excited and want to keep staying focused on doing what I can to get these products out and having my team man. I mean, everybody here is just so passionate about what we're trying to do to make these advancements. So it's, um, I know it's a it's like one of those questions someone would ask what would you do if you worked with your spouse? You know? I don't wanna say I love my diabetes so much because I'm not sure I'd answer that way. Am I cursed my diabetes maybe as much as I do other things in life, but it's data reason that probably keeps That's all motivated if we know how much better we can make life. Stacey Simms 34:03 Well, thank you so much for spending some time with me. I really appreciate and I hope we get a snapshot of the devices soon enough, Marie thanks again. Announcer 34:15 You're listening to diabetes connections with Stacey Simms. Stacey Simms 34:21 Of course, more information at diabetes connections.com. I always link up a lot more info at the episode homepage and a transcript. I'll be interested to see how this episode is received. As I mentioned at the start of the show, there are some people who do not want to hear anything from Lilly, if it's not about lowering the price of insulin. And I respect that I hear that I know that there's a lot of anger in our community and a lot of frustration at all the insulin makers and you know, I do share a lot of that, but I would be curious to think if we should not be following the other technology advances that are coming out of these companies, because I'll be honest with you, I said this two years ago, I think Lilly is seeing the writing on the wall. That the price of insulin is going to be mandated to come down in the next few years. And they are, they don't wanna lose money. They want to find other ways to continue to be competitive. And I certainly don't think that insulin will be free. But I do think that going into the pen and pump business is a move on their part with an eye on the price of insulin coming down. Look, I'm not an economist. I'm baby way off base. But that is something that makes sense to me. up next Tell me something good. And then a little bit later on. I want to talk about some other pump companies and news that came out recently, diabetes Connections is brought to you by Dexcom. Do you know about Dexcom clarity, it is their diabetes management software. And for a long time, I just thought it was something or endo used. You can use it though both on the desktop or as an app on your phone. It's an easy way to keep track of the big picture. I check it about once a week. It really helps spinny and me dial back and see longer term trends and helps us not overreact to what happened for just one day or just whenever Our the overlay reports help with context of Benny's glucose levels and patterns. You can even share the reports with your care team, which makes appointments a lot more productive for managing diabetes is not easy, but I feel like we have one of the very best CGM systems working for us Find out more at diabetes connections dot com and click on the Dexcom logo. I love the Tell me something good stories this week. Honestly, I love them every week, but I got a bunch that are so fun to share. And one that frankly is pretty important. Alright, so first, Candace says my son was just diagnosed January 23. This year with a hospital stay. By February 13. He was dancing away and winning a hula hoop contest at his first school dance since diagnosis. He's 11 and he was so proud of his accomplishment winning the contest. And we as parents were so happy that his diagnosis wasn't holding him back. That is so cool. I didn't Kansas for a picture shockingly, an 11 year old did not want pictures of him hula hooping to be displayed. I'm actually not sure if she had any, but we respect that we hear it. I just think it's fantastic that he did it and that he's doing so well. This soon after diagnosis way to go Candace! Alison said this is a tiny thing. But today my child was type one went to get her foot x rayed her shirt, rode up and showed her Dexcom and the text said, Hey, do you have diabetes? I do too. Then she pulled out her pump. It was super cool. Allison says her child was diagnosed in early December. I think that's great. Is there anything better than that diabetes in the wild citing, right? You know, you're with people who get it. It's just so great. And then this one you may have seen on social media. I posted a picture of Isabella with her fish, not her pet fish a fish she caught. Isabella is nine years old and she loves fishing with her dad and boy she beaming in this photo with a fish that's like as big as she is. Her mother, Heather says she was diagnosed with type one at age four. Again, she's nine. Heather says, I will tell you this little girl is amazing. Her dad got diagnosed with lupus almost four years ago. He is on dialysis. We are on a kidney transplant list. I'm currently trying to be his donor. And a lot goes into that. This is her and her daddy's favorite thing to do. They live life to the fullest, and nothing stops them. Heather, thank you so much for sharing this story for letting us share the picture of Isabella, you guys are carrying a heavy load right now. And I'm so glad to hear that you're finding enjoyment in things like this. It's kind of trite. As I'm hearing these words, leave my mouth. I mean, there's really not much to say when you're in a situation like that. But I'm happy to share your story. And I hope you keep us posted. Let us know what's going on. And definitely send more fish pictures. I would love to see that I really would even if we don't share them. You can definitely send them our way are posted the Facebook group. Our final Tell me something good is a little bit of a different story. It's more of an news story. But this is really important. And I think very good news. Beyond type one announced that they are collaborating with the National Association of School nurses to raise awareness of the warning signs of type one diabetes. So this is a new collaboration that means that 10s of thousands of school nurses around the country are going to get these awareness materials from beyond type one, if you haven't seen these we did in North Carolina push a few years ago. And they're just simple and straightforward. And they tell you the signs, and they talk about what to look for. I don't think those of us in the community had any idea what DK a was what it looked like, how deadly it could be, you know, before we our children were diagnosed, right? How would you know? So this education campaign is absolutely going to save lives. Huge thanks to be on type one. And a big thanks to the Helmsley Charitable Trust which is funding it. I will keep you posted. I will put up links in the show notes on how you can get involved because you know ordinary people state to state are getting involved. We sit around my dining room table here outside of Charlotte, North Carolina and stuffing envelopes and sent them out really can make a difference. Tell me something good happens every week around here. Give me your stories post in the Facebook group, email me Stacey at diabetes dash connections dot com. I would really love to hear from you. We got to get the good news out in our community. Tell me something good. All right. We're getting a little long here. But I wanted to bring you some news from the other pump companies. I know I don't usually do a news update this far down in the show, but because I put the coronavirus episode out a little early. There was some news I was going to put into that episode that has gotten pushed here. Let me get right to it. We had an earnings call from tandem. And the really interesting bits from that were that the T sport hybrid patch pump is now expected later this year, possibly probably early 2021. The CEO of tandem says they plan to file with the FDA for t sport approval. This summer with a new mobile app, which means you'll be able to bolus from your smartphone. So apparently, they're going to submit this in two different ways two different filings. One would be a separate handheld device, right like a dummy phone or a dummy controller of some kind that you'd bolus from. I'm dummy and that it doesn't do anything else but control the pump. But the other filing would be remote bulleting by the smartphone app. And apparently the CEO said they will not launch t sport until both have been okayed by the FDA. So you would have the option of using your phone or of using the singular let's call it singular controller rather than the dummy controller. So that's really exciting. I'm gonna post some pictures diabetes mine posted this update and posted some pictures of the tee sport. It is a little patch pump that can be worn on the body or it has a tube so it can be put in your pocket again. I don't know how it sticks to the body. Did you hear me talking to Maria about that? Is it reusable? Like ever since or is it like a dexcom to rip it off or a pumping set. So we'll find out more about these things as they go forward. But that was some really interesting news from tandem. The other bit of news comes from Insulet. They are in the middle of clinical trials for horizon, they had hoped to be filing for that approval. This summer horizon is the hybrid closed loop for the Omni pod. They did have a software issue. That means they are pausing the pivotal study, and it's going to delay things, not really sure how long, of course, they're really hoping that it won't be too long, you know, maybe a month or so. But they are now pushing the anticipated launch of horizon to early 2021. And I know there's a lot of disappointment because people really want this system. I will say to you that tandem had a similar issue with their software during the last pivotal trial for control IQ. It was very quickly fixed. I don't think it affected the timeline that much. Maybe it was just a month, but it still hit its goal of the end of the year. So hopefully Omni pod insolate can get back on this and get back to their timeline but I will link to More information on that, because I know these things just cannot come to market soon enough. tank you for staying with me. This was a long bit after the interview and I appreciate it, but I wanted to get some information out there. I really appreciate you listening. There's a lot going on right now. All right, I'm gonna stop right here and thank my editor John Bukenas from audio editing solutions. If you have an audio project, I highly recommend john, you know, if he puts up with me, and my rambling that he can do wonders for you. All kidding aside, john is great. I love working with him. He never asked me to say anything in the show. But he really is such a strong part of what makes this podcast successful. And boy, is he nice to me and doesn't leave in all of my papers. So thank you, john. And thank you so much for listening. I'm Stacey Simms. I will see you back here next week. Benny 43:55 Diabetes Connections is a production of Stacey Simms media. All right. reserved all wrongs avenged Transcribed by https://otter.ai
The tables are turned this week as Stacey gets on the other side of the microphone. Kerri Sparling, writer of the long-running and popular blog SixUntilMe and now Children with Diabetes board member, interviews Stacey about her experience raising a child with type 1, what led her to claim "The World's Worst" title and much more. This is part of Children With Diabetes Celebrating Storyteller series. "There are some amazing storytellers in the diabetes community, and many of those folks have spent years honing their craft through blogs, books, and videos. Their stories of life with diabetes bring our community closer. Sharing stories helps make the journey with diabetes less isolated and instead paved with hope and camaraderie. (text from the CWD website) Stacey was excited to be selected to be part of this storyteller series, and even happier to be interviewed by Kerri. You can watch the video here, read the transcript below or, of course, listen to the audio on this episode. Check out Stacey's new book: The World's Worst Diabetes Mom! you can win a copy from CWD - must enter by March 20th. ----- Join the Diabetes Connections Facebook Group! ----- Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcript: This episode of diabetes Connections is brought to you by the world's worst diabetes mom real life stories of parenting a child with Type One Diabetes available as a paperback ebook and audiobook at Amazon and at diabetes connections.com. This is diabetes connections with Stacey Simms. Welcome to another week of the show. I am so glad to have you along. As always, I'm your host Stacey Sims. This is a little bit of a different week around here because we released our regular Tuesday interview episode early. If you haven't listened to that yet, it was all about the corona virus and basic information that people with diabetes need to know. Thanks very much to Gary Scheiner CDE and the director, founder of integrated diabetes services. He is always a very calm and informative presidents. He also has a great sense of humor, but I wanted to get that show out. pretty quickly, because you know, of course, as the situation is changing, podcasting is tough to get breaking news out. But we wanted to make sure to get basic information from a good source out to the diabetes community, because I've been seeing and I'm sure it's only gotten worse, a lot of rumors and the beginnings of some panic. So I hope you listened to Gary or read the interview as well, because I put it out as a blog post with just that interview, as well as a transcript with the entire episode. And I hope you've been able to share that a lot of people picked up on it and I really hope it's helped give you some good information. We'll do more as the situation changes if we need to get more information out there. And then this week is a little different because I usually do a mini episode here, where I'm just talking about one topic kind of an editorial, but I'm going to be bringing you an interview that Carrie Sperling did with me now carry most of you know, wrote the long running blog six until me she retired that last year. She's doing a lot of great work with children with diabetes. This is the group that among many other things, puts on those great friends for life conferences, the big one in July every year, smaller regional conferences throughout the year. And they do a lot of really good work in terms of information, and community outreach. So Carrie is doing some of these interviews and I was so excited to be able to talk to her. You may have seen it, they put it out as a YouTube video and I will link that right up. You want to stop right here and go to the video instead of listening. It's the exact same interview except to get to see us and it made me realize I need to work on the lighting in my office. But the information I hope is good. We talked about what led me to write the world's worst diabetes mom a lot about you know, parenting Benny, my son diagnosed right before he turned to 13 plus years ago now, privacy issues Carrie has shared this in her own life. You know, how much do you share online? How much do you not? How do you decide that? And it was really a fun conversation. It's always a A little weird to be on the other side of the microphone. Unknown Speaker 3:02 It's not Stacey Simms 3:02 my comfort zone. But here we go. Anyway, here is the interview that Carrie Sparling did with me. Kerri Sparling 3:09 I am here today to talk to Stacey Simms Stacey Simms 3:12 about this, oh my goodness, Kerri Sparling 3:14 I had to climb on my bookshelf to get it down because I accidentally put it on the shelf that I couldn't reach without a stool. So thank you for giving me morning exercise for that. I appreciate it. But um, I Okay, let me make this more formal. I am very appreciative that you've taken the time to talk to me, and then we're going to broadcast this to the children with diabetes community and then share it through our different channels. So thank you for making yourself available. I know this has been chaotic, getting them on the line. Stacey Simms 3:38 This is what I get out of TV, when really we just need to stick to radio, but I really appreciate it Carrie. Thank you. Kerri Sparling 3:43 My pleasure. And so I want to jump right in because I've already kept so much of your morning already. So just if you could for a minute just introduce yourself to the community that may not know you already so they can get a sense of who you are, and then we'll get into the book. Stacey Simms 3:54 Oh, sure. So my name is Stacy. My son Ben. He was diagnosed more than 13 years ago, which is bananas, time just flies, but he was not yet two years old. He was diagnosed with type one when he was 23 months. I have an older daughter Her name is Leah. She is three years older than him over there four years apart in school and I say that cuz she's a freshman in college now and he's a freshman in high school. I started a blog about a month after Ben he was diagnosed at the time I was working as a morning radio show host I had been a TV anchor and reporter that's the I hate pictures. Because it's all the makeup and the hair and the you know, I'm looking at myself like my headphones are so big on this is not good. I distract myself. Um, but then I started the blog and then four years ago, I started a podcast and then last year I wrote the Kerri Sparling 4:39 book. That's that is awesome. And so so you've been sharing a lot of your family's experience and your personal experience with centered around diabetes, but going right into Stacey Simms, the world's worst diabetes mom. So this title obviously feels a little tongue in cheek because you are clearly very involved, clearly clever and also on top of things that are going on in your kids. In your family's health, so why did you call it this? Stacey Simms 5:03 The book title came about because I had actually been working on a parenting advice book about raising a child with type one for a couple of years. And it was really boring. And it was really like had been done before. There are so many great books, especially, you know, from a layperson perspective, there are so many great books by medical professionals that can really tell you how to better manage, and I didn't want to just say, here's our story, and here's what I think. And I was writing that book, but I wasn't, I wasn't jazzed by it. It was kind of just writing, you know, old blogs and my publisher and said, Oh, put your old blogs together. We'll just put those out. You know, that just didn't sound right. To me. No friends really resonates like old blogs like it. So I was in a Facebook group, having a discussion like I still do, I foolishly still go into Facebook groups because I want to help people and I get help to still and we had a disagreement and it got heated. I really I felt strongly that this was an okay way to manage and the person was so mean and said, you're gonna you're gonna kill your child you're you're terrible parent, you know really went there. And I just said, Well, I must be the world's worst diabetes Mom, you and I slammed the computer shut and I walked away and I was like, Oh my gosh, this is it not not even think about the book but this is who I am I want to talk about making mistakes. I want to talk about living with less fear. I want to talk about not always being a slave to your beats. Are you okay? Do you need a juice box? Unknown Speaker 6:33 Sorry, and beeping, then one of those days, but everything is fine. Thank you for asking. Stacey Simms 6:36 But I just wanted to, I realized in that moment that I did have something to say. And it wasn't just about the old blogs. And I went back I screenshot of the conversation because I thought well, maybe this guy is bananas. It's gonna come after me. But I also deleted it. Because we didn't need my anger out there either. It wasn't just Hey, I was ugly too. So I got past that and I thought let's talk about all the mistakes I've made because we Made a ton of mistakes. And it's not a question about being a bad parent or a good parent, sure, you're gonna make mistakes with your kids, whether they have diabetes or not. And let's use those examples of mistakes to talk about resiliency and confidence and, and I think my son is better off for all the mistakes I made. Kerri Sparling 7:16 I hope that applies to parenting outside of the realm of diabetes, because I'm not a perfect mom myself. And so it's reassuring to hear that stumbling leads to success, even if it's a modified version of the success you thought you were going towards. So I really appreciate that. And I also like the fact that it's not like here's how to be perfect by Stacey Simms, because that really puts people on their heels like you can't take advice from someone that you have on a pedestal it's always a lot easier to have a peer to peer conversation and that's why I feel like your book reads through it very a resonated for me and I'm an adult the diabetes not raising a child with diabetes but reading your perspectives gave me a lot of insight on maybe conversations that my mom and I never had or my email just think the cross Can you see that when it comes across You know, you're supporting the note cuz he's just some weird emails. But I just have a couple notes. I just wanted to look through this. But when I was reading through the book, there's the story of the first night that you guys are home with, with Benny. And, and it hit me really hard because I was thinking about my own two kids. And like I said, they don't have diabetes, but I was putting myself in your position. And it's so easy to be the person with diabetes from my perspective, but it is very, very different to be the person who carries just as much, but it's like 10,000 feet away for so much of the experience. And so do you think that it's important to have those stories shared like stories like yours and stories from adults with type one, so that we can kind of create a, an amalgam story sort of thing, like, why is that important? Stacey Simms 8:37 I think it's a great question, because it's it's so important to recognize that the two experiences run in tandem, but they are so separate, as well. Right? We're never really going to separate them. We can't pretend they're the same. So a person with diabetes is having one experience a parent of a child with diabetes is having a totally different experience, obviously tied to By diabetes, and I, you've already said, Oh, I think it's you know, it's worse to be the parent, you've implied that by something you said, which is fine. I mean, I almost every adult with type one I know, says all my mom, it was so much harder on her. Kerri Sparling 9:10 We're not saying it to make you feel better. We're saying, we believe that fun. Yeah, Stacey Simms 9:14 I understand. But I disagree, because I'm not beeping, and I can walk away from it. But at the same time, it's not a question of comparing, right. And I didn't mean to put you on the spot. I'm not saying that you're doing that. But I think it's really important that we see these experiences as equally important, but very different, but then tied together. So telling all of these stories. I'm hopeful that Benny, when he gets a little older, we'll look back and read it. And he knows what he knows the stories we actually shared that ahead of time. We talked about what I could put in the book, but I'm hoping that he'll see it and kind of think, Oh, well, that was not my experience, but I'm glad to know it. Kerri Sparling 9:50 Well, of course and you were saying it's not it's it's not about comparing them. I think it's about making a cohesive story around them like my low felt like this, but it looked and felt to my mother like this and meshing those two stories together together gives us a broader experience touch point. And I think that's so important, especially for like a teenage kid who might pick up your book and read it. And when they're in that angsty, angry part of diabetes, and they might be so furious with their parents to get your perspective on that might help segue a good conversation with their own parents. That's why I don't think this book is just for parents of kids with diabetes at cross collateralize is the whole community you know? I don't know. I think that's accurate. I'm gonna toot your horn for you that way. Stacey Simms 10:28 One thing I think it's really interesting to talk about is you mentioned like the not perfect parenting thing. And I think it's we're under pressure, regardless of diabetes is parents right? You can't win you really can't. But I also think it's funny when you look at a lot of parenting blogs and parenting writings. It's either I'm a perfect parent and you should aspire to look like this. It's perfect Instagram photos or whatever, you know, look like us do like us eat like us. Or you have the oh I don't know what I'm doing. Unknown Speaker 10:54 I'm so crazy on motherhood is that you know, I'm a man I look at my and I really that doesn't speak to Neither, Kerri Sparling 11:00 right we are middle lane. Stacey Simms 11:02 We are smart, we are strong. We are sometimes a mess. We are sometimes perfect. And I really I'm not. I know that sound like I was making fun. You know what I mean? If these archetypes, especially women we get put into, right. I'm a hard driving success story or I'm so clumsy. I fell into my man, you know, I mean, I hate that. So I tried to really in this book, kind of encapsulate, you know who I am, but who I think a lot of other moms are too, right. competent, confident, Kerri Sparling 11:29 but not having it all together. Now might be an important part to bring up the fact that I'm wearing normal clothes from the waist up, but sweat tears from the waist down. So like I think that sort of is the it's the template for that. They need you there we go. Wait, you you would actually skipped ahead to something I wanted to ask you about. Sorry. Should No no, that's fine. This is good, though. When you're using the questions, I know and I don't normally write my stuff down. But I'm organized today. Um, but yeah, we talked about when you first started sharing your stories, and Benny was home that first night That sort of stuff. And you used to write about Benny's personal experiences and yours. And as he's gotten older, and his experiences become more his, you've said that you've stepped away a little bit from telling his stories and have embraced. I can't describe it for you. But like, what, what's it like to decide to share x in the beginning, and what makes you transition to the y? Stacey Simms 12:19 I think it's such an important conversation. It was interesting in the beginning, and I do wish that I'd given my kids just a little bit more privacy by changing their names, or giving them nicknames. The problem for me was I was already on the radio. And we had a show where it was mostly political news. But we did talk about our personal lives a little bit. So my listeners knew when I started at that station, I had a one year old daughter. And then when I was working at that station, I was pregnant and then I had a baby and here's Benny in the hospital, you know, it was a different experience than just blogging. So it didn't really occur to me at the time and social media. Certainly what it is now isn't wasn't then what it is now. It was a different experience. But when you have a toddler, you have a baby, I mean, even going back, I was Careful at the time not to overshare I but as he got older you realize, you know people are reading this people are looking at this. There were there were only some experiences that I felt comfortable sharing and it wasn't just the good stuff, right? We shared things that things went wrong. I thought that was important. But I'm I'm on the record. I sound like a broken record. You know, I don't share my Sunday one. See, I don't have that. I don't like you know, do not share photos of your child in distress. You know, no hospital pictures. I wish I had pictures of him in the hospital and he was diagnosed for me. Sure. But you know, we didn't have our phones with us. 24 seven at that point, especially didn't have cameras on them, which sounds so ancient. Kerri Sparling 13:43 I mean, this is what it is right? Like when I was diagnosed with diabetes, I had to pee in a bucket to test it. So like things had to not a bucket. I mean, let's be realistic about this. But you know, things have progressed and with it the the conversation about what to share and not to share and so, I mean, you talked already about not sharing his anyone see? And I think personally, I am on the same page with you about that no one needs my personal data points because their mind in their personal, but that there's a broad spectrum of decision making processes around that sort of stuff. So what made you decide not to do that? Stacey Simms 14:14 Well, I think I'll just put a caveat in there, I think, to not mindlessly share, right? Sometimes it makes sense if you're trying to talk through something or get advice or share a situation or, or say, hey, look at this difficult situation we worked through and now we're celebrating I mean, just mindlessly is the word I tried to use about it. But what changed was when he was about seven, I think I read something by Moore McCarthy, who is a mentor of mine, and she's longtime blogger, author, I mean, yeah, faculty, you know, I probably saw her speak there and got this information, but she really encouraged me and others to think about it. And once I stopped to think about it, I realized there's no reason for my seven year olds health information to be on the internet. I'm not posting my weight and my cholesterol. And you know, my blood pressure. It's the same thing. We don't see it that way, right? But it really is. And that once I thought about it, it changed everything for me and I started sharing more, you know, great endo visit no changes, everything's on track or great endo visit. We had a whole conversation about changes we have to make sure sometimes like bad, you know, bad can be good when you get the information. Yeah, I love the finger quotes. Kerri Sparling 15:27 But I feel like that's an important part of it too, because it's not truly bad or truly good. There's a right Stacey Simms 15:32 dial up stations get better when you get away from the numbers. I agree. You know, you can you can have more in depth about how you're feeling and what advice you're looking for. And that sort of thing. So I've shared with friends when I've said old I'm upset about this, or can you help me with that? That's different. Kerri Sparling 15:46 Yeah, no, of course because that's your actual personal life but broadcasting it to the broader internet as a different person retired. As a kid who grew up with Type One Diabetes, that's my perspective. And yours is parenting a kid who's growing up with Type One Diabetes. How How do you feel about I mean, you see a lot of memes from parents about parenting in general where they have like the curlers, half in their hair, and the bathrobe and the coffee cup dangling off of one arm, and they're like, parenting is so exhausting. And that feels universally haha. But when I see that same sort of meme applied to diabetes, like, this is what a parent of a kid with diabetes looks like. And they just look bedraggled and rotten and exhausted and as an adult with type one that applies a guilt to my experience that I didn't see coming. And so I'm just curious what you think about things that paint diabetes in a light that maybe they don't realize is shining directly on their kid. When parents tell those sorts of stories? Yeah, it is a great question because the reality is, maybe you didn't sleep that great last night, right? Maybe you were up three times treating a low. But are you talking about me because that was my nightlight? Stacey Simms 16:49 Well, I do have Do you have a baby can still because there was a signal in my house. No, I Unknown Speaker 16:52 do. Stacey Simms 16:55 It No, I'm talking about the parent, right. So if a parent has to do that, and then wants to go on from But the next day and start talking about how hard it was. I can understand that. But I do think and my favorite meme about this and I don't think it started as a diabetes parenting meme. I think it's just a parenting meme. But it's like, you know, an 87 year old woman, and that it says like, well, parenting is hard. You know, my I'm celebrating my 23rd birthday tomorrow. Money. But I do think that you've hit it on the head, that's going to be my would share about diabetes. I think it's difficult to know where to draw that line. And we don't, we don't think because what we're doing not to get all psychological. But in doing some research for a recent podcast I was doing I found a great article about this and I can send you the link but when we're sharing things like that we're looking for likes, right because our brain As humans, we need support. We're looking for community. We actually like to get the good Brain Stuff going the dopamine or whatever, when you get the right weights real and physical and social hosting, something like that, you know, is going to bring in more of that. And it's not made up. It's not fake. Oh, yeah. Kerri Sparling 18:09 Feeling it all Stacey Simms 18:10 really happens. But there are better ways of doing it. I think and as you were alluding to, if we, as parents of kids with type one, don't listen to adults with type one, we miss out on this kind of conversation, because no seven or eight year old is going to say, you know, it kind of hurt my feelings or I, I really processed some guilt when you posted that, right? They're not gonna say that they may not even realize it, but we need to be mindful of that kind of stuff. And I think it's fine to have fun and you know, maybe share that privately. But um, you know, I I'm really try hard not to make diabetes, the focus of everything and not show that guilt because that's just parenting anyway. Unknown Speaker 18:48 Right? It's just an added thing. Stacey Simms 18:50 It is just an added thing. It's like not to get too far off topic, but when people are freaking out about sending their kids to sleep overs, sure, right, because something might happen when I was in second grade Jennifer Look, it's like At my house, we had a babysitter. We didn't eat that my parents and she put her leg on my bed. It was the 70s. It was like some metal crazy trundle bed. She cut her leg bad enough that we had to go to the ER and get stitches. Unknown Speaker 19:10 Oh, wow. How do you prepare for that? I don't think you do. Stacey Simms 19:15 Things happen on sleep overs. emergencies happen. Parents who say I'm gonna have sleep over have to be prepared for weirdness. And to me diabetes falls under that category. But that's a decision you have to make. And I think it's the same thing with that kind of a mean, you kind of have to make the decision of, there's a difference between, everything's fine, everything's fine. Everything's fine, which I've been guilty of for a long time. It's fine. It's fine. I'm not gonna worry about it. I'm good. I'm good. I'm good. I'm good. I don't need any help. I'm fine. And there's a difference between that and what was me everything's terrible. Like, like sucks and you know, oh, my God, diabetes is the worst. You gotta you gotta find that medium and you've got to, at least to your children, I think it's important to fake it, but be careful about stuff like I might. Kerri Sparling 19:57 I like what you said earlier because I read a lot about my fulness and being mindful and making sure that you're mindful, but the fact that you've cited mindlessness as a potential alternative to that, like, don't be mindless, don't share mindlessly consider the you know, the course of your actions that you're taking and how it might influence your kid. That is a huge takeaway already. For me from this conversation. It doesn't apply just to parenting diabetes, I think it applies to the whole mess being Don't be mindless about the things that you're sharing. I think that's a really, really good tip. Stacey Simms 20:26 It's funny because I stink at being mind. Right? You're like, Oh, no, take your time when you eat and drink your tea and fever and, you know, take them home. I really don't think I can do that. But I can take an extra 10 seconds and think do I want to post this photo? Kerri Sparling 20:39 Of course, not. In a mindfulness exercise once I was asked to spend one minute eating one m&m, and it was really strange experience and I'm sure it was really effective, but for me, it made me feel very stressed out. We can get into that later, but because we've talked a lot about parenting, and I'm sorry to be going back to my notes here. You You talked about it experience where you and your family are you at least and Benny and Leah met Nick Jonas, and how this was truly more of a thing for Leah, your daughter than it was for your son who is the one who has diabetes. And there's something that you wrote that really stuck with me because I feel like parenting a kid with diabetes, that parent is acknowledged a lot, which is fantastic. The child with diabetes is acknowledged quite a bit because they become the focal point of that narrative. But the siblings of kids with diabetes end up on this weird purgatory peripheral area, and they're not often acknowledged. And you wrote that at the end of meeting with Nick Jonas, that you had said the diabetes was in our lives. But she Leah knew we wouldn't let it take over she knew she wasn't going to be left behind and reading that now gives me goosebumps for reading it then also did too because it acknowledges a group of people that need just as much support as I do as a kid, as you do as a parent. And when I think about children with diabetes in the organization, the programming really speaks to that as well. It's not just for parents, it's not just for adults with type one is for the siblings. It really embraces the whole family. So because your wrote that awesome line. Could you say a little bit more about supporting a sibling Stacey Simms 22:04 and, and the children's diabetes? I mean that friends for life Leah has come. And Mr. Summer schedules are always crazy. So it's rare that either one of my kids can come and like I still go, but I had a I had a blast, and she didn't really think she would. She kind of came as a favor to me. Kerri Sparling 22:21 But she was when she was I Stacey Simms 22:23 think she was 14 or 13. She was a teen. So she was in the teen programming. And you know, Benny was still too young to be in that programming. So they were separate. Yep. And she knew she was gonna get to go to a Disney park, which was amazing, you know, when state of fancy hotel with me and it was great. And she I don't think I saw her much. You know, she thought, Well, I'm not gonna do this. You know, we'll see how it goes. And it was wonderful, but it's really hard. You know, that's one of the few programs that there is for siblings. When when he was diagnosed, we got this reminder really off the bat and it did help us set the tone he was in high But on the Saturday, and on Sunday, I had an event that I had planned. And I do talk about this in the book. But it was an ice skating event uptown. So uptown from my house is about 45 minutes. Okay. And I was the only link between these two groups. It was a group from near my house and a group from your my work. Well, the skating rink was my work. They sponsored the rink. I didn't. I was working at a radio station that sponsored the rig. And I knew that somebody could take care of it, but it was going to be difficult. And Leah reminded me like we're still gonna go ice skating, right. We're still gonna go ice skating because I live in the south. Ice skating is exotic. No, it really is. I grew up in New York. I'm like, oh, there's never been she likes frozen ice that you walk on. Amazing, right? Magic. So I said to my husband, I'm like, We're going he's like heck yeah, go take her and he stayed the hospital and that was the day after my not your two year old was diagnosed and I'm thinking is this the right decision? Is this this is a terrible This is the world's worst diabetes mom because here I am leaving the hospital. But as soon as I I got outside I knew was the right thing. And that was the day that we said we can't let this take over our lives. So you have to be careful. Like, I don't I don't I say this not to judge but just again with that mindlessness and that mindfulness or you know, if you signs in your house that are like in this house, we're blood sugar fighting, you know, ketone, chicken, whatever it is, look, the science we will have in their kitchen. Nobody, I mean, if they're all diabetes related, of course, yeah. You know, have to be kind of careful unless you also have ice skating, hockey playing, you know, unless you want to have a litany of everything your family does. You know, I'm mindful of like, how many t shirts do I actually wear that say diabetes stuff on them all the time. And making sure like, I have stuff from my daughter's programming, and frankly, from Benny's programming that's not diabetes related. It's that kind of little thing I think that siblings really pick up on, like, if you name your dog or your cat or your goldfish after diabetes stuff, you know, it's a family pad. I mean, if it's a diabetes alert doc that might be different. I just think these are things that as simple We kind of forget, you know, they're always they're always watching and they're tallying. And you have to be honest with them that diabetes gets more attention. But with Leah, just having the conversation over and over again really helped. I mean, when she was 15, she and I had a great conversation about it. She said, I was really upset about it. And now I get it. Oh, it was amazing. I mean, he probably is back to being upset about it now. Kerri Sparling 25:22 But it was great. You guys can talk about it is really nice, because a lot of times that animosity isn't voiced, and nobody has areas to sort of air their concerns. And so it's good that you give her space and like we mentioned in friends for life, people have that space to get that stuff out there. Oh, yeah. Stacey Simms 25:35 I'm the over communicating Mom, you're like enough. Unknown Speaker 25:39 Talking to me. Kerri Sparling 25:42 We've talked about community, we've talked about sharing, we've talked about Facebook and the pluses and minuses of that sort of stuff. And it and it led me to the story that you had written about Benny losing his insulin pump. And then after that, you would, which I think is an amazing discussion about the cost of supplies, and how even small Children are mindful of the cost of things. And we'll get back to that in a second. But after that story you had mentioned, places to find support for when you have gaps like that, or you have issues like that. And I would love some perspective from you on as a parent whittling down this massive diabetes online community that we have access to, to a manageable size that kind of caters to what people might be looking for, like, advice for someone who's just jumping in and saying, there's so much how do I find what's best suited for me? Stacey Simms 26:26 Yeah, absolutely. I think the best thing to do is if you're already online where where do you like to be? Right? Do you like Twitter? Do you like Facebook? You like Instagram, Pinterest? You got to find your house, like where do you like to live? And then once you're there, find your people. And let's have a Facebook cuz that's probably the biggest for parents. I know Instagram is a lot bigger than the last couple of years. But Facebook groups are still really really active for parents. And my advice there is be careful again, not to turn your Facebook into diabetes book which is what happened to me. I am in I am in 50 Five Facebook groups about diabetes. Now granted, I joined Facebook in 2008. So I had around for a while. Kerri Sparling 27:07 Well, I'm just it was the look on your face. It wasn't like I'm so proud to be in 55 horrified to be in 55 it was a real mashup of the both Stacey Simms 27:15 emotions. And that's exactly how I feel. So, because I'm like, I want to be here. And I like the vibe of this group. I like the information in this group. And I like to put my podcast in this group. But what I did was I muted the majority of this groups and that has been phenomenal. If you're not familiar as you're watching or listening. It's very easy to do, you can just mute the group. I think you unfollow the group might be the technical term, but you don't leave the group. So that way, when you want to dip into those waters, it's up your time. And my Facebook feed went back to being my real life, which is my friends, the stuff does the dumb things. I follow in a little bit of diabetes, and then I can jump back in whenever I want to. And Facebook Of course will find you you know if there's something interesting, put it right in your face, on Twitter if you're there, which is Just a crazy place to be the best, just all the politics and mess but DSM a is still your diabetes, social media advocacy is still the best hashtag on Twitter. They still do the Wednesday night chats. Those are wonderful. Instagram I'm struggling with just a little bit only because I like the realness of the stories and things that people I know that out. But I've been trying to follow more people and I'm not knocking anybody, you're all wonderful and beautiful. But I have talked to two influencer type people and I complimented one of them. That was such a beautiful shot in your hair looks so good. And you know, she said, Stacy, I have a hair person and a photographer. Unknown Speaker 28:40 Diabetes person. What Stacey Simms 28:43 if I had if I had a hair person and photographer I could change the world. I do wear pants. I'd be wearing pants. I would have better headphones because wearing Benny's beats I thought these would be smaller. You have cute little earbuds I don't know I haven't no here but I studio cans that are like this big I thought would be even more Your cancer headphones in the biz. But I just, you know, I can't do the influencer thing. So you but you as you listen, you might love that that might be your thing, go for it. But I think you have to find where you live where you where you feel comfortable, where's your vibe, and then you'll find your people but don't let it get overwhelming. And if you find somebody that wants to call you the world's worth diabetes. You walk away walk away unless you have a book. But I mean, really, it's not worth the argument. If someone tells me I'm wrong, I'm not going to change their life probably. Maybe I can help. I've got a good discussion going in my local group right now about finding babysitters. There are people locally I run a face for parents in the Charlotte area. Okay, started a few years back and it's been amazing. And there's a discussion right now people like I will never be able to leave my children alone. Yes, you will. And here's how. And so we're trying to help each other kind of get past that right. So Kerri Sparling 29:59 that's See, I feel like the internet is fantastic. And it's done such a great job of connecting people who don't live anywhere near one another. But when it comes right down to human connection that people really crave in those moments of need, that hyper local stuff is huge. You can recommend a babysitter to me, but they're of no use to me in Rhode Island. But for the people who live down the street from you, they can go and call that person and they can actually hire them out. And that's, that says a lot to about the diabetes community how willing people are to give those really harder and resources and to share it with their, Stacey Simms 30:28 with their people. That's beautiful. It is absolutely amazing. And you think I mean, I know this is a CWT interview, but the first thing that comes to my mind is going to that conference or any of the conferences that they put on. I don't even worry about what I'm packing my pack everything Ben he needs but you know if he's anything, somebody's got it, and they'll have you a 2am you know, it's just an amazing community. And I don't know, I think especially locally, knowing that we might see each other at the grocery store. Like that Facebook group is probably one of the nicest groups. I'm in Unknown Speaker 30:59 You'll have to own what they say, right? Because they may see you over avocados. Stacey Simms 31:02 I know who you are, right? Kerri Sparling 31:06 We've run through the questions that I had structured for the book and my preparation. But is there anything else that you feel like it would be really pertinent to share with the specifically the CW, the audience, Stacey Simms 31:14 one of the things I've learned just doing the podcast and now on this book tour that I've been on this year, it's just fascinating as the technology gets better and better, and you know, Benny's on the newest software from tandem, and, you know, there's all sorts of great stuff coming out. It's interesting how the change from 13 years ago seems to be almost more fearful. And it's not that it's not so much that people are afraid to let their kids do things. It's that they're afraid to let their kids get out of range. I think I'm seeing that a little bit among adults as well. Now my adult view is skewed to a lot of the influencers and people that you know, sometimes I see in person, but there's this that's another thing with the the world's worst is, you know, talking about staying in range was never part of my repertoire was like go play football, and we'll figure out how to put diabetes in the picture. I'm learning that a lot of people have. We have amazing technology. It's changed so much just in the last few years. And we need to encourage each other to use that technology to live fuller lives, rather than use the technology to post graphs. And it's just remarkable to even say that to a parent who was diagnosed, compared who was diagnosed, I mean, I've gotta watch language. No, I Kerri Sparling 32:23 will go back to that in a second. You're right. You are right. My mommy got me it was a wee thing. Just, it was a different version of wheat. So that's a very fair statement. Stacey Simms 32:31 I think with a 15 year old to I'm really trying to change my language over it's hard Kerri Sparling 32:35 so of him. So I mean, his health is is your mental well being right. I mean, there's, there's no separation there. It's sorry to go on a tangent. Stacey Simms 32:43 Well, this is a great discussion. This could be for another time too. And we'll talk more in person, but I think it's his diabetes. And I'm it's the family is affected, but it's his. So that's what I mean. And I completely lost Richard. Kerri Sparling 32:56 Oh, wait. I was waiting to with that. I started ranges range, using technology to your benefit. I sorry, Stacey Simms 33:06 I got all I get crazy bad language right now it's it's really hard for me to change over. But I just feel like we're finding that this the state of the art. I mean, I know what I'm saying in my community, we have a pilot program where your child is diagnosed, and they give you a dexcom in hospital when you go home. So it sounds great. But the problem is that there unfortunately, I don't know there's enough education and I'm not slamming the CDs and dexcom here has nothing to do with that. It's just the diabetes is hard. And so see everything from the beginning. Maybe you get used to that, but then the dexcom comes off and they don't wanna go to school, or they don't want to go to the waterpark, or they don't want to go on that that field trip or that overnight because they've never been without the depth causeway. And we're more and more and more of that, where I would be like, Oh, I hope your inset still on, you know, an hour but you learn resiliency, you learn stuff like that. Yes, the worst. And that's the story. When he was three, we were at a waterpark. That's in here. Instead came off and his blood sugar went really high because he was terrified of shots in sets at the time. And I thought, you know what this is going to be an hour to he's going to be fine. The long term, my indices stuff like this is okay, as long as we don't do it a lot. And maybe the running around will bring him down. It didn't, you know, so he got with Ari was 400 we change this instead, we got him home, he was fine. No ketones, blah, blah. But in my local group, someone had posted my kids dexcom came off, I'm not sending her the waterpark. I'm like, come on. Yeah, I got it. Right, we got to use this stuff to live better not let it restrict us long way of getting to that point. And that's really where I think I am right now. Because, you know, the technology is fantastic, but your stuffs gonna fall off. Things are going to fail. You know, Kerri Sparling 34:44 you know, you have to continue on several life after diagnosis thing. Stacey Simms 34:50 So it's been a long time. Permit this year, I can't believe it. Oh, and then you get to write about driving with diabetes, which is a Book unto itself, start, the book pretty much stops in sixth or seventh grade. So I'm not going to say that I'm an expert at high school yet, because I've only had one kid go through and she didn't have diabetes. So Kerri Sparling 35:12 Nick Jonas at one time, so there is that there is that kind of coasting through. But um, but and so you have just been so generous with your time and your perspectives, I really, really appreciate it. And if you could just do me one solid real quick and let people know where they can find you online and where they'd be able to pick up a copy of your book. And obviously, we'll be including links to that, you know, and all the notes that are around this video, but hearing it from you is great. Stacey Simms 35:34 Oh, thank you so much. I think the best place to go is the podcast website, which is diabetes dash connections.com. And then from there, it'll link to every place else the book, the podcast, the blog, blah, blah, blah. And Kerri Sparling 35:45 so what's the actual URL for that Stacey Simms 35:48 diabetes dash connections. com. Perfect. And I would love to do a book giveaway. Kerri Sparling 35:55 Oh, we would love to have a book giveaway so Stacey Simms 35:57 I can give away. Let's do this. Let's do a paperback And let's do an audio book. Because the audio book was really fun and interesting to do. If you ever do an audio book, it's quite the experience, like reading a dramatic play. It was very strange, very strange, totally different experience than writing it. But we can do a paperback giveaway. And then the audio book, that would be my pleasure, thank you. Kerri Sparling 36:18 That would be amazing. And I will put a link to the giveaway page in this video and on the web page. But Stacey, thank you so much for your time for your perspectives for what you've given to the diabetes community and just being my friend, I appreciate that. Stacey Simms 36:30 Thank you for giving me an excuse to put lipstick on today. The giveaway is open until March 20. I will link up all of the information you need. It is at children with diabetes at their giveaway page. You have to go there you can't do it on social media. We're giving away a copy of the book in paperback and an audio book as well. I'm really looking forward to seeing everybody from friends for life and children with diabetes at their conference coming up at the end of this month in Indianapolis. I'm hoping the travel plans you know stay the way we hope we are watching The virus situation I'm really not sure what's going to happen with travel. But Fingers crossed right now that we are able to do this. And I really appreciate partnering with them on this giveaway and being selected for one of their storyteller interviews. So it's really fun. Okay, our next episode next week, we should be back to normal around here minimum normal being a relative term with me. But our next episode is going to be focusing on Lilly, Eli Lilly announced almost two years ago now that they the makers of human log are getting into the pump and pen business. So we will talk to them about how they're progressing on this connected system. It's a smart system and they are partnering recently announced with dex calm, so we will be talking to them about the progress they've made and what it means for the industry. That will be next Tuesday. Okay, I'm Stacey Simms. Until then, be kind to yourself. Diabetes connections is a production of Stacey Sims media. Benny 38:02 All Rights Reserved all wrongs avenged Transcribed by https://otter.aid by https://otter.ai
There's a lot of information about the Coronavirus but there isn't a lot out there specifically for people with diabetes. This week, we're releasing our weekly episode early to bring you what you need to know. Join the Diabetes Connections Facebook Group! Stacey talks to CDE Gary Scheiner, who lives with type 1 diabetes. They go over everything from protecting yourself or your child (spoiler: not much different from what you'd do without diabetes), having a good sick day protocol in place in case you or your child does contract the virus. They also talk about about how we can be ready for in terms of social disruption. In other words, should we be stockpiling supplies? Gary says no and explains why. CDC Coronavirus Information Page Gary Scheiner's Integrated Diabetes Services Check out Stacey's new book: The World's Worst Diabetes Mom! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription (please excuse grammar, spelling, punctuation) UPDATE: Enhanced Transcript Here Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Real Good Foods, real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom Announcer 0:21 this is Diabetes Connections with Stacey Simms. Stacey Simms 0:27 Welcome to a slightly different episode of Diabetes Connections as always, I am your host, Stacey Simms, but this week is going to be a little different because I just want to focus on one topic. we are going to talk about diabetes and the coronavirus. There is a lot of chatter online. There are a lot of concerns. I've taken a lot of calls and private messages. I'm sure you have to you know from well meaning family and friends who may not even have diabetes. And I thought rather than address it piece by piece, we would least start the conversation. I'm sure it will not end here. But we'll start it by having a really grounded and factual conversation with a diabetes educator who can address everything from what the virus itself means for a person with diabetes, what precautions you may want or may not want to take what's real, what's fake. We're also going to be talking about if there are societal disruptions, right? They've been talking about if stores are closed, if schools are closed, what should we be thinking about now, in terms of medical supplies, let me do a brief explanation of the corona virus I know most of you already know. But just in case you haven't heard of basic explanation, then we're going to get right to the interview with a certified diabetes educator and person with type one, Gary Scheiner. Coronaviruses and there is more than one they are a large family of viruses. And it can be it could be the common cold that they cause it can be much more severe disease. The reason we're talking about This one in a different way is because it is a new strain. It hadn't been previously identified in people. As many of you know, it started in China, but it is spreading from person to person, somebody who's actively sick can spread the illness to others. The first case in the United States was reported January 21, the first confirmed instance of a person to person spread within the United States right, which is different from someone traveling here with it was reported on January 30. You can find out a lot more from the CDC. I will be linking up the information page from the CDC and some other sources at the episode homepage at diabetes connections. com. I'll also let you know that a couple of days after the episode airs, I will be working to turn it into not just a transcript but more of a blog post so it's easily shareable. You know, a lot of people don't listen to podcasts, but they will read a blog post and I'd really like you to be able to share this with as many people as you can. Media outlets are of course All over this but very few are talking about what it means for people with diabetes. So let's get to it. My guest this week is Gary Scheiner. He is the owner and clinical director of Integrated Diabetes Services, a company that specializes in remote consulting for people who use insulin and we'll talk about how remote consulting and remote services may play a part in the response to the coronavirus. Gary has also been living with Type One Diabetes since 1985. And in 2014, he was named as the Diabetes Educator of the Year by the American Association of Diabetes Educators. Gary is always a wonderful source of calm, reliable information here on the podcast. And he really came on with very short notice and I appreciate that very much. One more quick thing. I'm going to jump back in at the end of the episode after the interview, I want to talk to you briefly about media and how you consume media, especially in a time like this. I worked in local TV and radio news for 20 years. So just some advice and some things to look out for. All right, here's my conversation with Gary Scheiner. Stacey Simms4:07 Gary, thanks for jumping on with pretty short notice to talk about this. I really appreciate it. Gary Scheiner 4:11 My pleasure. Stacey Simms4:12 I don't want to downplay anything I know I'm here to get the information in. But I have to say, I'm really concerned with what I'm seeing online. Are you hearing from people who have have these concerns in the diabetes community and, frankly, getting frightened? Gary Scheiner 4:27 Yeah, I mean, with good reason. This is a it's a pretty serious viral infection that's spreading around. It's not that much different from other viruses like the flu. And you know, the way we contain it and control it and prevented for that matter are very similar. But when people do get it, it's a tough one to fight. You don't have effective ways of treating it. Stacey Simms4:48 So we're going to talk a lot about diabetes here. Obviously, that's what we're all about. But let me just start by defining a few things. Do people with diabetes in general, get more viruses. Can you speak to that? Because I've been told time and time again, Type One Diabetes is an autoimmune disease, it doesn't mean that your immune system is suppressed, Gary Scheiner 5:09 if anything, our immune systems have that hyperactive, right, okay. But yes, people with diabetes generally are higher risks for all kinds of infections, both bacterial and viral, but it really comes down to the degree of glucose control that a person has. There are certain things that impair proper immune function and one of those is high blood sugar. chronically elevated glucose levels can impair immune function of the other things are things like lack of sleep and a very poor diet and very high stress levels. But for someone with diabetes who's not managing their glucose, well, their risk for infection is certainly increased. Stacey Simms5:50 Okay. So if someone with a higher frequency and elevated agency who is not getting for whatever reason, you know, access to healthcare or even their own education, if they're at higher risk What about people who have lower agencies who what I guess we would call generally better controlled or well controlled? Are they still at more risk for getting viruses, Gary Scheiner 6:09 it's less of an increased risk. But you have to consider glucose variability in the equation as well, which is a stress on the body, it seems to cause inflammatory responses. So you know what we're talking about. You can have a beautiful looking a one c but but have a lot of peaks and valleys, highs and lows throughout the day. And that sets us up for all kinds of acute and chronic health problems. Stacey Simms6:35 Okay, well, let's cut to the chase though. If I have two kids. I have a kid with a 7.5 A1C, for example, and I have another child who doesn't have type one at all. Do I have to lock one in the house and the other one is going to be okay? Gary Scheiner 6:46 Well locking her in the house might be a good idea anyway (laughs). I mean, yes, she is going to be at a little bit of an increased risk. We see the risk of these types of problems almost go up exponentially when the A1C starts getting up into the 9 or 10 range and with an A1C in the 6 or 7s, the risk is slightly increased. I wouldn't say it's dramatically higher than in someone without diabetes, but there is some increased risk. The other issue is managing the glucose if you do get sick, which becomes more challenging, but even more important, because when glucose levels are elevated, you're sort of aiding and abetting the infection that virus or bacteria has a lot of fuel to grow off of. So you're feeding the enemy in a way if your blood sugar is poorly controlled, when you're sick, running a lot of high blood sugars is going to extend your recovery time and cause your symptoms they become that much worse. Stacey Simms7:44 Well and that's tough to begin with because, at least in my personal experience, when my son gets any kind of illness, his blood sugar goes up. Gary Scheiner 7:51 this strategies for managing it though, teach most of our patients about self adjusting their basal insulin doses weather right A pub or shots, ramping up the basal insulin is a very effective way to combat the insulin resistance that's caused by the illness. Stacey Simms8:08 I guess step one, then is with Coronavirus or any illness have a sick day plan, right? Call your health care provider, call your endo if you don't have a sick day plan of attack, like you said, even raising basal rates doing other things. Yeah, Gary Scheiner 8:21 yeah, we try to it has to be customized a little bit depending on what kind of treatment every patients receiving. In the certain tenants, though, that applied almost everyone who's on insulin, the insulin dose is likely going to need to be increased, especially if they start noticing elevated blood sugar. ketone checks become pretty important. It helps us figure out the severity of the illness and the magnitude of insulin increase that's going to be required. Hydration is extremely important as well and people with diabetes are more prone to dehydration when they're sick and then someone without diabetes and adequate nutrition. Also, the body still needs energy to combat the illness so you don't want to starve a person when there's Yeah, they still need that. I think parents used to refer to this as the BRAT diet it's just easily digested simple foods that you don't have to work too hard to break down. I don't remember exactly what brats Stacey Simms9:18 I think I might get it wrong. I think it's bananas rice, apples toast, but I might have made that up. Gary Scheiner 9:24 Maybe apple sauce, Stacey Simms9:25 sauce, apple sauce Apples seem a little yucky when you’re sick. Gary Scheiner 9:29 we tell people you know all those foods they avoid because they spike their blood sugar. Those are the things you want to eat when you're sick. You know, the soft fruits, cereals, things like that. Oatmeal, things that just digest quickly and easily just to lessen the load on the body Stacey Simms9:45 with Coronavirus itself. In terms of sick day, do we know enough to know how it might affect people with diabetes yet? Gary Scheiner 9:53 Well, it'll it'll affect them just like it affects a person without diabetes, but in a person with diabetes It's gonna cause the glucose levels to rise as well. But in somebody with diabetes and without you're going to see some intense inflammation of the respiratory tract. One of the unique things about it compared to some other viruses like the flu is it can cause some severe shortness of breath which we don't always see with with other communicable common illnesses. So that's something to watch for. The preventive measures are the same. We do we would do the same things to prevent Khurana virus as we would know the common cold and the flu. No frequent hand washing is a very important thing. You know, I tell patients to be a bit OCD about your handwashing be very compulsive about that. Get a flu shot, because you can prevent any form of the flu it anytime that's beneficial. Be very careful around people who have signs of respiratory illnesses who are coughing, sneezing, etc. Keep your distance or just try to be very cautious about physical contact with them. extra hand washing Stacey Simms11:13 do those masks that people are buying do those work I've heard mixed results Gary Scheiner 11:18 they will only work if you're within coughing vicinity of somebody who is contracted the illness in general they don't work I mean walking around the airport cetera with these masks on is going to do virtually no good. These airborne germs can still get into your nasal passages and into your lungs and spread from there. So in general, the masks are not a very effective preventive option. It's more than the traditional stuff. You know the handwashing get your flu shot. Try to avoid indoor air too much research related air is no good to be in a humid environment that also is beneficial. If your house is dry especially in the wintertime use a humidifier. That's the first place where germs can penetrate into the body is the nasal passages and if they dry out due to dry air, you're kind of opening the door and marshaling a germs into your into your system. So you humid environment does help. Stacey Simms12:19 You mentioned handwashing, do hand sanitizers work at all, Gary Scheiner 12:22 they're a little bit beneficial, but just washing with soap and water is generally sufficient. It may not be convenient to do that anytime, anywhere. So carrying hand sanitizer after you've been like at a meeting, shaking hands, etc is a good idea. Even though places like the grocery store where your hands on the cart and you're touching a lot of things, using a hand sanitizer, there is a good idea. Stacey Simms12:48 One of the things that's been reported and this may change as we learn more and more about the coronavirus and and any effects it has here is that we may see more of a social and a societal disruption Then we do run the risk of actually contracting it. In other words, there may be times when your municipality says, you know, stay home, or they ask people not to travel or there's disruptions in trade. So one of the things that I've heard from several people, and again, this is something we are talking about, and that's something that has been announced. So as you listen, please take it as we're discussing it here as a potential should I be stockpiling diabetes supplies? Gary Scheiner 13:26 I just got off the phone with a patient in Cincinnati who asked me the same exact question that you brought up, should I be stockpiling insulin and strips and sensors and this and that, and right now, the answer is no. You really don't need to do that. The pharmaceutical companies are, manufacture things under very sterile conditions, and even their distribution channels handle things in a very sterile way. So you should be fine, as far as getting your supplies and getting supplies. That are guaranteed to be safe and clean. So you really don't need to be hoarding supplies at this point. Order response is kind of dangerous, because you may cause shortages for people who really need things. Stacey Simms14:15 That always worries me because that's exactly the problem, right? We think, Okay, I'm going to help myself, but in doing so you might wind up overdoing and hurting others. So just to clarify what you said, again, this is from social media, Gary, so I apologize for even bringing it up. But I have seen it I know others have as well. It's been these things have been circulating now that you know, we get so much of our medication from overseas and cheap stuff from China, that now you have to be scared of your medicine because of the coronavirus. I have no idea if there's any truth to that. I hate bringing up something right. We can't verify it, but I couldn't think of anything diabetes related that we can't track to where it is manufactured. Gary Scheiner 14:53 Right. Now the virtually everything we're using in the states is manufactured here. And you have to also consider The Coronavirus like any virus, it's a living organism, it has to be attached to something that is providing it with some form of nutrient plastic packaging and pills and bottles are not going to provide nutrients that keep a virus alive. So generally speaking, you don't have to be concerned about contamination that way. Stacey Simms15:21 Well, I think we, it's a great point, because I think we do have this sense when these scares come up, that these germs are catching a ride, and just, you know, hop it in the storage container. So I know it's kind of funny to talk about it that way. But you know, that's what I think a lot of us we have these misconceptions, so thank you for clearing them up. I don't remember who it was SARS or h1 and one. But when we've had you know, scares in the past, that's when a lot of grocery stores decided to test that order in advance, use your phone to order groceries and then drive up and pick them up afterwards. They did that because they were concerned that people would not go to the grocery store. So you don't know what's going to come out of these things. Because, you know, and now people do that because It's just super convenient and nobody wants to wait. Gary Scheiner 16:02 Right. It's the same reason we've been doing. Providing tele health care people for years now is its convenience. It's also it's it is a little bit safer, you know, going out and being in an office with a lot of other people. Yeah, you knows what you could catch. Stacey Simms16:18 You mentioned earlier at the very beginning of this interview, that people with diabetes you If anything, the immune system is overactive. And I know that, as you said, there are risks there are, especially with higher agencies, but does that overactive immune system do anything that we haven't talked about when it's hit with a virus like this? Gary Scheiner 16:38 Not really, it overacted in a very selective way. Okay. Yeah, it's only targeting those beta cells. It would be nice if it could attack viruses and bacteria we would be super humans. Stacey Simms16:51 That's what I was hoping you were gonna say that sometimes, you know, Gary Scheiner 16:54 humans who require insulin that's that would be great, but we don't quite have that level. Whole superpower just yet. Stacey Simms17:03 Not to say for stockpiling, but when we talk about sick days, is there anything that you would recommend people have on hand? I'll give you an example my doctor especially when it was very little would recommend we have full sugar popsicles, because we never kept those in the house. You know, not an a sick day, but they were great because a little kid who doesn't want to eat but needs insulin for ketones could do that. Anything else come to mind? Gary Scheiner 17:27 Well, something that I keep around is is something like Gatorade, or with kids Pedialyte, just beverages that have a low sugar concentration that are easily absorbed easily digest that even if somebody has an upset stomach is nauseous is weak, it those things provide some electrolytes. They provide a little bit of carbohydrate and fluids which is critical. So that's that's a good thing to keep around. It's pretty accessible. You could walk in any convenience store and pick that sort of thing up but other things Things like ibuprofen acetaminophen is good to have around in case there's fever. If they're Imodium is a good product for for diarrhea, just those kind of things are are helpful Keto Stix. Most people don't think they'll ever need them. But when you're sick, it's very important to be checking for ketones. That's something to get ahold of now, Stacey Simms18:22 does it matter if you use the sticks or the blood ketone meter? Do you have a preference as an educator? Gary Scheiner 18:28 Well, the blood meter is better, it's a more timely measurement. It'll take several hours for ketones in the bloodstream to show up in the year and to catch ketones sooner with a blood test. The blood test also gives you a more specific measurable value, the urine strips you're you're comparing different shades of pink and tan and it's a very subtle difference. So to be able to communicate with your health team and say I don't know how high it's pink it's tan, but you know on a on a blood meter You will get a specific measure of ketones in the bloodstream, you'll get, like 1.3. That's your number that's easier to share with your clinicians. Stacey Simms19:09 Let me ask you one more question about this. And it's okay if you don't want to answer but as a person who lives with type one, I mean, obviously, you educate many people, you are a healthcare provider for many people, but for yourself, when this kind of thing happens, do you worry more because of type one? Gary Scheiner 19:25 I really don't. I feel like the things I'm doing day in and day out, minimize my risk. You know, there's some things that we have control over in life and some things we don't, the things we do day in and day out to manage our diabetes, that's within our control. Whether those blood sugars look great or not, is not always in our control because of all the variables and it's the same thing with with an illness like a Coronavirus or the flu or pneumonia. You take certain precautions, you put yourself in a position to avoid them. But if you sit around just worrying about that that doesn't do any good. In fact, the stress that that cause can compromise your own immune system. So it's really best to just do the right things feel good about that, and then let the chips fall where they may. Stacey Simms20:12 Well, Gary, I really appreciate you helping me with good information and taking the time tonight. And I know, hey, you're in the middle of seeing patients. And so I appreciate you taking some time out for this. Thanks so much. Gary Scheiner 20:23 Oh, anytime for you, Stacy. Stacey Simms20:30 You're listening to diabetes connections with Stacey Simms. Stacey Simms20:36 I'll link up lots of information at diabetes connections dot com and as I said, I'll be working in the days after this episode airs to turn this into not just a transcript, which will be available immediately at the episode homepage, but also into a blog post because I think it's easier to read if you've seen our transcripts. I think they're really good compared to you know what is out there right now, especially with diabetes speak, but honestly Reading a transcript is not like reading a blog post, right? We don't talk the way we write. So I would like to be able to share this with as many people as possible. And I'll get that to you as soon as I can. (UPDATE: Blog post here) I mentioned before the interview with Gary that I wanted to talk to you about media for just a moment. And I think it's really important to think about how you consume media at all times. But especially at a time like this, when Let's face it, a lot of people are going to be talking about things that they know nothing about. So please, if you're watching your local TV news, I'm not disparaging anyone. I'm not saying that. Nobody knows what they're talking about. I'm saying watch and listen carefully. I've worked at these stations. I know how it rolls, they're completely understaffed. There are very few beat reporters anymore. So it's a very good chance that the person covering this story was covering City Hall yesterday and was covering the local sports team the day after that. It doesn't mean that they're smart. It doesn't mean they're giving you bad information. It may mean especially on the local level that they are overwhelmed. So I would listen more to the source than the reporter on this. I have already seen as this is social media, which is a different story altogether. I have already seen local reporters, and I'm sure this is happening on the national level as well say things like, I'm not sure this feels right. Or this is what they're saying. But what do you think? Right? And using words like seems like sounds like feels like, that's not a reporter's job. I don't mind if the doctor the local hospital is saying something like that to me, right? Or if the reporter is quoting someone, but if your local TV anchor starts talking about feelings, it's time to stop listening to the Medical News that they're trying to import. Same thing for cable news roundtables. I mean, I think we all know this, but I don't know a lot of people who will, you know, say it out loud. If somebody is telling you what they think or feel, and they are not a medical professional. I'd be really careful about listening to that. Nobody wants a panic here. I don't anybody's trying to hide information. But you know, there's a reason why all those masks have sold out even though everyone is telling us they don't work, right. I mean, Gary alluded to it, but I'm sure you've heard the reporting that as soon as the mask is moist from your breath, or you know, just from the droplets, it sounds gross from your mouth, you've probably got an hour before it's permeable, right? These are not surgical grade meant to be worn for a long time masks that your friends are walking through the airport with, I'm certainly not going to panic. I'm in a place right now where I am listening. I am learning. I am cautious. I think back to other pandemics that we've been through, and big Hey, red light flashing warning. I'm going to talk to you about how this feels to me. Right. So this is the opinion part where I'm just sharing what's going through my brain, not to give you any sort of medical advice. You know, I think back to the SARS outbreak, which seemed equally scary at the time, I think back to h one in one, which was in 2009 because it really impacted us It hit people in Our area and my daughter's summer camp, a four week session was canceled. Because there were people who were ill at the camp already they had figured out that that week of pre camp where people are working and setting up and the counselors are arriving, there were people with symptoms and signs and then a diagnosed case. So they canceled the session out of proactive safety. So things are going to start happening, things are going to feel scary. I think it's really important that we seek out good sources of information that can help us because as families touched by diabetes, we do have to think about different things. So I think in closing, let's rely on reliable sources. Let's be careful of what we're posting on social media. Let's look at the facts. Let's be smart. And let's keep learning footnote before I let you go. This episode was taped on Thursday, February 27. The Interview with Gary was done on Wednesday, February 26. I don't always timestamp the interviews and episodes like this. But you know, podcasting is not the best way. Breaking news source. So I really think it's important and I'll put those dates out there when I post on social media as well, because I want you to know when and where the information came from. All right, thank you, as always to my editor John Bukenas. From audio editing solutions. Thank you very much for listening to this different shorter episode of diabetes connections will be back on Thursday with one of the mini episodes and then next Tuesday back to our regularly scheduled programming. I'm Stacey Simms, and I'll see you back here on Thursday. Diabetes Connections is a production of Stacey Simms media. All rights reserved. All rounds avenged Transcribed by https://otter.ai
Have you ever had a doctor give you a "wake-up call?" or try a "scared straight" tactic? These techniques - and a lot more - blew up on Twitter recently. Stacey noticed that it also seemed that the doctors andhealth care providers who weighed in weren't interested in listening to diabetes advocates online. What's the disconnect all about? Full transcript below Check out Stacey's new book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription: Stacey Simms 0:00 This episode of Diabetes Connections is brought to you by The World's Worst Diabetes Mom: Real Life Stories of Parenting a Child With Type 1 Diabetes available on Amazon as a paperback ebook and audiobook at Diabetes Connections.com. Announcer 0:15 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:26 Welcome. This is one of our mini episodes, shorter episodes that I put together starting at the beginning of this year, just when I have something to say, news to share or anything that doesn't fit in the traditional longer format interview show that we do every week that drops on Tuesdays. I am your host, Stacey Simms, and I want to talk to you today about well, I really want to talk to your doctors about something, but we'll get to why and maybe how to share with them. I want to talk to you about what are doctors think of diabetes, and I don't really mean our endocrinologists Just to hopefully know what they're talking about and stay up to date. I mean, the other doctors that we see or we bring our children to pediatricians, the doctors, the dentists, you know what I mean, right? There seems to be this disconnect between what the diabetes online community which doesn't speak in one voice, I get it. But what we have learned over the years and what we talk about all the time, in terms of there's a hashtag language matters, right? There's this disconnect between what we as patients want, which is no blame and shame. Work with me, help me with resources, give me the information, let me make my decisions. And the physicians who many many, many times want to scare patients straight, you know, we're gonna give them a wake up call. We're going to show them how bad they're doing and that will make them do better. And this disconnect played out on Twitter recently and I want to share with you how it went and then I would ultimately was shared at a medical conference. Before I jumped right in though I do want to Say with those doctors who are you know, in the scare em straight kind of school, I really do think the intentions there are good. I don't know any doctor who wants their patient to walk around with a 14 A1C, you know who obviously isn't feeling well and is going to be in poor health. I don't think any doctor wants that. The question is, why don't some doctors listen to their patients more? Why don't they seem to believe us when we tell them what we think works and doesn't work. So that's my perspective. today. Let's go through what happened. There's a guy on Twitter. His name on Twitter is @DGlaucomflecken. He says he's an ophthalmologist, a comedian, and a speaker. On February 17. He tweeted, “Want to know why diabetic eye exams are so important. I can take a 28 year old with an A1C of 14, show her a picture of a normal retina, then a picture of her diseased retina. Then a picture of what her retina could look like in 10 years with an A1C of 14. Very effective wake up call.” And he posted the pictures that he had just talked about now. Kind of an innocuous tweet a couple of years ago, I probably wouldn't have thought anything of it. But and I was not alone here. There were some telling language in this that made me want to speak up. I'm going to link this up if you want to go through the Twitter thread. It is ginormous because a lot of people chimed in as you can imagine. I'm going to read a few tweets here. I'll just read first names from the people who tweeted this out. So these are the advocates who tweeted back Megan wrote, “As someone who works in eye casualty for a while and has type 1 diabetes. I have heard doctors have similar conversations. I then also seen patients walk away upset and distressed. Living with diabetes can be filled with anxiety. I find it best not to feel that scare tactics aren't always the best understanding and empathy for diseases hard to manage may be better.” Melinda wrote, “Did you ask her if she could afford her insulin and supplies? If she had a support network to encourage her or did you just decide to be Dr. Judgy Pants?” Melissa wrote, “Do you know if she went to her car and cried from helplessness like I used to after I exams with an ophthalmologist who had This kind of bedside manner? It took some time to find a doctor who could help me create a plan instead of send me off alone and frightened.” And then Mike wrote, “This mentality scared me into doing something better briefly as a teen. Soon enough, it led to hopelessness and years worth of higher A1Cs until love, actual good doctors and peer support inspired me to change how I lived” I wrote “Curious if there are any long term studies showing this is effective, other than the patient saying, Wow, that's a wake up call. What is it like for them? 10 years down the road? Did it help hurt make no difference?” And I actually wrote “not being sarcastic, genuine question” because you know, Twitter, but then the ophthalmologist chimed in back. And during all the time these advocates are saying these things, other doctors and other people are telling us how wrong we are. So the original ophthalmologist chimes in with, “I'm just showing people their own body part. I've never had a patient get upset with me for showing them pictures. I have taken up their own body part. I don't need a study to convince me to keep doing that.” Another doctor said “Patients Like pictures. We do the same with coronary angiograms. In cardiac patients, a picture's worth 1000 words, also puts in their minds the idea of the now and the potential future, good practice.” Another person a medical resident wrote, “I like it, it's hard to convince some patients without symptoms that keeping an A1C down to an arbitrary number is worth the effort of diet, exercise and expensive meds. This could help motivate many patients.” And then he writes “Also, it's not the author's job, the ophthalmologist job to make sure the patient has all of the resources needed to adequately treat the patient's diabetes during their brief eye exam. That's our jobs as PCPs.” So that's what he's going to be or may be already is I can't really tell from his Twitter bio primary care physician. Okay, so, literally, this went on for days, I kept getting notifications, because I kept chiming in, like, Are there studies like, oh, let's talk about this, you know, and, as you can imagine, it got pretty nasty sometimes. I mean, there's jerks in every Twitter thread on every side, so we're not going to talk about that. We're going to talk about the discussion and the disconnect because this is that fascinating. Most of the doctors really believe this is a good thing, I'm so glad that that primary care physician chimed in and said, “well, it's really not your job as an ophthalmologist to give them any resources or do more with them.” And this original doctor kept chiming in and saying, “No, I really do try to support patients.” It was just one tweet, you know, we don't know what he's really doing. So maybe he is, you know, talking to them more. What about your experience? In my experience with those other doctors, right, not the endocrinologist, the eye doctor, the dentist, even the pediatrician with Benny, they have no idea what diabetes takes. That's okay. It's not their specialty. I don't mind that. They don't know. I mind when they try to tell us more than they know. Right? Like, I had an eye doctor once Tell me, Benny was not in the room, he asked, “how long has he been diagnosed?” 12 years. I think at that time. “Well, you know, 20 years is when the complication starts showing up in the eyes.” And I actually said out loud because I'm a pain in the ass patient. And I said, Really? What was the last time you actually read anything in a medical book about diabetes? I tried to be nice, I said it kind of nicer than that. But it's it really, when did you learn about type 1 diabetes? And he said in medical school, and I said, and when was that, right 25 years ago? And really, when were those studies done? Right? If you're looking at a study from 25 years ago, that study probably followed people living with diabetes who had been diagnosed at least 10, if not 20 years before that. So your data is kind of outdated. And we know if you're a longtime listener of the show, you know, from studies like the EDIC trial, and many others, that eye complications, along with many other complications are way down and almost non existent for people with diabetes, who have access to good care and insulin. I mean, we know there's a whole other world out there, but we know these complications when care is given our way down. And whenever I talk about complications, I always want to say complications can happen even with the best care with diabetes. I mean, look at life - complications can happen with anything. So we try to do the best. We can see just other factors, you know, genetics, environmental, what have you. But with eyes in particular, I've talked to two endocrinologists in the past year, who say when they see a patient with any kind of eye issue under the age of 40, with Type 1 diabetes, they call everybody who's nearby, because they never see it. They want everybody to come in and identify it and look at it and see what the poor patient, but see what it really is all about, because they never see it anymore. So my little conversation with that eye doctor, hopefully made him rethink a little bit about how he talks to other people with diabetes. I've had the same conversation with my pediatricians when I feel like educating because sometimes it is absolutely exhausting. And I had to back away from the Twitter thread because of that, that it is exhausting to keep educating and educating. You don't know everything about type 1 diabetes, you're not a specialist. Thank you for pointing this out. But what can we do about it? What's the point? Why would you say you're going to be in trouble? I'm going to give you a wake up call. I'm going to scare you straight. Why would you say all those things Thinking the outcome is going to be positive? If you're aware of a study that talks about these things, and I was pilloried on Twitter for suggesting there could be a study, what would the control group look like? people who never get good health information, people who are never shown their bad eyes, or that they're going to lose a limb or blah, blah, blah, right? No, look, I don't create scientific studies. But you don't have to be a genius here. But why couldn't you something really short, that just gives you a taste of what we're talking about here? Do a six month study, right? Pick an age group to a six month study your 25 year olds with Type 1 diabetes, everybody gets the same exams, but your feedback is - you're doing terrible. You have to be nervous. We're scaring you straight, kiddo. It's a wake up call. Now go get better. And the other one is, Hey, I really feel like we could do more together. Well, how can I support you? What are the challenges you're seeing that are creating these issues with Type 1 diabetes, there may not be anything I can do to help but I understand that you're probably doing the best you can because type one is really difficult. And then the other one, the third part of the study would People who are told here are your test results. See you next, right with no emotional kind of feedback. Why couldn't you do a quick study of that and see what happens in just six months? My guess is you would see really interesting results. So better minds than me, thank goodness picked up on this and actually put it in a presentation at ATTD, at the international conference for advanced technologies and treatments for diabetes. This is the conference that I just talked to Kevin Sayer. That episode just aired a couple days ago. This is where he was in Madrid, Spain. So this is a huge international conference and this Twitter thread made it to a presentation, which shocked me. What shouldn't have shocked me is who was doing the presentation. This was the hashtag talk about complications presentation by Renza Scibilia and grumpy pumper Chris, who we've had them both on the show separately to talk about this and other issues. But this talk about complications slide that made its way to the presentation showed the original a tweet from the doctor, the ophthalmologist comedian, and they actually blacked out his name, which I didn't do here, because Twitter is public. And they showed the original tweet, you know, very effective wake up call. And then they put another tweet next to it. And I think that this is a hope that physicians might consider saying this instead. So let me read you the original tweet again. And then the one that they suggest. So the original tweet, “Why are diabetic eye exams are so important? I can take a 28 year old with an A1C of 14 show her a picture of a normal retina, then a picture of her diseased retina then a picture of what her retina could look like in 10 years with an A1C of 14. Very effective wake up call.” Here's an alternative to saying that “Diabetes is really tough, and you're managing as you can right now. Thank you for coming to see me eye screening is really important. We know having a higher A1C increases the risk of diabetes related conditions. Let's work together to try to reduce the risks.” Now I know some of you and maybe hopefully if you got your physician or not Doctor or dentist or somebody else to listen to this episode, it might sound very, you know, Kumbaya and woo woo. And, you know, let's work together. But I'm telling you, as the mom of a kid with type one, as a person who sees doctors for her own conditions, it is so much more helpful to hear this than to hear the other scary, effective wake up call. I mean, you know, when I go to my doctor, and I say, I'm really upset, I've been trying hard and gaining weight, you know, what I don't want to hear is “You're really fat. And we know that being obese can help lead to health complications, and higher increase of cancer. Because you know, you really want to watch out what happens, you have this risk and your family and blah, blah, blah. So just stop eating desserts.” What would be really helpful is, “Yeah, boy, it's really tough. I can see that your whole life, you've been a healthy weight. You're an active person who knows how to eat well. What's changed in your life in the last couple of years? How old are you? What is your metabolism doing? Let's sit down and talk about how things are changing maybe so that you can find a plan that might help you change” I mean, I just came up with that at the spur the moment, but it's so much different to here. Let me help you. And let's figure out what you can do to make this better rather than let me blame you and shame you and scare you. A lot of people tune that out. And if they're scared, they don't want to do anything to make it better because they lose hope. I really hope that some healthcare professionals who saw this on Twitter took a moment to stop and think about it. I know a lot of them responded. And remember kind of insulting frankly, calling the diabetes advocates, trolls and one person called the bats. I don't know if that's a UK thing, or I don't know what that was all about. And there were some people who got kind of nasty, as I said earlier, but I really hope that people who saw this conversation, maybe had a different conversation with the next patient that came into their office, maybe a person with diabetes, who saw the conversation had the words now to tell one of their health care providers. Look, this isn't helping me. I need you to speak to me in this way. Which is really, really hard to do. I will say before I let you go here that a lot of the physicians piped in with Well, my patients never react poorly when I give them this news, they all seem to appreciate it. Do the doctors not know that we talk to them differently than other people? Do doctors not know that some people like get dressed up to go to the doctor will really make sure that they are well groomed. I mean, it sounds silly, but you know exactly what I'm talking about. Right? doctors don't realize that we go to our cars. And as Melissa said, in that tweet, sometimes we cry, we call the friend and say you won't believe what happened to me. Or some people will tell a nurse things that they won't tell a doctor or they'll tell the front receptionist and they'll get the anger and so the doctor, people don't tell their doctor unless you're me and you're a pain in the butt. Very few people tell their doctor, hey, you're wrong. Or I don't like this. Or even Can we try something different? People don't talk back to doctors. And the fact that they don't know this… Come on, guys. You got to be better. You got to think about it. What do you think my way off base here? Were you part of that? Twitter chat, did it make you mad? Did it make you think? Let me know. You can always email me Stacey at Diabetes Connections. com. I'll put this in our Facebook group as well Diabetes Connections of the group on Facebook. I'd love to keep the conversation going. If you're a physician who has listened to this long oh my gosh, thank you so much. I cannot tell you how much we appreciate it when you take a moment to consider the other side of the stethoscope for lack of a better word. Let's keep this conversation going. Of course, if you think I'm wrong, I am the world's worst diabetes mom, I can live with that. And you can find out much more at the website diabetes dash connections.com. Please subscribe to the show on any podcast app or just keep listening through social media or however you found us. We appreciate that we're not going to tell you where to listen. We just hope you keep on tuning in. I'm Stacey Simms, and I'll see you back here next week. Unknown Speaker 15:57 Diabetes Connections is a production of social Stacey Simms media All rights reserved all wrongs avenged Transcribed by https://otter.ai
This week, catching up with Dexcom CEO Kevin Sayer – overseas at the ATTD conference. We talk about everything from a G7 update, new partnerships, in-app notifications and those sensors that you’ve probably heard about getting stuck. We also talk about competition, customer service and a lot more. Join the Diabetes Connections Facebook Group! In Tell Me Something Good, a Miss America contestant with T1D has pretty stellar week – and it has nothing to do with her crown and sash.. this is about engineering . Check out Stacey's new book: The World's Worst Diabetes Mom! This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode transcription (we're in beta so please excuse grammar, spelling, punctuation and the fact that AI can't figure out Dexcom speak) Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Real Good Foods, real food, you feel good about eating, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:21 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:26 This week, catching up with Dexcom CEO Kevin Sarah overseas at a big diabetes Technology Conference. We talk about everything from the g7 new partnerships in app notifications. And those stuck sensors that you've probably heard about or seen on social media. Kevin Sayer 0:45 There's a freak out factor but Let's face it, if that's your last sensor, that's not fair. And that's not right. So we noted it, we've seen it, we've read it. We've done everything we can to mitigate it. I'm very comfortable we’ll see this come down. Stacey Simms 0:57 We also talk about upcoming CGM Competition, customer service, direct to Apple Watch and a lot more. in Tell me something good on Miss America contestant with Type 1 diabetes has a pretty stellar week and it has nothing to do with her crown and sash. This is about engineering. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your healthcare provider. Welcome to another week of Diabetes Connections. I am your host Stacey Simms, we aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed with type one, just before he turned two. That was more than 13 years ago. My husband lives with type two diabetes. I do not have diabetes. I have a background in broadcasting and local radio and TV news. And that's how you get the podcast. longtime listeners know what the show is all about. letting some new people know because let's face it anytime we talked to dexcom or talk about anything New technology, we get a lot of new listeners. So welcome! If you've come for that, I hope you stick around and go through our almost 300 past episodes. Now, you can find everything at Diabetes Connections. com, we have a very robust search, there's the regular old search box on the upper right hand side. Or if you click on the episode page, there is a way to sort them by category. So if you want to see all the technology episodes are all the ones with athletes are all the ones about family or advocacy, you can sort them that way as well. Before we talk to Kevin Sayer, it is important to point out that as you heard the very top Dexcom is a sponsor of this show, and has been for a few years now. Our agreement means I talk about them in a commercial, which you will hear later on the show. But it doesn't mean that I don't get to ask hard questions. I really try to serve you as you listen, I try to serve you first. And if I'm not doing that this show doesn't work ethically. It's really important to disclose these things. And I always get upset when other either podcasters or bloggers or speakers don't do that. If you're a longtime listener, you understand how it works around here. Hopefully, I am doing a good job of serving you. But just to be clear, the advertisers in the show pay for the advertisement. And I believe in them, and I'm glad they're here. But they do not tell me what to say, in the show anywhere else on social media, or when I write a blog, that sort of thing. It's not that kind of relationship. So we're talking to Kevin coming up in just a couple of minutes asking your questions. I took a whole bunch of them from the Facebook group. We do have a Facebook group, it is Diabetes Connections, the group, very original, but very easy to find that way I thought, and that's really the best way if you want to ask these newsmakers questions I usually ask in the group and you can always contact me that way. That's coming up in just a minute. But first Diabetes Connections is brought to you by another sponsor, One Drop. It is so nice to find a diabetes product that Not only does what you need, but also fits in perfectly with your life. One Drop is that is the sleekest looking and most modern meter My family has ever used. And it's not just about their modern meter setup. You can also send your readings to the mobile app automatically and review your data anytime, instantly share blood glucose reports with your healthcare team. It also works with your Dexcom Fitbit or your Apple Watch. Not to mention they're awesome test strips subscription plans, take as many test strips as you need, and they'll deliver them to your door. One Drop diabetes care delivered, learn more, go to Diabetes Connections calm and click on the One Drop logo. My guest this week is Dexcom CEO Kevin Sayer. He is joining us from the International Conference on Advanced Technologies and Treatments for diabetes, which this year is in Madrid. So as we're talking to Spain here, please pardon any glitches or weird phone sounds that might pop up but hopefully all will go away. Kevin, thank you so much for joining me. I appreciate it. Kevin Sayer 5:02 Oh, thank you, Stacey. It's good to be back again. Stacey Simms 5:05 All right, let's start with the news that has already come out of the conference. And that is this official partnership with Insulet. With Omnipod. Can you start by talking a little bit about? And I'll be honest with you, I'm a little confused. I they're already in clinical trials for Horizon. I thought this agreement was a done deal. Tell us about the agreement with Insulet. Kevin Sayer 5:23 Actually, we've been working with Insulet since 2007. This is a long time relationship. And most of our work in the past was then under the form of a development agreement to jointly develop products together. The announcement this week is the culmination of all that development work over time to basically say, look, we've entered into an agreement whereby we know how we're going to commercialize our joint systems. And also, as we have entered into these development agreements with our partners, we typically do it one generation of technology at a time, we made the g7 system available to the Insulet team as well. So once they get a rising launch with G6, as the G7 system gets ready to go, it will be will be able to migrate over to that system as well. So that that was the purpose of this announcement and the other. You know, the other reason for it, there is so much going on in the interoperability world right now. We index coms as well, it's important that everybody knows that we have these relationships. And this relationship is very close and near and dear to us. So we therefore thought the announcement was good on something we have been working on for a very long time. Stacey Simms 6:29 When we look at interoperability, you've mentioned already G6, G7. Can you just take a step back and give us a little bit of an update on that so Insulet will go with their horizon, which is not out yet. That'll be g six and G seven tandem with control IQ also g six mg seven Kevin Sayer 6:50 Tandem has access to G6 right now. We've not yet signed a G7 agreement with them, but we'd expect to do that and then they're very near future. We've also signed a relationship with Lily and their connected pens and their platforms, whereby they'll have access to G six and G seven as well. We have several other smaller relationships with some of the smaller pump companies or others where they have to six, access not a lot of g7. At this point in time, we have to look at that strategy over time and decide what approach we're going to take with partners. The interoperability world creates some very interesting business scenarios, which I wish I knew the answer to all of that, but it ranges anywhere from let's say, one person and go or two people and just work with them to maybe a few or just open it up to everybody. And I think it evolves over time. For us right now. We think it's important that we support certainly as many as we can, but offer even a heightened level of support to those who are going to have commercial offerings in the near future as speaking towards Tandem and Insulet. In particular, the control IQ uses g six and we read certainly very good things about that is that since we've been out there. And so we'll work with them all. This is going to evolve over time. All the answers are available. Sure. Stacey Simms 8:07 Okay, so let's talk about control IQ quickly, because that's been in the news quite a lot lately. We just started it about three to four weeks ago. It's been working very well for my son, but Dexcom owns the algorithm, but used to be called or maybe still is type zero. Kevin Sayer 8:23 So let me give a little clarity on the fundamental or the underlying science and the calculations behind the algorithm are in fact, developed a type zero and owned by Dexcom. Tandem has filed that as their controller. They have done some user experiences some modifications as to how it is integrate into their pump, but the fundamental algorithm is owned by Dexcom. And type zero. That's correct. So the sensor in the algorithm driving it are Dexcom properties. Stacey Simms 8:49 This is a little bit more esoteric than I expected to get in so quickly here, but what's it like being in the algorithm business and Do you have plans to perhaps get some other algorithms in Your tool kit, if you're like us, not the only one out there Kevin Sayer 9:02 know when we've looked at those, and we love our team in Charlottesville, we have some decisions to make there too. So what we're going to do long term with the algorithm and how available we're going to make it, it is a great business opportunity is a great skill set for us to have as well. With that team in Virginia, we've learned a lot about our sensor, their opportunities to take the science has been developed for automated insulin delivery and apply it to decision support for those who really don't want to use a pump all the time that we could possibly provide some good decisions along the way that would help them better manage their diabetes in the manner that they want to. I think there are a lot of opportunities to do that here. What we're going to let it play out, we're still early on in in that one. They're certainly next generation algorithm to come after they control iq version of it, which is kind of a step up or there's even less user interaction where you possibly won't have to announce all the meals and Everything that will be a little more aggressive on treatment and require a little less user interaction. And we got to figure out what our strategy is going to be to do that and how we're going to go with that. So we're kind of in the algorithm business, but sensors are still our biggest, you know, that's where we pay our bills, the most important thing for us, when we saw that asset was kind of available out there that we felt it was something that we just needed to control. And then we're thrilled with it. And quite frankly, it's worked out well for me, too, because they're right away from us in San Diego. And we can very much collaborate very quickly, since we have access to those scientists and they have access to us. Stacey Simms 10:39 So let's talk about the g7. We've talked about it before. Can you give us an update, what the features will be? What makes it different and the timeline? Kevin Sayer 10:49 Well, as we've talked, I'll start with the timeline, as we've said in our public statements, will be starting a typical study this year. Our hope is have a limited launch in 2020 The limited line for that have a significant impact on our financial results. So in the public world, we don't say a whole lot about the limited launch, we intend to do the full ride in 2021. And I don't have a perfect time frame yet, I will tell you, the mitigating factor will more than likely be our ability to scale it up. As you know, from your community. We learned a lot in 2019, about scale and all those lessons were not necessarily positive, the Dexcom. But they were good learnings. It was hard, we underestimated some things when we rolled to six out the way we did and I don't know that even if we delayed three or four months like to its original plan launch date, that we would have solved those problems because the demand for G six was so much higher than we anticipated. It would be you know, in the past, we could overcome 20% more demand than we have because we didn’t fill that many sensors. So yeah, if you’re manufacturing 2 million sensors. We can come up with another 200, 300 thousand, that's not a problem. But when you use the numbers we're at today. becomes a problem. So if anything, we learned anything from the big six launch, we are going to be prepared to scale g7 when we launch it, because when it comes, nobody's going back, just like nobody's going back to G five g six features of the product, as we've talked about before it much thinner, smaller profile, disposable electronics. So there's not a transmitter component anymore. There's no assembly of anything before you put it on, you literally take it out of the box, press the insertion device into your skin and hit the button and you're gone much smaller plastics profile. from an environmental perspective, patients will be glad to know that we get that comment frequently on our current system about all the plastics length of where we're shooting for an extended wear period. I have to tell you, we will balance the extended wear period against the accuracy and performance of the system with respect to iCGM standards. We know we have to have this as an iCGM to talk to these automated delivery systems and sometimes you make trades offs. Length of wear versus accuracy, as most people know, at some point in time, the longer you wear a sensors, the more difficult it is for to perform perfectly. One of the things that I often that isn't understood about g six, I can give the perfect example, these standards set by the FDA on iCGM are difficult. They're not simple to meet. And literally the way that g six algorithm works is if through our and our analytics, we look at the sensor signal and determine that that sensor is about to become less accurate than it should be, under iCGM rules, we turn it off. So there's a perceived lack of reliability from some of our patients on the sensor, when in fact that's not the case at all. We're turning it off intentionally. And that's very often associated with physiology. You know, people's bodies are different, and even sensor sessions can be different based on how much activity you have or where, the place you insert the sensor. So we're hoping for an extended To 15 day, where it certainly wouldn't be less than 10. We will go either way, but we need to make sure we meet the criteria. The sensor is much shorter than g six. So it will be a shorter sensor from our user experience so far and our preclinical work we've had nothing but great feedback on that. Stacey Simms 14:17 What does that mean? Is it a shorter wire or a shorter device, smaller, shorter wire Kevin Sayer 14:22 Shorter wire with the direct insert, not angle, but it is straight in but it's very, very short. Stacey Simms 14:33 More to come on the g7 and many other Dexcom issues. But first Diabetes Connections is brought to you by Real Good Foods, good foods, and their philosophy is all about keeping it real with food with community and with each other. And if you go on their website, you can find out so much more about the product real food, high protein, it's not about chemically made protein powders. This is about food, chicken cheese Right, low carb, grain free and zero added sugar. They keep adding products. We are big fans of the original pizza and the poppers but they've added a breakfast sandwiches with sausage or with bacon, cauliflower crust pizzas, chicken alfredo, other Italian entrees. They just keep adding more great stuff, find out more, go to Diabetes Connections calm and click on the Real Good Foods logo. Now back to my interview with Kevin and we were talking about the g7. You mentioned the the longer were balanced with their performance Do you expect the g7 to perform differently to perform I hate to say better but to use the criteria you were talking about with the iCGM? Do you expect fewer issues with either Physiology or the sensor sensing that something is wrong and then turning off. Kevin Sayer 15:57 That is our hope and our belief? We have learned So much from G six, as to what we can improve and make better It's been one of the scientists said to me the other day, he feels like he's working in a semiconductor factory. We're learning that much about sensors these days, as we're preparing for this setting to launch this product, we may not even be able to get all the things we've learned into the first version. But I think there'll be a couple of iterations whereby I know the extended wear will come and I know that that the reliability will be there. One of the things that we put around ourselves as a criteria is to significantly improve the reliability percentages. And we were experiencing on G six today, both on G six going forward and on g7. It just doesn't work. Patients have to return to the sensors, because they fall off or don't last long enough. We have to make that experience more consistent. So we're very focused on that. Not just with you seven, but with the six improvements as well. Stacey Simms 16:51 All right, this next one, I just have to get it out. Kevin, I feel like a broken record. But can we talk about direct to watch what's going on? I know there's been a lot of holdups but is that something that’s happening? Kevin Sayer 17:03 No, and we're working on it I appreciate you asking again, is technologically very difficult a Bluetooth protocols on the watch are not the same as the phone. And I go down to r&d and I asked the guys a question, every time I talk to you tell me what's going on. And it's not only difficult from the Bluetooth perspective, there's an experience perspective, it's also difficult with respect to the alerts Can we make it worse, audibly loud enough for by somebody can hear them? What happens when you take your watch and you put it on your charger and it's your primary displaying walk away, there's some where issues and some issues around the watch to create a little bit different experience and required a bit more fun on our part, and quite candidly, a lot more complex engineering. And we have done firmware updates to get us closer there. When we're done. We'll announce it. The other thing I would tell you is even if we weren't finished today, I wouldn't tell anybody I'm not trying to tell anybody till every transmitter in the field is was compatible because it will be different. version of the firmware on the transmitter. And while it was still be seamless on your iPhone or your Android phone, it will look the same if we announced direct to watch, and then we have a bunch of transmitters in the field that don't go director will watch, we're creating a tech support issue that will just again lead to patients being upset. So we're working on it, it's just a ways out and all these opportunities or engineering, things we have to get done are not just caused by Dexcom, either. There's Apple things that we just have to understand better. They work very closely with this. They're very helpful. It's just taking a lot of time. Sure. Stacey Simms 18:34 Well, thanks for the update on that. It's nice to know, you know, there's always a fear that these features may not get rolled out right. There's always a fear that and I know you know, this is the type one community that we see CGM makers and other technology companies looking at the the enormous type 2 market which has very different needs very different wants, and that we will be left behind so the watches I mean, it's a little bit dramatic to put it in that way. Looking at direct watch, but you understand what I'm talking about, right? Kevin Sayer 19:03 Yeah, I do. And I let me respond to that a little bit, please do. You're right. There are a lot more people with type two diabetes, type 1 diabetes, but there is nothing that we do for people with type 1 diabetes, that can't create a great experience for people with type two diabetes. I would argue that the good things we do for type one patients translate better over to type two then heading down a path with lesser accuracy, or lesser connectivity or fewer features. You're much smarter to make a product performance is superb level and then make the changes software related rather than then system related. And rather than sensor related, which is the way we're doing it now. Or you know, there was a big fear that g7 would be a type two product only hired that from a lot of patients because barely our partner been a great partner has been very much focused on type two where they're on duo, a managed diabetes management program, but that's not the case. We We will launch our g7 system with his ice ice jam label current plans are a legit person in the type one space. After that, even with G six, we can adapt the G six platform to a type two patient that has a different software experience. It doesn't detract at all from what we do for our core market. And where we sit today, the most important thing to do is to get a like if you get accuracy and performance and reliability and consistency, you can take that anywhere. And that meets our type one patients need and will also gives us the business flexibility that we need to go forward. But we're not going to do that if we were looking at something for another market. And I'm speaking way out in the future. today. It might be another platform that would measure multiple analyze that wouldn't have ice jam accuracy for glucose, but you'd have some combination of pick for analytics glucose, ketones, lactic acid, some other one where it's maybe 20% lack less accurate all four but you get a picture of everything. That's more of a diagnostic As we look at sensors in the future, that's something we would consider. But that's, you know, that's advanced r&d and something that we would look at. We don't have an intention of going a different direction right now. We believe that the features we have we can migrate to type two without compromising our current patient base. Stacey Simms 21:18 All right, let's talk about some specific type one stuff. And let's talk about following up. And no pun intended there. I apologize on the share and follow issues from late last year, you put out a very sincere apology, you really seem to have taken some steps. I appreciate that. I'm sure it couldn't have been too easy to put that video out, and we appreciate it. Kevin Sayer 21:40 But no, actually, I didn't tell you that that did not bother me at all. We couldn't put it out until we knew the answers. But that's the way we run this company. And that's the way I will always behave. If we do something that doesn't work. You own it. You don't hide and I wanted to do the video of the day with day one and Gemma calming me down, I wanted to write a letter or reduce something I was wasn't happy that we could not go faster. But now we will always behave that way will never behave any differently. Stacey Simms 22:13 I have some questions. Go ahead. Alright. Alright. So my first one is, you've updated the website and I'll put a link in the show notes where people can go to check in just last week, there were a couple of issues that were resolved quickly. But I noticed that what happened to me I'll give you my personal story. I noticed on my follow app for my son that we had lost signal, there was a brief notification, I apologize. I can't remember what it said. But something like you know, server error, but something came up a little teeny red line on the app. I cleared it without even looking at it too closely. And I went on my way because I don't My son is 15 I don't look at the follow up as much as some other parents do. But then on a Facebook group, someone said go and check the Dexcom page because They're updating the situation there is an issue. Great. So we all went. But my first question is, you will have announced, I believe that you're working on push notifications of some kind, because it didn't occur to me and maybe shame on me to go to the website. So can you talk about the timeline for that and what those in app notifications will be? Kevin Sayer 23:19 Sure. But let's go back a step we said and I said in the video, two things we're working on it immediately is a server status page and a product status page on our on our website. So you can go to the Dexcom website, and you can see how the system is functioning. And you can see that clarity is functioning Share and Follow how they're functioning, and we give an update to those in real time, will then implement before in the first half of the year, we're two months into the year almost before the end of June, we will have in app messaging to whereby if there is a share or follow or clarity or whatever issue we can send a message directly to the patient and are the followers servers are down, this is what's going on and it will come in the app won't come through text messaging yet. That'd be something we would do a little bit later. And in all fairness, I don't know that we have everybody's phone numbers to whereby we can push text, but we can't push to the app into the app users. So that'll be here by by mid June. As far as anything going on Recently, there were a couple times when the status page was yellow. And they worked through those quite quickly learning from what's gone on in the past and got that resolved. And we're now establishing the boundaries for what example what yellow server status means, on our webpage. Because when we started this and just adding totally, one of the the apps had yellow and it's happened to two clinics in the whole country. But since it happened to two clinics, we made it yellow, just in case it happened anyplace else on reality. That was the two words had happened and we dealt with it so we're being rather cautious is causing anything that we We will make it yellow over time, we'll put, you know tighter boundaries around that. But we will make it yellow. We'll work through the issues. We've improved our internal communications, I knew something was going on from the minute that thing went yellow, I was getting notifications. And I was I was traveling, so it's going much better. And we'll build a structure up and continue to make it better. That's all I can tell you. So we'll keep improving. Stacey Simms 25:24 And I know that you'll be researching this, but I'll give you some patient feedback real quick is that please don't text me. You don't need my phone number in app notification. Kevin Sayer 25:34 Okay. Yeah, I would rather not understand. balance that with everybody else because you're catching a flight for the airport, what happens? You get a text message. So the expectation since we're on your phone is we have the same infrastructure we just don't Stacey Simms 25:53 do what I don't get a text message from the airline. I get a notification from the app. It shows up on my similarly you get a text from Because you probably, Kevin Sayer 26:01 I guess it depends I Yeah, I know. Anyway, you have to be more like everything else that people experience. Stacey Simms 26:08 Exactly. Okay, so I have a couple of questions. Many of these questions that I've asked have actually already come from my listeners. Of course, we all have a lot of the same questions. But here are a few that people sent in. Rachel, as we're staying here on the follow up. Rachel wanted to know, if you're still working on having the follow app getting same notifications as the primary app, because all of us parents, especially with older kids, now, we never know when the sensors is expiring when the transmitters expiring, is there any work being done to get the follow up to be a little bit more robust for parents work any caregiver? Kevin Sayer 26:43 Yeah, we're continuing to work on the follow up and add add more to it. I think it'll be continual development cycle and will continue to add more. I will tell you from the teenager or the college students share a perspective the last thing they want is their parents. Getting The alerts from their app. I know that firsthand, because I talked to a couple of No, no, no, no. And so we try and balance it all. We will make the the share system more robust as time goes on. Because if we learned anything thing from the server outage, we learned how important share was. It is very important to everybody. Stacey Simms 27:19 Yeah. And all due respect, when you have the first update, when you could make it for 10 followers. You know, not every kid wants everybody their school following them either. I mean, but these have to be parental decisions with good education. So, you know, I think I get what you're saying. But these are all, let's just see, these are wonderful problems technology has created. I try to leave them alone. Alright, so. Okay, the next question came from a few people. And Gosh, I don't know if you can answer this, because this is more anecdotal, but we've been using the G six since May or June of 2018. And it seems to me Just in the last two months, I have seen pictures and heard anecdotal reports of sensors getting stuck at insertion to the point where in my smaller I have a smaller local Facebook group. People are posting the things they have used to whack the sensor because you're supposed to, apparently on Facebook, you whack it with a wooden spoon to get it to release or there might be a button underneath that you can push a pin in. But this is something that we haven't experienced, but that I've seen in the last two months. Are you aware of this? Is this an actual problem that Kevin Sayer 28:33 just so you understand, we monitor every complaint and everything that's coming very closely, we have seen a rise in those instances. Fortunately, it doesn't result in a patient getting bad data or anything bad happen. We just have to replace their sensor. We've identified the root cause of that and we've taken mitigations to correct that and that should come down going forward. We have this this Not this specific issue, but the fact is when we see things rise in the complaint base, we have a group of sustaining engineering group that jumps on these issues and determines where they came from. we've analyzed this, this specifically and we've implemented improvements and you will see that decreasing significantly over the next several months that should go away. Stacey Simms 29:20 Okay, cuz I know the good news is there isn't as readings issue, but the bad news is there's a freakout issue. Kevin Sayer 29:26 There's a freakout issue and let's face it, if that's your last sensor, yeah, that's not fair. And that's not right. So we notice it, we've seen it we've read it and we have we've done everything we can to mitigate that I'm pretty I'm very comfortable we’ll see this come down. Stacey Simms 29:41 Okay, but I'm glad to hear that. Is there actual advice of what to do if it happens? Is there the release underneath? I'm assume whack it with a spoon isn't something that you recommend? Kevin Sayer 29:54 Now we’re in anecdotes and I can’t speak to that. The easiest thing is call us and we’ll get us a new sensor as fast as we can. Stacey Simms 30:02 I gotta ask. I got a couple of questions from listeners who are asking about outside the United States. Obviously our listeners are USA centric, but there are many, many, many in the UK and Australia and Canada. Can you talk a little bit about jif six and G seven, internationally. Kevin Sayer 30:19 So g six is in Canada now. We launched it there in the fourth quarter. We also launched in Canada, any commerce platform reimbursement is not brought in Canada. Many of the patients have to cover the costs on their own. So we have tried to make it easier and Canada is the first place we've ever had an e commerce platform where patients can literally go online and buy their sensitive transmitters have them shipped directly to them without having to deal with this has been a very efficient and a tremendous growth driver up there. A lot more people are getting access to speech him in Canada because of that. That's been a great experience. g six has been available in the UK for quite some time. And again, the UK business is I want to say three reacts when it was two years ago. So we're doing very well there also, reimbursement is coming, but it is sporadic. It isn't everywhere. We spent a lot of time with government authorities pleading our case, the importance of CGM, and we found that educational process great. they've jumped on board and learn a lot Australia, g six is coming. I know it's not broadly rolled out, but it will certainly be a 2020 product there and should do very well in Australia as well. Government reimbursement, for CGM in Australia has gone very well. Here today. It is growing nicely, are all US strategy. We really have three pillars that we're working on, you know, first those countries we're reversing, that is good. We gotta broaden there. We have to increase access in countries where reimbursement is sporadic. And the UK, Spain where I am Italy, some of those places is very sporadic. Some regions it's reimbursed others it's not. Yeah. And then there is where we don't play it all. Yeah, we're very well In Central and South America, or Mexico, where we've got a filing in Japan virtue six, but we're not launched there yet. Stacey Simms 32:08 I'm gonna start this question right here. And it's my fault because I'm running over time. And I want to get one more question in. So I apologize. One more question. Okay, so diabetes mine ran a column recently that was headlined 39 potential new continuous glucose monitors for diabetes. Now a lot of these are pie in the sky. We know many won't come to market, but they went through and listed a bunch of new CGM that are going to be your competition. My last question is about customer service. Talk to us about how you're going to improve, maintain, really try to over serve in terms of customer service, because you know, that in the last year or two as the launch of the G six was a challenge, because of supply, customer service has got to be a challenge too. So my last question is, assure us that it's going to be okay from a customer service standpoint. Kevin Sayer 32:58 Well for us, it will be Well, I will tell you the one thing we've learned this year, more than anything else is scale. It's very difficult. And I just throw some numbers at you. Two years ago, we announced that the JPMorgan conference we had 270,000 active patients. That means we have patients that we know are buying and using sensors. Okay. I announced in an earnings call a week ago that we have 650,000 active using sensor patients. You can imagine the number of sensors we have to produce above and beyond that the number of phone calls we take, we will make customer service priority but scale is a huge challenge here and it is not cheap. We will spend hundreds of millions of dollars getting the g7 factory up and running before you see a sensor. We will invest hundreds of millions of dollars in G six at the same time, getting the factory automated getting the sensors more reliable. At the same time as we looked at the customer experience. There's a lot of things we can do. We have formed an entire customer experience Team at Dexcom over the past 12 months To go back and look at how we interact with people is 43 screens to start up the G six, new from scratch. Why is it 43 screens was because it was 43 screens and we did seven plus or G for whatever, we did the same thing. We're go back and re evaluating all those things to make it easier. I believe also on the customer service side, we do need to get better. But we need to get better a couple of ways. Product reliability is the first thing if we make it so you never have to call them customer service gets that much easier. But inevitably patients are going to, I believe personally that software can alleviate a lot of customer concerns. As we look to the future we look at putting tech support in the app to whereby I'll give you an example if your sensor poops out at eight days, it says Hey, your sensor quantitate days hit yes and we'll send you a new one. We're looking at things like this to make it much easier for our patients to work with us. We We purposely went offshore to set up a customer service center because quite frankly, we could not hire enough resources here to Do so that is going better as well on the distribution channel and make it simpler. We're going to the drugstore with future products and moving g six there. So there's not as much interaction as well. But I can tell you the customer service piece is every bit as hard if not harder than the technology piece. And we take it that seriously and we will over the next several years. Stacey Simms 35:18 Seven, thank you so much for spending some time with me. I apologize to your people because I kept you too long. But I always appreciate talking with you. Kevin Sayer 35:25 Thank you very much. Unknown Speaker 35:32 You're listening to Diabetes Connections with Stacey Simms. Stacey Simms 35:38 I couldn't get to everybody's questions from the Facebook group. I apologize for that. But as you heard, we ran out of time he was doing back to back to back interviews. I don't know who was next in the queue. I'm sorry. I did make him a couple of minutes late. But just a couple of quick thoughts on on my talk with Kevin they're listening back and I do listen back to almost every interview before we air it. I sounded so offended about the text messages. Do not like that I don't know about you. I want text messages to be from my family, friends and emergencies. I'll take text messages from school, and maybe some alerts. But I want my apps to notify me through the app. And I want to be able to opt in and out of that. I know a lot of people disagree. You know, if you listen to the show for a long time, we don't use share and follow like a lot of parents, I have never let any school personnel follow my kid. We do not see the need, but that is us. So you know, I understand Dexcom has to do its market research and make everybody as happy as they can. The other thing that occurred to me is that when he talked about going direct to watch, and not announcing it, right, waiting till all the transmitters are out there and then announcing it. My first thought was and so many of us who listen are part of the DIY community. I don't know what you do or how you do it. But the first thing that occurred to me was it's going to take five minutes for these DIY folks to figure out that different transmitters are out there. So I'm relying on you to let us all know because I have a feeling As soon as they start shipping whenever that is and he didn't indicate when, you know, I mean really how long it's going to take people to notice that it's direct to watch because I know there are people out there who every time they get a new transmitter their check up next, tell me something good with one of my favorite past guests, Sierra Santa said, we will tell you what she is up to now she was in the Miss America Pageant just a few years back. But first, as I mentioned, Diabetes Connections is brought to you by Dexcom. And here's what I have to say about Basal IQ. Now, you know, we switched over to control IQ. But the first iteration of this the first software was basal IQ, the Dexcom g six tandem pumps software program. And when we got it, we started doing less work for better results. Should I say that again? less work, better results with diabetes. Vinny always liked seeing his CGM on his pump. But you know, before this change that was really just kind of a cool feature. I mean, he really didn't pull this pump out just to check a CGM. He looked at his phone, but there was some serious sauce and the basal IQ that kept many more steady. His timing range increased significantly when we started on basal IQ. And his agency, you know, we don't share specific numbers, but not only did it come down, it stayed down. It has been the same, really for more than a year. Now, as I think about it, it's just been great. Of course, individual results may vary. To learn more, just go to diabetes, connections dot com and click on the Dexcom logo. Right, tell me something good. Really My favorite part of every show. Send me your good news stories for those of you not familiar with Sierra Sandison, and I think most of you probably are, she was in the Miss America Pageant in 2014. I had to look that up because I can't believe it's it's been that long already. But she went on stage first in the Miss Idaho pageant in July of 2014, with her insulin pump, clipped to her bikini bottom, you know, when they had the swimwear competition, and then she created the hashtag Show me your pump, which went viral. And I didn't know this till recently, it was NPR as most popular online story that year. Well, then she walked the runway again at the Miss America Pageant with the insulin pump again on her bathing suit. And you know, we all went bananas. Well, since then Sierra has gone back to school. She's at Boise State University. She's at the College of Engineering there. And last week, she won her team. She's on a team for this, she won invent for the planet. This is a competition where engineering teams come up with inventions and solutions to make the world's a better place. So they only had 48 hours to do this. It's a pretty wild competition. I will link up more information about it so you can see exactly what happened there. And I'll put some pictures in the Facebook group too. But it's a team looks like a team of five people and Sierra posted. We slaved away at the 48 hour event for the planet competition this weekend and it paid off. We had so much fun and so little sleep, but then it gets even better. Couple of days later, she was recognized by the Idaho Society of Professional Engineers. As the number one student in her class of mechanical engineers, she writes, I am so humbled and still in shock this week seems too good to be true. Thank you to everyone who helped me get to where I am today. I hope to make you proud and keep wearing pink while doing it. Every time I talked to Sierra, you know, it's easy to forget that she is brilliant, right? We look at the bathing suit, which is how most of us first saw her and we're distracted by that. I mean, I'll be honest with you. When I look at Sierra, I'm always thinking about how bad my hair looks because she always looks gorgeous. Her hair looks great. Her makeup looks great. I have joked with her about setting her up to do a clinic for moms at like a friends for life conference that because we all need to walk around with a ton of makeup. I don't know she doesn't all the time either. Just because it's fun, right? It would be kind of fun to learn how to do pageant makeup like that. I'm getting way off topic, but it's So easy to forget when a woman is beautiful that she is also brilliant. And I think that that is so important to keep in mind. And I'm so thrilled that she is so far forward in sharing all of these accomplishments and not compromising what she enjoys, which seems to be engineering and wearing pink and looking fabulous. So Sierra, thanks for continuing to include us in your journey. I cannot wait to see what you do next. Just let us know when you're taking over the world who would appreciate a little bit of a heads up if you have a Tell me something good. Please send it my way. You can email it to me Stacy at Diabetes Connections. com reach out through social media the Facebook group is a really easy way to do it every once in a while I'll post and ask and other Facebook groups but please seek me out I would love to hear from you. Help me spread the Good News in our community. As this episode goes live, it is the last week of February I don't know January dragged by February flew by I'm afraid to The page to March that we have a lot going on. I have three appearances for the book tour. I'm going to be in Wilmington, North Carolina, Winston Salem, North Carolina, and then over to Indianapolis, for the friends for life conference there. I am getting requests for the fall already definitely booking things in September. I think I have something in December already. So if you'd like me to come speak to your group, reach out. I'm trying not to do too many of these a month. I'm trying not to travel every single weekend because I still do have Benny at home even though my daughter's in college. So it's a lot of balancing juggling going on, but I'm loving every minute of it. Our next episode is coming up on Thursday, I'm going to be talking about a little bit of a Twitter kerfuffle. I don't know if any of you saw this if you're on Twitter, but there was a bit of a disagreement started by an eye doctor, a disagreement between how many doctors see their duty to give patients a wake up call and how people with diabetes actually view that wake up call and a real big gulf between these two groups on this One Twitter chat, unfortunately. So I want to share that with you and maybe how we can get our doctors to listen a little bit more. Alright. Alright, thanks as always to my editor john Kenneth from audio editing solutions. Thank you so much for listening. Joining me, please spread the word about this show. Word of mouth is the best way to grow a show like this. We can get more good information into the hands of people who really need it. So post it on your Facebook page, tell a friend who's touched by diabetes about it. I'd really appreciate it. I'm Stacey Simms. I'll see you back here on Thursday. Unknown Speaker 43:37 Diabetes Connections is a production of Stacey Simms media. All rights reserved. All rounds avenged Transcribed by https://otter.ai
When a child is diagnosed with type 1 diabetes, most of the time the parents are told that T1D won't stop them. People with diabetes play sports, climb mountains, pursue acting and singing careers and much more. But what happens if a young child is scared to get back in the swing of things? Stacey has advice for a family she met whose little boy is so afraid of low blood sugar, that he's sitting out his beloved soccer games. Check out Stacey's new book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode transcription: Stacey Simms 0:00 This episode of Diabetes Connections is brought to you by the World’s Worst Diabetes Mom real life stories of parenting a child with Type 1 diabetes available on Amazon as a paperback eBook and audiobook and at Diabetes Connections.com. Announcer 0:21 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:27 Hello, and welcome to a minisode of Diabetes Connections. Today I want to talk to you about a question that came up. When I traveled to Maine. This was a couple of weeks ago, I visited a group called the Maine P-Pods. It was a really fun event where I did my World’s Worst Diabetes Mom presentation. And we also had a presentation from Dr. Howard Wolpert who is a renowned endocrinologist and he talked about carbohydrates and really did a good medical presentation as you would expect. And then the two of us - this was really cool -. We got to Do q&a with the audience. So you had me, the mom, the lay person partnered with a pretty terrific endocrinologist. And then there were other healthcare professionals in the audience who were there kind of for support and popped in as well. I'm pretty sure they were also there to make sure I didn't go off the rails, because they hadn't heard me speak before. And when you're billed as the World’s Worst Diabetes Mom, I think they want to make sure you're not going to give the world's worst diabetes advice. I want to share with you a question that came up that I think probably comes up more often than we realize. This was a mom and dad of a recently diagnosed I probably a couple of months in I'm sorry, I don't remember exactly. But my impression was, let's say six months ago, maybe four months ago. This was a six year old, and this six year old had been so excited to play soccer, really wanted to play soccer, loves soccer, can't wait to join the soccer team. But now with type 1 diabetes, the mom is sharing that the six year old is terrified to play soccer, because he is afraid of going low. And it's really breaking her heart, because he has a brother who is playing soccer and is doing just fine. So the question was, how can I get my child over his fear of low blood sugars? And I thought this was a great question. Because what we normally get is all the rah rah cheerleading of, you know, our kids can do anything, and diabetes won't stop you and get right back in there. And, you know, that's probably what happens. Most of the time if the parents go along with it, right. It's for the parents to say, right, we're going to get right back in here we go, here we go. But this can't be the only child who is frightened for some reason. So what's going on? I asked her a couple of questions. And I told her not to answer because, you know, there's only so much information you really want to put out publicly right and I don't want to pop psychologize that's really the turn of phrase, but you know what I mean? I didn't want to play psychologist when I'm certainly not in a, an educated position to do so. But no, it had the medical people there to back me up. I thought it was on pretty safe ground. So I asked her, What is he afraid of? Is he just afraid of that awful feeling? Right? He doesn't want to feel low? Is he afraid that it's going to be embarrassing that he has to leave the field for juice or that his mom is going to be checking his blood sugar? You know? Is he embarrassed about it? Or he wants to hide his diabetes? Or is he truly afraid that something bad is going to happen that he's gonna pass out on the field or he's going to die from a low blood sugar? And then I asked her, again, not to answer in front of all these people. But where do you think the fear is coming from? Because a six year old is not going to decide that a low blood sugar is dangerous. Somebody's going to tell him this. And if that's what he's afraid of, where did that fear come from? Right. Take a cold hard look. Is it coming from the parents? Is it coming from a YouTube video he said did an older kid at school telling something? I had a situation with Benny years ago, I want to say he was seven years old at a day camp. And if you're new to the show, my son Benny was diagnosed right before he turned two. He is now 15. And we've been all sorts of crazy situations. But he was about seven years old at a regular day camp. And he came home and he said, Mom, there's a kid at Camp who said, If I keep sticking my finger, I'm going to bleed to death. can that happen? So these kids get this fear, sometimes just from other kids who are just being kids, that other child, maybe thought he was helping? I mean, who knows? Right? Obviously, Benny and I had a whole conversation about how actually, the more you check your finger, the longer you will live, the better you will feel and the happier everybody will be. And he went back to tell us friend No, not gonna bleed to death. All right, one problem solved until the next one. But my point is you don't know where the information is coming from. So these are a couple of things to figure out. And then what do you do? Well, I suggested that they talked to their kids care team, talk to their endo about this talk to their diabetes educator, because there's a lot you can do to try to avoid those lows. The most common suggestion is usually, to adjust your basal rate if you're using an insulin pump two hours earlier, you can adjust the insulin rate or just take the pump off right before you play and expect your blood sugar not to go down. It takes about two hours for those basal rates. Part of the reason and I was very interested, I hadn't heard this before. Dr. Wolpert from the stage also answering this question said that there is often insulin on the end or in the canula. So even if you take off the insulin pump, that insulin is going to drip in over about two hours, which is one of the reasons why they recommend that you start adjusting two hours earlier. And I know you're thinking the canula that holds barely any insulin. But remember, this is a little kid, and there are very insulin sensitive adults as well. But when you think about a six year old, what does a six year old even weigh 50 pounds Maybe I should probably look that up. But you know what I mean? They're pretty tiny. Even a big six year old really isn't that big, and a little bit of insulin can make a difference. That's just one thing you can do. Give a bigger snack, try to set things up a little bit better. Tell the coach, I mean, this is six year old soccer player, tell the coach he's going to play for 10 minutes, we're going to ease our way back into it to even play for more than 10 minutes. I mostly remember soccer at five and six year old as being five minutes of play. And then 20 minutes of snacking. I remember and I think I wrote about this in the book to the hardest part of soccer was that it was all snacks when they were little kids. And Benny never even ran around the field that much. His favorite part of soccer, was trying to stand as far back on the field. He only played when he was five and six years old, standing as far back in the field as he could kicking the ball as far and as hard as he could and trying to make a goal. And he did that a couple of times. So our soccer experience was a little bit different. Something else that I thought about later but didn't think to suggest the time is talking to This child about professional soccer players with Type 1 diabetes. And I'm mad that I didn't think of this because this was a trivia question in my game show. I want to say last year, maybe the year before I do a game show every summer at friends for life, the big diabetes conference. And this was a trivia question. There is a footballer right a soccer player in Spain, Nacho Fernandez, he has type 1 diabetes, and he's the first person with T1D to score in a world cup. Nacho was told that he needed to quit the sport that his days were done. footballing days were over when he was diagnosed at age 12. He said, No, thank you, I will continue to play and he did so and he has done another world stage. There are lots of footballers and professional soccer players with Type 1 diabetes. So you can look that up. If you have a child who's concerned you to find those people playing the sport or doing the activity. And there's a lot of articles about these people. Sometimes they'll give you tips and tricks and what they do and what they eat. It's really interesting. They can do it on a professional level, you got to have the confidence that your six year old can run around the field on a Saturday afternoon for a couple of minutes. And then the final thing I'll say, and I did give this advice to the parents at the at this conference was, sometimes you just have to be the parent and tell them, it's time to do this. You're going to be okay. And we're going to go play soccer. I know it sounds harsh, but it's okay. And it's okay to say you are going to go low, and you are going to go high. And that's just diabetes. Maybe it's, you know, an age appropriate conversation about you are your own science experiment. We talked about that a lot with Benny, you know, we're not looking for perfection here. But we're going to learn from it this week. So we can do better next week. And we're just going to keep learning and learning. We're going to make mistakes. We're going to make different mistakes next week, but I'm here you're safe. It's fine. Let's do it. And this is probably not a great example. But it's the first thing that pops into my mind when we say tell kids to do it sometimes. When Benny was potty trained. And please don't tell him I told this story. But when he was potty training, my daughter was potty trained in three seconds. She turned to that was it were done. She was Piece of cake. And Benny turned to I said to him, Hey, let's do this. Do you want to like, do you want to use the potty? And he said, No. So I said, Okay. And every couple of weeks, I would say, Is it time? Do you want to, you know, and he was saying, No, finally, when he was two and a half, I said, What am I doing asking my toddler? So I said to him, today's the day we're going to do it potty training. And he was like, fine, because right, and we did it. I mean, it was unbelievable to me looking back that I asked, stop asking, just tell them, and sometimes that can work. Now, obviously, you have to kind of figure out what feels right for your family. And please, the best advice I think I gave here is to talk to your endocrinologist and your care team. But I really believe that if our kids are scared to do something because of diabetes, that fear is coming from somewhere and it can be addressed. So we it's up to us. Find the resources to get them over that fear. You're not a bad parent, if your child is scared, right? You're not a bad parent. If this lasts for a while, we're all just doing the best that we can. And sometimes, like with Benny at camp, the information, the bad information is coming from someplace that you don't suspect. You have these conversations. Keep trying, keep encouraging. Sometimes you're just gonna tell them this is how it is. What do you think? Do you have any advice for this family? You can always let me know I'm going to put this in the Facebook group at Diabetes Connections, the group you can email me Stacey at diabetes dash connections.com. Let me know if you think it this is off base. If any of this is helpful. I am the World’s Worst Diabetes Mom after all, so keep that in mind if you're thinking about taking any advice that I offer, but I will say the health care providers in the room back to me up, I'm answering this question and added some information. In fact, the best thing I almost forgot the best thing a pediatric endocrinologist stood up and said, I want to reassure these parents, although I think it really is the kid. I don't think this fear was coming from these parents. They really wanted to get him back on the soccer field. He said, I want to reassure you that in the thousands of kids I have seen and that I think he was like 30 years in practice. He says, nobody's ever passed out on a soccer field. And certainly, nobody's ever dropped dead on a soccer field. He said, it just doesn't happen. And we have to get over this fear that our kids are on death's door, when they're diagnosed with Type 1 diabetes. They are not. He was amazing. You know, those are important to treat. You want to take care of business, you got to do what you gotta do. But don't be fearful. I really wanted to cheer. I was so excited to hear him talk about this. Because I think a lot of endos are reluctant to say those kinds of things, and certainly not on a public stage like that. It was great. So let me know what you think. Tell me what your opinions are on this. How would you encourage a kid To not be fearful and get right back into sports, he will a lot of adults are reluctant to exercise because they're concerned. So what's your advice? Coming up on our regular episode next week, I am scheduled to talk to the CEO of Dexcom. I do have a lot of questions. I know you have a lot of questions as well. I will be putting a post in the Facebook group there as well soliciting and finding out what everybody wants to talk about. We'll see how much time I get and we will try to get through as many questions as I can. So that will be our regular interview show coming up on Tuesday. I'm Stacey Simms. I hope to see you back there then. And until then, be kind to yourself. Unknown Speaker 12:45 Diabetes Connections is a production of Stacey Simms media. All rights reserved. All rounds avenged Transcribed by https://otter.ai
This week, a look at a way of eating for all types of diabetes that sounds – frankly – really hard to do. But the guys behind it say it’s the key for lowering insulin resistance for all types of diabetes. Check out Stacey's new book: The World's Worst Diabetes Mom! Robby Barbaro is the co-author of a new book called Mastering Diabetes. We’ll talk about what he actually eats now and why he’s so passionate about this. He has a pretty compelling story. Join the Diabetes Connections Facebook Group! Robby mentions Volumetrics (more here) In TMSG – when an avid scuba diver is diagnosed with type 1, she finds a way to get back in – and under – the water. Plus, a little bit of a control iq update for us – we’ll tell you how it’s working out. Sign up for our newsletter here This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode transcription Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes, by Real Good Foods, real food, you feel good about eating, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:21 This is Diabetes Connections with Stacey Simms. Stacey Simms 0:27 This week, I look at a way of eating that sounds frankly, really hard to do. But the guys behind it say it's the key for lowering insulin resistance in people with all types of diabetes, even so, it seems a little extreme. Robby Barbaro 0:42 And I come down to the Christmas Day meal and I literally have a pyramid of bananas. We're talking four bananas on the bottom and three then to the true pyramid of ripe bananas. And that's how the practice was done. They were just shaking their head like this. They were kind of laughing and thinking this is not And Alas, there's no way because they've seen me try out different diets over the years. Stacey Simms 1:03 Robby Barbaro is the co author of a new book called Mastering Diabetes. We'll talk about what he actually eats now and why he is so passionate about this. He has a pretty compelling story in Tell me something good. When an avid scuba diver is diagnosed with type one, she finds a way to get back in and under the water. Plus a little bit of a Control IQ update for us. We'll tell you how it's working out. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of Diabetes Connections. I'm your host Stacey Simms, so glad to have you along. We aim to educate and inspire by sharing stories of connection when it comes to type one diabetes. My son was diagnosed right before he turned two and that was 13 years ago now. My husband lives with type two diabetes. I do not have Diabetes, but I do have a background in broadcasting in radio and television local news. And that's how you get the podcast. A lot to talk about this week, we will get to Mastering Diabetes in just a moment. But I want to give you a quick update on our experience transitioning over to tslim X2 insulin pump along with a Dexcom G6 continuous glucose monitor. And then the Control IQ is the software that is in the pump. If you're not interested in this, if you're not using this kind of pump, or if you are on MDI or, you know, just skip ahead a few minutes. I do have time codes as always in these newer transcribed episodes for this year. So you can open the episode homepage, open the notes, and you can skip right ahead to the interview. But if you want to know about our control IQ experience, here's how it's going. We were able to get the new software very early On we got it I want to say the third week of January, we did not get it without issue. Benny's pump was one of the few that could not be updated by plugging it in. There was some issue with the software update that was already in the pump. And even everybody who had that version of the software, only a very small percentage, my understanding couldn't actually plug into the computer and update. Anyway, tandem sent us a new pump with Control IQ on it. And of course, I was to send the old pump back. So we updated immediately it started doing its thing. I will go into more detail about after a month of using it, we're going to sit down and talk about it. But Wow, it really made a difference right away. The problem was that it was tanking him he was going low, overnight, every night. And I try to not make changes until about two or three days. Right. We have to kind of see how things go. You don't want to overreact. So he went low the first three nights. And then of course we changed it because I'm talking down to 40 you know for extended periods of time. We cut way back on basal. We also cut insulin sensitivity, which really shouldn't affect it when it's in that sleep mode because the sleep mode doesn't give boluses. But we cut back on that anyway because it seemed to be having some issues with corrections during the day really making him go lower than he should have been having to suspend insulin. After that. It really smoothed out. He was using less insulin. He was in range in a very much increased amount of time. You could see his numbers were coming down. It was really cool. Even on a day where he completely forgot to bolus for a big brownie in the afternoon. He went way up, but he didn't stay up. And if you've done that, you know that at least for us, you know if you have like, I mean really, let's be honest, 50 uncovered carbs 40, 50 uncovered carbs. You're going to go up to 300 and stay there for a while. But Control IQ. He did have to bolus but Control IQ brought him down really quickly. It was great. But unfortunately, it didn't stay great. About two weeks in his pump, the brand new pump that they had just sent us with the update, gave us one of those alarms that you can't reset. Oh my goodness. So I was actually on my way out of town. That was the weekend I was heading to Maine. And Benny was going to be leaving that afternoon for the two day wrestling tournament. So again, he could have done shots, but we were just like, oh, my goodness, you know, what are we going to do? Well, I hadn't actually sent that other pump back yet. It was on my list of things to do, I promise, but I hadn't gotten around to it. So luckily, he put on the old basal IQ pump, the previous software, my husband called tandem, and you know, they went through the troubleshooting is this an alarm that can be cleared? It could not. So they overnighted another Control IQ pump, and I put return the pump on my list of things to do yet again, but then, okay, so then he is at a two day wrestling tournament. It was supposed to be one day, unless they won, which they did, which meant they went to the state championships which spoiler alert, they won. So it was two days of travel and crazy food and then celebration food. parties. Oh my goodness. And as you know if you've been listening while Benny's not actually wrestling this season, he's actually more like the manager because he hurt his knee. So he's doing great, very exciting to be a freshman and have the first school state championship for the wrestling team was very, very cool. But anyway, alright, so back to the pump situation. So then on Sunday, he's home. He's got the new control, like pump on and then early Monday morning, I want to say five o'clock in the morning, transmitter failure. Not you know, we're not sure not sensor error, not sensor failure, transmitter error for the Dexcom. So Benny turned it off. I didn't even know he just kind of clicked off and went back to sleep until six. I mean, he got one more hour of sleep. That transmitter was two weeks old. It's not supposed to crap out that early, of course. So we had to pull the sensor the transmitter put a whole new set on. Of course I called Dexcom. They replaced everything. But then we're another day really a day and a half between everything that was going on with that. Control IQ so I can say what it's working thumbs up when the technology's not working, which will happen, right? He's fine. I mean, we could always go back to shots, certainly, but who wants to do that? So little frustrating, but we moved forward. The only advice I have if you're about to start Control IQ, if you're thinking about it, if you haven't made the switch over yet, is, I would highly recommend and please talk to your endocrinologist before doing this, make the change for insulin duration, change over to five hours now, because that's not negotiable on the Control IQ system. And most of us have it set frankly, incorrectly, because we're making up for it in other ways. A lot of studies have been done in this I'm sure if you're familiar at all with Control IQ, you've heard this, but if you haven't, one of the things we did was set the insulin duration to five hours several weeks before starting. And I think it really helped us in the transition. Something to think about something to talk to your endo about and then you just Gotta be patient, make changes slowly and let it do its job. It's so hard when we're used to managing these dumb pumps, right and do this, do that and stay on top of that. To let it do its thing is very difficult. Okay, let's get to Mastering Diabetes in just a moment. But first Diabetes Connections is brought to you by Real Good Foods and new brand new from them stand alone crusts, so you can create your own pizza but whatever toppings you want, but this is a cook and serve pizza crust, grain free. It's made with cauliflower. I mean, you know Real Good Foods. They're delicious. high in protein, low and carb grain free gluten free. Lots of varieties. I mean, they have the pizzas that have great toppings on them. They have stuffed chicken, they have breakfast sandwiches, huge variety. I like it because it's really easy to find in my grocery store freezer, but you can go online and order the whole shebang. Find out all the different products that they have and mix and match. Find out more go to diabetes dash connection. dot com and click on the Real Good Foods logo. My guest this week is one of the authors of the new book Mastering Diabetes. These guys also have a podcast, Robby Barbaro and Dr. Cyrus Khambatta say, focusing on lowering insulin resistance through food is the key to living well, with all types of diabetes. Robby lives with type one. And I promise he's really not saying anything out of bounds here, like, you know, this is going to get you off insulin or this is a cure, but there are some unconventional thoughts that he shares in this interview. As always, when I talked to people who are focusing on a particular way of eating, and I do this all the time, we've talked to people who eat low carb people, you know, high fat keto, people who are making these claims on the podcast. This is not something that I verify or confirm during the interview, and do my best to give you all the information. But again, before you make any changes, please talk to your endo. I really did enjoy talking to Robby. Here's our conversation. Robby, thank you so much for joining me. I am so intrigued by everything I have read and heard. Thanks for coming on, Robby Barbaro 10:09 Stacey. It's really an honor to be here. I love your show. And the fact that I'm getting to be on it is just really exciting to me. Stacey Simms 10:15 Oh, thank you so much. We have so much to talk about. I have so many questions for you. But I want to start at your beginning. You had a fairly typical from what I seen onset of type one diabetes as a teenager as a tween, really, but you were diagnosed by your brother. Robby Barbaro 10:31 Yes, it truly is a fascinating story. So I'm on January 26. That'll be the day that I have lived with Type One Diabetes for 20 years. So I was 12 just about to turn 13 and I complained to my mom, I said, Mom, I am thirsty all the time. I'm going to the bathroom all the time. I think I have diabetes, just like Steve so I have two older brothers. The middle one Steve was diagnosed with Type One Diabetes eight years prior to me and I was pretty sure I had diabetes around said no, no, I don't think you do. Don't Don't be silly. I said, Okay, fine. And then eventually, she went out of town to go look at homes in Florida where we eventually moved. So it was just myself and my middle brother at home. And she called the check in and she said, Hey, how are things going? I said, Mom, I couldn't sleep last night, I was cramping. She said, Okay, go upstairs. Use your brother's bug because meter test yourself. And I was well over 400. And my brother said, right there in there, okay. You have Type One Diabetes pack, your bags are going to be the hospital for a few nights. So we went to the regular general doctor, they ran a few tests. And I remember the doctor coming in said, Yep, you have type one diabetes, we're going to send you to the hospital. And that was the first time I had seen my brother crying, as you know, as an adult. And he said, Oh, man, just sorry. You have to experience this too. And my parents flew home the next night. And this mother thing that really stayed with me as my dad saying, Don't worry, it's just an infant. convenience, you can still do whatever you want in life. And that was really the mentality that my parents had. And really, they were very, very supportive, very encouraging. And really let myself and my brother really take charge of our diabetes care. And, you know, we were we were both already, you know, type a people that really were on top of it, and we had good medical care from the Mayo Clinic. So it didn't really crush me. You know, I really had a really supportive environment had the tools I needed, and it just began a new life with Type One Diabetes. Stacey I'm really intrigued by your brother's reaction because on the one hand here, you have a brother who's nine years older than you you look up to him, I'm sure and you see that he's probably doing pretty well with this. So on the one hand, it's okay I'm gonna be fine. But then he gets emotional. And he says for you, so that's the had to have been tough to digest as a kid, like I'm going to be okay but there is the sadness too Robby Barbaro 12:55 play the sure the whole thing was honestly it kind of like, I can I sort of remember certain bits and pieces. I remember driving in the car and talking to my parents on the phone. And just it didn't really, it didn't hit me like I didn't kind of fully understand what was going on. But I guess I just ease into it. And at some point, I guess you just you don't really have a choice. It is what it is, you know? Yeah, Stacey Simms 13:19 no doubt. So the years go on, I assume that you were treated more traditionally in terms of you start on insulin, you're eating particular diet, you know, your parents are keeping you busy in school. But you had other health issues as a teen Robby Barbaro 13:35 I did. I had plantar fasciitis, which was frustrating. I was a competitive tennis player. So that's really a painful, painful feeling in your feet when you're walking and trying to run so I would wear these big blue boots at nights to try and help with passive stretching to do plantar fasciitis. I had chronic allergies are all the time, so I took Nathan x and Claritin. D and I would still get sick. As a teenager. I had cystic Acme, which was really frustrating and I tried everything microdermabrasion treatments, laser treatments, oral creams, like oral medical or eye creams for my face and oral medications. Eventually, they put me on Accutane. And that's one of the most serious drugs you can take for acne, your parents actually have to sign a waiver, because some people have committed suicide and that drug. So I also had warts on my feet. So these were just a collection of you know, frustrating, I think, standard symptoms that a lot of people have. Wow. Stacey Simms 14:33 So when did all the fruit stuff start? When did you decide? Robby Barbaro 14:38 I mean, I'm sorry. Yeah. I mean, I'll tell you the journey to get into the fruit stuff. So growing up, this is when I was living in Minnesota, you know, doing standard diabetes care. I went to the Mayo Clinic in Rochester, Minnesota with a Vincent cloud, and we would go there and they just had a great team. We had an endocrinologist. I had a dietitian, I had a psychologist. So it was a team effort. There. And the key thing I remember learning from them was like using a log book and actually got quite good at that. But I had standard care. And my dad was into selling supplements through a network marketing company and getting exposed to what they were teaching and some of their educational material was the very beginning of me really considering Okay, wait a minute, there's something to nutrition there's something to diet outside of just following a standard American diet, not really thinking about it. So that was the beginning. And it was a slow evolution of learning. Okay, wait a minute, you know, trying to avoid additives or foods like MSG, like that's good. That's a good idea for your overall health. And I slowly progressed. Eventually, I came across many different lifestyles. But as I was on this journey of learning as much as I could, I came across a book called natural cures they don't want you to know about by Kevin Trudeau. Now, I'm not recommending this book. This guy ended up in jail. Yeah, there's, there's some things I'm not recommending it. But I came across this book, and it planted a seed in my mind that you know what, maybe it's possible to reverse type one diabetes. If I just eat as healthy as humanly possible and I take care of my body. Maybe I can put myself in such a healthy state that my body will regenerate new beta cells. And now it's just it was the theory the hypothesis. Okay, wait a minute. Like, I know other people haven't done this. But hey, somebody has to do it first. You know, for example, Roger Bannister was the first person to run four minute mile. And before he did, the smartest people in the world said that's impossible, your heart will explode. And once he did it, other people started doing it. So I do think we're gonna we're gonna figure this out at some point some way how to get beta cells to work again. Naturally, I do believe that but that's not happened. So I go down this mission of Okay, I will do anything and everything to give my body the best chance of healing itself. So I started learning about the concept of fasting. So fasting is when you when you go to bed at night, you're doing like a mini fast and you in the morning you eat breakfast you're breaking your fast and healing and regeneration happens over that time. So it's okay, you know what type of dietary habits can I do to increase the chance of my body healing itself. And this led me to try summarize, the first thing I tried was a Weston a price foundation diet, and that was eating a lot of grass fed beef. They advocate for raw milk, I remember going to farmers markets, and I would buy milk for cats because you can't sell raw milk to humans. And again, I did see some improvements as I cleaned up my diet and got rid of any sort of junk and processed food. There was definitely some improvements but I didn't see anything specific happen to my diabetes health or my insulin intake or my blood glucose control. So I continue to learn more and learn more, and eventually, I came across a dive by the name of Dr. Gabriel cousins and He was in a movie and he produced a movie called raw for 30 days. And in this movie, he showed how people following his protocol, which is essentially a plant based ketogenic diet. He didn't call it that at the time because ketogenic diets weren't really popular, but that's what it was. I would eat lots of nuts and seeds, lots of vegetables and oil. Like that's basically where my calories are coming from on this phase one, Gabriel cousins program. And you gotta remember, everything I'm doing here is with this mindset of Okay, I'm going to reverse type one diabetes, I'm going to heal this is a strong live a strong motivation. So at this point, I am a freshman in college at the University of Florida. Stacey Simms 18:42 Okay, I'm gonna stop you right here for the question. So you're trying this experiment, you're experimenting on yourself, basically, I mean, to boil it down. And were you still seeing your endocrinologist? Were they telling you dude, you know, you're losing weight. Let's be careful was anybody giving you a push back at that point? Right back to Robby will find out what is endo said. But first Diabetes Connections is brought to you by One Drop. getting diabetes supplies is a pain not only the ordering and the picking up but also the arguing with insurance over what they say you need and what you really need. Make it easy with One Drop. They offer personalized test strips plus you get a Bluetooth glucose meter test strips lancets and your very own certified diabetes coach. Subscribe today to get test strips for less than $20 a month delivered right to your door. No prescriptions or co pays required. One less thing to worry about. not that surprising when you learn that the founder of One Drop lives with type one, they get it One Drop gorgeous gear supplies delivered to your door 24 seven access to your certified diabetes coach, learn more, go to diabetes, connections calm and click on the One Drop logo. Now back to my interview with Robby and I'm asking him if with all the weird things he was doing with This end of gave him any pushback. Robby Barbaro 20:06 Okay, it's a great question. Yes, I would see my endocrinologist every three months you know, you got to get your prescriptions and whatnot. And here's the interesting part I think probably a lot of people with type one are gonna have a similar experience which is unfortunate but they never asked me about my diet. Oh my god, I kid you I kid you not I have been through except for the Mayo Clinic Mayo Clinic they were very detailed. They asked me everything I need, they log it, they kept track of it, but after that, they had two different endocrinologist in Florida. And I think I've had one different one in Los Angeles and not a single one of them not a single appointment. Have they asked me exactly what foods do you eat? Not one. Stacey Simms 20:48 You know it's interesting because I don't think our endo and Benny's a child obviously. So he hasn't really asked me what do you eat but the they sent us to a dietitian or a nutritionist years of years ago. We never really followed up but You know, he's asked us just kind of like, you know, what are you especially when he was little? What are your favorite foods? What's your favorite fruit? What's your favorite vegetable? You know, he would kind of play. He was great with kids, you know, and ask him about that. But we definitely talked about food and he knows how we eat. So that's really fascinating. All right, so you're on the sly, nobody's following up on you. You're doing fine. Robby Barbaro 21:17 Yeah, I mean, and the thing the key thing was, I think, from the endocrinologist perspective, give them a little bit of credit, I guess, is that my a one sees were always quite good. Stacey Simms 21:27 There was no need for them to go into. Robby Barbaro 21:29 Yeah, exactly. There wasn't a need to like pride and how can I really help this guy? I appeared healthy. I all my other blood work was fine. My agency was fine. I think they did. Like Okay, he's doing great. Like, let's let's just call him the next patient. So at this point, this is where it gets interesting. Here's where I love to talk about the diabetes nuances because your audience because you're gonna understand this stuff. At this point. I'm a freshman at the University of Florida. And again, my mindset is how can I you know, take less and less insulin and eventually not need any That's the goal. And in hindsight, what I realize is What really matters is if you're taking lesson lessons one that's only really significant in regards to reversing type one diabetes, if you know you are also starting to produce more of your own, if your your C peptide level is increasing, if your beta cells are, you know, starting to become functional again, that would be a good thing. But in this case, I was dropping and dropping man. So I took at this point, I was taking 10 total units of insulin per day, I was using only fast acting insulin. And I was actually still doing it through MDI, which I would not recommend, but I would actually take small injections throughout the night, and I was eating 30 grams of carbohydrate per day no more than 30 grams. So my carbohydrate insulin ratio was three to one, and that's a metric of insulin sensitivity. So you can calculate your 24 hour insulin sensitivity by taking your total carbohydrate consumption, dividing it by your total insulin consumption. This was good like I was getting so excited. Eventually I reached a plateau I thought it was dropping and dropping and dropping that just fader on 10. And the problem was, I had terribly low energy and I was losing weight. That was the big problem. I couldn't keep weight on. And I was on campus, several situations I just basically blacked out, I'd have to stop, you know, that feeling of Okay, wait a minute what's going on, I have to like, recalibrate, you know, get home rest. And it was scary. So I went back to my naturopath who I'd seen throughout high school who helped me with a lot of supplements and food sensitivities, stuff like that and say, Okay, what can I do next? And she's okay, maybe you could benefit from therapy. And I was like, okay, maybe I'll do that. But it was gonna be very expensive. And I was gonna have to drive from Gainesville, Florida to Tampa, Florida, to be able to do this. And I was ready to commit to it. I would do anything to continue pursuing this path. Now, before I committed I heard a podcast and this is where the fruit comes in. So I heard a podcast from this guy, Doug grant, he's a chiropractor, and he was talking about how people who eat you know, healthy diets and you know, the fruit, that that can actually also help detoxify your body like the nutrient, the nutrient density can help your body eliminate, you know, heavy metals and toxic substances. So I'm like, Okay, wait a minute, this guy's tell me I get to eat all this fruit. He's telling me it's going to have these healing properties. This sounds a lot more exciting than doing the collation therapy. So I'm going to give this a shot. And that was the beginning of the journey of eating fruit. So this guy, this guy, Doug Graham, he teaches basically, you know, basically a fruitarian diet to a certain extent, I would not cannot comment on fruitarian I don't think I follow a fruitarian diet, but I started working with him. And in this is September of 2006, in December of 2006, is when his book comes out. And I read the book straight through and one of the testimonials in the back of the book is my my co founder of Mastering Diabetes, Cyrus Khumbatta. So his testimonials in the back he's also living with Type One Diabetes. He had this amazing transformation of his health and his insulin. sensitivity. And I was blown away. So I go Google his name. I learned some more. I see pictures of him on the internet like, wow, this guy's ripped. He's fit like, this is awesome. I'm really optimistic. I'm going to do this. And so I started working with Dr. Graham and I start eating lots and lots of fruit like literally the first week Ain't nothing but bananas. The second week, I hate bananas and lettuce. And then I continue to add model meals of fruit like this is the beginning I even much differently now. But Stacey Simms 25:26 I can't wait to hear because this sounds horrible, but go ahead. Robby Barbaro 25:30 It was really as kind of like, it was like an elimination diet to a certain extent. This is around Christmas time now of 2006. And I remember my, my grandmother was was in town for the holidays. And I come down to the Christmas Day meal and I literally have a pyramid of bananas. We're talking four bananas on the bottom and three then to the one true pyramid of ripe bananas. And that's how they eat for Christmas dinner. They were just shaking their head like this. They were kind of laughing and thinking this is not going to last so No I cuz they've seen me try a lot of different diets over the years and a little bit No, it's it's basically lasted for for 13 years now but again, here's the change the changes that I started eating all this fruit, you would think that I would then need absurd amounts of insulin to eat all this fruit so I'm eating nowadays 600 700 sometimes 800 grams of total carbohydrate per day, and the insulin I'm injecting is somewhere between like 25 and 35 units I mean, depending on how active I am, depending how consecutive my fitness has been, but like I have some Instagram story how so people can see all the details recently, it's actually been under 30 units. But the here's the the percent change. If you can't do the math of that say, like little over 30 units per day and like 700 grams carbohydrate, you're going to come up with a 24 hour insulin sensitivity ratio somewhere around like 22 to 124 the 126 to one that is a 600% change in total this instant sensitivity going from three to one to 25 221 so I'm eating all of this carbohydrate energy, but I'm not needing excessive amounts of insulin, I'm actually using a physiological normal amount of insulin. I think that's an important goal for people living with Type One Diabetes is to live a lifestyle where the insulin you're injecting is close to what your pancreas would have normally been succeeding prior to being, you know, having beta cells and not working properly. Stacey Simms 27:28 Wait, wait, let me stop you there, because and I had lots of questions about the food. But what you're saying about the normal amount of insulin is not what I was taught. I was always taught that if my son didn't have diabetes, his pancreas would produce whatever amount of insulin he would need. So I mean, let's say you know, we're not talking about someone who's going to spend 20 years eating high fat foods, fast foods, people cupcakes every day. Let's say someone who has you know what kind of an everything in moderation diet, wouldn't their body just produce whatever amount of insulin they would need? Or have I? Is there a study or something that says no, no, you should only be producing 30 units of insulin a day? Robby Barbaro 28:06 So it's a great question. It's an important question. So there is research that shows how much insulin a healthy human will produce, you know, over a 24 hour period, and it's somewhere between, you know, 25 and 50 units per day. That's fascinating. Stacey Simms 28:22 I'll have to look those up. Because I really didn't realize there was a, you know, kind of a standard or normal, I just thought it was okay, if you're eating this, then that's what your body does. If you're a teenager, then this is what your body puts out if you're pregnant., Robby Barbaro 28:36 Absolutely. No, there's like there's definitely a range. And you know, this definitely goes into the whole research of insulin resistance and what's happening in pre diabetes and type two diabetes and you know, doctors who monitor fasting insulin levels and sort of markers like bad or to get an idea of somebody's state of health, which, again, I think it's an important conversation. That's not happening. often enough in the type one world, which is the fact that we actually can very easily monitor our insulin sensitivity type ones are the most fascinating test subjects for insulin sensitivity on a meal by meal basis. And that's sort of why part of the reason Cyrus are so passionate about what we do is because as people living with Type One Diabetes, we live, eat, sleep, and breathe insulin sensitivity on a millennial basis. And we know that that is the solution to people living with pre diabetes and type two diabetes that is the cause of their condition. It's insulin resistance. If you can learn how to reverse that and maximize insulin sensitivity and be able to utilize insulin that your pancreas is still producing, then they can just become free of diabetes. And this has been shown in peer reviewed research for almost 100 years now. Stacey Simms 29:56 Okay, so let's go back to the food because If you told me that I was going to eat a pyramid of bananas, or Ooh, maybe add some lettuce, I would tell you that's not happening. Get out of the car, we're done. So tell me a little bit more about what you eat on a day to day basis, if you don't mind and I won't, you know, we all well, I won't judge I'm just going to say, tell me a little bit more about what you eat on a day to day basis. Robby Barbaro 30:23 It's such an important question and I will get to what I eat. But I first I want to start off with the passion and understanding that satisfy both have for making sure that people who decide to you know follow our program or join our coaching program. Absolutely love every single meal. Like we are very passionate about that and we really work with people about getting specific feedback about the types of foods they like the texture, you know, the different flavors to add and like there's so many different ways to do this. You know, low fat plant based whole food approach that we're talking about. So we've actually put it into a very simple, easy to follow like traffic light system. Stacey Simms 31:08 Okay, so tell me about that a meal about like a client would eat perhaps rather than what you're obviously able to limit yourself in certain ways. Robby Barbaro 31:17 Yeah, so So basically, it's going to come down to picking specific ingredients. So we have a green light yellow light red light category. So the green light foods include fruits, starchy vegetables, lagoons, intact whole grains, then you have leafy greens, non starchy vegetables, herbs, and spices, and mushrooms, those are all the foods in the green light category. And any given meal we teach people can include any combination of those ingredients that they desire. And the reason they're green light on our program is because those are all they're very nutrient dense, they're high in water content, they're high in fiber, those are not unprocessed foods, and they also are low in their fat content. So that's really the key of what we're doing here. That's why I can eat so many grams of carbohydrate and not need an excessive amount of insulin and actually just use a physiological normal amount of insulin. It's because we have reduced our fat intake. Stacey Simms 32:09 Okay, so give me an example of a green light meal like break it down, I'm looking at my plate what's on it. Robby Barbaro 32:14 So for breakfast, you're going to have one to four of your favorite fruits. So this could be berries, pears, mangoes, papaya, bananas, you name it for your favorite fruits, then you're gonna have some some greens or non starchy vegetables. So it could be lettuce could be a rula. It could be cucumbers, could be zucchini, stuff like that. And also ground flaxseed or ground chia seed in order to make sure you meet your essential fatty acid requirements as an insurance policy. So just by having a small amount of those ground up, you literally automatically right then and there just in your breakfast meal have met your essential fatty acid requirements, even though it's not completely necessary because if you eat enough calories from Whole Foods You would also meet your requirements, but we're sort of doubling up and giving people an insurance policy. So fruit is our primary recommendation for breakfast. You can also have things like, you know, hash browns for breakfast, or, you know, this being breakfast dishes, there's a variety of things their lunch would include, for most people, much more starch, heavy meal. So that's things like potatoes, butternut squash, like a bean stew, something like that. But again, it's going to also have vegetables going to have herbs and spices going on, sometimes mushrooms, the after like a dinner meal. And again that that afternoon meals, the starch focus is allowing people to eat the bulk of their energy at that meal because that's when people are most active. And then you didn't have like a snack in the afternoon fruits a great snack, you know, potatoes are great snack, stuff like that. And then dinner would include, again, there's going to be a starch component of being component, maybe a fruit component, but it's going to be heavier on Vegetables because we are not as active in the evening most of us and that's a good time to really focus on the vegetable nutrient density. And then again like people could have like a dessert like a fruit based dessert. I like have something like an ice cream or something you take banana as you put it through a blender, combine it with some wild blueberries and you have it's really amazing it's delicious. So they're very simple meals like and again everything is is whole that's the that's the really the key nuance if somebody wants to like truly do it 100% but I also want to emphasize you don't need to do and hundred percent to get the results but that's unrefined whole ingredients combined into bowls. That's really how it goes. Right got Stacey Simms 34:41 That's very, very eye opening. That's very clear. Thank you. But I have to ask I know a lot of people listening said potatoes hash browns arm people with diabetes, not supposed to be able to eat that. Robby Barbaro 34:51 So, again, this is this is the fun part about talking to people. You know, there's many people living with type one, type two The fact that we get to test our blood glucose on niobium basis makes this condition very unique. So if somebody has heart disease or they have cancer, they can't really see that, did things get better or worse based on that specific meal, you don't really know they don't have a key metric. So I'm sure a lot of people listen to the show, have eaten a potato, eaten a starch, heavy meal, eaten some bananas, and they just saw their blood glucose skyrocket, and they're like, man, how is this guy robbing? that food is not the reason that I just saw my glucose meter go to 202 5300. And here's the deal. This is the eye opener. What's happening in that case, is you're likely again, this could be nuances around insulin timing, which I will get into for type one diabetes, but in general, let's say we're talking about type two. The reason that when you ate the banana you ate the chemo. You saw a bug because is because you're living with insulin resistance. It's because what you ate prior to that meal, which has brought about the state of insulin resistance, and what that is, insulin resistance is when your body is struggling to take glucose out of your bloodstream and into your cells. All right, and this is caused the primary cause is when there is fat stored in cells that are not designed to store fat. So your adipose tissue is designed to store fat, okay, you're supposed to have a little bit of fat in your muscle and a little bit of fat and visceral liver cells. But when you have excess, it inhibits the function of insulin, okay, influence sociopaths open the door and allow glucose to go everybody stream into yourself. When that function is not working. Your blood glucose level goes up and up and up. And that's what's happening and pre diabetes and type two diabetes that's the cause. Now, this is also a major problem for people living with Type One Diabetes Type 1.5 diabetes and insulin dependent type two. So the insulin we're injecting in Is it working as efficiently or properly, and that is the resolve. That is why a high carbohydrate meal will result in a high blood glucose reading. So as you begin to lower the fat in your diet, and these cells that have fat that's not supposed to be there starts to get cleared out, all the sudden insulin works again. So for me, I mean, for example, I just again, I'm on this whole crazy for people but I just had a lunch today that was 230 grams of carbohydrate at one meal. And I know that's more carbohydrate than some low carb people would eat an entire week. So I had mangoes I had white supposed to I had my Mesa potay I had spinach, I had a ruler, that was my lunch, I injected 4.5 units of insulin for that meal. And then I can see on my Dexcom I can see the profile it goes up, you know, maybe 131 40 comes right back down. And this is insulin sensitivity in action and anybody listening to the show can absolutely do an experiment and test that themselves and begin to observe. How can I make insulin work more efficiently in my body, it truly comes. It's wildly simple. It's wildly simple. It truly does come down to how many grams of fat you consuming per day. And we encourage people to use nutrition software to just observe this, just just gather data, just become consciously aware of how much fat you're consuming, and most people will are. It's very eye opening. It's very eye opening fat is hidden, it's hidden everywhere. And a lot of the packaged foods, a lot of simple foods have added fat to them. And it's coming in the form of oils in a lot of cases. And I'm in simple plant foods like avocados, nuts and seeds. They have a lot of fat in a very small quantity. So we're teaching is to have people not consume more than 30 grams of total fat per day. Another metric is to not exceed 15% of total calories coming from fat. Once you meet either one of those thresholds, you will absolutely positively see your insulin sensitivity improved. And again, I know in human biology, like there's a lot of complexities a lot of nuances in science, but this one is truly black and white. I have never seen one single exception in the hundreds of type ones that we've worked with thousands of people but hundreds of type ones. I have never seen a single exception of somebody increasing their whole carbohydrate content of their diet, while simultaneously decreasing the fat and not see an objective improvement insulin sensitivity they will eat more total grams carbohydrate and they will inject less insulin every single time and it will happen in a matter of days. So we run to me seed every time with retreats. Stacey Simms 40:00 I just have to ask you. So the flip side of that is the very popular, low carb high fat diet where you're not supposed to have more than 30 grams of carbohydrates in a day. I thought that fat kept you fuller, right isn't important to have enough fat in your diet so that you feel seated. Robby Barbaro 40:19 Okay, this is a such a fascinating cover. so important. So we wrote about this in detail in our book. And we have a whole section on calorie density and satiety. And the leader in this whole field of research is Barbara rolls at Penn State University. And she has done hundreds of studies on satiety. These are very complex studies to try and study human society and change the macronutrients of various foods is actually quite difficult. When you read the study design. You're like, wow, that's that was brilliant and very, very complicated, but it's fascinating research. And what she has found she wrote a book called volumetrics, which I'm sure many people heard about it was actually just ranked as far as like one of the best diets for 2020 Stacey Simms 41:05 volumetrics. I remember covering this like 20 years ago, the and I, what I remember from it the most is that it was all about you eat the same volume of food every day. So maybe if you had like more soup, you know, we're more healthier. So you're getting Robby Barbaro 41:20 Yes, you're getting hit this. So the cover of the book is a bowl of soup, because her research is that society is basically water plus fiber, its bulk. It's those two things combined, which you didn't research of them isolated, like just drinking water alone does not have the same impact on society as when you have the water in a whole food with the fiber. So your point is very valid though, because So what I'm saying is there's a lot of research to point towards the diet that we're teaching here being very satisfying because of the bulk that's included the water and the fiber in every meal. So it's definitely satisfying Don't worry about that. But again, your point is valid. There are a lot of people who are doing a ketogenic diet. They're not, you know, following those principles and having a lot of bulk, but they are staying quite satisfied. So there there is an element of truth there. But when you look at the and again, that's anecdotal stuff, which I know we both heard, I have not seen much research, peer reviewed published research on that specific topic. So I think there's more to be studied. And I honestly want to have set up a podcast interview with Barbara rolls, just to ask her that specific question. Stacey Simms 42:34 So funny, because I was a health reporter for a lot of my career. And I remember volumetrics and I drank a lot of soup. I remember it. So before I start wrapping this up, I do want to ask you, I know that your goal initially, as you said, was to try to reverse type one diabetes, right? What's going to cure this for me? And obviously you haven't stopped taking insulin. You're not at all telling people to do that. But when you look at how you're living, and What this plan and your partnership with Cyrus has led you to? Is that still in the back of your mind? Robby Barbaro 43:06 It absolutely is in the back of my mind that we got to figure this out. There's so it just, I mean, Stacy, do you agree? Like, it doesn't seem that complicated? I mean, why can't we beta so why can't we just go? Like, like stem cells die all the time. And then there's new stem cells that create new ones, why the beta cells so difficult to recreate? Stacey Simms 43:28 I'm not smart enough to know but I do think it's a lot more complicated. I mean, no autoimmune disease has yet been cured. So I'm very very very hopeful Don't get me wrong, but yeah, I don't I don't know that diet alone You know, of course will ever do it but I'm very the things you mentioned right there. I'm very, very hopeful about but are you still feeling like you're the walking experiment? Robby Barbaro 43:50 So I couldn't agree more that my after 13 years of doing this, and you know, hitting plateaus of insulin use on two different approaches. I think it's good. I'll be more than diet as well, for sure. And I, hey, I would love to be the experiment like the first person that makes makes it happen. I would love for some miracle to happen. But yeah, it's it's definitely in the back of my mind. But I will definitely say it's not as much as the forefront as it was in the beginning. So the back of my mind is really the appropriate way to describe it. I think about it. I certainly try and be active in the community of researchers who's looking into this and learn from some of their research and glean insights. And I just I want to participate. Stacey Simms 44:31 Excellent. So the book Mastering Diabetes is for everybody with all different types of diabetes. It's not just about type one, right? Robby Barbaro 44:39 So the answer is yes. And it's really for people who are living with insulin resistance. So that's everybody with pre diabetes as everybody with type two diabetes, that's people living with gestational diabetes, and that's majority of people living with type one is 1.5 diabetes, and it's also people who don't have Diabetes yet. So in America, we have over 80 million people living with pre diabetes that don't even know it. And there's also a nurse, a big chunk of people who are living with insulin resistance who haven't gotten to type two diabetes or pre diabetes yet. So insulin resistance is really at the core of what we're teaching here. And the reason is, is because insulin resistance is the central node for a wide range of chronic health conditions. So when you're living with insulin resistance, you're increasing your risk for heart disease, for cancer, for chronic kidney disease for high blood pressure, high cholesterol, for rectal dysfunction, for depression. It's a long, long list of unfortunate conditions that are associated in some resistance. And that's part of the reason we're passionate about getting this message out to the Type One Diabetes community as well because we don't die of high blood glucose readings. We die of the complications of diabetes, number one being heart disease. So inside this book, we also cover the science and research of people who've actually been able to reverse heart disease and that whole connection between maximize your insulin sensitivity for your long term health, but also for your short term health in having more energy for getting rid of brain fog, for reaching your ideal weight. It really truly does come back to this one simple concept. If you can focus on how to maximize your insulin sensitivity, you are setting yourself up for success in the short term and the long term. So the subtitle of the book is the revolutionary method to reverse insulin resistance permanently in type one, type 1.5 type two, pre diabetes and gestational diabetes. Stacey Simms 46:43 I'm really excited to learn more about you and you know, hopefully down the road we can have Cyrus on the show as well. But one more question before I let you go. What are you having for dinner tonight? Robby Barbaro 46:52 Okay, so tonight I'm going to tell you exactly how Robby Barbaro 46:55 I enter it into nutrition software. I personally enjoy and My food into nutrition. I like dialing in the ratios I really really enjoy the confidence Okay, this is exactly what I'm having. And I feel really confident in this specific dose of insulin. And for people who don't like using nutrition software, we advocate this idea of go to meals and you sort of know this intuitively as a type one mom but you make certain meals that you've you already know the carbohydrate concept is the same thing. It's one it's this apple, it's this potato it's this But whatever it is, it's some combination of these you know ingredients and I know this amount equals this many carbohydrates this my grams carbohydrate, and you know, we can know what to do so dinner tonight is going to include lettuce or rubella, oranges, mangoes, papayas, and carrots, and it's going to be a total of 110 grams of carbohydrates. And I will also add that this meal is going to have 2.6 grams of fat And it's all by itself naturally without having to add any specifically high fat foods. And in the book, we also go into detail about how much fat you need to absorb fat soluble vitamins. And the research on that is really fascinating. So I hope people check it out. Excellent. Well, Stacey Simms 48:18 thank you so much for joining me. It's absolutely fascinating. I'm thrilled to have you on To learn more, because I've seen pictures of the fruits and the plates and the you know, I haven't seen the banana pyramid. But I've seen lots of stuff online. So I really appreciate you taking the time to explain it. Thanks for coming on. Robby Barbaro 48:34 It's great to connect with you. And I really appreciate you having me on. Thanks again. Robby Barbaro 48:43 You're listening to Diabetes Connections with Stacey Simms. Stacey Simms 48:49 I will link up more information on the things we talked about including some studies and some insulin resistance stuff that you might find interesting. I gotta tell you though, I was distracted. A lot once early in the interview and he was talking about bananas and he didn't tell him this I probably should have. I hate bananas. I hate them so much. I don't like the way they smell and like the way they feel I can't stand them. I do like banana bread. It's not the flavoring so much I guess when I think about it, although it's only banana bread. I don't like banana flavored candy. I don't like banana flavored ice cream. So when he kept talking about that, I was like, oh, enough. Okay, so I will link up more about Robby and Cyrus and their podcast and their book at Diabetes Connections.com up next Tell me something good but first Diabetes Connections is brought to you by Dexcom. And when you have a toddler diagnosed with type one like we did. You hear rumblings for a long time about the teen years everybody dreads that. But you know it hit us at full force a little bit early. I was so glad we had Dexcom Benny's insulin needs started going way up around age 11. And he has grown. I don't know, seven inches. In the last four years, along with all those hormones swings, I can't really imagine managing diabetes during this crazy time. Without the Dexcom continuous glucose monitoring system, we can react more quickly to highs and lows, see trends and adjust insulin doses with advice from our endocrinologist. I know using the Dexcom G6 has helped improve Ben he's a one C and overall health. If your glucose alerts and readings from the G6 do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions. To learn more, just go to Diabetes Connections.com and click on the Dexcom logo. I always ask for good news stories in the Facebook group. It is Diabetes Connections, the group I really hope you can join us there if you're not there already. I love how the group is going very supportive. We talked about the podcast a bit but it's not just about that. So please come check it out and you know, find people That are well educated and smart and fun and living their best lives with diabetes. This week's Tell me something good is a story I read in another Facebook group actually and asked if I can share and Cindy said yes. So let me read you her post. “Hi, I want to tell you about something I'm very excited about. I'm a scuba diver and an underwater photographer. I've been diving since 1985. I have over 1700 dives, but I got diagnosed with type one. Last June of 2019. I was concerned about ever diving again. That was my first question for the doctors. we dive in remote places we dive for weeks when we go but we went ahead and booked a trip in the Philippines. In January for three weeks we have been here before we know the manager we know a lot of the divers” so she had a whole plan included wearing a Dexcom she was going to wear the Libra sensor as a backup. She brought in meter of course as a backup. She was wearing her Pump tantum pump went out of the water between dives, and bringing long acting pens for a backup. Here's what she did 56 dives in three weeks, dives were 60 to 75 minutes each. Each dive was 50 to 100 feet deep. She tried to get her blood glucose to about 140. Before going into the dive, she only missed one dive because of being low. She had to wait for numbers to trend up on another one. She did carry orange juice and snacks on the boat. She did plug in a few times to the pump to correct and she ran higher than she usually did, which you really didn't worry about. I'm so glad to hear this because it was her first time diving and overall her nights were nicely in range. So she says “here is the exciting news.” Her Dexcom worked great. She had it kind of stuck under the wetsuit with a patch. She did a couple things to kind of keep it on but it didn't come loose. The Libra also didn't come loose. You put a patch over She let everybody on the boat know that she had diabetes. She wanted to make sure that people around her were informed. Her friend and her husband would check in every single time she was about to go under with, you know, what's your number. She also carried a tube of jelly. She says you can get this on Amazon a tiny tube of sugary jelly. You can break the tip off and squirt some in your mouth regulator and all that scuba gear, the regulator. She does give a little bit of advice for other divers here. I mean, she was a diver for 35 years before she was diagnosed. This is a post in the type one diabetic athletes group on Facebook. But if you'd like to get in touch with Cindy, if you have questions, I have a feeling she'd be more than happy to help you out and I would be more than happy to connect you. If you're thinking about scuba diving and you haven't done it before or you are interested in getting back on the wagon if you've been diagnosed. She says that she really wants people to get back in the swing of it. She also says I'm not telling you how to manage your Diabetes underwater or telling you Dexcom works perfectly underwater. I'm just sharing my experience and excitement of being able to do what I love to do. And she posted a bunch of pictures. I will I'll share a couple of these in the Facebook group. I think this is excellent advice and I'm just so happy that somebody was able to get back to doing what they love after being diagnosed with diabetes because that's what we tell our kids right you can do anything. But you know, it can be complicated. So way to go Cindy, this is fantastic. I'm so excited for you. And the picture she posted of the fish and some of the underwater stuff is breathtaking. Let me know if you have a Tell me something good story. It can be anything like this. It can be a milestone with your kids. It can just be something that is good news for our community. Email me Stacey at Diabetes Connections. com or posted on Facebook. Just tell me something good. A huge thank you to everybody who has posted recently about the world's worst Diabetes mom, as I travel more and do this book tour, it is just incredible to hear everybody else's worst stories. I mean, we all have them. And to learn what the what the book is beginning to mean to a lot of people, I did have some interesting feedback. When I went to Maine, they've given it to their clinic, they the group that I spoke with, bought some copies, and gave it to their local pediatric endocrinology group to give to some newly diagnosed families, which I thought was fantastic. If that's something you're interested in. If you have a clinic, or a diabetes office, or a group that is interested in having books on hand, obviously you can buy them and give them out. But please get in touch with me. Because when it's a situation like that, I'm sure we can figure something out either discounted pricing or, you know, maybe we can find something I'm pretty good with sponsors. And I'd love to make the book available to more people and that hadn't occurred to me that clinics might want it. So if you're in I was interested or if you're a health care professional and you're listening, if you're a CDE, please let me know. I'd love to start working things out. I'm going to work on this on my site as well. But just let me know. Coming up in March, I'm going to be in Wilmington, North Carolina, Winston Salem, North Carolina, and then out to Indianapolis. Can't wait to meet so many of you, as you listen and as you read, boys this fun. thank you as always, to my editor, John Bukenas from audio editing solutions. Thank you so much for listening. In a couple of days. We've got our mini episode that airs on Thursday, and this week, I am going to be talking about when a child has a fear of diabetes, when you know, we tell our kids Oh, won't hold you back. But what happens when a parent tells a little kid No, it's not gonna hold you back and the kid says, I'm scared. I think it will hold me back and I don't want to do this new activity. This was a heartbreaker. So we're going to talk about it and kind of find out what to do. Alright, I'm Stacey Simms and I'll see you back here on Thursday. Robby Barbaro 57:03 Diabetes Connections is a production of Stacey Simms media. All Rights Reserved all rounds avenged Transcribed by https://otter.ai
Two big topics for this mini-espidoe. Stacey talks about Spare a Rose and talks to the leaders of Patients for Affordable Drugs. Check out Stacey's new book: The World's Worst Diabetes Mom! Spare a Rose is an initiative to get insulin and other vital diabetes supplies to children in the developing world. Learn more here Join the Diabetes Connections Facebook Group! Stacey also talks about what we can do about the price of insulin with Patients for Affordable Drugs founder David Mitchell and Lauren Stanford, the community organizing director. Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode transcription: Stacey Simms 0:00 This episode of diabetes Connections is brought to you by the world's worst diabetes mom real life stories of parenting a child with Type One Diabetes available at Amazon as a paperback ebook and audiobook. Learn more at diabetes connections.com Announcer 0:20 this is diabetes connections with Stacey Simms. Stacey Simms 0:26 Hey, welcome to this week's minisode something a little bit different. I've been doing these short episodes all year long for 2020. And this is our first interview type episode. But I wanted to get some information to you that I thought would be interesting and helpful and about patient advocacy. So we're going to talk about what's been happening with patients for affordable drugs. I spoke about them. Last fall of it put out a report and I wanted to follow up on it. Of course there's a lot of information in the news these days about the price of insulin price of insulin There were advocates at State of the Union address. These are not the same advocates, but a lot of the same push. And I also want to talk about spare arose. So let's do that first spirit arose is an initiative that happens every year to help kids with diabetes in developing countries, so that they can get insulin. It doesn't take a lot of money to help out and it really does make a huge difference in the lives of these people around the world. Why is it called spare arose? Well, back in 2013, a group of people in the basically the diabetes online community realized that for the price of one rose for Valentine's Day, they could make a huge difference in the lives of children. So you spare a rose, you save a child, they've expanded it so that you can, you know, spare quite a few roses. There are different ways to pay for this. But it's really a very simple concept. Where does the money go? There is an organization called Life or child, and they partner with diabetes centers in places like Rwanda, Mexico, India, to give critical supplies to young people who really have nowhere else to turn. Right now, this program supports 21,000 people in 42 countries. And the goal here, no child should die of diabetes. If you'd like to learn more, I will link up everything in the episode homepage. You can see pictures of the families that have already been helped. You can read stories of kids who need help, and you can find easy easy ways to donate. So if you can possibly spare arose this Valentine's Day, it would be very much appreciated. We have done a lot on this in the past. I will link up a very fun episode we did a few years ago with Carrie Sparling and Scott Johnson and Bennett Dunlap, where we talked about this initiative. Gosh, it was probably 2015 maybe was 2016 but it was a while ago about learning more, and why I really do urge you to consider taking part in Spare a Rose While you're learning about that initiative, I also thought it was a good time to take a look at what's happening here in this country, and what's going on with our communities struggle to get the word out about the price of insulin. And if you've been following a lot of this, it has really heated up in the last couple of years. It seems like a lot of state legislators are taking this on. But at the federal level, it seems like it is stalling and you know, what can we do? Well, patients for affordable drugs put out a report a couple of months ago now. And I want to follow up with them and learn more about what they're doing. What we can do what what can be done about the price of insulin because I think when many of us hear this, we feel like there's just nothing I can do. It's overwhelming. Politicians are just arguing they're never going to get anything done. Well that may be true, that last bit, but there is something we can do. So I wanted to talk to the founder David Mitchell and community organizing director Lauren stand I should note that since I talked to them, each are three, which they're mentioning here did pass the House at the time of this interview, it had not yet passed, but the Senate has not acted. I reached out to Lauren to get an update on that. And she said that they need to pass the health care package by May. So they are pushing for them to include s 2542. It is less far reaching than HR three, she says but would bring meaningful relief to many patients. This is also called the prescription drug pricing Reduction Act introduced by Senators Grassley and widen and it has passed out of the senate finance committee as of this taping in a bipartisan fashion. It has not yet passed the full Senate and it includes the following it would penalize drug makers for price gouging. It caps Medicare beneficiaries out of pocket spending on prescription drugs, and it requires pharmaceutical companies to justify high prices. I will link up information on this as well as h3 and the other items we talked about in the episode homepage. Here is my interview with David Mitchell and Lauren Stanford, David and Lauren, thanks so much for taking some time to kind of explain a little bit about this. I really appreciate it. Thanks for being here. David Mitchel 5:18 Thank you, Stacey, for the opportunity. Stacey Simms 5:20 Thank you for having us. Before we talk about the report itself, and you know what we can do as individuals. David, let me just ask you to explain a little bit about what patients for affordable drugs is all about. Can you talk to us about the organization? David Mitchell 5:35 Yes, patients for affordable drugs is the only national patient organization focused exclusively on policies to lower drug prices. We're independent, we're bipartisan, and we don't take money from anyone who profits from the development or distribution of prescription drugs. We do two main things we collect patient stories elevate those stories to policy makers and elected officials and train people to be advocates Lowering drug prices. And we are building a community of patients and allies that can be mobilized in support of policies to lower drug prices, both at the state and federal levels. My wife and I decided to do this, because she's a cancer survivor. I am a cancer patient. I had an incurable blood cancer. My drugs are very expensive. They're keeping me alive, but they're keeping me alive at a cost list cost of $875,000 a year right now. And just one of my drugs and oral cancer drugs carries an out of pocket cost of more than $13,000 a year. So we have a personal experience here. And we're trying to bring that experience to bear to mobilize folks who are struggling with high drug prices, whether it's for cancer drugs or Crohn's disease, drugs, inflammatory drugs, insulin, there are millions of people who are struggling We're trying to help them have a voice and get something done that will actually lower the prices of drugs. Stacey Simms 7:06 Was it your personal experience with your cancer diagnosis that led you to start patients for affordable drugs? Or had you been doing this and then this happened. David Mitchell 7:15 I had been doing health policy work in Washington, DC for about 30 years, then I got cancer. And my experience as a patient was really searing for me to find out how difficult I prices could make trying to manage a chronic disease or stay alive with an acute deadly disease. And I became increasingly frustrated because there were no patient groups speaking out about drug prices. Literally one day I woke up and I had an epiphany. And it was, hey, maybe if nobody else is going to do this, you should try. And that morning, I went downstairs and my wife said, Honey, can I retire? Can I work for free? Can we put in some of our own Money and try and build an organization of patients that would fight for lower drug prices? And she said yes. So here we are. Stacey Simms 8:07 All right, I could talk to you about the organization for hours and hours. But we're really here to talk about this report the truth about insulin prices. So Lauren, let me ask you, as a person who lives with Type One Diabetes, what do you get out of this report? what's the takeaway here? Lauren Stanford 8:22 Well, Stacy, I will tell you, when I first read this report, it was kind of shocking. I knew the prices of insulin, were out of control, but just seeing it all written down and laid out. Like that was kind of horrifying for me as a patient. And I know when people in the community saw it, it was kind of the same feeling like seeing the chart with the prices just going up and up and up and reading about the 300% increases and all this and that it was really like startling, but really good information, but kind of heartbreaking at the same time. Stacey Simms 8:56 Lauren, let's go through this a little bit, because in the report, you will Aren't pulling punches. I mean, there's a section here that's headline price gouging and price fixing. Tell us about that. So not pulling punches. Yeah, Lauren Stanford 9:09 we're really there's a lot of facts in this. And I think that the spec facts kind of speak for themselves, the price gouging. You can when you're reading the report, you can see that the three companies Eli, Lilly, Sanofi and Novartis, they've all been working together, it seems and price fixing this insulin to keep raising the prices and the report, our chart goes back to 2001. And you can see since then there's been this steady increase from all three of them. It's just crazy. I mean, I can't put into words how exactly it makes me feel. But David might be able to speak a little more to the history of the price gouging and fixing David Mitchell 9:47 Well, the fact of the matter is that those three companies have managed to take control of the global insulin market, and they have effectively blocked other competitors from entering the market with The enough competition to actually drive down prices. And rather than compete with each other on price, they are content to maintain market shares and divide up the profits and be able to keep raising their prices in lockstep. It's very important to look at that chart and see whether or not they talk to each other and say, Hey, we're going to raise our price 15% next month, or not, they can each see what the other one is doing. And clearly, none of the three is willing to lower the price in order to try and steal market share their content to keep high profits and divide them up. We're going to have to break that cartel in order to lower prices or develop the ability to negotiate with the three directly which is why legislation to permit direct negotiation by Medicare in this country for lower prices is so important. Stacey Simms 10:54 One of the things that that strikes me when you use words like cartel and gouging and fixed is why hasn't the government already stepped in? If this is so blatantly obvious, right? Why hasn't the government stepped in and said, you cannot do this? David Mitchell 11:10 Apparently, I'm not a lawyer, apparently, unless they get on the phone and say, we're going to move our prices 15% all at once and talk to each other about it. They are allowed to do shadow pricing under our current law, and they're allowed to see what the other one is doing and then just match the price. So long as they don't talk about it. You can see what they're doing. It's obvious, but under law, if they don't talk to each other and collude, it's a harder case to prove. That's my understanding. I'm not a lawyer, to say, however, that the government isn't doing anything about it. You have to put one word behind it and that is yet because there are plenty of bills in Congress that would tackle high drug prices. And would allow, for example, Medicare to negotiate directly with the drug companies, including the insulin companies for lower prices. And there are bills to encourage the development of more generic and biosimilar drives that would provide additional competition that would also lower prices. So there is a recognition that this is a problem. But as with every one of the drugs we're fighting for lower prices for enough has not been done yet. We have much more work to do. The fact is in our system, drives are supposed to get a period of time to make a lot of money when a new drug comes to market and then we introduce competition through generics and biosimilars to make prices go down. Insulin is the exact opposite. We introduce these three drugs and instead of prices going down because of competition, they just continue to go up. And it's because of the abuses of these companies engaging regulators recognize it And I believe that within the next couple of years, we will succeed in making insulin look like the more normal model of high prices end and prices go down. Stacey Simms 13:12 One of the things that I think is really interesting in this report are the personal stories, because it's not just numbers, which are great and useful information. But there are faces and names of people who have rationed insulin who would talk about the struggle to afford it. And Lauren, I mentioned that you live with Type One Diabetes and you have for more than 20 years, can you talk about your experiences and of the people that you know as well because I know you have to know people who've really been in tough spots. Lauren Stanford 13:39 Yeah, and I always say that I am definitely one of the lucky ones because I've always had help and support with paying for my insulin and I've had my parents to fall back on but especially through my work. At p for ad I've heard stories about I were talking with a patient Yesterday who has to sometimes not pay your electricity bill so that she can afford her insulin every month? And I just hear so many stories like that every day and it's awful. And I mean, Stacy, you know, in the community, I think there's been, I want to say a isn't he? We don't. There's been multiple people who have passed away, I think five in the last year from rationing insulin, and it's just incredible that this can happen in America. I can't believe it. And like I said, I talked to people every day that are rationing their insulin, and it's just outrageous and heartbreaking. And like we say to legislators, when we're on the hilar we hear in our stories, like insulin isn't optional for us and rationing isn't an option at all or it shouldn't be an option that people have to do Stacey Simms 14:48 something to do. I think one of the ways in which my eyes have been opened in the last few years is you know, when when we're fortunate like you and I Lauren to have insurance, right, right go and I get my supply and my insurance pays for it and it's 25 bucks for me it's no big deal here and there, but then there was a time where we were one bottle short, and they said okay $300 Yeah, that one vial of insulin right you think you think who is paying these prices? Right? It seems like well everybody I know has insurance. So even though the list price is $300 are people really paying that and you come to find out and correct me if I'm wrong here. The system is so complicated that even if you have insurance, sometimes you are paying list price you're paying different prices is that something that you found as well Lauren Stanford 15:34 was prices are really important because a there are people who are uninsured and be when you're on a high deductible plan, you're paying lowest prices until you meet your deductible. So if you have a $5,000 deductible, then you are paying those lowest prices until you hit that 5000 marks and you know how many bottles of insulin someone may need in the first month of the year. I mean, that could be pretty close to five thousand dollars and a lot of people don't have that David Mitchell 16:02 out of pocket. So well and I would add that in some plans, insurance plans, even after you meet the deductible, you will have a co payment or coinsurance and frequently that's based on list price. That's certainly true in Medicare. You pay all of your out of pockets based on list price. So list price really matters. And I think it is somewhere in the range of 65% of people who pay for some or all of their medications through the year based on with price. Stacey Simms 16:41 David, you mentioned earlier, some solutions. Some you said yet. I really liked that. When you said there's this is you know, there's not solutions yet. Can you talk a little bit about some of the things that Congress is considering and also you mentioned a couple of them but help people who are listening Try to make a difference. am I calling up my representative and saying vote on this? am I writing letters? What can we do? David Mitchell 17:07 Well, you can come to patients for affordable drugs.org and share your story with us because we will see to it that the story gets put to work making the case for why this problem needs to be addressed. And then if you're if they're interested, we'll be in touch after they leave their story and not for money because we don't ask patients for money, but to let them know of times that they can call their right their member of Congress or state legislator to speak up for reforms. What are some of the reforms? There is a bill in Congress right now and it may be voted on in coming weeks, called HR three, which is a very comprehensive bill in the House of Representatives that allow Medicare to negotiate over drug prices, and was set as a cap a number that is no high Or than 120% of what six other wealthy nations paid for their drugs. This would lower prices in this country dramatically, because we pay two to three times what other countries pay for their drives. HR three has other good features would cap out of pockets for people on Medicare, it would include inflation caps, so their prices can't be raised more than inflation. year over year. There's a bill in the Senate that is bipartisan, being championed by Senators Grassley and why didn't that would have inflation caps, again, making sure that drug makers can't price gouge by capping increases year over year at the rate of inflation. And the Trump administration has thrown its support behind the senate bill and the Trump administration may be about to bring forward April causal only covering Part B drugs. Those are drugs administered by doctors and nurses in hospitals or doctors offices that would use reference pricing international reference pricing to literally lower the price of Part B drugs to small sliver of drugs. It's only a pilot program, but it's very significant that the administration has brought this idea forward. So there are a number of proposals that are floating around. There are a number of other dynamics in play right now. And I'm laughing It's not funny, but there is a lot of obviously political energy being sucked out of the room by the impeachment process and the partisanship that exists, but I can tell you for sure that if Democrats and Republicans Both in Congress and in the White House could get a deal on drug pricing, they would all really like it. Because there's so much anger and energy around this issue. They want to go home and campaign on having done something. So we are trying to leverage that political energy to see if we can get something done. Before we get too deep into the election year in 2021, it will become increasingly difficult. Yeah, that Stacey Simms 20:25 makes a lot of sense. It really does. I'm curious, and I don't want to be devil's advocate here. But and I know there's a lot of hope. And there's a lot of energy, as you say, but I'm trying to think of a time where we actually made progress on medical pricing, and things like that. And I mean progress, where prices came down and access improved in the last generation or so. Not to say it can't happen now. But has it happened have we had success in any of these things? David Mitchell 20:55 know we actually have the most expensive health care system in the world. Some people think we have the best health care system in the world. But we don't actually, we have the most expensive health care system in the world, other countries have found a way not only to pay less for their drugs, but to pay less for all of the elements of health care, and still have better health outcomes, longer life expectancy. We have a system that is built in many ways, not only the drug pricing system, but the whole system is in many ways built to benefit the people who make money on it more than benefit the people who is supposed to serve. So we have hope, and drug pricing because 90% of Americans say they want Congress to do something about it. Democrats, Republicans and independence, there is an enormous energy. It's the only reason that there's hope because pharmaceutical industry is probably spending about a billion dollars a year to fight anything that would lower drug prices. And the amount of money that our side has, is dwarfed by that billion dollars. But what they don't have and we do is a very angry electorate, demanding that the people who they send to Washington and state capitals do something. That's what gives us hope. And that's why having people speak out is so important. Stacey Simms 22:27 Lauren, let me ask you, you have been at patients for affordable drugs for not not too long. A couple months now. Are you? Okay, are you more hopeful than when you walked in the door? Lauren Stanford 22:38 Ah, definitely. I don't know if that's because of the political timing, but I can tell you what, these people if anyone's going to get it done. It's this group and our advocates. We have strong voices and to echo what David said before something that we have that pharma and the pharmaceuticals don't have are these compelling patient stories and I think we're doing a really good job of making sure they're heard on the hill and that something needs to change. And I'm definitely hopeful that something is on the horizon, there is not a more deserving cause I think then lowering drug prices so that people can afford to live. So I'm very hopeful. Stacey Simms 23:19 Thank you both so much for spending some time with me. We will link up the full report, you know, as we have in the past and information, how people can get in touch and share their stories, but I really appreciate it and thanks for fighting the good fight. David Mitchell 23:31 Thank you, Stacey very, very much. Thank Unknown Speaker 23:33 you Stacey Simms 23:34 information on everything they talked about at diabetes connections. com, click on the homepage to learn more about patients for affordable drugs, the legislation that they talked about a link up some insulin for all hashtag stuff as well some other resources that are out there. And of course, I will also link up to spare heroes that I talked about at the very beginning of the episode. I know Valentine's Day is just about here as this episode airs. It's tomorrow but it is Not too late. And of course, the sparrows initiative will continue for a few weeks after Valentine's Day as well. So please, if you can take part back next week with our longer interview episodes, those drop on Tuesday, and I'm going to be talking to the guys behind the new book that's coming out. They have a podcast to mastering diabetes. And I don't know if you've seen these guys, their claim to fame, their big trademark is they're like, eat 500 carbs of fruit. And I had to talk to them, because it could not possibly be that simple. Of course, it was not. But they really were fun to talk to. It was an interesting conversation. It didn't go quite the way I thought, because sometimes there's a lot of snake oil out there. This is not that they are the real deal. They are the real different deal. But it was great to talk to. That's on Tuesday. And then next Thursday, we will have another minisode and that will not be an interview episode as I just did. And that'll be back to just me talking about one topic for 10 years. 15 minutes. I love doing these. There's so much fun. I've learned a lot already in just the last couple of weeks and I hope you're enjoying them too. If you have a topic that you'd like me to talk about our question you'd like answered, please let me know Stacey at diabetes connections. com or you can just go ahead and post in the Facebook group. I have so many fun interviews lined up. I'm so excited for the weeks to come. But I always want to listen to you and deliver what you would like to hear. So if you got something, please please please let me know. All right, I am Stacey Simms. I will see you back here on Tuesday. Until then, be kind to yourself. Unknown Speaker 25:42 Diabetes Connections is a production of Stacey Sims media. All rights reserved. All rounds avenged Transcribed by https://otter.ai
Ask the D-moms is back! We’re tackling leaving kids home alone, keeping perspective when you’ve been in the diabetes community for a long time and driving with T1D. Moira’s daughter was behind the wheel before CGMs and Stacey's son just got his permit. Check out Stacey's new book: The World's Worst Diabetes Mom! Stacey mentions a blog post Moira wrote back in 2013 about hybrid closed loops In Tell Me Something Good, an amazing way to raise awareness. We’ll talk about the Run Across America – one man – from Disneyland to Disney World.. and its’ going on right now. More about Don Muchow from Diabetes Forecast Magazine (2019) Join the Diabetes Connections Facebook Group! This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcript: Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes. By Real Good Foods real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:21 This is diabetes connections with Stacey Simms. Stacey Simms 0:27 This week, ask the D moms is back. We're talking about leaving kids home alone. Keeping perspective when you've been around this community a long time and driving. Moira’s daughter was behind the wheel before CGM, which had one advantage: Moira McCarthy 0:42 The good thing about a blood glucose meter and a driving teenager was I had proof whether she had or had not checked her blood. You are no longer going to have that. And so I don't know other than crossing your fingers and just keeping reminding them I don't know how else Stacey Simms 1:01 I have an idea. You'll hear what my idea for kids with CGM is. It's something they can do before they buckle up in Tell me something good an amazing way to raise awareness. We'll talk about the run across America. One man going from Disneyland to Disney World. It's going on right now. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of Diabetes Connections. I'm your host Stacey Simms. So glad to have you along. Hello to new listeners from Maine. I spent this past weekend in South Portland, Maine, talking to the PPODS. I love that name. Parents and providers of diabetic children. It's got a little logo with peas in a pod. Very cute stuff. Now I'm taking a little bit of a chance saying I was in Maine this weekend because as you know, I do tape this podcast a couple of days in advance. And as I'm getting ready to go to Maine right now Actually, it looks like there's some snow in the forecast. So fingers crossed, that all goes well, and that my plane takes off on time, and that I wear the correct footwear. You know, I used to live in Syracuse, New York. I'm from New York, and I lived in upstate for 10 years. I had all sorts of boots and coats, but I moved to Charlotte 20 years ago. Most of that stuff is long gone. So I was really hoping for Sunny dry weather for main. But it looks like that is not to be so yes, I'll be posting on social media about how it goes. But assuming all as well, I make it there and back with no delays. Fingers crossed. I'm sure it'll be a great time. And of course as you're listening, it was a great time. It's one of those funny things that I thought about a lot especially when my kids were younger about the differences raising kids in the south and in the north. My sister still lives in New York and her kids were growing up. She would send me the cutest pictures but they would in snow pants and snow shoes and jackets and scarves and gloves. And I was throwing my kids at the door, not necessarily with flip flops all year round, but pretty close to it. Benny, I don't think owns a pair of long pants. He basically wears shorts, even when we get a flurry or two here. But I also always thought about diabetes, and how much more difficult it must be to manage all the gear for kids, when they're all bundled up. You know, you do hear about static issues with some of the diabetes technology and other stuff like that. And I was just always really happy that I didn't have to mess with it too much living here in North Carolina. All right, I'm going to be talking to my friend from the northeast. My friend Moira McCarthy, lives very far from me, but we'd love to get together virtually every once in a while. And I'll be talking to her in just a minute but first Diabetes Connections is brought to you by One Drop. And you know, I spoke to the people at One Drop, and I was really impressed about how much they just get diabetes. And it makes sense their CEO Jeff was diagnosed with type one as an adult. One Drop is for people with diabetes by people with diabetes. The people at One Drop work relentlessly to remove all barriers between you and the care you need. Get 24 seven coaching support in your app and unlimited supplies delivered. No prescriptions or insurance required. Their beautiful sleek meter fits in perfectly with the rest of your life. They'll also send you test strips with a strip plan that actually makes sense for how much you actually check. One Drop, diabetes care delivered, learn more, go to diabetes, connections calm and click on the One Drop logo. My guest this week is my dear friend and fellow D mom. Moira McCarthy, Moira is of course a renowned writer and author, a speaker and advocate, a professional travel writer and much, much more. Her daughter was diagnosed at the age of six more than 20 years ago. And in this go round, I get a little selfish with my questions. Yeah, I have a question for more. You know, Benny just got his permit to drive in early January. And I wanted Moira’s advice. So we talked about that. And we, you're going to hear us kind of puzzle out some things on the spot. We came up with a couple of ideas. And we didn't talk about this ahead of time, and I debated editing some of it out. But I think it's kind of fun to listen to the wheels turn. So you'll hear that and we also talked about when is it okay to leave your child home alone. And then we got on a bit of a soapbox about being blunt, because we're very blunt and the blowback that we both take for that. I will link up all of the stuff that we talked about here, including I mentioned a blog post that Moira wrote back in 2013. And you'll know it when you hear it and I will link it up at the episode homepage. So here is my chat with my fellow D mom. Moira McCarthy. Hello Moira, it has been too long. How are you? Moira McCarthy 5:45 I know the holidays went by 2020 started whereas the year going I am really good. I just got my hair did and while I was there, I was thinking all this is perfect because I'm staying and I are doing the podcast and then I remembered that they can't actually see you on the podcast. So people should just assume I've always had my hair dead right before it I Stacey Simms 6:08 always look beautiful. It's so funny with the show because a lot of times when we do these interviews, you know, you can open up the video window, but half the time I'm in my pajamas, or you know, it's late at night, and I don't want I don't even want to show myself to the person I'm talking to. Maybe one of these days we'll do a video podcast, but not today. So I've been dying to talk to you because right at the beginning of the year, Vinnie got his permit now in order to drive in North Carolina. I know in North Carolina. No, he's like four. Yeah, exactly. You can get your permit here at 15. And then you can get your driver's license. It's a graduated system, but you can get your driver's license at 16. So a lot of kids like my son at 14 and a half, you know, go to Driver's Ed, and then they take the the written portion, then they take the driving portion and then they're behind the wheel and that's where we are So I was so happy to talk to you because we're a few weeks into this now. But what do you think of driving and diabetes? I know it was a little different when when Lauren was driving, but can you share your experiences on that? Moira McCarthy 7:12 I it wasn't that much different. The first thing I will tell you is Lauren is my second child, my older daughter is four and a half years older than her. And so we had experience teaching a child to drive before and I can honestly say that, I think that Lauren having diabetes made me take it all more seriously and do a better job than I had with her sister. So I think it's kind of a benefit. And one little example I can think of off the top of my head and then we can talk about details about kids with diabetes and driving and what they should do is um, I remember realizing that was really important to teach Lauren, my daughter with diabetes, how to pull over safely if you had to pull over suddenly for some reason for her it would be a low blood sugar or something right. And I realized that I don't think I ever taught my daughter that like, I think if you just say well pull over as soon as you're low, they're going to, they could pull over. And so place it, it's really dangerous to pull over, you know, instead of like go to the nearest exit or, you know, if you cannot make it there call 911 type of thing. And so that's just one example of many that I think that it caused me or led to me to do a much better job. Stacey Simms 8:22 If you're listening and thinking, of course, they're gonna know how to pull over, get me just you've never driven with a new driver, because it's amazing what they don't know. You think they've been your car for all these years? They must pick up on everything. But I never taught Leah, my older child who's now 18 you know, I never taught her how to pull over safely. That's going to be lesson number one when she comes home next, Moira McCarthy 8:41 because seriously, you can say most people must but how many times have you seen people pulled over like on the median strip side instead of the other side of the highway? You know, or or up next? What jersey barrier when you're like, No, no, don't get out of your car there. So as far as kids with diabetes, we were big problem. opponents have a contract for driving. And you sign the contract right at the point that he's at now, when they begin driving, and you sit down together and you discuss it, and there's actually a chapter in my book on driving and there is a sample contract. I'll tell you in a moment what I would add to that, because that was written five or six years ago, but you come to agreements together on what the expectations are, and then you both signed the contract. And for us, we did have low blood sugar amount that we expected her to pull over, if she got that low. And then we didn't really have one for high and we can talk about that if you want to. But our agreement was that if she forgot to check before she drove, she would have the keys taken away from her for a period of time. And sure enough, the first month, she had her license, she did it and I had to take her keys away for within that day, I had to drive her everywhere again. I say well, that's not a punishment if you drove them but it was a punishment. So with the Contract everything is out in the open and clear. And you as a parent have to stick to it and your child has to stick to it too. Stacey Simms 10:06 So when I said things are different, all I really meant was CGM, which obviously not everybody has. Moira McCarthy 10:13 Yes. So I will tell you what I would add to that contract and what I think about CGM and then we can talk about it more. I personally think it's super important that your children never ever, ever, ever look at their CGM while they're driving. Now, that doesn't mean they shouldn't use it. But just like a cell phone, it should be put away somewhere. And if they hear the sound, they should proceed to a place where it's safe to pull over and look at it pulled over. Because you know, and I know, it only takes two links of an eye if that for a kid to look down at something else, and look up and end up in a bad situation in a car. Stacey Simms 10:52 Yeah, that's a great point. I was just thinking of checking the CGM when you start the car and I think a lot of people would be okay with their kid glancing at it rather than doing the finger stick. That's a personal thing I think that parents have to decide. But what's interesting is so Benny has an app from, I guess it's from the DMV, it's probably not, it's probably from a third service that the NC the North Carolina DMV is working with. But it's an app on his phone to keep track of his hours of driving. So instead of filling out the piece of paper that my daughter did just a couple of years ago, when he gets behind the wheel, he first opens the driving app and clicks on or whatever the heck he does. And then he opens the CGM app, and looks at that as well. Yeah, so I'm really happy because he's getting in the habit of just checking something, right. He's got to pull out that driving up every single time. So we're making him look at the CGM, too, but it never occurred to me to tell him don't look at it while you drive. I mean, obviously, his phone has to be away and that sort of thing. But I can see where he would think, well, this is a safe thing to do. I'm trying to figure out what my blood sugar is. Moira McCarthy 11:52 Yeah. Every time I mentioned it to a parent, they're like, but but it's safe because it's their blood sugar. I'm like no. You cannot let a teen or any driver for that matter. Look down at a screen when they're driving even if you feel like they're just glancing. It's in my opinion, the most important thing and driving and CGM is that. Stacey Simms 12:13 Yeah. And just a little bit of a heads up for people who may not know. And I'm going to say this, but I'm going to give a warning, my own warning at the end. You can now if you use a dex calm, and maybe there's other CGM that will do this. You can now say, hey, Siri, or Hey, Google, what's my blood sugar, you can actually do that in your phone. However, I still be really careful about that while you're driving. I don't think a lot of teams are driving for hours and hours and need to constantly assess their blood sugar. So that's my warning is even with that. I would still not want my child constantly checking blood sugar. So I just don't think it's safe and it didn't occur to me until you brought that up more. Moira McCarthy 12:48 The interesting challenge for you parents, such as yourself, putting Benny on the road is the good thing about a blood glucose meter and a driving teenager was I had Proof whether she had or had not checked her blood, you are no longer going to have that. And so I don't know other than crossing your fingers and just keeping reminding them. I don't know how else Stacey Simms 13:13 I have an idea. contract you get behind the wheel, you take a picture your blood sugar, you don't need to send it to me at that moment. Moira McCarthy 13:21 That's a really good idea. But I wouldn't make them I send it to you because I'm not sure that I would sit home. Let's talk about this because I don't know the answer. Will you sit home and watch his blood sugar's on his CGM when he's out driving around in the car? Huh? Well, I don't know. I think I would say no, but Stacey Simms 13:44 Well, I'm gonna say I'm going to be honest. I'm going to say I will glance at them, but I will rely on the alarms. So I think and he and I will talk about this as it's funny to think about this as we're recording, but I think what we'll do is if he hits a certain number, then you can expect a phone call For me, not a text, you know, but maybe a phone call, but I don't think that number is going to, it's going to have to be low, you know, and just to check in on him, but I also don't want to distract him. So yeah, Moira McCarthy 14:12 this is a good question. Stacey Simms 14:14 But all the phone calls now we're you know, we're hands off. So but there's but it's also not legal in every stage talk on the phone when you're driving. Oh my gosh, what a thing we've gotten ourselves into. Right back to us try figure it all out. But first Diabetes Connections is brought to you by Real Good Foods. I love this stuff. They're so easy. They're so convenient, and they're good and they're good for you. One of the fun things about going to the Real Good Foods website is not only can you see all of the products, I mean, I usually buy it in our grocery store. It's really nice to just have it in the freezer there but all of the products are online, and then you can go into recipes. And if you've heard me talk about this before you might be thinking recipes isn't the stuff pretty much ready made. It is But then they have all this fun stuff you can do with it, and different ways to prepare it and mix and match a stuffed chicken power bowl. Spicy Italian sausage lasagna. I'm not sure what this is about pizza fries and ice cream. Okay, you're gonna have to go check it out and see the recipe for yourself. They have a lot of great offers, and you'll find out what makes them so good, but you really don't know until you try them. Find out more just go to diabetes, connections calm and click on the Real Good Foods logo. Now back to me and Moira and we're working out this driving and CGM thing in real time. Moira McCarthy 15:43 No, I think this is really good. I think we can think this through. I think that what I would do is, like you said set a parameter but also if I see it, give it a little bit of time. Like I wouldn't assume the minute I see it, that he's driving and not Although I don't know, I think the best thing I know everybody's doing it a different way now, but I think the best thing might be not to watch them from home because they need to learn how to manage their blood sugars in the car on their own. Stacey Simms 16:15 Yeah, I think I'm still gonna have him take a picture every time I begin. Unknown Speaker 16:20 Yeah. Unknown Speaker 16:23 You just have to send it to me. Unknown Speaker 16:24 Right? And then every once while like I would Stacey Simms 16:27 do, you could say I'm Moira McCarthy 16:29 just gonna take a look at that. Just show me and then you see. And also even if you never say that, he knows that you have the ability to ask him. That's the secret. I think that's a very good idea, Stacy. Stacey Simms 16:40 Why thank you. It's you win. Please trust but verify. I'm gonna talk to Benny. Maybe we'll follow up on this a little bit more and kind of see how it goes. But when I didn't I meant to ask you earlier when you took Lauren's keys away. I'm curious because she's such a shy and retiring type of person. How did that I mean, obviously she learned from it. It was important but she she was probably pretty upset. Moira McCarthy 17:01 She was upset, but not at me because we had that contract. And so it wasn't like I was saying, Oh, you did this and now this is your punishment. She made a decision to do something, knowing what the outcome would be. And so she was mad at herself. Stacey Simms 17:19 Hmm. Right. I got to get a contract ASAP. Yeah, you work? Yeah, it does work. We did it for social media. I do and it definitely works. Okay, Moira McCarthy 17:27 great. parents with kids without diabetes or learning to drive need one that like I said, I learned so much from my second kid with diabetes driving that I should have done with my first one. So, Stacey Simms 17:37 alright, so on to the next question, which was not for me. And thank you for answering my question and letting us hash this out a little bit. So I was at an event in South Carolina recently, and it was so cute. There was a mom with a daughter who was diagnosed about a year ago, the little girl was seven. And at this event I mentioned Okay, my husband's out of town. I'm an hour and a half away from home. I was in Columbia, South Carolina. Ben, he was home alone, Benny was not only home alone, he had gotten himself a ride home from wrestling practice, he had made dinner I don't even I'd left him some food, but I really don't know what he ate. And I was not going to be home until about 10 o'clock at night. And I shared that with the audience because I had my cell phone out, just like you do with any kid just in case diabetes or not, you know, thing if your parents was the closest, and they needed to be around, and so I could make a joke about I don't know what he's eating for dinner and that kind of stuff. We didn't talk about it very much. But at the end, that parent and little girl came up to me and the little girl was like mom asked her a mom asked me Well, how old do you think kids should be when they can stay home alone with diabetes? And the little girl is so cute because she's like, Unknown Speaker 18:40 I told you I told you I'll be old enough. Stacey Simms 18:46 So this is a good topic because as usual, it doesn't just happen. You know, you plan for things and I should say, because I was an hour and a half away and I did this with my older child to my neighbors are great and I have friends you know? 10 minutes. away, I had two people that were on, as I like to call it, they're on hot standby, not necessarily for diabetes, but like if you can't get a ride home from wrestling, or if I don't know, lightning strikes the house, you know, whatever. Right? So what what are your thoughts on leaving kids home alone with diabetes? Moira McCarthy 19:17 So I know that I sound like a broken record. But ask yourself what you would do without diabetes on board? And that should be your answer. I honestly did not see. And Lauren was my second child. So I did have a child that I had to make those decisions with before. I didn't see any reason that diabetes would make the answer any different. Now, the answer is super complicated, because in some states the legal question and in some states, it's not and then some situations parents are in desperate situations where they're going against something they may want to do. And so it's a complicated thing. So the way it worked for me in our town, you can take the babysitter training course when you're 11 and a half. And so that's when kids in our town between 11, a half and 12, that's when they kind of start babysitting a little. And so I backed it off from that by about a year to a year and a half. And that's when I would start like leaving them for short periods of time. Or if we were just going to a movie that was 10 minutes away. And as you said, always with you know, Mrs. Jones is home across the road, if you can't get me type of thing. And so I don't really see any reason, and maybe you can tell me what the reasons are. Why that answer would be different with a child with diabetes. And I say that I raised a child with diabetes, I fully understand all the responsibilities they have, but they should become just sort of a part of what they do and how they live and how they do all the other things that Everybody else does when they do it. What do you think? Am I wrong? Stacey Simms 21:04 Yeah, unfortunately, I'm, I'm going to agree with you. We're going to be nice and boring here. And I did pretty much the same thing. Yeah. I quit. But I can play devil's advocate in a moment. So we did the same thing in fifth grade. And I think that's when they're 10 or 10, or 11. But it was fifth grade, specifically, that I started leaving my kids home alone. Leah was the older child. And then same thing with Benny, and it was a quick trip here or going there. The diabetes definitely made me more nervous. I would have to write it right. I think it's important to say when we're saying this, you know, it's not. I know, you're not just cavalierly, although Lauren could probably run the town by herself at age 10. You know, you weren't just cavalierly, oh, it's fine. It's fine. You have to do a little bit more. But I do think the fear is, especially with CGM, which helps but also shows you everything. The fear is the kids going to be reading a book in the chair and then just fall over people are concerned That their kids gonna play a video game and forget to look at their CGM or check their blood sugar. And they're going to collapse. I mean, let's call it what it is. People are terrified to leave their children alone because they're afraid of the worst possible scenario. I mean, Moira McCarthy 22:12 what kind of video game? Stacey Simms 22:17 But you know what's really funny is a lot of times, this is a real thing. Kids get so distracted. And I have one of these, they get so distracted with some of these high intensive video games, that they don't release their blood sugar's low until they stop playing, or that their blood sugar's really high. Now, it's fine, because they stopped playing and say, Oh, I really low and then they treat, right? Or they stopped playing say, Oh, I'm really high and they take some insulin. So it's not that big a deal. But I think once you see that happen, you're thinking, well, what if I wasn't home? And the answer is, if you weren't home, the kid would treat the blood sugar, right? Moira McCarthy 22:49 And that goes to the perception that many have that if their kids blood sugar's low, and they bring them something or something that they're quote unquote, saving their lives. Yeah, and I think that they really believe that but what I always say it's kind of like saving a life sort of the same way, if someone's really hungry, you feed them. You know, I mean, I don't know of any cases of kids just falling off their couch and dying from diabetes. I know that cars hit houses randomly while a kid sitting on a couch or lightning strikes the roof or a tornado comes. In other words, people die. I just don't feel like there's that kind of urgency. Now. That's an educated child who knows how to take care of themselves. I'm not talking about a child with special needs more, or one who's newly diagnosed and has absolutely no idea or the rare rare case of the true hypoglycemic kind of where person which is a whole different ballgame and frankly, doesn't really exist in children. So it's sort of not in this conversation. But I think that if people could understand that those arrows are not even though You can make it have a siren sound, it's not really Unknown Speaker 24:02 an ambulance situation, Moira McCarthy 24:05 that might make it easier to do. And of course, all children are different and all children are unique. And there may indeed be a 16 year old boy who still needs a babysitter for different reasons. But just speaking in generalities, if your child has been educated about their diabetes, and they're within the age that you would leave them alone, it's more about you than about them, leaving them alone, I think. Stacey Simms 24:28 Yeah, I agree. I agree. You're not you know, you have to decide. And I saw this at another event I went to we were talking about sleep overs, you really have to decide that your child is not on death's door when they're diagnosed with Type One Diabetes. And I know you and I both get a lot of flack. A lot of people who will not say this publicly, but will dm us and email us and tell us that we're wrong, but we're not. You have to decide that your child is not on death's door with type one, or you won't live life and this is one of those tiny little things that you may not be thinking it as you listen, but if you're reluctant to leave your 13 year old home loan? And the answer is because you're afraid they're going to go low while you're not home and collapse and die, then I don't know anybody else more who speaks this bluntly. And it drives me a little crazy. I think when we speak so bluntly, it's a little scary. But it's also honest. And it's important, because when you have this kind of fear, you have to name it. And you have to talk to your endocrinologist about it. If you have this kind of fear, you know, and just find out about it. Moira McCarthy 25:22 It's really interesting you say this, because I've thought a lot about this in the past 24 hours because of something that was written and perhaps you can link this to this podcast this month, which is rensis new article. Yeah, about how she almost walked away from it all. And I will be honest with you, and I think this might be important to talk about in in that I know there are people out there because I'm listened to widely and read widely, who think I am just the most fun feeling uncaring person in the world because I say to them, you could move past your fear and you could do it for the sake of your child and you don't need to have this fear and they therefore Fear is so part of them, which I get that they take it as a personal affront. And I had been thinking, you know, maybe it's time for me to stop saying it. Maybe it's a different world and thank god my daughter grew up before everybody was as afraid as they are now. We were all afraid we're humans, but then I read rensis thing and I was like, no, it's okay to be blunt. Sometimes, you know, it's that old song cruel to be kind in the right measure. You're doing it for the best reasons. And and when I see parents who are so scared and so paralyzed and passing it on to their children, if they think it or not, or not passing it to the children, just their affiliate that way, it breaks my heart because I know in 95% of the cases, that doesn't have to be the case, right? Yes, yes. Unknown Speaker 26:43 Yes. Well, I know she was saying Stacey Simms 26:48 it is it's very difficult, but I'm glad you're sticking around. And you know, it's funny, you mentioned you are widely read, and it brought to mind this year, in the last couple of weeks. Of course, we've all seen the big excitement over control IQ with the tandem insulin pump. as Laura and I are speaking this is at the very beginning of this. So I don't have anything to say yet about our usage of it. By the time it airs, I'll probably have a lot to say. But every time I think of closed loop and this is a hybrid closed loop, I understand but every time I think of artificial pancreas more I don't even know if I've ever told you this. I remember where I was when your column came out. And I read it called something like I held hope in my hand Moira McCarthy 27:26 is held in my hand. So it was about Anna Floreen. Oh, yes, yes. Stacey Simms 27:30 I was at the Honda dealership in Ft Mill, North Carolina, waiting for my van to be serviced. And I was crying. Moira McCarthy 27:41 And it was believable. That was the first time that anything that treated diabetes that way existed outside of a hospital setting. Yeah, that day and I met her for lunch. She had to stay within three miles of the hospital, but she could go out So we met for lunch. And it was the first time I had watched Anna, not have to weigh what she was eating that way with the scale. But you know what I mean? Right, right. It just blew my mind. So Wow, that's a good memory for me. I got kind of choked up when you brought it up. Stacey Simms 28:15 Oh, absolutely. And of course, this isn't exactly that. It's not the I don't remember what software was being tested. And you still have to count carbs and do that with this with control IQ. But I think of you. And if you're not familiar, Moira and I are friends now. But I was just a fan back then reading all of her blogs and books and everything. And so I wanted to ask you, because then I don't know what year that was. But you know, you've been in this world for a long time. You know, born was diagnosed 22 years ago, Moira McCarthy 28:43 almost 23 Stacey Simms 28:45 years. 23 years ago. Two and a half. Yeah. All right. So I don't know if you can answer this question. You know, we've been into for 13. And I feel like sometimes, as you mentioned, you're thinking, well, maybe I should stop talking about it. You know, how do you how do you kind of keep on going, going going because I've I really hope you continue to do so. It's a very selfish question. Moira McCarthy 29:05 It's a good question. And I remember a million years ago, I, I'm going to say was 1999 or 2000. So I had been in the diabetes sphere for Lauren was diagnosed in 97. And I went to my first jdrf International Conference they used to have, and there were all these people who were doing so much and were so smart and knew about all the research. And I got up and I asked the question, they were also hopeful. And I asked the question, is your hope real? I want someone who's been in this for a long time to answer is this hope real? Because I don't want to hang out find out in 15 years, like this is all just some stupid cult, you know? And this woman named rd Johnson got up, and she's very well known in the diabetes community look her up but um, she said, I think it had been like 15 years since her son have been diagnosed at that point. And I remember thinking, wow, and she's still involved. Team. I know I'm going on. I mean, I waited a year till I got involved. So it's been 21 going on 22 years. So, but I think it's a really good question. And I'm going to say that it's not easy. But I have a couple reasons to keep pushing. And most of my friends who were super involved, sort of start dropping away about 10 years ago, there are not that many of us who have been constantly involved for two, three decades. Yeah. But the first thing is that I really did make a promise to my daughter when she was diagnosed that I would try until there was a cure. And I think she would totally understand if I said right now I'm over it. I did the best I couldn't image for but that's as far as I can go. But I, I want to appreciate and respect that promise. So that's the first thing and I'm very thankful for the jdrf ride to cure because that makes it more palatable at my point to be involved. I would feel weird doing a walk to Now you know what I mean? I do and I do like riding my bike. And I like the people who are there. And I'm thankful to all the people who donate I mean, I just registered to ride like two days ago, I think I have almost $5,000 and people are so good. And then the second thing is, I have to find some positivity out of all this for me, I have the positivity for my daughter's easy. All I have to do is look at her and see her career, her life, her happiness, it's all good. But I have to get something out of this for me because raising a child with diabetes is is a lot. And I think for me what it is, is if I can share my mistakes and what I learned from it with people now and if they can believe me, then maybe I can make it easier for someone else and that makes it worth while what I went through. Does that make sense? Does that sound hokey and stupid? Oh, it Stacey Simms 31:54 sounds wonderful and genuine. Yeah, it really does. Moira McCarthy 31:58 It gets harder and harder. Because I know that I'm people think I'm a dinosaur, but what I understand is, I'm kind of a dinosaur, but I'm a dinosaur that's evolved. Like, I understand technology and respected and I know what's going on. Do you know what I mean? It isn't like I'm stuck back in barefoot and that was fine. Stacey Simms 32:20 I know the trick that I know you're trying to pull here is using technology to the best of its ability to help us and not hold us back. Moira McCarthy 32:29 million percent. Yeah, we know it's so happy. So happy. Stacey Simms 32:33 Yeah, it's and another thing that you said that I just want to bring out if you know as you listen, a lot of newer people we mentioned control IQ. And you mentioned jdrf Moira, and I think this is just another reason to stay in the game. You may not realize as you listen, that control IQ way back in the day was called tape zero technology and type zero technology came out of University of Virginia. Maybe you know that if you listen to this podcast, but you may not know That the first funder of type zero technology was jdrf. And without the biking that you do more and the walks that so many other people do, and the fundraising that goes on, you know, the control IQ and other closed loops, hybrid closed loops, I need to be careful. You know, it's not going to happen. And I know a lot of times like, because I see the comments, people don't know that jdrf does these kinds of things. They just kind of think it springs up. But I wanted to tie all that together. As you mentioned it since we already talked about it this episode, and it's just really important to me to have that link. If that makes sense. I feel like I'm helping Moira McCarthy 33:38 even further back from that type zero, when the very first continuous glucose monitors came on the market. No one was buying them. They weren't getting any attention. Zero insurance companies were covering it. And so at showed her up and I was one of the lead people on this. I chaired advocacy nationally and stuff like that at the time, but a whole team of us The first thing jdrf did was no company wanted to fund studies. The NIH didn't want to fund studies. No one cared about CGM. So jayda funded studies in six centers across the country, on children and adults in CGM. And those were the very first studies that showed that they would make any difference. And that's when companies started saying, Hmm, maybe we might want to invest in this product. So then companies invest in the product. And what we did is we physically and I was one of these volunteers found people in large insurance companies, because no one was covering them, and filled out their paperwork with the mic by hand, got them covered in all the big companies. So then we could say, well, there's a precedent for you, someone's been covered in your company. And that's how they got covered. So that's all I just thought that was an interesting little It Stacey Simms 34:48 is alright, we'll have to talk to jdrf. We're going to do the Time Machine thing where we go back and talk about CGM and the artificial pancreas project and all that kind of good stuff. A great idea. Yeah. But more thank you so much for popping on and sharing some of your wisdom. We're not doing this every month like we were last year, but we'll do it here and there. Moira McCarthy 35:07 Yeah. Thanks for having me. It's always good to catch up. Stacey Simms 35:09 All right, and I'll be consulting your book for Benny's driving contract as soon as we Moira McCarthy 35:14 add the CGM thing. Don't forget no looking at your CGM. I love Stacey Simms 35:18 Alright, thank you so much talk to you soon. Unknown Speaker 35:25 You're listening to diabetes connections with Stacey Simms. Stacey Simms 35:31 I'll link up all the information on things we talked about at the episode homepage at diabetes connections.com. And wherever you listen to the show, a lot of people listen through social media or on apps. That episode homepage has all of the information. And starting this year, every episode has a transcription as well. So go ahead and please check that out. Isn't it funny though, how I remember that blog post and exactly where I was when I read it. It's just funny how things stick with you and I can't believe it was more than seven years ago. Now. Oh my goodness. All right, I will have Tell me something good in just a moment. But first diabetes Connections is brought to you by Dexcom. Do you know about Dexcom clarity, it's their diabetes management software. And for a really long time, I thought it was something just our endo used, but you can use it on both the desktop or as an app on your phone. It's an easy way to keep track of the big picture. I have been checking it about once a week, I'll be honest with you, since we switched over to the control IQ software, I am checking it more often. Just because this is new, and I want to see the trends, but it really does help us dial back and see the trends and not overreact to just what happened one day or one hour. Those overlay reports help the context of these glucose levels and patterns and you can share the reports with your care team, which makes appointments a lot more productive. managing diabetes is not easy, but I feel like we have one of the best CGM systems working for us. Find out more at diabetes connections calm and click on the Dexcom logo. A couple of days ago, Don Muchow took off running, and he is not gonna stop for quite some time. Don is running across America took off on February 1, and he is estimated to reach the finish line on May 8, he is heading east started in Newport Beach, California. And the plan is to run 2830 miles in less than 100 days. The goal here is to make the fastest to Wendy crossing to date because other people have done this. But he also hopes to compete the first ever solo run by anybody from Disneyland to Disney World. I will link up all about Don because this is obviously not his first time doing something like this, although I think this is the longest one, but man, it's wild and he's got the whole route. You can support him. You can can track him, you can join him. He is doing this with the support of many people and not least of which is coming from his wife who's driving the support van. And one of the things that stuck out to me as I was reading about Don, is that he didn't do his first five K, until he was 43 years old. He was diagnosed at the age of 12, in 1972. And at the time, they really thought it was just too dangerous. You know, there was no easy way to check blood sugar in those days. So they said, you know, skip gym class, don't do a lot of physical activity. And he says he followed those instructions for a long time. But when he was 44 years old, he needed treatment for diabetic retinopathy. And then he decided, look, it's only going to get worse if I don't make some changes. And that's when he decided to start running. Well actually started walking. And this is a great article from diabetes forecast magazine. I'll link this up, and you could read the whole thing. But he didn't start out with an iron man. He and his wife decided to start eating less and then they started walking. He said it was boring at first, but then it got more fun, bigger accomplishments. And then he ran his first five K. And he went on from there. He eventually founded a chapter of the diabetes and exercise Alliance, which is a community of people who are really active with diabetes. And really active seems like an understatement when you're talking about crossing the country, just on your own power. There are two people with type one who have done this before we actually spoke to one of them. We talked to Noah Barnes and his dad, Noah walked in 2017 spent the whole year basically, and is holds the record for the youngest person to cross the US on foot. So I'll try to catch up with Don as he is on this journey or shortly after, but again, I'll link up all of the information because the route is there, how to support him, his there and all the dates and everything else. So I urge you to follow along and they're also posting all this stuff on Facebook to T one determined all one word, Type One Diabetes run across America. The page and he's reporting you know everything blood sugar's food, sleep, whatever you want to know. This is great. We're all behind you done. Good luck. Tell me something good. Quick little update on Benny. Many of you have been following his injury this year he started out on the high school wrestling team. And the got pretty badly injured in October needed knee surgery. It wasn't really wrestling, it was just bad luck. So he is doing much better now. He's been off the crutches since the beginning of January, hallelujah. He's feeling great. He is dying to get cleared or ready to wrestle, but it looks like he's not going to make it by the end of the season, which is really the end of this month. But you know, it's hard to have perspective when you're only 15 but the doctor is really looking at this as a long term issue and doesn't want him to have any problems when he's 30. I think Benny would trade that right now given the choice to wrestle a couple a match. But of course, we're gonna kind of let him and luckily his coaches gonna let him either. I'll keep you posted as that goes because we were really in interested to see how he would do with diabetes. We got the blood sugar stuff kind of under control at the beginning of the season after some serious lows and some big problems with I mean, he had one practice I told you where he 75 uncovered carbs, holy cow. It's such intense physical activity. But we're more concerned and curious now about keeping gear on. Because when he actually wrestles, which he hasn't done yet, he's done it in practice. But you know what I mean, we had to figure out where to put the Dexcom the pump, he wears a tend to pump, he can just clip that off for the match. But the Dexcom is gonna be really interesting. So I'm talking to some people who are in the wrestling community. And we're going to figure this out because he will be back on the mat soon, even though the season's over the club season apparently will continue and he really wants to participate in them. So I hope it continues. It will be fun to see and I hope we can experiment with different places to put the decks and see what goes on with that. My next trip is in March 1 weekend in March. I will be in Wilmington, North Carolina. Really excited to go to their first JDRF summit there. It's gonna be a little cool to hit the beach but Wellington's always a fun place to go hang out. thank you as always to my editor john kennis from audio editing solutions. Thank you so much for listening. I'm Stacey Simms and I'll see you back here on Thursday for our minisode Unknown Speaker 42:20 Diabetes Connections is a production of Stacey Simms media. All rights reserved. All rounds avenged Transcribed by https://otter.ai
Watch your language! That's what Stacey is trying to tell herself this week. When you're a parent of a child with a chronic condition, it's hard not to say things like "our diabetes" and "our CGM graph." But it's not "ours" exactly, so how do we better talk about this? Check out Stacey's new book: The World's Worst Diabetes Mom! Stacey also shares her frustration as she finds herself falling into the trap of perfect numbers and trends. While her and Benny's experience with Control IQ has been wonderful so far, it's also bringing back some of that perfection trap she thought she'd left behind. Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription Stacey Simms 0:00 This episode of Diabetes Connections is brought to you by the World's Worst Diabetes Mom: Real Life Stories of Parenting a Child With Type 1 Diabetes. Available as a paperback eBook and audiobook. Learn more at Amazon or diabetes dash connections.com. Announcer 0:15 This is diabetes connections with Stacey Sims. Stacey Simms 0:26 Welcome to another week of the show. I am so glad to have you here! This is one of our minisodes the shorter episodes that have become sort of the editorial page. If you look at the podcast as a newscast, as I often do. That's my background. I'm a broadcaster local radio and television for many, many years before I started the podcast. So the Tuesday episodes which runs longer and usually have an interview with a newsmaker. That's the news. And then these episodes have kind of become the editorial. And this week, instead of the headline stop doing this or think about before you do that, which I've been Doing a lot lately. I'm going to talk about why I think what I'm doing is wrong. And maybe you could help me with that. I know I'm not alone. But I'm going to tell you straight up here. I don't really have the answer for what I'm going to talk about today. And this is really about parents. But I'm hoping that if you're an adult with type one, you will listen to this as well. Maybe it'll sound familiar to you, maybe your experience can help us. So this is all about my struggle, to, in a nutshell, stop thinking about it as my diabetes. It's not I know this in my brain. My son has type one diabetes, he was diagnosed right before he was two. We have been living with this for 13 years. And sure, my family is affected by diabetes. My family has to deal with diabetes, but my son HAS diabetes. And I'm kind of exaggerating, but you'll get a better idea in a minute why I'm saying it in such strong terms, because I know this is not helpful. So I'm going to tell you a story. This story happened in December, a couple of weeks before we got control IQ, the new hybrid closed loop system from Tandem. It does tie in, I'm going to tell you about our experience with control IQ, and then how it relates to all of this. If you've seen me talk or you read the book, you know that I'm really fighting against this pressure for perfection. And I think and it makes me laugh that a lot of people like I was just in Raleigh this past weekend talking to parents about this. A lot of people think that I now have this down pat that I know, that I that I am perfect at not being perfect. And I think what's really funny is, it never ends, right. There's no finish line to parenting, where you're like, Whoa, great job. I'm, I'm all set. right good for me. I did it. I mean, there are big milestones, like college and when your kid moves out permanently, but I really don't think that there's a point at which we can say, that's it. So we're all trying to improve. And I think this story will highlight really just What a dingaling I can be sometimes, because this stuff isn't easy, right? And we're always trying to improve. So let me tell you the story, and then you tell me how to improve. Alright, so this happened, as I said, in early December, so almost two months ago now, Benny was right in range before bed. He was hovering right around 125. And for the last few weeks before this, he'd been dropping about 15 to 20 points overnight. That was it. Right? Just a little drop and then steady. So that was a fine number to just leave alone. But he texted me because this is how we communicate in my house, even if we're in different rooms. Right across the hall. He texted me a few minutes before I was gonna go in and turn out his light. And he texted me I feel really low. In my head looking at the dexcom I said, You're not low. You're 125 I don't want to treat that. You're going to mess up our great trend. And you're just going to go high. You're going to mess up our great numbers. I didn't say that out loud. I went into his room and this is what I said. I said, “Really? Because Dexcom says 125. You feel low?” And he said, “I feel like I'm dropping. See now I'm 117.” Even without the Dexcom number moving down a smidge. I knew my hesitation was selfish and misguided. Alright, it was dumb. He's not foolproof, but Benny knows his body. He has been living with diabetes for 13 years. And he felt low. And in my head, I'm like, “Stacey, come on. These are his numbers.” Did you hear me earlier when I said, you're gonna mess up our great numbers? I mean, I, it hurts me to admit that. But it's his number. It's not mine. It's not ours. So I said, “Okay, I trust you. Let me grab you a drink. Do you think you need more than that?” “Nope, just a juice box should be fine.” Benny sleeps with an apple juice bottle by his bed. But it's it's a full like 25 or 30 carbs and he didn't need that much. So I grabbed Little can of pineapple juice, and I poured about 12 to 15 carbs, like a juice box, basically, over ice in a highball glass, because sometimes it's just gotta be fun. And in my head, I was kind of feeling guilty, even though I hadn't shared with him. I'm trying to make up for that by the splashy cocktail. So he loved that. And he drank the juice and he went right to bed. Now, I assumed I was going to hear that Dexcom high alarm pretty soon. I mean, I went to bed, but I just figured out right, I guess I just gave him 15 carbs he didn't need but instead, I woke up at 5:50am like I do every day. It showed that he had stayed between 100 and 130 all night long. He had been feeling low, he did need that juice. While I am thankful that I didn't go into his room and say, “don't mess up our numbers” I didn't say what I was thinking out loud. It bothers me that I thought it at all. I mean, after all this time I do trust Benny with diabetes. I do respect his decisions. And I know that even though he is from perfect, right? He really is safe and happy. So why do I still have those thoughts at all? It's not about the good health outcomes. I mean, that's the first thing we think of as parents, right? We want our kids to be happy and healthy. And I would be lying if I said, Well, it was out of health concern. It was because I wanted to make sure that he felt good, and could sleep well and have a great day at school the next day. That's what I'm supposed to say. But it was about the straight-line graph. It was about wanting, I don't post them, but it was about wanting to not mess up the pattern we were on. I mean, what, would I really rather my son feel crummy and ignore what he has to say to me, showing him I don't trust him. I don't respect him to see that kind of graph. Ah, so how do we get past that? Not only am I not answering that right now, I'm going to tell you another example of how it's now getting worse. And this is because of control IQ. First, let me say I love this system. tandem is not a sponsor of the podcast. They're not telling me what to say. Not that they ever did. But man, this is an incredible piece of software for us. I am so excited. We've had it as I'm taping the podcast, we've had it for about 10-11 days now. And in the last seven days, Benny's blood sugar has been in range 70% of the time at minimum, I think only for two days. For the most part, he's been in range with less work a lot less work. I don't think in the last seven days he has bolused for a correction, it's only been for food. Now the first couple of days we did have to do a lot of adjusting. And this is very typical. If you are on any kind of hybrid closed loop system and this is includes the DIY systems is my understanding the people I've talked to, you realize right away that most of your pump settings that have worked pretty well for you all this time are wrong. It's just that we are manually compensating for defaults. We're paying attention like we're supposed to, we're checking that Dexcom, we're poking the fingers a million times a day, right? We're really manually using the pump to get the most out of it. And not letting it run on its own. Because it's dumb, right? It's not a smart pump. Most of these pumps, most of the programs that we've had until recently, they're just a dumb brick that gives you insulin when you tell it to. And when you switch over to the automated systems, you really have to trust and you really have to adjust. Because not only is the insulin duration all for most of us, but your basals are off, your sensitivity factors. I mean, I'm not going to go into too much detail here of all of the changes we had to make. But you do have to take your time with this. In fact, as I'm telling you this, we are still at the very beginning of making the changes here, even with those great outcomes we're seeing. I haven't changed anything in about five days. I've talked to Benny's endo, and we're going to wait another week probably just to kind of let it play out and see what really needs to adjust cuz it gets harder, right? The more in range you are, the less you want to tweak, but I know we can make it even better. But in a nutshell, we had some incredible lows like sustained under 50 lows that we hadn't seen and of course we overtreated for those. And then we had the perfect storm over a weekend of a birthday party that was an overnight party, huge dinner that he completely forgot to bolus for and then tried to make up for half an hour later at a bent canula. So that was high, high, high high for hours and hours and hours, which you know, of course, messed up my control IQ graph. And I am not kidding. Yeah, I know he was high. I know that he said he felt fine, but you know, he didn't feel great. I know that while Yes, his health is my number one concern in my little brain. I'm thinking, well, I want to show our control IQ graph and how great it looks. And I want to be like all those other people I'm seeing with their great results right away and isn't this supposed to be amazing and I want better results. And that's what I was mad about. You know, I feel like a dummy admitting to this. But I know I'm not alone, because I am seeing a lot of my mom friends. And a lot of people I don't know, on Facebook, who are not necessarily saying it as plainly as I am, but who are definitely struggling. And sure we're struggling with the actual numbers. But I think we're also struggling with the expectations and we're struggling with our kids are old enough to do a lot of this themselves. So we're struggling now. With How do I and I'm doing this to Benny? How do I not helicopter, right? How do I not say to him five or six or seven times a day? Did you bolus? What did you do? What's going on? What do you think? How about this? Did you check? I mean, we don't talk about diabetes all that much in a day to day basis. But with control IQ and wanting to know what's going on with it, and wanting to be able to tweak it and make the adjustments. You have to talk about it. And we're out of practice. So I said to Benny, a couple of days in Look, you're just going to have to be patient with me, you understand why? If I'm driving you crazy, you have to tell me. And if you just want to give me the pump and walk away, so I can see what you did, that's fine too. But we have to find a way that I can see what's going on without driving you bananas, and that you can feel good that I'm still trusting you, I still respect you, I still think that your decisions about your body are ultimately the most important. But I need to help you with control IQ. Because at 15, and everybody may be different. But my kid is not old enough to really go through this and troubleshoot. And he's not interested. I mean, he didn't even really want to watch the training. He wants me to tell him about it. And that's fine for us, because we've talked about it now and I feel a little bit better about it. But and I'll share another embarrassing thing. I just said that, you know, the last seven days, boy, he's been in range to 80% of the time. Well, today he's kind of struggling as I'm recording this. I'm not exactly sure what's going on. But he got to school and he went over 200 He probably ate some thing, right? I mean, it's not it. You don't have to be a genius to figure this out. And then he went back down. And in my head, I'm like, should I text him? No. Should I find out? What's going? No, you should leave them alone, Stacey, which I did. But I'm also thinking, Oh, I really hope that we're in range. But in my head, I'm thinking, Oh, I really hope we're in range more, because I don't want that 80%. It's messed up. I mean, come on. Oh, this stuff is not easy. I think acknowledging that It's troublesome to think this way, is important. I think acknowledging that I'm still going to think this way, is important. I'm trying to work it through and change it. Thank you for being my therapy on the show this week. Maybe I'm yours as well. If you have similar thoughts. I'm not really sure how to get past it, other than to acknowledge it and talk it out and laugh at it a little bit. Do you have a better idea? Do you have a way that all of us who are thinking about these lines And graphs as ours, and I'm not talking about younger kids, it's so different when your kid is two, or four or seven, or even nine. But once they're in middle school, you know, this transition, to independence, their own care for them to think about it, to take ownership of it, to know that you trust and respect to them. Even if you're questioning, I trust and respect my husband doesn't mean I don't ask him questions, right? It's a difficult transition. But it's such an important one, because soon enough, he's going to be in college and independent, and he's going to be out on his own independent, if I'm lucky. So I do think it's worth discussing, even if it's a little embarrassing. And I was at a JDRF conference this past week that I mentioned in Raleigh, and I brought this up, I was with three adults with type one. And I mentioned I was going to call myself out on the podcast this week because of my graph thinking about it as my numbers. And their reactions were really interesting. They didn't tell me I was a terrible person. They didn't tell me I was a helicopter mom. They just said yeah, it's Gotta be tough. It's got to be hard. But it's really important to know those are not your number. It's not your diabetes. I think something else that's important to keep in mind is, this is so new, right? These closed loop systems are so new, there really isn't even a good instruction manual for how to know what your pumps settings should be adjusted to 10 history, the great job with the training, I think endocrinology practices are doing a great job with helping people but let's face it, most of us are getting advice on how to adjust this stuff from Facebook, which is not the best place ever, because I'm seeing a lot of people had a lot of highs, we had a lot of lows, the advice there is not going to be comparable, right? So I'm going to give myself some grace. I'm going to give myself some patience. And I'm going to hope that I get better at this, that I continue to see the humor in this that hopefully Benny continues to see some of the humor in this and that I can continue to watch my language. I don't mean keep it PG. I mean to watch my language so that I am not saying my, when it comes to graphs, or diabetes, or more importantly, maybe most importantly, about how Benny feels, right? Isn't that the most important thing? I can see that number, but it's really about how he feels, how he wants to react at 15 years old, it is well, to the time to let him do that. So I hope I can continue to work toward those goals. Well, now you know why I am the world's worst diabetes mom. I really hope that if you get a chance to check the book out, you let me know what you think about that as well. It is available as an audio copy and you can get that for free. There's lots of opportunities there. I will link up all this stuff on the episode homepage. There's also a transcript of every episode beginning this year, and that's very popular now. So I'm hoping to go back soon and transcribe more of the episodes. We have almost 300 of them now. Holy cow back next week with our full Interview episodes. In fact, next week more McCarthy is back, ask the de moms is back. And we're gonna be talking about a variety of things, answering your questions, including talking about driving, because Benny just got his promise. And yeah, we're trying to figure all of that out as well. Oh my gosh, this stuff never stops. So I will see you back here for that on Tuesday. And in the meantime, be kind to yourself. Benny 16:27 Diabetes Connections is a production of Stacey Simms media. All rights reserved. All rounds avenged. Transcribed by https://otter.ai
This week.. what is monogenetic diabetes and why should we – on a mainly type 1 diabetes podcast – care about it? The majority of people with monogenic are misdiagnosed as type 1. People like Kristin Skiados who thought she’d lived with type 1 for 38 years and her daughter Ava, was also misdiagnosed. MODY Quiz - Probability Calculator We’ll talk about how this could happen, what it means for the rest of us and what monogentic or MODY is all about. Check out Stacey's new book: The World's Worst Diabetes Mom! In Tell Me Something Good, how a little sister’s diagnosis changed a sibling's outlook and career.. And what the heck is a diabetes merit badge? We’ve got em! (Find out more here) This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode transcript (rough transcript, please forgive grammar, spelling, punctuation) Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Real Good Foods, real food you feel good about eating, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer 0:21 This is diabetes connections with Stacey Simms. Stacey Simms 0:27 This week, what is monogenetic diabetes? And why should we on a mainly type 1 diabetes podcast care about it? Because the majority of people with monogenetics are misdiagnosed. people like Kristin Skiados who thought she was living with type one for 38 years. Kristin Skiados 0:44 It really was a phone call that was the answer to a new life. And it was probably the first time that I was speechless on the phone and the fact that That this meant there was a possibility to not be on insulin was just amazing Stacey Simms 1:06 Kristin’s daughter was also misdiagnosed. We'll talk about how this could happen, what it means for the rest of us and what might have genetic or MODY is all about in Tell me something good. How a little sister's diagnosis changed a sibling’s outlook and career plans. And what the heck is a diabetes merit badge? I got them. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. I am so glad to have you along here on Diabetes Connections. We aim to educate and inspire about type 1 diabetes by sharing stories of connection. I'm your host Stacey Simms. My son was diagnosed 13 years ago right before he turned two I don't have diabetes. I do have a background in broadcasting and that is how you get the podcast. Hello to any new people joining us from the Raleigh Durham, North Carolina area. As this podcast is airing, I am just back from the JDRF type one nation summit in that area and thrilled to meet many new people and see some familiar faces. Not too long a trip for me. Of course, I'm in the Charlotte, North Carolina area, but always fun to go to those conferences, see people in person, talk about the show, talk about the book, the world's worst diabetes mom, and make those connections that I care so much about. And this is the second time that I have taken the diabetes merit badges on the road. I am so excited about this idea. This came to be I guess it's one of those ideas that came kind of suddenly but then was also years in the making. I have always thought that we deserve like a gold sticker or a huzzah! Or hurray when something goes right in diabetes land. You know,There used to be a joke in the community that when your meter read 100 that confetti should come out of You know, stuff like that. But when I was writing the world's worst diabetes mom I even mentioned in one of the chapters when I talk about the first injection I gave Benny at home that I really felt like I had done something monumental and I wanted to you know, shout it to the world. And that's how the nighttime ninja sticker was born. So they are kind of silly. Yes, there is one that is a nighttime ninja. These are actual stickers. When I say merit badge, I mean, these are stickers that you can buy things like date night diva, which means you had a conversation without checking your CGM data 1000 times hold music marathoner finally spoke to a supply company representative dia-diplomat, calmly explained that sugar doesn't cause diabetes, insurance hoop jumper, and on and on. A lot is are geared to diabetes parents, which is obviously my perspective, but I teamed up with Rachel at diabetees who's a previous guest to the show and very popular in the community for her amazing shirts at her great Etsy store. So I'm going to link up in the episode homepage and on social media, more about these stickers, you can buy them in batches. I also have a sticker that's not in the Etsy store yet. And it is wanted for not waiting. It's the DIY cowboy sticker. Because that is for my friends at night scout and all of you who are not waiting, we're gonna do something fun with that, maybe a fundraiser for them. We're still working out the details. As I said, this came on kind of quickly. I decided in December that this might be a really fun idea. And I called Rachel and she was like, Yes, I'm in and I gave her a bunch of the ideas. And she came up with a couple of them herself. And then she's a genius when it comes to the pictures and the drawings and it really came together beautifully. So right now, there will be a link in the episode homepage. Diabetes Etsy store is the only place you can buy the stickers right now. And I have them on my book tour and Rachel as she goes out and about the conferences, she will have them as well. I'm really excited about them. They're very funny and silly and just a little bit of a pick me up. And if you have ideas for these as you see them and you can see all of them and her Etsy store, let us know we will definitely add as we go if they're popular and people really want them. Love to hear what you have to say A quick note, this interview is longer than usual. But it is a very complex, frankly, and a very interesting subject and I didn't want to stop talking about it. So I'm doing something a little different. For this episode, we're going to do about half the interview. Then we'll go into our Tell me something good segment. And then I'm going to pick the interview back up. You can always listen to episodes on your own schedule, of course, but I just felt this was a really nice way to lay this episode out with an interview. That by itself is more than 45 minutes. Regardless, the whole thing will be transcribed on the episode homepage. I am thrilled people are loving the transcripts. So if you are one of them, please reach out and let me know. I'm so excited to finally be able to offer this I know a lot of people wanted it Thinking about trying to go back and do more episodes in the past, we shall see. All right diabetes Connections is brought to you by Real Good Foods - high protein, low carb, real ingredients. easy to find in a store near you, you can just go to the website, click on that store locator. Type in your zip code in our area. I can find them at Publix, Harris Teeter and at Walmart. And if you'd like to order, their website is fantastic. Lots of great options. I mean, all of the options are on the website. Great breakfast sandwiches, grain free, high in protein, low in carbs, because they use ingredients like cauliflower instead of processed flours or processed starches so you don't get those weird sounding ingredients or weird preservatives. And you can find the list of ingredients right online very easy for the all of the ingredients are on the website, find out more, go to diabetes, connections dot com and click on the real good foods logo. My guests this week are here to talk about monogenetic, diabetes The type of diabetes caused by a genetic mutation. There are about 10 different types of diabetes that are genetic like this. And we are talking about a specific one today. These are all very rare. Together, they account for about one to 2% of all types of diabetes, but they are very often misdiagnosed, and usually misdiagnosed as type one. If you have monogenetic diabetes, you almost always don't need insulin, you take oral medication, so it is a big deal. Now I have to admit, I struggled a little bit with this interview. I remember vividly researching, when Benny when my son was diagnosed, I was so hoping that it would be monogenetic, MODY or something else. And I struggle now, because there's not an easy test for this. You can't just call your doctor and get a quick result. As you will hear it is more complicated. So as you will hear me ask, what are we supposed to do with this information right? My guests are Kristin Skiados who lived with type one for 38 years before genetic testing showed she didn't actually have it. And we'll hear briefly from her daughter, Ava, also misdiagnosed for years. And Dr. Tony Pollin, a Board Certified genetic counselor, a human geneticist, and she works with the mano genetic diabetes research and advocacy project that is aiming to get universal access to diagnosis and individualized treatment. So here is my interview all about monogenetic diabetes. Dr. Pollin and Kristin, thank you for talking to me. I am fascinated with this and I'm so excited to learn more. Thanks for spending some time with me. Dr. Toni Pollin 8:43 Thank you for having us. Stacey Simms 8:46 Let me start with with you Dr. Pollin, let me just ask you, what are we talking about here? You know, I know people we know there are different types of diabetes. But what is mono genetic Dr. Toni Pollin 9:00 So if you just kind of, you know, break down, monogenic, you have mono, which is one, and then genic, which is gene, what it means is that there's one gene that's really important in certain cases of diabetes. And we actually know that almost all diabetes is highly genetic. It has a lot of hereditary influence, you know, so their genes, their variations in our DNA that we inherit for from our parents that act in concert with other factors to determine whether or not we get diabetes and whether or not we get type 1 diabetes, or type two diabetes, which even itself is a lot of different diseases. But for some cases of diabetes, the genetics is actually a lot simpler. There's some very specific change, like a misspelling and a gene that causes a person to have diabetes makes them very, very likely to have diabetes really explains most of it. So when we say monogenic, we mean that the cause of the diabetes can largely be explained by a change or difference or mutation in one single gene and that person, Stacey Simms 10:07 and how is it treated? Dr. Toni Pollin 10:08 how its treated is it depends on the type. So it's going to sound a little bit contradictory because I just said monogenic. But there's actually several different forms because depending on the individual, they might have their several different possible genes that can be involved. But when an individual has monogenic diabetes, it's one gene. Again, that's explaining most of their diabetes. And so depending on the type of diabetes, the treatment will vary, so some types of monogenic diabetes, the diagnosis doesn't make that much of a difference, but the one that's ones that were most interested in and actually the most common types, that does make a difference. So there's one type of monogenic or one kind of group of types of monogenic diabetes called maturity onset diabetes of the young, and that sounds like a strange name, but that was an observation made in the 70s 60s 70s even earlier, when it was realized that some children had diabetes that looked more like the type that older people got. They didn't need to be treated with insulin and they actually some of them responded really well to oral medications. And so getting back to your question, which is how is it treated? Some people with certain kinds of monogenic diabetes called sometimes these types are called Modi, three and moody one, and they're caused by genes and changes in genes.. And those are treated with low doses, a very old class of drugs called sulfonylureas, and these are drugs that help the pancreatic beta cells to make and release insulin, Stacey Simms 11:44 those medications is that like Metformin or these oral medications? Dr. Toni Pollin 11:48 There are medications but what's interesting is back when these types of diabetes were first discovered, when it was discovered that you know you had these children who didn't quite fit either way, they were kids They were part of the way they why and maybe part of why they call it maturity onset diabetes of the youngest because they responded to the medication that was used in adult diabetes, Metformin did not exist. Back in the 60s, there was only one kind of oral medication, there's only really one medication besides insulin that could treat diabetes. And that was a class of drugs called sulfonylureas. So that's things like glyburide, and other drugs like that. And what those drugs do is they help the body to make insulin. They help to stimulate the body's capacity to make insulin and to secrete the insulin and really they said stimulate the body's capacity to secrete the insulin. And so the drug Metformin is is among many drugs. And sulfonylureas still use, but Metformin is actually safer. And so and it's, it's often the first drug that's tried and type two diabetes. The problem is if you think somebody has type two diabetes, and they really have one of these modes, These are these transcription factor types of diabetes, then they won't respond because their problem is in secreting insulin. Metformin helps you to respond to insulin. Metformin is what's known as an insulin sensitizer. So, Stacey Simms 13:12 but I took you down that road because I mentioned Metformin. Dr. Toni Pollin 13:15 So that's fine, though, because that's important. And that's actually ironically, one of the reasons why a misdiagnosis is even more of a problem today than it was a long time ago, because it used to be that people were treated with the type of drugs that actually work with monogenic diabetes. Yeah, so yeah, so but that's just one of the treatments. Now, there's another whole kind of class of monogenic diabetes that doesn't actually require any treatment. And so this is due to a partial deficiency of an enzyme called glucokinase. That kind of tells the pancreatic beta cells that there's glucose around and catalyzes a chemical reaction to people who have that form. They actually have a lifelong Mild hyperglycemia that if it doesn't have any other causes, then it's it's largely benign. And it actually doesn't respond very well to treatment. So knowing that you have that form, which is called glucokinase diabetes means that you could discontinue treatment. Stacey Simms 14:16 All right, Kristin, let me bring you on because you lived with what you thought was Type 1 diabetes for a very long time. Can you tell us your story? Kristin Skiados 14:26 Yes, I was diagnosed at the age of five, back in 1980. And I had all the classic symptoms of type 1 diabetes. As a matter of fact, when my parents didn't know what was going on with me, one of my friends moms was a nurse. And she said, geez, yeah, I think she might have diabetes, and I ended up in the hospital and the very high glucose. they diagnosed me immediately with type one, and I was put on Matter of fact, I was put on purified pork insulin, and then move to bovine and, and I stayed on insulin for a better part. Love for 38 years. I didn't move on to a pump when I turned 25. And life was just normal for me. I don't ever remember not being diabetic. And I think that was a good thing. I was so young when I was diagnosed, and I don't know what life is like, not having it. And I know it was an adjustment for my family for my siblings, because, you know, my mom made them do all the same things I did minus the blood sugars and the insulin. But they had to eat it and they had to have snacks and they had to get up early to and it just became a norm in our house. Yeah, I went to college, I did all these great things, traveled, played sports, got married my husband and had two kids. Stacey Simms 15:57 Alright, so fast forward then. So Your daughter Ava, who is now 11. She was diagnosed with type one as an infant. And I imagine that that was, you know, devastating not only because you you've already been through it yourself, but she was so young she was 15 months. Right back to Kristin in just a moment, but first diabetes Connections is brought to you by one drop, one drop his diabetes management for the 21st century. One drop was designed by people with diabetes for people with diabetes. One drops glucose meter looks nothing like a medical device. It's sleek, compact, and seamlessly integrates with the award winning one drop mobile app, sync all your other health apps to one drop to keep track of the big picture and easily see health trends. And with a one drop subscription you get unlimited test strips and lancets delivered right to your door. Every one drop plan also includes access to your own certified diabetes coach have questions but don't feel like waiting for your doctor visit, your personal coach is always there to help, go to diabetes, connections calm and click on the one drop logo. Now back to Kristin, talking about her daughter's diagnosis. Kristin Skiados 17:17 You can have a little bit of the same classic symptoms that I had. A few things were different. And when I kind of looked back on it in hindsight, there were signals kind of all along, I think, you know, she had thrush in her mouth as an infant a few times. She always had yeast infections, diaper rashes. When I look back on it, we're like, oh, maybe this was the manifestation of this but when she was 15 months old, she was still 17 pounds. She was eating a ton of food. I mean, she was the top of the zucchini, whole sweet potato, half a chicken bread. You know drink milk yogurt. Then two hours later, we're drinking more milk or having more yogur getting up in the middle of night. He wasn't excessively peeing all the time. You shouldn't have frequent urination. But she was just underweight. You know, she was the amount of food she was eating didn't match what her weight should be. So I kind of had it in the back of my mind. Well, maybe she has diabetes. She had bronchitis before she turned a year old that we went and we got the blood work done. And her fasting glucose was not actually overly high. It was in I think, the 200 but she was diagnosed as type one. And we had compounded insulin, they had a you know, dilute her insulin because of her at her knees and, and it was devastating in the fact that this was something I never wanted her to have, you know, so there was this mother's guilt of my gosh, you know, she got this from me. And that was Very difficult to deal with and, you know, not so much myself having diabetes, but now my daughter was going to have to do the same things I have to do. And her life wasn't going to be normal. And we had to say goodbye to that normalcy was almost like a death. You know, it was the life that we knew was now gone. And we had to readjust and, you know, her insulin had to be on ice. I had to be cold all the time. So we were always walking around with our refrigerated bags, we have tons of ice packs, Stacey Simms 19:33 is it because it was diluted it had to be cold, Kristin Skiados 19:35 okay, and in where we live, we don't have compound pharmacy, so it had to be shipped from Baltimore. Well, and it's the same thing my parents went through this this everything's turned upside down and falling in her blood sugar's every night 7pm constantly changing insulin to carb ratios and, you know, she was on shots and half unit so you know, trying to draw half Unit insulin doses and it was overwhelming. And this is coming from me who's lived with diabetes. It kind of knows more than the average person, you know, but even still, it was a huge adjustment. It was really, really hard. It was a hard pill to swallow life. Now with two diabetics in the house. A lot of care went into Ava, you know, I kind of put myself on the back burner for a little bit trying to manage her and manage me and it was a challenge and being that younger son couldn't communicate with me, Stacey Simms 20:33 right? That's so difficult. So when in this journey then because here we are talking to you on a podcast about mono genetic diabetes. When did you find out what she really had Kristin Skiados 20:46 said we were at one of her just regular checkup appointments at University Maryland and Medical Center, and Ava's nurse. She had presented us with this study. Asked if we wanted to participate. And I spoke on behalf of Ava and said yes. And being a biologist myself. I thought monogenic diabetes. And when Ava was diagnosed, I kept saying, How does she get type one like there is that genetic component to it, but for type one day, I think to be passed on Dr. Paul, and you can certainly correct me if I'm misspoken here, there's a lower percentage of inheritance rate for type one computer, obviously, money. So I can see, you know, all the research at the time when she was diagnosed with stem cells, stem cells, stem cell, I wanted genetics, genetics, genetics, and nobody was doing genetics. And so when this opportunity came about, I was like, Yeah, I want to find out more about this. I'd never heard of monogenic diabetes. And I started reading up on it and I thought, This is what I've been looking for. This is what I wanted now. So we entered Ava into the study, and got our blood work done and just waited for our results. Stacey Simms 22:06 And how old was she at the time? Kristin Skiados 22:08 She just turned nine. Stacey Simms 22:09 Oh, so this has been going on for a very long time. This is her whole childhood. And Toni, let me ask you, I understand, how do you live with what you think is type one and it's really something else. I mean, is it dangerous to be on an insulin pump? Is it dangerous to be treated like a type one when you when you actually have something else? Dr. Toni Pollin 22:31 Well, in some cases, it's not necessarily acutely dangerous, you know, because the problem in all diabetes is the problem with blood sugar. And in certain types of monogenic diabetes, it's because you're not producing enough insulin. You can treat it with insulin and that'll be okay. But there's a couple of reasons why it would be preferable not to do that. And one would be of course, as I think Kristin and Ava will be able to tell you about Better than I can that most people seem to prefer taking a pill to wearing a pump or doing injections. But the other thing is that when you think about, you know, just think about anything that you have wrong with you. It's almost like you know, you can put a bandaid you can kind of treat it superficially, or you can treat it in a more in a kind of deeper way you can treat the underlying problem sometimes not everybody, but for some people, they might be fine on insulin as Ava and Kristin were, but you might be able to be even better if you're treating the underlying problem. Stacey Simms 23:31 Alright, so let's go back Kristin. Ava's nine, you get the results. Were you both in the study or did Ava get the results in that? They said, Hey, Mom, we better check you too. Kristin Skiados 23:41 Well, you know, when the study was first presented, I said, Hey, can I get in and they said only if Ava's positive and she presents a mutation. So she had her blood work done in May and we got the official diagnosis on December 5, and I get it. Like I always get choked up talking about that phone call because it really was a phone call that was the answers to a new life. And it was probably the first time that I was speechless on the phone with that with Dr. Three, and he had called me with the results. And the fact that this meant there was a possibility to not be on insulin was just amazing. When we were going through this study, we never really presented much to Ava, because we didn't want to give false hope. You know, we didn't want to build something up that might that may or may not be when we were going through this. You know, we just said what we're going to see if your diabetes can be treated differently. When we got the news that she had kcp diabetes, often known as MODY 13 this is one of the forms Where you can take sulfonylureas instead of insulin. But that's it, you know, it's a 90% success rate of 10% failure rate. So that was something that we didn't want to, once again get our hopes up with her. So we were very cautious with how we proceeded through this whole thing. You know, the news of her having this mutation was amazing. It was probably one of the greatest days of my life. And then that meant Hey, I get in the study to I was I was really happy about that as well. Ava came off of insulin within two weeks of taking the globe, your eyes is still on your reality. But it wasn't an easy process. It wasn't like just start taking a pill and come off insulin. You have to wean yourself off of it. She she had a difficult time she was low. Miss the time like in the 30s. It would take hours to come up I've had to like leave work and pick her up in school and Then you know, at night she'd be, you know, 400 and, and it was kind of like being in that first diagnosis stage all over again with CGM going off and we got her regulated and she's great. Her A1C was just recently like 6.2 I'm sorry. 6.9 she corrected me. I'm sorry. 5.9 Her A1C was 5.9. Yeah. She responded immediately to it like a one See, Why's she was down. Within two weeks of coming off of insulin. Her agency was down into the under seven, Stacey Simms 26:38 right and this 5.9 is now what two years later? Kristin Skiados 26:41 Yeah. Stacey Simms 26:43 And what happened was you did what did you get that phone call? What was that? Like? Kristin Skiados 26:48 I got a call from Dr. Street in February I think was right around Valentine's Day. And you know, she called and told me that I had the same mutation and It was, you know, once again that see it was like hitting the lottery. It was just something I couldn't believe I was hearing, you know, and of course, you know, the emotions come into play with it. And I thought when she was diagnosed with diabetes, I felt incredibly guilty that I had passed this disease on to her. And now when I look at it, I am so happy that if I pass anything on to her disease wise, thank goodness it was this because if she could still be on insulin, I could still be on insulin. And we're off and it's, it took me about a month to come off of insulin. I had a couple things working against me in this process. First off was my age. I was in my 40s to I think that oldest documented patient in literature was about 36. Oh, so there's a quite a bit of an age difference there. And plus I had died. I was on insulin for 38 years. Compared to another documented case, I think where it was significantly less, you know, so that 90% success 10% failure was pretty heavy for me because I wasn't necessarily responding to the medication as quickly as Ava did. I was kind of not having any lows. And I think Finally, like when I had my first low, I think I was in my classroom teaching, and my students were like, you know, what's wrong? I said, My blood sugar's low. And they're like, Oh, yeah, what do we do? I go, nothing. This is great I with them, because my students had kind of followed me and Ava kind of through this process. And I was like, No, this is I need this to be low. And then it took me about a month I came off of insulin essentially, it was April 28, is when I came off of insulin and I just had my A1C done, and I'm 6.5 Right now, and I take my glyburide twice a day Ava takes it three times. I know that my endocrinologist at Hopkins was shocked that I had a form of monogenic, and he's pretty keen on picking up things like that. But he said with my particular mutation, to KCNJ11. Geez, it mimics type one. And it's harder to identify a KCNJ 11 compared to that of a of a type one because they do mimic each other. Stacey Simms 29:34 Let me stop you just for a second. Toni. I have so many questions. I think you know, my first reaction as a mom of a kid with type one, it goes back to this first days where we're all thinking, couldn't this be something else? Isn't there another possibility? And I remember find it I found MODY and I found other types of diabetes and I asked my endocrinologist and he said, Stacey, I really wish That he could just take a pill, but this is type 1 diabetes. So am I now supposed to go back or all the parents and individuals with type one listening to the podcast? What are we supposed to do? Should we go back and demand these tests? Dr. Toni Pollin 30:15 So this is the really hard thing. So a couple things. One of the things that I do worry about and kind of want to temper is that, you know, of course, most people with a diagnosis of Type 1 diabetes actually have type 1 diabetes. And the the study that Ava and then Kristin were in the purpose of that study was really to find a realistic way to make sure not that necessarily every person with diabetes gets tested, but that every person with diabetes gets considered as a possible candidate based on certain red flags that clue you in so there is more overlap, I think that people realize and how people with different types of diabetes present and the resist study done. I sort of always knew this anecdotally, I come at this from kind of a unique perspective. I trained as a genetic counselor, and then went to Winton, and became did research and did a PhD studying the genetics of type two diabetes. And I realized that we had a lot of things we were promising about what would happen when we understood the genetics of type two diabetes and realizing that actually, with some of these monogenic forms, if we could just find the patients, we could already make a difference in their lives. And so I began to realize that it just often wasn't considered, or it was considered so rare, as long as not to exist. And then in 2012, there was actually a study published that was a study called the search study where they were trying to find all the diabetes, what caused diabetes and in a whole bunch of children at different centers in the country, and they found that you know, at least 80% of the time or more monogenic diabetes or specifically MODY is misdiagnosed, as either type 1 diabetes or type two diabetes, it can be mistaken. There are clues that you can look for. So how did Ava and Kristin end up in our study, when you know their own doctor didn't suspect them? So one of my team members I happen to have on my team, a mate, I'm not sure she may be the only physician who's double board certified in both endocrinology and medical genetics. And as one of our strategies, we had several strategies for identifying patients and trying to find ways of identifying patients and medical systems. One was using questionnaires to have simple questions for the red flags I'm about to tell you and also getting referrals. But also she just started she started to actually look up in the charts of patients who were coming for treatment for their next appointment to look for these red flags. So the one of the red flags we were looking for was children who are diagnosed before the age of 12 months, because we actually know that if they're if you're diagnosed before the age of six months, which is very, very Rare, the overwhelming majority of those cases are monogenic and not type one. It gets more and more likely to be type one as they get older, but the sort of gray zone, one of the things we were looking for was any children diagnosed before 12 months. Well, Dr. Street and saw Ava was coming in, she was diagnosed at 15 months, it was kind of Gee, isn't that you know, that's, that's pretty young. That's kind of borderline, you know, you sort of the line kind of creeps up, because you want to make sure you don't miss anybody. Then when we realize too, that, as Kristin pointed out that her mother also had type 1 diabetes, even though it's diagnosed with a little over age, that raised the suspicion. So that's actually one of the things they look for is when you see type one being transmitted from generation to generation, it happens and there's definitely an increased risk of children. But if it's monogenic, then the risk is more like 50%. So those are one of the things what's really important is that if it's type 1 diabetes, usually not always, but usually there are antibodies that indicate the autoimmune process. That says that the beta cells are going away, they're being destroyed by the immune system. But you have, especially the right antibody tests, and you don't have those antibodies, that's a red flag, it could still be type 1 diabetes, but when you get anybody's tested and you don't have them, then it raises the chance. The other thing is that the longer the C peptide persists, that also raises the suspicion because you know, C peptide, is a measure of whether the pancreas is actually producing insulin which you can measure even if a person is taking insulin injections, because it's it's the kind of byproduct of insulin that's produced by the body. Those are the kinds of things they look for sometimes somebody is we also look for people this has a really good likelihood of picking people up people who are diagnosed with diabetes, but it's not type 1 diabetes, like it's somehow it's known not to be type 1 diabetes, says Lena we might see some diagnosed with Type Two Diabetes at 25. Especially especially person is not overweight, not obese. So there's just see these sort of a typical situations that raise the suspicion. So you know, there's these characteristics. And we turned out that was our best characteristic for picking people up diagnosed with non type two diabetes and then we can non type one, then we confirmed it by looking at the antibodies and C peptide, then got hits is just, if you think about a physician who sees thousands of patients with diabetes, they're going to start to kind of notice like this one really looks a typical. So people start, you know, just noticing something a typical and sometimes it didn't always fit with the exact characteristics that we were looking for. But it almost fit and it sounded like it could be it sounded like you know, basically this is, you know, a child who maybe doesn't really need insulin. I mean, there are cases published there's an actual case report published of adolescent rebellion leads to diagnosis of monogenic diabetes because a teenager decided to stop using his insulin and was fine. And so they suspected. So I think earlier when you asked about, you know, what's the consequence of being on insulin when you don't need to be, I thought you might also ask, you know, why is this? Why are so many people you know, not correctly diagnosed. And that's it that there's some people not knowing about it. But then even if people know about it, then there's a lot of overlap. But there are these things you can do. There's a way you can put out links, but we've started to develop resources to help those patients and providers to start to think about it. And there's a website at the University of Exeter, where they have a calculator, where you just put in really basic information like hva watse. And whether you have a parent with diabetes, and it actually gives you based on their own database, the percent chance that someone you know, might have a mutation in one of these genes. But you know, as you can hear, no matter what you do, it's just not always straightforward. And that's what we'd like it to be. Stacey Simms 37:00 I just and this may sound very ignorant, so pardon me, I can't wrap my brain around the fact that we're all supposed to be so careful with insulin, right? And people are terrified to, you know, to give too much. And yet you got 4% of people with diabetes who don't need insulin necessarily, who are taking it every day and not having these terrible adverse effects. I guess my question is, I'm almost more confused. I might. So not everybody is supposed to get into the testing, but you could be taking 40 units of insulin a day, and have monogenic diabetes, not need the insulin and not know it. Dr. Toni Pollin 37:38 Right. So when I say not everybody should get genetic testing. I should probably rephrase that if there were a way and I believe there will be in the future for everybody to have genetic testing, then it would make sense got it, people if you know, I'll probably a lot of your listeners are, you know, podcast listeners are probably listening to some of these genomics podcasts. And you know, we're we're now at the point where more and more people have their whole genome sequenced in many of our kind of visions of, you know, what is genomic medicine look like, people often talk about, oh, I want to, I want to have genetic testing to see what I'm at risk for, I want to have my genome sequenced to see what I might risk for. But what I see is in the future, when everybody has access to their genomic data, then it could just become a very routine thing, where, you know, you get diagnosed with diabetes, and they run a bunch of tests, because forgetting about MODY, there's still tests to run to figure out what kind of diabetes you have, if you're, you know, if you're kind of on the border, if you're 29 years old, you're a candidate for type two, your candidate for type one, especially if you're, you know, if you're overweight, you know, some of these other risk factors. So in my dream, everybody has very ready access to their genomic data. And so so if somebody is diagnosed with diabetes, then you'll be able to run an algorithm that will pull up whether there are variants in any of these genes. It's just that we're not there yet, and it's still, there's still costs associated with doing genetic testing. So what we are needing to do right now kind of till we wait till the genome era is that we really need to pay attention. I think a lot of what we need to do is, is we need to, I think stories are the key. So that's why I was so excited to come on here with Kristin and Ava. Because I think that every story is different. And I got interested in this, for the reasons I said that I realized that there was a way that genetics could be used to help. And I A lot of what I knew was just from reading journal articles, but as I got started, you know, got funding for research and started doing the research and started talking to patients, I kept learning more and more nuances. And so I think one of the keys is just finding out I think there's a whole lot to this that we don't know because we don't know the full extent of the patient lived experience, but when we do that will help us to help other people. Kristin Skiados 39:51 I would have never known I was a monogenic diabetic, had it not been for Ava because my people Parents don't have diabetes, there is zero history of diabetes in my family. So if it weren't for Ava, having diabetes, I would still be on an insulin pump and I would still be taking insulin and probably spend the rest of my life on insulin. So I'm very grateful, of course to my daughter for having diabetes is a weird thing for a parent to say. But when you when you look at, you know, the scope of kind of what's happened in our life and what and how we went from, functionally a pancreas that's because that's what our life had changed to, we kind of stopped being human, and we started being in Oregon. And there's not too many chronic diseases out there where you actually have to do the job of the organ that isn't working. And that's and that's what diabetes is and you become your band, forget, you know, but manipulating the pump and the shots and everything. To go from being a pancreas now to being a person, again, it's a pretty amazing thing. But once again, my position that I was type one the whole time. So if it weren't for Ava, being in the study, this would not be in my life today, being insulin free and on medication. hopefully at some point, people will have access to their genome to identify things like this so that you know, another person doesn't spend 38 years of their life taking insulin when they don't need to. Unknown Speaker 41:40 You're listening to diabetes connections with Stacey Simms. Stacey Simms 41:45 Much more to come. We will continue with our talk. The second half of the interview is coming up, including my chat with Ava, Kristin's daughter, and I want to let you know that if you're thinking what are my chances, what are my child's chances of actually having managed genetic diabetes, there's a short quiz you can take to see if it is worth talking to your doctor about this. And I am going to link that up on the episode homepage. It's just a couple of questions. I took it and really doesn't seem like it is worth it to talk to our doctor, but you can take it for yourself and find out more diabetes Connections is also brought to you by Dexcom. And you know, we started with Dexcom back in the olden days before share. So trust me when I say using the share and follow ups makes a big difference. And I'll tell you how long ago we started. We were cleaning out some things and Benny came running into my room and he's like, remember this and it was the share cradle. That's what for you new people. That's the only way we could share for a little while was plugging the Dexcom receiver into the share cradle. But you know, it makes such a big difference when you can see those numbers right. And you have to set parameters, at least we do about what I'm going to call him how long to wait. You know not to overreact to everything. It really helps us talk and work about diabetes less if you had a sleep over or away on a trip, it gives me so much peace of mind. And I really like that I can troubleshoot with him, because we can see what's been happening over the last 24 hours. And not just at one moment. Internet connectivity is required to access the separate Dexcom follow app. To learn more, go to diabetes, connections calm and click on the Dexcom logo. Time for Tell me something good. And I got a great message via Facebook from Christina and she writes, “I have a good news story for you. My older daughter Natasha, who is 24 has been a great help to her younger sister rose, six rows was diagnosed three years ago. And Natasha has been there for everything. The hospital stay the classes and everything in between. She is busy with her own life, but always had time for us and her little sister because of her sister who has type one And her brother who has Crohn's, she is getting her master's degree to become a dietitian.” Christina, thank you so much for sharing that. Thank you for the great picture that we will share on social media. You know, we know that any chronic condition is tough on the family, and it's tough on the siblings who don't have it, right, because everybody's life is affected. It is hard stuff to go through and make the siblings feel included. They get so much empathy and understanding, but there's can be a lot of resentment and normal bad feelings, too. I think it's important to acknowledge that. So I really appreciate you sharing this and all the best to Natasha, she goes forward in her studies Keep us posted. And Christina also added and I'll put the city but that's very self promotional. But Christina added that “I want to tell you how much I appreciate you and your podcast. So many times. I feel like I'm living in my own world with this crazy diabetes. I listen, and I instantly feel better. Thanks. Keep up the great work.” Well, Christina, you just made my day. Thank you so much. For that, you know, I gotta tell you, it's so selfish to do this podcast because I do it and I instantly feel better. It's really just a nice way for me to be connected to the community. It's really it's not a one way street here. So thank you for that very, very nice note. All right, let's get back to our talk on moto genetic diabetes. This is the second half the interview, and we're going to pick up here with a few words from Ava, who was initially diagnosed as a baby. But a study found that at the age of nine, she didn't have type one at all. And I want to let you know here, she talks about her insulin pump and her elementary school experience. And while everyone is different, you'll understand in a moment why I'm saying this, but this did not match our experience at all. And I think it's really important especially if you are newer to an insulin pump or considering one for you or your child, that if your child is being excluded, or cannot do certain activities with an insulin pump, or is being told they cannot. The staff at that school needs better education and It's a great idea to talk to your educator or your endocrinologist or even your pump Rep. To say, my child can't do this with this pump. How do we work around it? Because as you know, if you listen, having a pumps and stage two with tubes, pumps, and he never stopped my kid from doing anything. All right, so let's pick it back up. And here I am. I am talking to Ava, when your parents told you that you actually didn't have type one. But you had something else. Do you remember what you thought about that? Ava Skiados 46:29 I thought that it was worse, because my mom just told me that I didn't have type one, but I thought that it was a lot worse. Stacey Simms 46:38 And then they explained that it was good, just going to be different. And did you feel better about it pretty quickly. Ava Skiados 46:44 I yeah. It took like an hour before they told me that I just fell off of insulin. Stacey Simms 46:51 Do you remember? So it's been about two years. I'm curious if you remember what it was like to take insulin and where an insulin pump Ava Skiados 47:00 actually change my site every three days. And when I had to wear the pump, I had a cord. And it got stuck on things. And I couldn't do much physical activity or I could, but like I couldn't do certain things in gym, because it was off the little hack that connected to my catheter, or my pump was all about and a disconnect that way. So I couldn't do many things that other kids got to do. So just kind of like left out and sitting on the lawn, Jim. Stacey Simms 47:36 Oh, well, that stinks. Tell me what you do. Now, you don't wear an insulin pump. You take a pill a couple of times a day. Ava Skiados 47:43 I take the post three times a day. And every except for the fact that I can do more things that I couldn't do. I can go without I can just do Without leaving, as my mom can get a card calculated is this and I need to put it into my Stacey Simms 48:09 your mom talk about what it was like before cuz you know she thought you had type one also? Ava Skiados 48:16 Yeah, I don't talk about it. No one really brings it up. But if someone brings it up and asked me like how it was before I came off as one. I don't really like to talk about it but I can stuck with how I was before. Grab your eyes. Stacey Simms 48:34 Do you mind me asking why you don't like to talk about it? It's okay if you don't even want to answer that. Ava Skiados 48:39 Because I couldn't do a lot of stuff in school. When I was in like third or fourth grade, that's when I finally come off. But when I was in kindergarten through about third or fourth grade, I couldn't really do the last one. I couldn't do many, like I it was hard to do a play that I was it. They had a microphone and my side too, but it always got to hold on to the microphones. We had to readjust it regularly. Stacey Simms 49:17 Have you sat down and talk to each other about how extraordinary this all is? Because it's hard I think when you're the people in it to see. Kristin Skiados 49:26 Well, you know, when we were presented with the study option, you know, they thought like, Oh, we have to go we have to get blood drive. She was like, No, I don't want to do that they go you know, but you have to understand not only can this help us but you know, it can help other people and really, when we started getting involved with Dr. Poland through med rapid going to the French for life conference that you know, I totally event that, you know, what we're doing is helping other people. We're giving other people People the potential opportunity to experience life without insulin. And that's the beauty of medical research. And I've done a lot of different and participated a lot of different research studies, where, you know, we kind of get to see the outcome of that. And I and there's an intrinsic value to doing things like this and to talking about it tends not to talk about as much as I do. But yeah, like we've, you know, we've talked about, you know, why we're doing this, and you know, why we're doing the podcast and why we went to Florida. And that was one of the most fantastic diabetes conferences I've ever been to, and why we're sharing our stories because there's other people out there like us, and you know, she's 11 and, and she's in her little 11 year old world, and I'm not sure she really kind of sees, you know, the outcomes of what we're doing. I don't think she's going to really realize that until she's a little bit older. See, wow, you know, there's people in my high school that have monogenic it, you know, when she I think she begins to meet other people that have a form of monogenic? You know, when I was type one was diagnosed with type one, I was the only person in my town. And I was one of only like nine kids in northeastern Pennsylvania with Type 1 diabetes. So talk about being kind of your own being in a community. Everyone knew I was diabetic at the age that I'm at now and I'm a teacher. Every year I have the diabetic kids, they put them in my class, I think the conventional other diabetics, put them with sciatica, pain, you know, and even got a couple kids in her class that are type one, you know, and so you kind of feel that you're not alone, that you're not just this person with this one illness that, you know, doctors, you know, can treat but it's hard to manage. And I think that as we're moving forward with the research that Dr. Poland is done, that There's going to be a shift where Ava is not going to be the only monogenic, diabetic patient or kid in her school, or in our county, you know, or in Southern Maryland as a whole. Hopefully we'll see. There's more kids out there that had been re diagnosed with a form of monogenic. So we talked about it in terms of the value of it, but I think for an 11 year old, it's a little bit harder to grasp the big picture. When you're still the only kid in your school that monogenic, she's not the only diabetic, but she's the only monogenic kid. You know, when she started Middle School, we had to have a meeting with the administrative team and the nursing supervisor because they didn't know any of this stuff. Stacey Simms 52:49 Well, wait, let me jump in. Because I know we're getting really long on this interview guys, but I may have misunderstood so she takes a pill three times a day, but does she have to do anything else? Are you still checking blood sugar and worried about highs and lows Kristin Skiados 53:00 So you we are we have any we still do worry about her highs and lows. So I mean, if she's high, it will come back down when she's low. Yeah, we still have to treat it, you know, 15 grams of carbs. We still have that protocol. She wears a CGM most of the time. So she really just kind of checks in with her nurse and she has to take her glide right at lunchtime. So she visits the nurse there. But you know, when you're dealing with something that's not the norm, people get a little bit nervous with it. Stacey Simms 53:31 All right, before I let you go and Toni, let me ask you to weigh in on this one more time. I just keep coming back to what do we do? I know that in the future, hopefully we can get more testing. But is it a question now of Okay, my son was dead. Let's use me. My son was diagnosed at 23 months. He looks like classic type 1 diabetes. No one in our family had diabetes before him. I don't recall. You know, not needing Insulin at any way, shape or form. In fact, he's had that classic journey of teeny tiny doses. I remember growing up those quarter units in a syringe, we couldn't see it at all when he was 23 months, and then the basal rates doubling and then doubling again as he hit puberty. So I think we're probably not a good candidate to be tested for this. Right? It certainly Dr. Toni Pollin 54:21 sounds like classic type one, I should do my kind of disclaimer now that I'm not a physician. But, you know, I think part of the problem is that we still don't know what we don't know, which is why what we were telling people you know, when we've now we've been to Kristin and Ava and I were mentioned at Florida Kristin and I went to the friends for life conference recently, more recently in Falls Church and just the importance of getting those antibodies and the C peptide, because you know, to be No, I think it's becoming more routine to get them. But just because it's possible to even the C peptide, it's possible to not show When you see peptide in the blood because this particular type, so the type that Kristin and Ava are have is actually different than the main types they talked about, where you know, the insulin gets made, but there's this channel that doesn't function properly, and so the insulin can't get out. So I say, look for the typical cases. But if you have any doubts, if you're curious, at least make sure you've kind of had these these kind of baseline measures that make it clear that this really is type 1 diabetes, because we don't know every possible scenario that this can present as I also did want to say, because I wanted to kind of correct something a little bit you were asking earlier, you know, is there harm to being on insulin when you don't need it? I can tell you that this KTP diabetes is potassium channel diabetes. It's most common in you know, really little infants, like we're talking like zero to six months. And I've heard some of those parents, for example, there's a little girl in Chicago, who's actually in a movie called journey to a miracle if you know Educational Resource and her I've seen her parents speak and talk about how she would have hypoglycemic seizures because it was very difficult to control her in her glucose with insulin, especially when she couldn't verbalize what was going on inside what really struck me I went to actually the the premiere of the of the movie they made when they showed it in Chicago. And actually, I think this movie is available on Amazon. So if people want to see it, it tells some of the story but what really struck me was these parents many of these parents saw this as a cure, which kind of surprised me because I thought oh, we don't have a cure but it's better but it to them it felt like going from a kid with a with really difficult to control Type 1 diabetes to you know, manageable, mild type two diabetes like the other thing I should this is kind of really bringing up a whole nother subject but some of the kids who have these mutations it actually affects it has it has neurological function and actually affects some of their brain function and some of that can improve with the treatment as well. So that's just kind of extra, but kind of getting, you know, back to your question of what do we do? This is what's keeping me keeps me up at night sometimes, but it's keeping me in research. This is this is what my research is really trying to do. How do we address all these barriers? I mean, we've talked about some of the barriers, genetic testing can still be expensive. We need to communicate to insurance companies what the genetic testing does and how it's useful. We need to communicate to providers worldwide, when we do the genetic testing, we need to improve the dinette testing. So there are better at telling the difference between which variations in the gene actually cause diabetes. And so one of the other issues that I have is I have a worldwide panel of experts in monogenic diabetes that can pull together not only their knowledge, but they can pull together their cases. So to give an example, the mutation that Ava has, was only reported one time in the literature and because it was recorded in the literature. We were able to say that it was an important mutation in this disease, otherwise we wouldn't have been able to. And so the solution really is communication. That's why we're here on this podcast. And people telling their stories, working together, being open and finding more people so that other people can help come up with other creative, creative ways. So Stacey Simms 58:22 well, Toni, and Kristin and Ava, thank you all so much for sharing this story for giving us all of this information and for continuing the research. I mean, it's incredible to think about how many people might be walking around with a misdiagnosis. So thanks for coming on. I appreciate your time so much and you know, keep us posted. How about that? Isn't it difficult to think about being misdiagnosed and not having type 1 diabetes? I mean, as Kristin said, it really is a dream. It would be so nice to be able to tell my son Oh, sorry. You don't need to take insulin anymore. There were times during this interview where I kind of felt myself getting I got jealous. I got a little angry. I got resentful. I was very happy for them. I'm happy for any family that that, you know, turns the situation around. Although it doesn't sound like monogenic diabetes is a walk in the park either. I mean, let's be honest, but I had to let myself feel those feelings as we were talking. And if you felt them too, you're definitely not alone. Okay, next stuff on the world verse diabetes mom book tour. I'm heading to South Portland, Maine this weekend. Oh, it is gonna be so much colder. I'm so nervous being the southern transplant that I am. It's gonna be great. I'm talking to a group called the main pea pods, parents and providers of diabetic children. And I am thrilled to be going up there so excited to talk to this group and meet everybody. We're gonna have a great weekend. If you'd like me to come speak to you definitely reach out there's a page at diabetes connections. com called Community It's got our schedule where we're going, where we've been and what you need to do to request an appearance from me. I can come out and do the podcast, I can come out and do what I'm doing this weekend, which is the world's worst diabetes mom presentation, which is all about why you all should be more worst. Making mistakes is a really, really great idea. We have a lot of fun. Thank you, as always to my editor john q. kennis. From audio editing solutions. Thank you so much for listening. Our mini episode is going to come along and just a couple of days. Those are airing every Thursday. So I hope you can join us for that. I'm Stacey Simms, and I'll see you back here on Thursday. Unknown Speaker 1:00:43 Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged Transcribed by https://otter.ai
Sharing photographs of our kids on social media has become second nature. But what happens when we post photos of our children in distress? Stacey says stop. No more photos of your child in the hospital, when they're feeling sick or in distress. What about "keeping it real?" What about fundraising? Stacey argues that there are better ways to accomplish important goals around chronic conditions like diabetes than posting photos which, ultimately, exploit and embarrass our kids. Links referred to in the episode can be found in the transcription below. Check out Stacey's new book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Beta Transcription - please excuse grammar, spelling & punctuation Stacey Simms 0:28 Welcome to a minisode of diabetes connections, one of our shorter episodes where I share some thoughts on one topic of diabetes management. I'm your host Stacey Simms, and my son was diagnosed 13 years ago just before he turned two. Before I jump into this week's topic, which I really feel pretty strongly about. I want to give a thank you to Diabetes Forecast Magazine. We are in their January February issue as one of the top trending items for winter. It just cracked me up. When I opened, I get the magazine. So when I opened it, I laughed only because of the picture that they shared. I knew it was coming, they had asked to review it in the fall, but I didn't know that there would be a full picture. And I certainly didn't know it would be so funny. It's a woman, you know, with the book over her face, kind of like, Oh my god, I can't believe I'm reading this. And I can't believe what I'm reading. But the funniest thing is that a lot of people thought that woman was me. It's not, but I can kind of see it. And it's so funny to think that even with social media and everything else, because this is basically a radio show, you probably have a picture in your head of what I look like, I always do that for people on the radio, and then you meet them and you're like, that's not what I thought they would look like at all. So if I get a chance to meet you, you can tell me what you thought I looked like. But anyway, thank you so much diabetes forecast. I really appreciate that. And thank you to everybody who's sharing the book. After you listen to the show today. You might say I really am the worst. But I really do feel very strongly about this. So let's talk about it. This topic of sharing photographs, of children in the hospital, sick day photos. This is something that is very sensitive to a lot of people. But let's talk about why I truly think it is a bad idea to share what I'm going to call these photos of your child in distress. So for the purpose of this episode, let's say children in distress includes hospital photos, Sick day photos, a child upset about aspects of care, like getting a shot or an inset. Any photo that shows your child in a moment of distress or pain or hurt. We see these all the time on social media, a casual post of a tough night of lows, you know, and a sleeping child with a juice box next to them or something maybe a little stronger. You know, we're in the ER today couldn't keep fluids down and needed hydration. And then you see the child miserable in the hospital bed. We see these photos used by organizations and news outlets, Beyond Type 1, JDRF, Diabetes Daily. I am affiliated with a lot of these groups in terms of sharing content, right? You've seen - they'll post my stuff, I'll post their stuff. But I think it's important to call it when I see it. And every time I see it, I just cringe. Now, I know what you're saying already, right? This is important. We need to show the real side of diabetes, right? We need to show more than the smiles when a kid gives himself a shot for the first time or you know, gets over the fear. If you listen to my longer show that airs on Tuesday, you know that every week we do a Tell me something good. And I very happily show pictures of those people who are featured each week, and I have been accused of being more positive and you know, too rosy sometimes. And, you know, but we're talking about realism. Right? Everybody says we need to show the hospital days they happen. We need to show diabetes isn't fair. Well, of course we do. Yes. Yes. We need to show that that is important. And I am all for realism. I promise it is not sunshine and unicorns and rainbows over here. But you know what we don't need to do to show that we do not need to exploit children. And that's what's happening here. These are kids who cannot give consent to be featured. They can't give consent. They're too young. And they have just as much right to their privacy as we do. How would you feel if someone took a photo of you at your most vulnerable, and posted it on Facebook? Let's just back up and think about this. And I will get to when I think it can be done and how it can be done in a way that educates and informs and brings out emotion and still protects the child. But right now, let's say on these photos of distress, I did a little bit of research on this and there are a lot of articles about social media and photos. There's not a lot of research because this is Still so new. And when I see research, I mean real scientific published paper, that kind of research. But I did find some interesting articles. And I'll link all of these up in the show notes on the episode homepage. So here's an article from Dr. Kristy Goodwin, She's the author of “Raising Your Child in a Digital World.” She has a PhD in the impact of digital technology on children's learning. And she says that right now, sharing every part of our lives has been normalized by social media. But what happens really, when you dial it down is that it's a desire for a like, which is really a desire to feel connected, which she says is one of our biological drivers as a human, and it is needed to experience empathy. It does fulfill a purpose. Dr. Goodwin says and here's a quote, “For many parents when their kids are seriously sick, they have lost all control and their world is literally spinning out of control. When parents go on social media, they have a sense of control over their life again, They can post things and choose exactly what aspects of their child's sickness that they want to post.” Another article is from a pediatric hospitalist from St. Louis Children's Hospital, Dr. Shobha Bhaskar. She says, “We are all looking for support when our loved ones are not well, but when your child is running a fever or has a broken bone, please put down the camera step away from the screen. I'm sure if your child had a choice, they want to look their best to like you do. And your child would not appreciate a picture of them looking tired and rundown on the emergency room that we talk so much about patient privacy rules and rights. But what about the privacy rights of our little ones? Or do we think they just don't have any,” she says, I'm going to take this one step further. Because I do think while we're on this topic of digital privacy, it's a good time to sneak in something else. In my Facebook group. I have a local Facebook group in the Charlotte area that I started, I don't know, maybe five or six years ago and when I wrote the rules and regulations for the group, the admin announcements. Here's what I wrote. “Please think twice about any pictures you post of your children. A picture of a pump inset on a naked toddler’s backside may be completely innocent, but there are creeps out there. This is a closed group, but there is no guarantee of privacy on any social media outlet. Please, please crop pictures like this very closely. So we can't tell what body part of it is for your child protection.” And then I go on to say, “Same warning for posting pictures of your child in distress. This includes hospital pictures, pictures during illness, etc. You have our support and sympathy already, your child has his or her own right to privacy and may not appreciate being pictured online in such a manner. These pictures aren't banned. But take a moment to think about why you might want to post something like that.” If you listen to carefully you might be saying Stacey what? They're not banned in your group but you just got on your high horse and told us how terrible they were? Well, they're not banned in my group, at least, and they are banned at some other groups. But here's why I felt like banning them outright would take away the conversation and the thinking, if you know that you're allowed to post them if you really need to, perhaps you'll stop and think about whether you want to a little bit more. And whenever anybody posts it, I usually send them a very gentle, private message, reiterating what I already talked about here in this episode, we support you, we love you, we're so sorry, Your child is hurting. But why are you posting that picture? Can you please think about your child's privacy? Sometimes I wait, because if the child's really ill, there's no reason for them to hear from me when they're in the hospital. Don't worry, I'm not direct messaging, a parent whose child is in a critical situation in the hospital and saying, could you please check your photo on Facebook? I mean, really, I'm not that cold. But I do if they're not in an emergency situation. I do do it right away, but it rarely happens in my group anymore. What actually happens is we have conversations about why it's not a great idea, and what we're looking for, and what else we can do when someone's in the hospital. I mean, Benny had knee surgery a couple of months ago. And you bet I took pictures. We took funny pictures when they shaved his leg. I took a picture of his pump in the hospital gown. I took pictures of him and sent them to his grandmother, you know, going in thumbs up, that kind of stuff. I also took a picture of him coming out, because he was bundled up in so many blankets. He was so cold from the anesthesia coming out of it, he was fine. But that's not a picture he'd want me to post. But it was a picture he wanted to see later on. I knew he'd want to see how, you know, kind of funny he looked, but I knew he wouldn't want me to post it. So I'm not talking about not taking pictures, right. I mean, he had a terrible injury when he was about seven or eight years old, and we were in the hospital. And I took pictures. This was when we knew he was going to be okay when things had calmed down and he was stable. And I was sitting there with nothing to do feeling helpless. I took some pictures and sent them to my mom and my sister. And I showed them to Benny later on. I mean, they weren’t gruesome or anything. You know, if you're a longtime listener of the show, you may be thinking, I've never heard about this. And I'm not going to tell the whole story right now. You know, and I also it's a good time to point out that I don't share everything that's happened to Benny, I work hard to protect the privacy of my kids and my family in ways that make sense. So I have these pictures of him in the hospital at the time of that accident, but I didn't post them. I did mention earlier, there are ways to do this. So how do you do it? Well, when he was in the hospital for his knee surgery, I posted a picture of I don't even know some of the hospital equipment, right, the IV bag, I posted something and I said, here's where you know, we're going in, everything's good. I'll keep you posted. That kind of stuff. And I've posted pictures of him drinking a juice box, you know, he's low and you can kind of see in his face he's look you know what to look for. Rather than a more dramatic picture I've posted on I use it to my presentations. Several years ago, I took a picture of his bedside table, which was just it was one of those horrible nights it was covered with juice boxes and test strips and, you know, inset changes, it looked like a war zone. And that conveys the difficulty of type one diabetes in a very similar way. I posted this on my personal Facebook page, just to say, Hey, I'm going to be talking about this topic. And I was curious what other people in the community thought, and I got so much feedback. One of the pieces of feedback I got, which I thought was very, very interesting. And by the way, the vast majority of adults with type one that I heard from said, Please, please, please tell parents not to post pictures of their children. It really is something that I know people feel very strongly about. But I did hear from advocates who said, we need to get our cause across. We need to push we need to fundraise. I've two responses to them. One is we've been fundraising for JDRF and some other causes for 13 years. We have raised 10s of Thousands of dollars, we might be close to $100,000. If I sat down and added it all up, we have never posted a picture of Benny in distress. Has he been in distress? You bet. have I written about it? Have I talked about it? Sure. But we have found creative ways to show what goes on with diabetes. And I've never felt like I've exploited him to fundraise. And I know many, many other people who have raised a lot more money than me, who have never posted a picture of their child. I also heard from people about what the DKA campaign. Now, if you're not familiar, there is a campaign and it's a great campaign to diagnose Type One Diabetes sooner. There are so many cases of children and adults diagnosed while they're already in DKA, while their lives are in danger. The most dangerous time to be type one diabetic is before anybody knows that you are and the thinking was, you know, we need to show the faces of this. We need to show what can happen so that laws can change. And as I'm speaking about this, I'm also thinking about the insulin for all campaign and People who are dying because they're rationing insulin, but I'm going to give you the example of Reegan Oxendine and this is a little girl here in North Carolina. She was a toddler. She died. She had type one diabetes, it was misdiagnosed again and again. Finally she was hospitalized but it was too late. And her story has been told several times, I'll link it up in the show notes. Previously Healthy was a wonderful bit of journalism, photojournalism done by the folks at Beyond Type 1, but I bring up Reegan because it actually illustrates the point I'm trying to make that we can affect change and we can get the point across even if in this case, it is a terrible point, without photos that are exploitive. If you're familiar at all with Reegan’s story, what may come to mind is the most impactful picture in my opinion. And it's not her in the hospital, and it's not her looking ill and in distress. It's a devastating photo. It's just her mother's hands, holding Reegan's tiny little shoes. Her Shoes fit in her mother's hands. I'll post this picture. It's incredibly powerful. It's disturbing in its own way. But it is not exploitive at all. And it is a photo that really affected change. The law changed in North Carolina. Now is it as a strong laws everybody wanted and we've done episodes on this, I will link up more information on the episode homepage. As you can see exactly what happened. It's frankly, more of a recommendation for pediatricians but got the awareness out it got legislators talking about it. There are other cases of children and adults who have died. And they have been pictured online in many different ways. I am not going to judge those parents. You know, frankly, that takes us down a different road. I'm not sure how I feel about that. And it is certainly not for me to judge how those parents how those families react. However, that's not exactly what I'm talking about here. And I think we all know that I'm talking about the case of your child who's throwing up, run of the mill sick, you know, maybe has ketones that you're treating, who just looks awful. And you know, you grab the camera, because isn't that what we do? It's so interesting to me how much things have changed. I mean, when Benny was diagnosed in 2006, nobody had a camera because it wasn't on our phones. Right? It never occurred to us to take pictures of Benny in the hospital with Type One Diabetes, being diagnosed because who would bring a camera to something like that? And you know what, I wish I had those pictures. Only because there were so many funny and touching and wonderful and and sad moments that I remember, but I'd like to see I'd like to see little baby Benny ripping off all the stuff that was on him. We had such a hard time keeping anything on him. He's like little baby Hulk pulling off the sensors and things like that. I'd like to see him maybe getting his first shot. He was so brave. I'd like to see his face. Sister hugging him, you know all the things that are in my head, but that I don't have a photo of. And it's because times have changed so much that we don't think about photos. I have thousands of pictures on my phone, right? I don't even know what they're up anymore. We just take them in a screenshot and I save things and we don't even think about pictures anymore. But I'm telling you, these are pictures that we need to think about. I also think it's important to keep in mind and we all know this, but we don't really think about it when we're posting the internet is forever. And if you've posted a picture of your child in distress, child might be five years old, that photo will live forever. Your child will probably find that photo at some point in their life. So before you post another photo, just stop and think for one moment. I don't care if it's a closed Facebook group. I don't care if it's a private Facebook group. That's a bunch of bull. Nothing is private. In social media. The minute you hit post, somebody else can screenshot Somebody else can save it, somebody else can forward it, you have no idea where it's going, right? So just take a moment to think, why am I doing this? What do I need right now? If it's support and sympathy, I promise it's out there. If it's showing the real side of diabetes, I promise there's a way to show that without exploiting your child. And if the next time you post you're thinking, well, but think carefully, what comes after that. But what is stopping you? Is there a little bit of doubt in the back of your mind? If there is, you know, which other 10 minutes Think it over? You can't take it back once it's out there. I promise. There was love and support and sympathy and understanding and empathy and fundraising and awareness without posting these kinds of pictures. Agree? Disagree? I know a lot of people feel very strongly about this. And I know when this gets posted, most people aren't going to listen to all the way to the end, they will see the headline and they will tell me I'm a terrible person. So keep in mind, I am the world's worst diabetes mom. You know, what do you think I really would love to hear from you. All kidding aside, we will put this in the Facebook group. I'll be talking about it on social media when the episode airs. And of course, I'm Stacey at diabetes connections.com. You can find that a lot more about the show about the book. And about this episode on the website. Of course there is a transcription. all the episodes beginning this year, have that transcription on the episode home page. All right, back to our regular full length episodes every Tuesday, and then these minisodes on Thursday. I'm Stacey Simms. I will see you back here next week. And until then, be kind to yourself. Announcer: Diabetes Connections is a production of Stacey Sims media. All rights reserved. All wrongs avenged. Transcribed by https://otter.ai
Choosing your diabetes technology can be complicated. Wouldn’t it be nice if there was sort of a Consumer Reports for pumps and CGMs? We found out about Diabetes Wise from people who know it’s about more than the hardware. Check out Stacey's new book: The World's Worst Diabetes Mom! Stacey talks with Dr. Korey Hood who lives with type 1 and is with Stanford University as well as Laurel Koester, with the Helmsley Charitable Trust. Together, these two groups created Diabetes Wise. Stacey, Korey & Laurel talk about how it works and why it’s needed. Stacey spoke to Korey on a previous episode about diabetes gear and mental health. Find that episode homepage here. Join the Diabetes Connections Facebook Group! In Tell Me Something Good – the greatest game of Marco Polo every played.. and Stacey finds her diabetes doppleganger. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode transcription (it's a rough transcript, please excuse grammar, spelling & punctuation) Stacey Simms 0:00 Diabetes Connections is brought to you by one drop treated for people with diabetes by people who have diabetes, and by dexcom, take control of your diabetes and live life to the fullest with dexcom. Announcer 0:17 This is Diabetes Connections with Stacey Sims. Stacey Simms 0:23 This week, choosing your diabetes technology can be complicated. Wouldn't it be nice if there was sort of a Consumer Reports for pump and CGMs? Enter DiabetesWise from people who know it's about more than the hardware, Korey Hood 0:38 there's the physical side to wearing it, then there's this mental burden that is related to having to pay attention to it and to think about what's going on. And then there's also the social side that is the distractions and the potential workaround. So you have to come up with in these various settings, whether it's school work, family relationships, Stacey Simms 0:56 that's Korey Hood, who lives with type one. He's part of the Team at Stanford who along with the healthy trust created DiabetesWise, we'll talk about what it is how it works and why it is needed. In Tell me something good, the greatest game of Marco Polo ever played, and I find my diabetes doppelganger. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of Diabetes Connections. I'm your host Stacey Simms. So glad to have you along. And I'm really excited about what we're talking about today. Because I don't know about you. But when we went to pick out our pump for Benny, and I'll tell the story during the interview, it was just overwhelming. And while our educator was fantastic, I really wish we'd had just something to kind of compare and contrast the different types of tech like now exists with DiabetesWise. So we'll get to that and the interview in just a couple of minutes. But you know, I get so many great things emails and messages and I'm so terrible at reading reviews and sharing this stuff with you. You know, there's all sorts of techniques and strategies for getting people to share more reviews and email you more in blah blah blah. I'm just terrible at that. But I have to share this one with you. Because it was like getting a message, like a message in a bottle from a time machine. So here's what happened. Casey messaged me. “Hi, Stacey. I'm sure you get messages like this one all day every day, but I couldn't resist reaching out. I wanted to reach out and tell you how you impacted my world for the better. My son was diagnosed with type one on the 21st of November of 2019. We are soaking in all the new information, trying to get sleep keep up with our jobs, all while trying to keep our regular life intact. I came across your podcast and more specifically, the episode titled all about babies and toddlers with Type One Diabetes. I immediately thought finally a podcast discussing everything we have been dealing with lately. Plus, it's run by a type one mom – score! and Anyway, long story short, she writes, I listened to it and learned a lot.” “But that's not why I'm messaging you. I am messaging you because my son's name is Benny. And he was diagnosed just six weeks before his second birthday. His sister is four. If that wasn't enough similarities for you, we are also from Charlotte. They live in Charleston. Now, I know this might not mean that much to you. But for me listening to your podcast, shifted my world, listening to your story somehow made me feel not so alone. All I can say is thank you. Thank you for telling your story and putting your life out there for the world to see.” It took me a minute, I had to reread it to be honest with you. Because if you're not familiar with our story, my son, Benny, was diagnosed right before he turned two his older sister had just turned five. So it's a very similar story. I mean, they have used to live in Charlotte. It was just this feeling of kinship. Yep, I'm not sure I we're still talking. I'm kind of working out the emotions, because it is kind of like looking at a time machine. And I'm so grateful for the people that were there for us when Benny was diagnosed, and the blogs I read and the people that I talked to. So to be that for somebody else now is really remarkable. So Casey, thank you so much for reaching out. Definitely. Let's keep in touch, our Benny's. Maybe we'll meet at some point, how much fun would that be? I mean, we go to Charleston every summer. That's where we go to the beach. So I'm really hoping to follow up on this because man, those connections are really what it's all about. For me, it sounds really hokey, but if you've listened to the show for any length of time or met me, I think you'll say that that's the truth. Alright, so DiabetesWise coming up in just a moment. But first, Diabetes Connections is brought to you by One Drop and it is so nice to find a diabetes product that not only does what you need, but also fits in perfectly with your life. One Drop is that it's the slickest looking at most modern meter My family has ever used. It's not just about the modern meter setup. You can also send your readings to the mobile app automatically and review your data anytime, instantly share blood glucose reports with your healthcare team. It also works with your Dexcom Fitbit or your Apple Watch. Not to mention they're awesome test strips subscription plans, pick as many test strips as you need and they'll deliver them to your door. One Drop diabetes care delivered, learn more, go to diabetes, connections dot com and click on the One Drop logo. My guests this week are Korey hood PhD professor of pediatrics and of Psychiatry and Behavioral Sciences at the Stanford School of Medicine. We did a great episode a while back about the mental burden of wearing devices. With Korey It was really eye opening for me and I will link that up on the episode homepage. And we're also talking to Laura Kester T1D program officer at the Helmsley trust. I should note, we taped this interview a few weeks ago. So when they Talk about things added to the website. Some are already there. And starting this year, all of our episodes are transcribed on the homepage. Have you checked that out, you can go right to the episode homepage on diabetes, connections. com, scroll down just a little bit. And the whole episode transcript is there so you can read the episode, if you prefer. love to know if you're doing that. So let me know what you think. Here is my interview with Korey and Laurel. And I start out by asking Korey, what is DiabetesWise? Korey Hood 6:30 Well, thanks again, Stacey for having us on. And we're always happy to talk about diabetes life. So this is a website that we collaboratively worked on. So I'm a psychologist and clinical researcher and one of the things that we've noticed in practice and and also in research is that people are not always aware of the different device options they have and I'm not always aware of the different technologies available to them for managing Diabetes. And so we wanted to create a resource that was unattached to device manufacturers to companies that hopefully is unbiased and and can be free and people can go there and compare different devices and understand a little bit about what other people who are using those devices have, you know, thoughts on it. And so, we've been doing some collaborative work with the Helmsley Charitable Trust for four or five years on understanding some of these device and psychological factors related to device use. And so we have support from them and have been working on this for much of the past year and a half. Stacey Simms 7:45 Laurel, let me ask you, I remember years ago now, looking for the insulin pump for my son who was two at the time and it just seemed overwhelming what was out there. I had no idea how to make a decision. What would I find at DiabetesWise how would this have helped me? Laurel Koester 8:03 Sure. So one thing I think is really critical about DiabetesWise and makes what makes it so different from what's out there is the use of personal stories from real people living with diabetes. So, you know, our ultimate goal at the trust is to help people be aware of all their technology options that are out there, and kind of get the inside story and real talk from other living with type one about their experiences, trying, maybe stopping, maybe trying, again, different types of technology. And we found through some market research that we've done is people really you know, they're kind of two groups of people. There's a group of people that you really trust their doctor above everyone else. Then there's other folks that really look to online information sources. Know, like a DiabetesWise, like beyond type one. But there was nothing really focused specifically on technology. And what is really great about DiabetesWise is that it has a short questionnaire at the beginning that basically serves as an algorithm to help see where people are when they come into the site, and then provide suggestions on what device is right for them through the use of the personal story. Stacey Simms 9:40 And we're like, I definitely want to talk more about the homestay trust and why it got involved here. I mean, so much for people with diabetes, but Korey, okay, so you've and I've talked before about the mental load people with diabetes carry when we carry when one of these devices is attached. Right and how we kind of don't think about that. I mean, it never occurred. occurred to me when he was two and a half we put the Animas 2020 on him, it never occurred to me to think well, What's this doing mentally to my child? You know, as a teen, it's kind of easier to see. But can you talk about that a little bit about how it's beyond? I mean, they all work really well. There's not a bad insulin pump out there. Korey Hood 10:19 Yeah, absolutely. I think that, and what you just mentioned, I think is a great a great example of why we have to think about this at different stages. And, you know, for somebody who's, like your son diagnosed the two, and then the family is adjusting and I mean, the burden around the mental burden around diabetes management at that point, even devices are not as really on the parent and so the it's really just a physical side that's on the child, but as they develop and then you know, as you know, many of the people with diabetes using these devices are adults that there's a I think there's a couple different parts of Did that sit in the psychological impact and one of them that we noticed a lot, especially in the teen years, there is the social side. And so what kind of attention is drawn to the person based on wearing these devices and having alerts, alarms, having, you know, disruptions and various things that they're doing. And so I think that the there's the physical side to wearing it, then there's this mental burden that is, is related to having to pay attention to it and to think about what's going on. And then there's also the social side that is, you know, the distractions and the potential workaround, so you have to come up with in in these various settings, whether it's school work, family relationships. And so I think that there's a, there's a lot to think about, that we often I think, especially in the clinical care side, we forget that as soon as people leave the clinic, this is what they deal with. Stacey Simms 11:56 Just this quiz, well this take me through which pumps beeps Am I going to actually listen to which CGM sensor alarm? Well I respond to I mean, I'm kind of joking. But you know, alarm fatigue and things like that. Are things that really happen. Are those kinds of things taken into account when you're trying to figure out what to choose? Korey Hood 12:17 Oh, absolutely. I think that you know, one of the things that we wanted to do, and I think that this is best illustrated with our CGM comparison tool, which we did a lot of collaborative work with Laurel and her team to make sure that we got it right. And one of the things that we have there, you know, people can compare the sensors compare the different devices on whether or not it provides, you know, you have to do calibrations, you have to do finger six, but you also know the kind of alerts whether they're customizable or not. Because, I mean, as you know, as you just stated in all the user testing that we did, that is a big concern for People are these alarms and alerts and and what are the ways that we can at least notify people of them and what it's going to be like that also, in our, in our stories, people talk about that. And they talk about it being disruptive at different times and some of the little tricks that they found to actually help those situations. And so we try to, you know, it's just, you know, essentially just real talk about what it's like to use these different devices. Stacey Simms 13:27 Also, Korey mentioned your team and some of the research that you did you had done. Can you talk about that a little bit? Laurel Koester 13:33 Yes, absolutely. So I think just want to take a step back is, you know, we know the technology works, but how do we get more people to be aware of them, and not only aware, but to then use them and found them. And so we know that there are a lot of different factors that kind of play into the space around technology adoption, you know, there's a lot of barriers, but also facilitators out there. And so we really wanted to hone in on, you know, we know their system level barriers, like insurance coverage. So our idea was, let's go directly to people living with diabetes and, you know, just understand their awareness around different technologies. And some of the market research we did was specific to CGM, but we thought, hey, if there are the system level barriers, and we also know that, you know, maybe not all providers actually know about these diabetes technology, you know, especially if you're talking about primary care providers. And, you know, given the number of people living with Type One Diabetes, but also type two in the number of endocrinologist in the US there’s just not enough to meet demand. There are a lot of people that are seeing in the primary care sphere. primary care providers just, you know, don't have the bandwidth. So some of the market research we did was to, you know, we wanted to learn about information sources that people trusted. And the the two main points that I alluded to earlier was, there was a group of people that really trust a variety of information sources, ranging from their doctor to diabetes bloggers, to online community groups, and then there's another group that overwhelmingly trust their doctor. So for us, this told us that we need different approaches to raising awareness about diabetes technologies, one being through patient facing resources, like diabetes lives, but I think part of our larger vision is to also we understand now from this research that we also need to involve healthcare provider. Ultimately, the truck vision is to increase the use of diabetes technologies for people living with diabetes and others who are on intensive insulin therapy because it really is a an effective tool to help improve management. Stacey Simms 16:22 Cory I'm curious as somebody who lives with type one, and I assume I shouldn't assume, but I was gonna say I assume who wears devices? Do you use a CGM or a pump? Korey Hood 16:33 I do. Okay, yeah. So you probably too many of them. Stacey Simms 16:36 Wait a minute. So tell us how many are you wearing at the moment? Korey Hood 16:40 Oh, no, I'm just, I'm just exaggerating. I've tried I think everything that's on there. Stacey Simms 16:45 That leads to my question, which is, do you mind sharing separate from DiabetesWise? How did you choose? And you can mention brand names if you want to, but I'm curious how you go about before there was a resources like resource like this. How you You went about choosing what devices you would at least try and then wound up with? Korey Hood 17:05 Yeah, I think it's a great question. And I think it's something that there's there's probably a few themes about how everybody arrives at this place about devices. And I'll tell you mine, but I think that it's there are not that many different routes to people getting on devices. And so for me, I mean, I it was fairly straightforward. This is when you know, back in, this was 10 years plus now when the first CGM came out on the market, and my insurance would pay for it, that was what made me kind of intrigued about it. You know, I heard a I was I've been working in the diabetes space, so I knew that it was coming and and so I wanted to try it because I could, but if I had to pay for that out of pocket, I probably wouldn't have paid for it. I probably wouldn't have done it at that time. So it was it was accessible to me, which was, you know, an important part. And then also, you know, I was I liked the idea of something that gave me a continuous, you know, feed of what was going on with my glucose because I knew from finger sticks and we still know most people are still using finger sticks that there's you miss a lot of the peaks and valleys with those kind of intermittent glucose readings and so for me that was appealing because then I could maybe catch a low I could. And so I just for the management purpose, I think that I was really drawn to it from the pump side. You know, I've been, you know, you've mentioned the Animas earlier and, and I that was my first pump and I use it for a long time and I still have it in my you know, diabetes Museum of devices at home. But I I, for that it was it was just because of provider said you should try this. I didn't know really a lot about it. You know, I was 1819 years ago and I thought you know, I'll try this and and so I think what I can tell you though now I currently use the Omnipod with the Dexcom g six within the loop system. And so my movement to the occupied was was just because it was working with that system and I was I wanted to give it a try to have to blitz and, and for me and my lifestyle and my you know, when I do physical activity, it's just so much better and so so they do have too long of an answer to your question, but I think it's evolved over time about why I've used devices and I've been drawn to ones more recently that are smaller that don't have to be in and that that make it a little bit easier to do the things I like to do you know, outside of work and family. Stacey Simms 19:59 Our experience was, was not exactly similar and choosing an insulin pump in that we were given a lot of choices. And at the time, back in 2006, there were actually more pumps on the market, which is kind of sad to think about. And we chose the Animas 2020. Because I felt like of all of the devices that I was shown, it kind of seemed the easiest. I said to my educator, I really said, I need devices, including pump insets. And everything else. I need the the Venn diagram of idiot proof, and does really good does what it's supposed to do with diabetes, because I really was so overwhelmed. And that's what we wound up with. And as Benny got older, and you know, every four years you're changing and making decisions. We stayed with a two pump. We now use the tandem. One of the reasons we stayed with it is because my son is very responsible, great kid does well loses everything. And we felt the Omnipod PDM would be gone in about 30 seconds, but I'm curious. So when you go through the quiz Your pump and sensor and that kind of thing. What kind of questions are you asking? I mean, I should have taken the quiz before I talked to you, sorry. But I'm wondering like, do you want everything attached to your body? So you don't lose it? If that's one of your questions, or if that's, and I'm laughing, but you know, you understand I'm saying that's one of the No, absolutely, yeah, form factor or your lifestyle factor? Korey Hood 21:22 Absolutely. And I think you raised a really good point about that. The systems that that work well, and are easy to use, have been designed with the person in mind. They've been designed to be, you know, to have the form factor, like you mentioned, but the user experience is something that is positive. And I don't think that all of them are designed and created equally, in that in that sphere. And so I think that, this really great examples of that, and I would say that the tandem is one of those that has You know, and using use an interface that especially for anybody who's been diagnosed in the last few years, you know, that's that's what they're used to in terms of touchscreen. And so with that said, it's a good question about the quiz and one of the things that we did just quickly give you a little bit of history of it. So, in our we did a lot of work serving over 1500 adults with type one 700 adolescents, 700 parents of kids with with type one, to really understand what are the main questions that we need to ask people so that we can put them on the right path toward, you know, an experience where they become more aware about devices and then also maybe matches better to what their lifestyle is. And so we were able to take hundreds of questions and and derive a quiz that have five questions in it. And a part of those questions is about the level of distress and burden that they perceive about that. BTS because we found that that's a really critical factor in making sure that people get the right kind of information about using devices. But we also ask them what their priorities are, what are their concerns? And what are their main ones. And although we don't specifically phrase it, the way that you mentioned, it is that we, we get it, we get at a number of different priorities that people have. And then that starts them on this path. And then because of the way that it's framed, and as Laurel said, around the algorithm, that it will then take people to, based on their responses that will take them to individual stories of others who have those same concerns or same priorities. But then when it one of the parts that's not live on the website, yet, is a device readiness tour device Finder. And so in there, you can drill down a lot more deeply about what your priorities are, and so For example, if someone really wants it to be discreet, if someone wants it really ease of use ease of use as one of the ones that we have in there as a priority, if someone really wants to avoid fingerstick there's all of this that you can tailor the advice or the recommendations that you're going to get based on what your priorities are. So that's great for people who have some idea of what it is, but it's also great for people who are just trying to get a sense of I'm not even sure what my priority is. I'm not even sure what I want out of this so you can learn about it as well in the process. Stacey Simms 24:34 Alright, so I'm looking at the website, and I know that as you said, more is coming. But it does say there's stuff about pump and smart pump. There were only three pumps in the US as far as I know right now. Which ones are the smart pumps? to dump I'm sorry. Korey Hood 24:50 Right? Exactly. I there was something funny there that I couldn't quite come up with but I do agree with you that it what we found and said this is Why is it so important to ask people and involve them in in user testing and development? One of the things we found were that people really wanted to distinguish between something you just put on your body that administers insulin that doesn't make doesn't have any kind of alteration or it doesn't change what it's doing based on anything else. And so, you program a pump and they're, they're, you know, they're sophisticated for, say, 1995. They haven't evolved a lot. But they, they still do a great job and are reliable and precise. With what's what we wanted to distinguish is this idea that a pumpkin do something like low low glucose suspend or can be part of a larger closed loop system. And so the smart pump idea really came from what we heard from people and although it's not a, you know, an FDA category of devices, we really heard from people that they wanted to that distinguish between kind of the traditional way that you would pump versus something that has the capability to be within a closed system or to have low glucose suspend. So that was really the distinction there. Stacey Simms 26:11 Got it. So in other words, if you use an Omnipod on its own, that's a pump. But if you use an Omnipod as part of the non FDA approved loop with a Riley link, now you have a smart pump. Unknown Speaker 26:26 Exactly. Okay. Unknown Speaker 26:27 Let me ask you. We talked Stacey Simms 26:29 about this at the very beginning that one of the things that makes DiabetesWise unique and very, very helpful is that it is not put out by a company with a stake in what device people Unknown Speaker 26:41 choose. The Stacey Simms 26:44 Helmsley charitable trust I think many people are familiar with is so much of what it has done for diabetes research and funding and grants. And we've talked to some folks from the homestay family on the show in the past. What was the purpose here? You know why did Helmsley want to get into involved, it seems really obvious, because you're helping people. But I just wanted to ask you about the involvement here. Laurel Koester 27:08 Yeah, absolutely. Well, I think they see the point that you raised about the the fact that we are an independent entity really speaks to kind of the trust factor not only in you know, what Helmsley because we don't have a financial stake in this. But we're also partnering with some of the leading diabetes researchers in the field at Stanford University. So we really want to ensure that that we're supporting information that is unbranded and unbiased and that people can trust. And I think, again, to underscore that this website is really informed by People living with diabetes is their voices. And, you know, for example, one of the tools that Korey mentioned of this device readiness tool, some of the research that's going into that is, you know, from a sample of people with diabetes, so when people see, you know, different priorities and, you know, writing, as you know, kind of just a sneak peek into some of the features that are going to be coming out, those are actually based on input from people living with diabetes, who are using diabetes was for the first time so it's a really unfiltered real deal. Stacey Simms 28:44 Cory, what's your hope for this? Do you do you hope that like a CDE would say, hey, let's sit down together go through the quiz on DiabetesWise, or is it a question of people just kind of seeking a little bit more, or even people. What I find fantastic about this is that you have empty I'm on here as well, you're not assuming everybody wants an insulin pump, some curious what your hope is going forward? Korey Hood 29:07 It's a great question. And I think that the ultimately what we want to do is we want to be able to match the device with the person and their lifestyle and their interests and their priorities. And, and I think one way to do that is that we traditionally don't do a lot of in clinical care is to spend more time objectively figuring out what's what's going to be the best fit, because clinics are busy, providers are busy, it's hard to get that dialed down really closely. And so my goal really is to get the right one for the person and so it's not a one size fits all approach. And if people are using multiple daily injections, and using a meter, you know, I could argue most of the time that you know, add a CGM add dilib re add something that will give you a little bit more glucose information to dial it in. So there's Maybe a little bit of room, but if you don't want to move, and you are really happy with it, then maybe there's some other some areas of distress related to diabetes that we've learned about in this process that we can help you with. And so, you know, I, it's, it's really intended to be a resource that can match and fit with anybody's interested in what they want to do around devices. But also, you know, at a minimum, you know, it educates the person about it, it also can be a resource that like you said, CDs could use one of the things that we found really helpful is we went to a D over the summer and in August and Houston and one of the things that we learned and, and talk a lot about with CDs was, you know, how this could be a helpful tool for them. And so that's another thing that's in process is making sure that we have something that is that can be used by them in a in a helpful way so that they can also get people on the right devices. I mean, I think that everybody If you get the right device on somebody, and they use it effectively, everybody, when there's less time and involved in on the clinical side, they're better outcomes. The person's happier. I think that there's just so many reasons that we want to do this. And then the other vision for this is that we keep it completely free, that we keep it disconnected from are not connected, not tethered to any kind of device manufacturers, we need them, they have to be part of this. And they're doing great work. But we don't want to be as Laurel said, we're not you know, we don't want to be biased or branded in any way we want it to be free and an objective tool for people to use. Stacey Simms 31:43 I'm curious, what do you mean by you need them for this? Korey Hood 31:48 Well, I mean, I think that we don't necessarily, we don't necessarily need them for DiabetesWise, although, I mean, you could argue that, you know, we wouldn't have DiabetesWise if we didn't have devices, but that's Maybe getting a little Stacey Simms 32:02 device. Korey Hood 32:04 Right, exactly. But But I think what I think I'm just noting that we need for I think the person with diabetes, to have the best chance of the best outcomes we need device companies who are pushing the edge and who, who are, you know, are the competition is a healthy competition. And so I think it's good that they all exist and that they do the work. We just don't want them. We don't want people with diabetes to feel like they have to go to a certain device. And so that's why we we created this so that they could have a more you know, unbiased view of what's available. Stacey Simms 32:47 I just didn't want to make sure I just wanted to make sure I didn't misunderstand there that you didn't need them. In other words to give permission to recommend or that they had to somehow sign off on DiabetesWise. Korey Hood 32:58 Right, right. Okay. There we go. We, you know, if if we want to, we want to work with them on this and make sure that we have accurate information. But ultimately, this is driven by us and our team and our collaborations. And so if there's something on there, that isn't that they don't like then or a story that someone bashes their device, and it's still going to be on the website. But it's also that we we appreciate that they've done a lot of work to bring us to this place where we can actually have these discussions and we can actually have options. Stacey Simms 33:35 Yeah, it's interesting. I mean, I mentioned when Benny was diagnosed, there were more pumps on the market. And while there are fewer now at least the technology is improving. Before I let you go, Cory, could you speak just for a moment about where it's been for you? And you know, where you are looking for to go in the next couple of years? Korey Hood 33:54 Yeah, you know, I think that I mean, I've been it's a little bit of background I've been using For over, I think two and a half years now and, and I've found a great deal of benefit from it mainly on glucose control, but also in on the mental side and having longer chunks of time throughout the day where I don't think about diabetes, which is really nice. So I, for me, I've been really happy with the progression, it's not perfect, and there are still pieces, you know, multiple pieces you have to wear, we still have to, you know, stab ourselves with sharp pieces of metal. So there are a lot of these things that aren't going to go away and I don't think are going to go away anytime soon. But I do think that the ability to put something on and to not pay much attention to it for a few days is we're close to that. And I think that that's what is really appealing. For me and I think for others that we talked to is that if we do Just continue to decrease the amount of time that people have to think about it, and they feel safe, and feel like it's reliable. And that's really what we're aiming for. And I really do think that that's where we're moving in the next few years. Stacey Simms 35:12 Laura, let me give you kind of the last word here, you know, what are your hopes for DiabetesWise and how it helps people Laurel Koester 35:19 just positing said, That's quite a big question. You know, I hope. I think from the homepage standpoint, we want to make the information about diabetes devices and technology is available to everyone living with diabetes, you know, no matter where they live in the US, you know, um, you know, a lot of times just information isn't accessible for people and we want to make sure it's a trusted source of information. And you know, if someone lives in rural America, for example, and they don't have access to support CT groups or an endocrinologist that they can still connect with people like them to learn about the different technologies and devices and experiences of people that are navigating there. They're the same disease. Stacey Simms 36:18 I'm thrilled that this is available. I really wish it was around when we were choosing our devices, because it was a little bit like throwing darts at a dartboard. Luckily it worked out. Okay. But Korey and Laurel, thank you so much for joining me. I really appreciate your time. Unknown Speaker 36:38 You're listening to Diabetes Connections with Stacey Sims. Stacey Simms 36:44 More info about DiabetesWise on the episode homepage and of course, the link is there to go ahead and take the quiz and tool around on their site and see what you think. Up next. What Marco Polo has to do with type one that's in our Tell me something good, but first Diabetes Connections is brought to you by Dexcom. It's hard to think of something that's changed our diabetes management as much as the Dexcom, share and follow apps. The amazing thing to me is how it's helped us talk less about diabetes. That is the wonderful thing about share and follow. As a caregiver, a parent a spouse, you can help the person with diabetes manage in the way that works for your individual situation. Internet connectivity is required to access Dexcom follow separate follow up is required. You can learn more just go to diabetes, connections dot com and click on the Dexcom logo. It is time for Tell me something good. And this one made me smile when I read it. Oh my goodness. So Rachel shared a story: “We were at Target today and my son's low alert on Dexcom went off and we heard in the distance, ‘T1 I hear you – Marco’ my boy lit up. ‘Yes, you do T1 – Polo!’ and another kid pops up out of breath. And the two of them just chat for a few minutes about Legos or with with everything in common. I melted.” So how about that? I mean, we've heard some Dexcom alerts or seen somebody checking their blood sugar. And of course, I want to run over. And how are you and what are you doing here? But I don't I try to contain myself. But every once in a while, I'll say something. But I can honestly say it has never occurred to me to yell Marco, and hope to hear back a Polo. Dexcom alert. So kudos to these kids. And Rachel, thanks for letting us know about it. any follow up? You have we would love to find out. I mean, I can see her son doing this again, and maybe they became friends. I don't know. But I thought it was a really cute story. And if you try it, and it works, let me know. I think the closest we ever came was interestingly enough at a hotel pool speaking of Marco Polo, this years ago, we took a road trip to Chicago. That's a story in and of itself. We took an RV from Charlotte to Chicago. And we did six states and five days to go see Syracuse play in the NCAA Tournament. Anyway, long story short, we did not bring the RV actually into Chicago, it would have been very expensive to do that. So rather than you know, pay a lot and find a place to park it, we parked our RV at my husband's friend's funeral home in Skokie, outside of the city, but that's not what I wanted to tell you about. Um, so we're at the hotel pool. And we look over and there's a little girl with the Dexcom and Omnipod on the backs of her arms. And of course, Benny at that age, was willing to go say hi, be social. So he did and we struck up a whole conversation and they were so nice. It was a lot of fun. Sometimes those diabetes spottings in the wild, really give you more than you'd expect. There. Just something so rewarding and so affirming about knowing you're not the only one, I think as much for parents as for the kids, and someday I'll tell you more about our crazy road trips, we're on a quest as a family to try to hit all 50 states and the kids were so excited about this when they were younger, I think we're on 27 or 28, I'd have to check. And I think I'm the only one who's still excited about trying to do it has to be all four of us together, you have to have feet on the ground, airports do not count. And so feet on the ground, you can't drive through either you have to actually get out and stop and take a picture. You need picture evidence. You don't have to have all four faces in the photo because sometimes people are grumpy and don't want to take pictures. But we need all four of us. So we have one or two pictures where everybody's holding up a cup of coffee or hot chocolate. That one was like at 6am in Ohio on that road trip. I have another one in Las Vegas where we're all holding up gelato, and you can't see our faces. So I'm hoping this summer not to get completely off track to go to New England with the kids because we've got a lot estates a hit up there. Anyway, if you have a Tell me something good story can be a road trip or anything of the kind, whatever works for you. You can send it to me Stacy at Diabetes Connections. com or post it in the Facebook group Diabetes Connections to the group or send it to me on social media, it'll find its way to me, just tell me something good. Keeping that busy schedule, which I'm actually having so much fun with. I'm going to Raleigh, North Carolina for the JDRF type one nation summit this weekend, doing not only the world's worst diabetes mom presentation, but also my favorite one about making connections in real life Diabetes Connections. I have been doing this talk since before the podcast came about. That's where the podcast got its name. And I'm also talking about social media. So I'm really excited to meet some new people right here in my state. And then in two weeks, I'll be in Maine, for an event in South Portland, Maine dizzy calendar as I head out on the world's worst diabetes. Mom book tour. And if you've got an event later in the year, things are still pretty busy. Definitely through April. But after that, it slows down to about one event a month right now. So if you've got a jdrf summit, if you've got another event, especially in the fall, please let me know. So we can plan for it. I would love to come and meet you. I can do those presentations. We can do a live podcast, we can just hang out and talk. It's always fun to meet new people. And I do love making those in real life connections. All right, coming up later this week, another mini episode, where I'm taking on what I think is a pretty controversial topic. In fact, when I posted about this on my personal page recently, I was shocked at the response I got. I'm going to be talking about why I think it really is a bad idea to post pictures of your child in the hospital. Yeah, I know a lot of people do this, but it's just not good. So I'll be talking about that coming up on Thursday. In the meantime, thank you as always to my editor john ducatis. audio editing solutions. Thank you so much for listening. I'm Stacey Simms and I'll see you back here on Thursday. Unknown Speaker 43:12 Diabetes Connections is a production of Stacey Sims media. All rights reserved. All wrongs avenged Transcribed by https://otter.ai
Using a shot of long-acting insulin along with an insulin pump sounds like a weird idea. But Stacey found when her son's insulin needs went way up around age 11, that it worked incredibly well for them. She explains the method of untethered, which is also sometimes called POLI (Pumping On Long-Acting Insulin), what led them to believe it would work, and why you don't always need to use a ton of insulin to benefit from it. More info on untethered here More info on Tresiba here ------ Check out Stacey's new book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode transcription (rough transcript, please excuse any grammar, spelling, punctuation errors) Stacey Simms 0:00 This episode of Diabetes Connections is brought to you by the World's Worst Diabetes Mom, Real life stories of parenting a child with Type One Diabetes available as a paperback eBook and audio book. Learn more at diabetes connections.com Announcer 0:21 this is diabetes connections with Stacey Simms. Stacey Simms 0:27 Welcome to an episode of diabetes connections. I'm your host, Stacey Simms, and this is one of the new episodes I've added for this year. Where in addition to the weekly interview shows that are longer. I have started doing these shorter mini episodes where it's just me talking about one topic, hope you're enjoying them. It's been really fun to get the reactions and hear what people want to hear more about. So if you're brand new, just real quick. My son was diagnosed right before he turned two back in 2006 he is now 15 and a freshman in high school taller than me, and recently got his permit to drive like North Carolina. And our young, young permitted drivers are graduated licensing. But that's not what we're talking about today. Just to give you context on how old he is, and you know where we've been, he was diagnosed 13 years ago. couple of episodes back. I mentioned Tresiba. I was actually talking about a Tell me something good segment on the show, which we do every week. Um, a family was sharing their last night of Lantus because their daughter was going out of pump, and Lantus really burns. So I was talking about Tresiba, which is another newer, long acting insulin as an alternative. And I had a couple of people asked me about that, one through email and a couple online. Don't you use Tresiba, they said, as an untethered method for Benny, and I thought this would be a really good chance to answer that question and talk a little bit more about what's called untethered or POLI. They both kind of mean the same thing. They're a little bit different, but we'll go through them. I will start out by saying, once again, I am not a medical professional. All of the information I'm giving you here is through my personal experience as a parent of a child with Type One Diabetes. I am not a healthcare provider, please call your endo or your care team to follow up and ask them any questions especially about a topic like this one. But this is the kind of topic I love sharing about because the only reason we tried untethered, which changed my son's life and has just been amazing. Over the last. It's been more than a year now. We started in September of 2018. So the only reason we started it is because another diabetes mom reached out and said, Hey, have you thought about trying this? So Cheryl, thank you very much. I'm just trying to pass along the information here. So what are we talking about? Well untethered means making use of an insulin pump. pump and taking long acting insulin at the same time, a lot of people use untethered to mean that they only use the pump for boluses. So in other words, all of the basal would be coming from the long acting shot. That's why another term has cropped up which is POLI pumping while on long acting insulin. And that is supposed to mean where you do something a little bit more flexible 50% of Basal from the pump 50% from the long acting, and all of the boluses from the insulin pump, and that's actually what we do, but I still call it untethered. So for the purposes of this podcast untethered is going to refer to any use of an insulin pump with long acting insulin, whether you're doing 20%, long acting 100%, long acting Basal, that sort of thing, just for conversational purposes. I think untethered is an easier way to go. I have been criticized online For calling it untethered, because I guess technically it's not correct, but you know me that has never stopped me before. Alright, so why would you use it? Right? What this is my question, why would you go through all of the bother that is an insulin pump, right? inserting the inset every three days wearing the pump itself, you know if you've got little kids wearing it in the pouch, or if you've got the Omnipod schlepping the PDM around, you know, why would you do all that and then add a shot of long acting? Well, in my case, I couldn't imagine it until Benny became a teenager because what happened was his insulin needs went up so quickly and went up to numbers I never thought we would see. I didn't know people could take that much insulin and be ok. And in our case, and this is a layperson opinion, but I stand by it. I think the insets get overloaded. You know when your basal rate is 40 50, 60 or more units a day. Those insets just They don't seem to be able to keep up. We had so many leaks. We had so many issues. And we tried everything. We rotated sites. We tried a longer needle. We tried every two days every one and a half days. But you know, I turned around the insulin would be like leaking down this kid's stomach. And we knew that it just wasn't working. Something wasn't going right. Plus, he has the Tandem tslim X2 which holds 300 units, we had switched from Animas which held 200. I mean, no pump holds exactly about that. It says it was always a little bit less because you have to prime it and blah, blah, blah, if you use a pump, you understand. But with that 300 units, he was still changing out his cartridge so much more often than before. And I knew that something had to give. And then Cheryl reached out online and said, Hey, I really think you might want to try this. It really might help. So we talked to our endo about it. He recommended Tresiba which was also what Cheryl had recommended which is a newer long acting. And I always laugh because when I talk about Tresiba, I feel like I'm talking about whiskey Right, it's smooth. There's no burn. It's steady. It just doesn't sound like you're talking about insulin. But all those things are true. And it just lasts longer in the body than Lantus or Levimr. And that works really well. For some people, it doesn't work as well. For others. Of course, your diabetes may vary as always. But what's nice about Tresiba is once you hit the steady state, once you've been taking it for three to five days, there's a little bit more flexibility in when you have to take it. In other words, if you take Lantus every day at seven o'clock at night, you really have to take it at seven o'clock at night. There's there's not a lot of wiggle room with it. But of course, it's always better to take it at the same time. But with Tresiba you can miss that dose. We have missed the dose by several hours. And it really has been okay. It just works a little differently in the body and I'll link up more information as to why it's a different makeup. It really does work differently in the body and it's been amazing for us. So we worked with our endo and CDE to figure out the dosing, because we had to change it gradually over time to get to I believe we started out with 30% basal from Tresiba 70% from the pump, and we gradually moved it up. And now he's 50-50. It really took about three months to find the right dosing because we were hitting moving target, right, we went from 30 to 40 to 50%. And we were changing things all the time. But we saw changes right away. I mean, it was incredible. Once those basal rates in the pump came down, it seemed to work so much more efficiently. I really do believe it was the insets, but even if your insetts are working great, and your basal rate is like 20 a day, you know, if it's different and you're not a teenager, why would you want to try this? Well, interestingly, the first people I ever heard of doing untethered, were adults. And the reason that they shared with me was, they just had a little bit of trouble, especially at first trusting the insulin pump. You know, think about it. If you've taking shots, your whole life with diabetes. And suddenly you're on an insulin pump. But you know, it's been 10 years or 20 years, it may be difficult to trust it, not just the technology, but you don't see the insulin going in, like you do with shots. So both adults said that they started with untethered, because it was kind of an emotional thing. They wanted to make sure that everything was working, they wanted to kind of ease into the pump. And then one person did that for a couple of months and one person stayed on it. And I have another friend who has really bad anxiety and she found herself worrying. Are my insets working? Do I have a bad cannula, is something's gonna go wrong while I'm sleeping. And her endocrinologist prescribed, untethered to help her with that anxiety and to help her feel better and to know that the insulin is indeed going in. And that's made a huge difference for her too. So there are a lot of reasons why you consider something like this. But I think the most important thing is to know what's out there to know that this is something that you can do. You don't have to do it forever. You don't have to do it at all. But if you want to try it out, you talk to your endo. And you can do it for a couple of weeks, couple of months. Keep it or not, if it doesn't work for you, nothing ventured, nothing gained. And if it works, it could work amazingly well. Benny hit puberty and oh my gosh, I'm sorry, I don't wanna get too personal on him. But I do want to share this. He hit it like a rocket ship. I mean, it just happened so quickly. It was and he was younger than most kids. And his insulin needs went way up, his numbers went way up, because we really didn't understand what was going on. You know, we were doing everything we felt we were supposed to be doing. I was helping him at the time. So I know it wasn't a question of not bolusing. But whatever we did, you know, once you get high, it's so hard to come back down and that was happening all the time. And in my head I'm thinking, you know, is he eating when I don't know about it, is he not taking insulin, you know what's going on, and it was the basal rates, they just needed to be increased. And once we added Tresiba, and took the load off those insets, his A1C, all his numbers, his time in range, everything went back to pre puberty, even though his insulin needs have gone up, and his teenage hormones are obviously still there. So he's 15. We just had an endo visit and things are finally beginning it looks like to come back down in terms of insulin use. So I don't know how long will stay on untethered and control IQ coming out is, you know, possibly going to change things for us. But he has said he wants to stay on untethered for at least a month into control IQ, and our endo and our CDE supports that and of course, I do too, so we shall see what happens. But if you're a parent of a teenager, and you're freaking out, because their numbers have started to get really high, and you think, oh, they sneaking food, are they not bolusing, but you know, that doesn't feel right. You just don't think that's really the case of what's happening with your kid and I don't want to talk about sneaking food that's those two words should not be used together. So let's just say eating food without bolusing. That's a different topic for another time for sure. But you You're not sure what's going on with your kid. Do not assume the worst is all I'm saying, do some basal testing, talk to your endo about basal needs. Because if like me, your kid was diagnosed at two. And the first basal rates you ever saw on a pump were 0.025 when they suddenly shoot above needing three full units every hour, it's easy to think this can't be happening. This isn't possible. But it is. And this is just one way to kind of help ease the pressure off the pump. If that's not working the way you and your endo think it should be. It's an alternative to think about that really, really helped us. It is no fun to take a shot every day. I give Benny so much credit. Although now he rolls his eyes at me. I can't even say like, I'm so proud of you. And he's like, Mom, you're so lame. But you know what I mean, right? It's not me taking the shot. It's not you if you're a parent. So we really have to get our kids on board with this. I'm not above incentives. Try this for a month. You know, here's 25 bucks for Amazon, or whatever works in your family. But I think it's important to at least ask these questions rather than live day in and day out wondering, what are we doing wrong? Feeling like a failure. teen years are tough enough. And I know, you know, using Tresiba isn't gonna solve everything. But I talked to so many parents who just don't realize how high the insulin needs can get. I mean, look, a basal rate of four units an hour. sounds crazy, but it's not that uncommon, using 80 to 100 units a day of basal insulin. It sounds bananas. But for some people, that's what they need. And people who don't have diabetes, their pancreas is are just pushing this insulin out as teens. You have no idea how much insulin your kids’ friends without diabetes is making them his body. They need what they need. So talk to your care team about it. Talk to your kid about it. And if nobody thinks it's a good idea, just remember, I am the world's worst diabetes mom. Oh, I will would be remiss before I go to not say, while I have sung the praises of Tresiba, like everything else in diabetes land, you're often at the mercy of your insurance company. We were very lucky to find that this was covered. But it is not always it is a much newer, long acting, so you may have to fight for it. definitely make sure your endo is willing to go to bat and help you appeal if need be. If this is something that you really feel strongly about, and they do, too. You don't have to use Tresiba as the long acting to go untethered, it's just what has worked for us, but unfortunately, it is so new that a lot of insurance companies do not cover it yet. Alright, we are doing these minisodes every Thursday, and every Tuesday, we have our regular length interview shows where I talked to newsmakers, athletes, artists, celebrities, authors, speakers, and everyday people just living with Type One Diabetes. Learn more at diabetes connections.com. You'll also find the episode homepage and links to a lot of what I spoke about here, including studies about untethered and a lot more information so head on over to the website, please be sure to join the Facebook group diabetes connections group. I'm Stacey Simms, and I'll see you back here next week. Until then, be kind to yourself. Benny 14:19 Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged Transcribed by https://otter.ai
When 11 year old Elise Sammis applied for the Food Network's Kids Baking Championship, she didn’t think twice about telling them - right up front - that she lives with type 1 diabetes. She says she wanted everyone to know in order to show that diabetes wouldn't keep her from her love of baking, or anything else. Check out Stacey's new book: The World's Worst Diabetes Mom! Turns out, there's another young woman with type 1 on the show this season! You can learn more about Naima Winston here. Stacey met Elise & her mom, Natalie, at an event in South Carolina. They spoke about the show, the stress and her diagnosis two years ago at Disney world. Join the Diabetes Connections Facebook Group! In TMSG - good news at the dentist - and it wasn’t about cavities.. and we'll share a story of a lot of spirit at Walt Disney World Marathon weekend. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode transcript (rough transcription, please forgive grammar, spelling, punctuation) -----------Stacey Simms 0:00 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. Announcer: This is diabetes connections with Stacey Simms. Stacey Simms 0:23 This week, when 11 year old Elise Sammis applied for the Food Network's kids Baking Championship. She didn't think twice about telling them right up front - she lives with Type 1 diabetes. Elise Sammis 0:36 No, that was very important to me, because I wanted like everyone to know that if you have diabetes, you can still do the things that you want to do. And it was super cool because there was another girl named Naima. She's my super good friend and she had also had type one, and she's super sweet. And we were both like, yay, we both have type one! Stacey Simms 0:52 That's right. There are two young women with T1D competing on this season of the show. I met Elise at an event recently, and I talked to her and her mom about the show the stress, enter diagnosis at Disney World in Tell me something good. Good news at the dentist and it's not about cavities and a lot of spirit at Walt Disney World marathon weekend. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of diabetes connections. I am so glad you're here. We aim to educate and inspire about type 1 diabetes by sharing stories of connection. I'm your host Stacey Simms. My son was diagnosed 13 years ago right before he turned two. The show this week is airing a little earlier than usual. Yeah, we almost always drop the interview show the longer show of the week on Tuesday. But because the Kids Baking Championship is on the Food Network on Monday nights. I thought it would just be fun to release the show with Elise on the day of her show. I love the baking shows, and we used to watch them. I feel like it was around the clock for a couple of years my daughter got into them right around the same age as Elise between the ages of like nine and 12. We've watched so many of these baking shows, we made cupcakes, we didn't ever compete. My daughter never wanted to be on TV like that. But it was great. And we certainly got a lot of comments about the cupcakes because I would post them on social media and I'll put some pictures up in the Facebook group because these were, you know, really big. I mean, they weren't beautiful, but they were sharks and cupcakes that look like popcorn and you know, all the dramatic fun stuff. And people would say all the time. Oh, it's too bad that your daughter has that hobby. What are you doing about your son? And I'm like, I'm not letting him eat 17 cupcakes, but I'm not letting her eat 17 cupcakes either. You know, it's fine with Type 1 diabetes, you just have to know exactly what you're eating. Right? It does take extra work. But now go ahead eat the cupcake. And with those memories right in the back of my mind, it was even more fun to talk to Elise and to Natalie It is always a bit dicey talking to reality show contestants. You know, we've done this before, and it is always fun. But it's not just about what they can't say because here obviously they can't talk about the show, even though it's taped weeks and weeks months ago, but because you never know they could win the whole thing. They could be off the show before this episode even airs. But I'm so thrilled that Elise is is one of two girls on the show with Type 1 diabetes and it was great to talk to her and her mom and no matter what happens on the show, she is well on her way quite a personality and really just a fun kid. All right, first Diabetes Connections is brought to you by One Drop and getting diabetes supplies is a pain and not only the ordering and the picking up, but also the arguing with insurance over what they say you need and what you really need. Make it easy with One Drop. They offer personalized test trip plans, plus you get a Bluetooth glucose meter, test strips, lancets and your very own certified diabetes coach. Subscribe today to get test strips for less than $20 a month delivered right to your door. No prescriptions or co pays required. One less thing to worry about. not that surprising when you learn the founder of One Drop lives with type one. They get it. One Drop, gorgeous gear supplies delivered to your door 24 seven access to your certified diabetes coach. learn more, go to diabetes connections dot com and click on the One Drop logo. My guests this week are Elisa Sammis and her mother Natalie. Elise is a contestant on this season's Food Network kids baking show. She was diagnosed with type one at age nine and we talked about her diagnosis. But she was already baking a lot by then. And luckily her family realized you can continue to bake and enjoy dessert even with Type 1 diabetes. Being on a big show like this is a great chance to educate and what's really fun is as we mentioned, Elise isn't doing it alone. There's another young woman on the show Naima Winston from Baltimore is her name and I will put some links and information on our episode homepage, where there is also a transcript about Elise about Naima about the show and more information. So please check that out. That's a diabetes dash connections.com. And while you're there, please note every episode from the last four years is there you may be intimidated to scroll through I get asked all the time, what's the best order? I actually think the best way to listen is either to use the search box and put in whatever interests you Disney, Dexcom, Tandem, Omnipod, right or you can search by category as well. If you click on the tab that says all episodes, you'll see another search box to the right and then filter by category. And that is a really great way to dial into what you want the categories including advocates, athletes, artists, actors, education, technology, travel, family, you know, there's a whole bunch of ways to narrow this down because we've got more than 270 episodes now Holy cow. And I really urge you to go take a stroll through and see what interests you. Quick note, this interview was done on the road, I was speaking at the JDRF chapter, the Palmetto chapter in South Carolina. So the sound quality is a little bit different than when I'm doing things in the studio. And I may be a little soft at times. I'll tell you about the technical nonsense that happened. I'll tell you about that at the end of the show. So let's get to it. Here is my interview with Elise and Natalie Sammis. Let me start with you, Natalie. How did you guys even find out about this? How do you get your kids on a show like this? Elise Sammis 6:38 Well, actually, I didn't get my kid on the show. Elise put herself on the show. Basically, we live in the south and hurricanes are prevalent. And about a year and a half ago, at least you think it was Hurricane Matthew and we got five days off of school. And so I was very bored around the house. So I looked up, like, because I like to bake and I was getting into it. So I looked up like baking competitions and I saw like form so that we could, like fill out a form so that we could try out. And so I made a video for it and I sent it into them. And after that we didn't hear until like six months later. Stacey Simms 7:23 So during that five days and your home and baking was that your first foray? Was that your first time into baking or is it something you'd always like to do? Elise Sammis 7:30 I'd pretty much always like to bake from like, I guess like when I got diagnosed with Type 1 diabetes when I was nine, it was really stressful. So it was just really like stress relieving to be able to bake and it was like creative. Stacey Simms 7:46 Alright, so we have an audience that knows about diabetes. But what you just said when I was diagnosed with type one I found it really stress relieving – that could sound strange. What were your thoughts as she was enjoying this as a younger kid? Natalie Sammis 8:06 The two background stories, I think that are important in this piece are that a I am an avid Baker. And so literally, sugar is in my blood at all times. No, I my motto is dinner is always just a means to dessert. That is my life motto since a small child. And also number two, I'm actually an RN, I have my Bachelor's of Science and nursing. So I understand the principles. I understand that Yeah, you skirt the line a little bit closer. When it comes to desserts. It is a little bit more complicated in your carb counting. But it's also it's very doable. It's not off the table. It's not something that someone should be terrified of. It's something that you can balance and put into your life. And also we realized that half the time that we bake, we don't even eat it really we are sharing it with our friends or we're posting it like on social media to feel unify with other people. People It is really, truly a creative outlet for us probably like how people feel with art, but I don't get art and I cannot eat art. So we just go with the dessert side of the world and we like it and we make friends by giving people desserts. Stacey Simms 9:15 How old were you when you were diagnosed? Elise Sammis 9:17 It was the day after my ninth birthday, and we were in Disney. And there was my birthday and my mom actually fed me a chocolate chip cookie for breakfast. Right there. So we were like noticing a lot of symptoms. I was really thirsty all the time. So then my mom took me to the urgent care clinic, the CBS for CBS. And like the MinuteClinic the MinuteClinic Yep, yep. And I got and she got a glucose meter and she thought as a UTI at first. Natalie Sammis 9:52 Right. So she took a blood sugar first and it just read error. When the very first meter read error. The nurse in me problem solving. I thought, ooh, there's something wrong with the machinery that that Wait a second, I know how to litmus test this. So I stuck my own finger, I tested my own blood sugar and it said 96 I still remember the number and my heart sunk. I knew at that moment, deep down that she had diabetes, but I didn't even then didn't want to admit it. Because, you know, that's the worst. So we went to the urgent care and the urgent care. I still remember they looked at us like we were crazy because we walked in. And Elise is holding a Diary of a Wimpy Kid book. And she's just flipping through and reading it and she has a bottle of water in one hand, because at that point, I said, You drink as much as you can. Right? Right, right. Just drink this. And I said, I think my daughter might have diabetes. They look at me, like, does she fall down? Did she pass out? Like I'm like, No, but she's drinking me. Are you from the area? No, we're on vacation at Disney. And they're like, so you stopped your Disney vacation and you think she has diabetes? I'm like, I know. I basically said tell me I'm crazy. I want to walk out of here laughing like I'm just a paranoid Mom, I just cannot in good faith just go back home after seeing the error recording and having those symptoms and I just need to know so we waited quite a while because we were not on the urgent list at that point. And even the doctor said, I think it's probably just a UTI. But he respected my wish to check your blood sugar. And at that moment, their meter read error Hi. And they said he pulled out his personal cell phone and said go directly to Orlando Children's Hospital. Stacey Simms 11:31 Do you remember any of that? I mean, nine is old enough, but sometimes things get confusing. Do you remember like, anything that your mom was saying? Or what's going on in the hospital? Elise Sammis 11:39 Well, I remember that like when I got in there. I was asking like, Is it ever going to go away and everything then I remember the turkey bacon was disgusting Natalie Sammis 11:49 They put her on this restricted carb diet. So all she could eat with like a massive amounts of turkey bacon, Elise Sammis 11:57 turkey bacon. like sugar free jello. Stacey Simms 12:03 So did you ever get back to Disney World? Natalie Sammis 12:05 Yeah, we did we After that we went to Hollywood Studios. We took it that Disney paid for us for a taxi or an Uber. I can't remember which one back to our place that we were staying in the other. My Elise is the oldest of four children. So the other kids and my husband were already at the party because we said go on without us because we had been in the hospital for about three and a half days. And we got in that taxi cab we threw our suitcases in there and we saw the next bus to Disney and we ran our little hearts out and barely caught the bus and we didn't get to do too much that day. And then we went home the next day but Disney was kind enough to give us passes to come back and when we had kind of our life under control a little bit more and we understood more about diabetes in real life. We came back probably three months later in May Elise Sammis 12:52 is a lot better experience than the last. It was a lot more fun. Okay, Stacey Simms 12:57 so after Disney World when you go home You say you figured out diabetes in a bad life? You were already enjoying baking at that point. After all that turkey bacon. Were you worried? Like that's it for baking or cupcakes? Or did your mom kind of jumped right back into it with you? Elise Sammis 13:14 Well, for about a week later, I was like, I don't even know like what I can or can't eat. And so we like kind of researched a lot. And then I was like, wait, I don't have to just not eat sugar. I can just take insulin for it. So then I was like, Well, I can still bake and stuff. And so that's I was like, yeah, you know, it's got really excited about it. Stacey Simms 13:39 That's great. So what a whirlwind diagnosis and hopefully we'll have time I want to talk a little bit more about Disney World later, but let's talk about the bacon. You send in the video. You wait six months later, what do you hear what happens? Elise Sammis 13:53 So like, I've been waiting and then another season came out, and that was like, they just didn't see it. The following, never gonna happen. And then like, six months later after that, I was on the bus and my mom called me She's like, you're not gonna believe who just called me. And I was like Harry Potter. Stacey Simms 14:14 well, she was almost 11. Elise Sammis 14:18 And then she's like, no, it's the kids baking championship people and they want to interview and I was like, Oh my gosh, yeah. So I ran home. We did a lot of Skype interviews, and I had a lot of assignments and I had to make a ton of desserts. And there's a lot of other videos I had to make for it. And there's a lot of interviews as the mom you know, please seeking I mean, this is an exciting time but at the same time it's a lot of hopes for a young woman to have Yeah, yeah. Nervous that after all of this work, she wasn't gonna get on the show. Oh, very, very guarded, I guess will be the word. Natalie Sammis 14:53 I mean, I'll backtracking when she said mom can I turn in the video and I did have to click like I agree and I help fill in. Some of the, like contact information so it was correct, because at that point, you were 10 years old when she turned in the video. And I told I still remember and people laugh at me still, at least still less than me. My caveat was sure I'll turn in this video but you need to understand that you will never hear back from them, they probably will never see it and you're never going to be on that show. And if you're okay with all those three sentences, I'm feeling okay with letting you turn this in. Because I'm more of a realist. I am Elise is a is a goal setter and a go getter and a dreamer. And she proved me wrong every time so I don't know why I keep doubting it. But I just I think I do that out of protection as a mom and so yeah, as time went on, you couldn't even the process is when they Skype, the parent in the room is not allowed to be in the room. You can't be there. They want the kids to stand on their own. They don't want some mom in the corner given them most of coaching and so I would put my ears to like the door but I have a he was four at the time. And he would be like read to me we've got this new dog that was like two months old and an idiot, so I'm literally like hearing every fifth word. And even then I'm like, oh, like so excited out of my mind that I couldn't even concentrate. So I mean, it was crazy. Just week after week, it went on for from March until June, just on and off on enough like, yes, you made it to the next step. Then we would hear crickets, crickets crickets, and you don't want to be the annoying mom. And then they not pick you because you're this weirdo psycho. So you had to play it cool. You have to kind of just wait for them. And then the next kind of like little piece of cheese would come and he would chase after that. Stacey Simms 16:34 so then this is going on for a while. When did you really start to get close? What happens? I don't know how much you can share. So don't tell us what you can't. But how do you know that? This is going to be it? Elise Sammis 16:44 Yeah. Well, we were doing all these interviews and videos and I was it just kept going. And I was like, when are they going to cut to the chase and like, actually do it. And so then we got a call in like early June. They're like, we want to fly out 15 kids, we're gonna send three home and all the other ones are going to be able to be on the show. And I was like, we're finally going to LA. Natalie Sammis 17:09 Yeah. So we knew flying out there all the way to all this work. I mean, this is now we've been up till 2am, baking things having to print that present the next day unless it's work. I mean, huge amount of work. And it's a risk. It's Stacey Simms 17:24 already going home. And then the competition, you know, Natalie Sammis 17:27 oh, yeah. So our goal was to get on the show, and knock it out the first episode. And we didn't do those things so that we can just hang our head forever. Stacey Simms 17:36 What happens when you're there? I mean, you know, kids are generally pretty friendly, I would think. I mean, you want to be friends, you're hanging out. There's got to be a lot of downtime. If you're not familiar with TV production, there's so much downtime, is it hard doing that knowing that they're not going to stay? Elise Sammis 17:52 It was super hard because like, the first day like all of them were super nice, and they're all like super friendly, and like we went to the mall, and we hung out at the pool together. And like, I didn't want any of them to go. But they had to, there was no thing in me that was like, I want so and so to get out. Yeah. Stacey Simms 18:13 So yeah, be nice if everybody could win. But that's not how the show works. Yeah. All right, what can you tell us because a couple of episodes have aired already, but when this podcast airs will probably be further down the road. So I'm curious if you can share anything about what goes on behind the scenes because I've seen the show and some of it looks very ordered. Some of it looks very chaotic. is some of that chaos planned? Or is it just you guys are really doing what you're doing? What do people really knock stuff over? Elise Sammis 18:38 Sometimes they would tell me to ask how are you doing so and so? And they really like good. And then sometimes they would say like, tell all the other bakers you have 15 minutes left. And the other stuff we would just say random things. Yeah, your mind. Natalie Sammis 18:56 Well, it was funny to that. I think there's a couple times that the cameras People I thought it was interesting. They have 13 different cameras going to get all the angles. They have one big overhead camera. And she said, anytime anyone made a mistake, you knew it, because you'd feel the crane. Whoa, hovering over you. So you didn't want the big camera to go on you. You knew that either something's on fire or going downhill fast. So no one wanted the big camera to be swooping in their direction. Stacey Simms 19:27 we haven't really talked about diabetes and the show. That was in your video, some of your audition. Yes. You mentioned it. Was there any hesitancy on your part to put that in? Was that important to you Elise Sammis 19:37 know, that was very important to me, because I wanted like everyone to know that if you have diabetes, you can still do the things that you want to do. And it was like super cool, because there was another girl named Naima. She's my super good friend and she had also had type one, and she's super sweet. And we were both like, yeah, we both have type one. Stacey Simms 19:55 I was gonna ask you about Naima because I'm obviously we're not interviewing her for the show, but I've seen her story. Well, and it was incredible to me. So far the posts have all been, oh, there's two kids with type one on the Food Network. And everybody's been saying no, no, no, you're confused this name and no, you're no, you're confused. Oh, it's really Natalie Sammis 20:12 well, well, even we were confused. But we walk in the first day and its orientation and all the sudden I'm hearing Dexcom alarms and I'm going Elise, Like what? Like, like it is because it sounds too far from us. And she should have it in your bag. And I said, Who's next column? What Where's your Dexcom? And then this other little girl pipes up and says, Oh, that's mine. And that moment, it was that instant bond of like, you have to wait, we have to. It was our first I think your first real friend like you have acquaintances that have type one, but this is the first time she connected with some one else on this kind of level who has type one and I think that's special. Stacey Simms 20:48 So you guys have kept in touch. Elise Sammis 20:50 We have a big old group chat. We all talk every day. Stacey Simms 20:54 That's cool. I wish I can ask you more but I know Yeah. Elise Sammis 21:00 Did any of the other kids talk to you about diabetes? I mean, kids don't always do that. I'm just curious. They were pretty curious. And they're like, what's on your arm? And I was like, Oh, that's my insulin pump and everything. They were super nice and they're like, they didn't really care about it. They were just super sweet. Stacey Simms 21:29 Did any of the parents because I mean my son doesn't bake and I remember when I've been parental settings for sports or there's always somebody who's like, well can you really eat that? You know, anything like that? Natalie Sammis 21:30 No one really I think because we had gotten that far. And they knew we were that serious about baking. They can't bear Yeah, there's two of us they dare not I think what we are all became like very good friends. I think it's always eye opening when you get to know other people that the little bit of understanding of what type one really means day in and day out and on vacation and we were in a very stressful situation and we were up I mean, her blood sugar would just go crazy every time she baked it every time she was on set I wouldn't even let her eat a single carb because I already knew her blood sugar would be through the roof when she's getting stressed her her levels go high and so her Dex have just been going off. I can't believe we can't hear it at the show you you are only there but it almost felt a little good to be able to just kind of explain and see what is really like it Yeah, we were up at 2am and 3am and 4am treating highs and then treating lows and this is our everyday and oh at least go change your pod or and they kind of like look at you with like huge eyes like you do this every day and you're kind of like Yeah, we do. It's all right that like what I am so proud of at least and I don't know if everyone told you this really but she did not once ever use diabetes or her blood sugar level as an excuse whenever she didn't perform how she wanted to perform or when she was stressed or other kids won certain competitions. She Never ever, ever even had that in a thought like it does not hold her back physically or mentally ever. I want to have my little mom sign like “do you know her blood sugar is 328, do you know hard it is to be thinking clearly?!” like, I just wanted to say that like you don't understand how cool she is right now. Stacey Simms 23:19 So but let me ask you because obviously diabetes did not stop you from doing this. But did anything happened during the competition where you did have to leave to change a pod? Or it Did you know, mess you up? Did anything ever happened along the way because it does happen sometimes. Elise Sammis 23:32 Thankfully, like nothing like sometimes the medical my medical person, she was super nice. She would like come over and give me some insulin but I would just keep on baking and she would like BB Stacey Simms 23:46 Yeah, so was this somebody that the show provided Natalie Sammis 23:48 that they had two medicd, so they had one assigned to Naima one assigned to Elise and I'm sure they would cover the other kids who like cut themselves to cut themselves on fire, but they were basically there to hover over The two diabetics. Stacey Simms 24:01 Did you ever catch yourself on fire? Unknown Speaker 24:02 No but someone did we had to slap it down with a giant pan. Natalie Sammis 24:07 Yeah, yeah, there's some fire soon. Yeah. Spoiler alert. Awesome. Stacey Simms 24:13 So much to ask you about the show. But I'm curious as you watch the show, the judges are a big part of it. You know, were you nervous meeting them? Was it fun? Anything stand out. I don't know what you could tell us. Elise Sammis 24:25 It was super exciting meeting them and like Valerie was super nice. And she was just like a mom like the whole time she like was very nice. That was nice. Stacey Simms 24:37 Sweet the judges of Valerie Burtonelli, who we all know from one day to time, all those great shows and then Duff is the.. he did Charm City cakes, right? Yeah. Duff Goldman. We were huge fans. My daughter is in college now. But we watched Charm City cakes a ton. He was our guy. Yes. And you said he was interesting? Elise Sammis 25:00 He really funny and like sarcastic and he was really, like nice about the judging and everything and he was really, like supportive. Stacey Simms 25:08 Maybe you can answer this. They also seem like they're taking it seriously. I mean, they're Valerie's nicer. Some it seems right to the kids, but they're straightforward. They're not telling you Good job when it wasn't right? Natalie Sammis 25:20 Yeah, well, what's actually funny on I never got to meet them. They only let the kids talk to them meet them. I saw them through like closed circuit TV with no audio feeds, because their parents had to have some sort of eye on their child, but I didn't even get to meet them. But when those kids would come back from tastings and judging things and just baking during the day, they would just say, oh, def came over and talk to me and he was funny, and oh, Valerie, like gave me a hug and I trusted the kids in that setting there. They're not the other I don't want to call it other people's judges names and other shows, but they're not harsh. They're not on kind but they are they are very, they're. Stacey Simms 26:03 Yeah. They seem to balance the fact that there weren't a kids show. Yeah. But if you're going to be good feedback, Natalie Sammis 26:07 yeah. If you're going to get that far, though, and how hard we work to get there, those kids can take it. They're not delicate flowers at this point. Stacey Simms 26:15 So of course, you can tell us how everything went in the end of the show, and you won't get in any trouble. even letting a word well done. I obviously can't ask you about the outcome. And I would never. Was it fun are you glad you did it? Elise Sammis 26:29 It was super fun. I'm so glad that I did it because it's such like a good experience. Like you got to meet so many friends. It was really like a lesson to me about patients. Because all those interviews and all the time that was like put into it. It was a lot and yet there's a lot of waiting. So that was a really good lesson for me. Do you still enjoy baking? Is that something you think about? Please do? Yes, I feel like I would always do baking is really fun. In like, it likes me be creative. Unknown Speaker 27:02 This is a good experience for your families. Natalie Sammis 27:04 It was a really good experience me and at least had a great time. We were kind of out there as buddies. And then my, my husband and the other three younger kids flew out for a couple days to visit us. And they decorated our hotel room with balloons galore and messages on the mirror of good luck. And the little kids and me, myself included this kind of trail along on her coattails and got to have this amazing experience. So it was wonderful. Stacey Simms 27:30 I have to ask you, she was three younger children. Do they know the outcome? Because I wouldn't trust my kids. No offense, I don't know your family. Unknown Speaker 27:41 No, they don't. Natalie Sammis 27:42 They even will sometimes, like try to guess and like act like it's real. They're like Oh, so and so did this and they probably did this or that and will be like, oh, whatever you want to think like we don't even validate it because the the what's the number at least that we will be sued if we let information that we Elise Sammis 27:58 will be sued 750,000 Natalie Sammis 28:00 Yeah 13 page contract saying that we will not disclose information so we didn't tell the five year olds Yeah. Stacey Simms 28:07 Anything something else exciting that you all are a part of and I guess this is pretty brand new is your clinical trial for horizon from insolent which is the hybrid closed loop system using Omnipod? So Natalie, can you share a little bit about what is being tested? Is it the full system with the phone app? Natalie Sammis 28:26 Yes, it's the full system. So it involves they gave us a brand new Dexcom transmitter that has the capabilities of obviously talking to the the Omnipod and to the new I don't do they call it a PDM Do you remember lease, I don't know. They still called the PDM. But it's basically a locked out Samsung and they provide that as well. Along with pods that look identical except for this little blue tab. That worked just the same. Also, what I really really like about this, the whole point of it is that you are able to put it in that Automatic mode they call it and with the auto mode, it's every five minutes the Omnipod index home will talk to each other and adjust the Bazell every five minutes as needed. What's cool about it too, is let's say you forgot your PDM you're locked out Samsung somewhere. Even if it has no range, if you could throw it off a cliff even for at least three days, your basal insulin would still be being adjusted because the Dexcom and Omnipod can talk to each other independently. Stacey Simms 29:29 Have you used any hybrid closed loop stuff before? Elise Sammis 29:32 No, this is our first time. Stacey Simms 29:34 All right. How many days? It's only been a couple of days. We started last Wednesday today. To 60 All right, though. Yeah. So have you seen a difference? Elise Sammis 29:42 Yes, it is crazy. Like even we went to Disney World last week, and I ate a ton of junk and everything. And I like went to sleep and it would be a little high but that's what your blood sugar does. And I went to sleep and for the night It would be like a straight line I was so amazing it was it's a big difference. Just the normal taking insulin every time you hear ringing Natalie Sammis 30:09 Yeah, it is just made me feel like less of a nag to like, oh at least check your blood sugar. Oh, I heard your alarm three times a baby. Have you looked at that like that is now silencing our neck. So I have high hopes for it and it really is giving us better control. She's in that crazy stage of life being 11 about to be 12 where it makes no sense. She goes to sleep it looks like she ate a box of Krispy Kreme Doughnuts for no reason and it's nothing but hormones and I don't know unexplained highs and lows. So already this week, it is refreshing to see so many more straight lines. I mean, there's still today we were stuck in the three hundreds for hours and that's just what it is. And but I'm really pleased so far and I'm ecstatic to be able to have it for longer than the three month trial period. Stacey Simms 30:57 All right. Before I let you go you said you have at Disney World, you ran in half marathon full marathon Natalie Sammis 31:04 on Team JDRF. The half marathon half marathon. Stacey Simms 31:07 Yep. So you went back to Disney World. You ran the team JDRF half marathon. Let me ask you first though at least what's it like for you to go back at Disney World? Do you think about diabetes you just have fun when you're there. Elise Sammis 31:18 I have like weird flashbacks kind of. Because I like like remember walking in that same spot being like, all frazzled, like what am I going to do? But then like going back and feeling like Well, I'm kind of normal now. Like, I got it under control. So like happy for me. Unknown Speaker 31:35 That's fantastic. So like, Natalie Sammis 31:37 I had some a mom, I'm going to get weepy no problem very silly. But to see it come full circle to leave Disney World that first time. And you know wonder what your future is going to be like wonder what your daughter's life is going to look like. It's kind of being scared out of your mind. And then to come back to the literally the same place in Disney. I don't know. It has some feel to it. Like, even if you had gone 20 years ago, there's something magic. There's that little spark of Disney that kind of remains the same. So it puts you right back where you were in this time to feel so much confidence. And I still remember on the half marathon, you turn a corner and run into the Magic Kingdom in the it was still dark because it's a ridiculously early marathon. But the castle was all lit up. And I had this like moment of like, Oh my goodness, we've made it so far. I am so happy where where we're at now. We're beating diabetes. I'm not being beaten by diabetes. And at that very moment, as I'm like, getting all bizarre and emotional. I look up and there's Team JDRF fans, right? They're saying that moment of like, oh, then I'm like, wait, I can't praise because I'm practice. So I stopped crying and I kept running and that was it. But yeah, it is a quite a journey, I guess, to come full circle and to go back in that way with so much support and so much like people behind you and helping you raise money for a cause, you know, to help your kid just live a happy, normal life. So it was great. Stacey Simms 33:18 Thank you both so much. I would say Best of luck, but it's all. So excited to watch. To see how this goes. I hope you'll come back and talk to us again. Thank you so much. Unknown Speaker 33:29 Thank you. Unknown Speaker 33:35 You're listening to diabetes connections with Stacey Simms. Stacey Simms 33:41 Alright, so fingers crossed for Elise and for Naima. I am taping this just after the second episode has aired. So who the heck knows what has happened since and what will happen going forward, but we will certainly be following cheering these girls on. Up next. Tell me something good but diabetes connections is brought to you by Dexcom. And you know, when Benny was very little, and his fingers would get wet, right? I'd give him a bath or we'd go in the pool. I would always notice his fingertips. And you know exactly what I mean, right? They were poked so much that they were just full of little little pinprick holes. You could see when they got wet. He is 15. Now, I don't really see his hands much anymore. But the other day, he's such a ding-a-ling. He was doing a project for school. He was using a hot glue gun and he you know, he burned himself a little bit. He's fine. He's fine. But when he came into show me I noticed again and every time I do see his hands, it just knocks me out. his fingertips look normal. We've been using Dexcom for six years now. And with every iteration, we've done fewer and fewer finger sticks, the latest generation, the Dexcom g six eliminates finger sticks for calibration and diabetes treatment decisions. Just thinking about doing 10 finger sticks a day in the past. Makes me so glad that Dexcom has helped us come so far. It's an incredible tool. If you're glucose alerts and readings from the G six do not match symptoms or expectations. Use a blood glucose meter to make diabetes treatment decisions. learn more, go to diabetes, connections calm and click on the Dexcom logo. It's time for Tell me something good. I've got two great stories one was sent to me via Facebook Messenger. The other one I saw in a Facebook group and if you've got a story for me, the easiest way is in my Facebook group at diabetes connections the group or email me let me know what's going on. What is good for you. Melissa wrote in “I have a Tell me something good. I've been listening to your podcast since maybe the summer and my four year old daughter was diagnosed March 28 2019. You are very optimistic. I haven't found a positive thing with my daughter's diabetes. Until today. It's been a horrible nine months with everything. We had our first dentist appointment Since diagnosis I've dropped a lot of ball since April, when the dental hygienist saw the pump. She knew what it was. I didn't have to explain. The conversation got direct to where we treat for Lowes, Skittles and starbursts and gummies. All bed for her teeth. When the dentist came to check, we had a discussion about the candies. He asked for her Endo's name, and he knew her. He's the pediatric chief of dentistry at the local Children's Hospital where her endo is affiliated, he texted an email to find better candies to use instead of the sticky kind. He went on to say collaborates with a lot of specialized doctors in the Children's Hospital to take better care of the kids. And he said get back to me after a discussion with the endo. I found the experience relieving that I wouldn't have to fight this battle. The dentist got it and my daughter was in good hands being cared for. I didn't think I'd ever find anything positive about our new normal. Today I did. So that's my Tell me something good.” Melissa, I'm getting emotional reading what you're saying here. Thank you. She writes for your podcast your optimism, and having somebody to tell the story to understand. Her daughter's name is Katarina, beautiful name. And she told me that it's been difficult to find care for her. You know when they're that little it can be so hard preschools, that kind of thing. But she went on to write that they have been blessed. She's been taken care of by her school nurse in an all day preschool. Her endocrinologist who they love and her mother, Melissa's mom, the grandma, who was able to watch her while the parents are at work, and now the dentist, she writes, “I didn't realize until this how lucky we have been. These are battles. I do not have to fight. Your optimism about any life with T1D is something I was envious of. I wanted some of the burden of this disease lifted off of my shoulders, and I was able to see that I have that after this visit. So I'm a little bit emotional here because of all the nice things she said and just having a place to share that with right. It's important to have people who get it and know important it is that the dentist didn't scold her and say you shouldn't be doing that. But said, Let's find a way to do this that works with Type 1 diabetes. And I think that's fantastic. But if it was a little strange for me to hear, even though I know it, I am very optimistic. I am very positive. I put these rose colored glasses on a lot and diabetes is hard. Type 1 is difficult. Being a parent of a kid with type one it's difficult to it's not all sunshine and rainbows over here. Trust me, I hope I'm open and honest about it. But at the end of the day, we've been really lucky. And I am optimistic and if you're feeling down or things are hard, no judgment, man. It is hard all around. I think I do an okay job of being honest and sharing the ups and downs. But I do know that my general outlook with type one is is an uplifting one. I hesitate to say it because I feel like it's an odd thing to say I feel like it puts me like I'm trying to be uplifting, but the truth is that's how it was presented. To us when Benny was diagnosed, and that makes all of the difference. When you're diagnosed on the very first day you meet a nurse who says, he's going to be fine. I have type one. And I have one child at home and I'm pregnant with my second and don't listen to the scary stories and don't listen to the hard stuff. It's fine. And then the next day, you pick up the phone and call three local people that you know who have kids with type one, because you've met them in your health reporting over the years, and they all say that he's gonna be great. My kids Is this my kid does that it's fine. It really changes than if you don't have those things. And I know how lucky I am to have them. So Melissa, thank you for reaching out. Thanks for a little bit of the gut check, as I like to say the rose colored glasses, but send us any good news and send us anything you want to vent. I hope you join the Facebook group. I'd love to hear more about Catarina. Our other Tell me something good this week comes from the Walt Disney World marathon weekend. That's where Natalie Sammis was when they said they were in Walt Disney World again. Very recently. She was running the half marathon. You talked about with all the jdrf people, they're getting emotional. Well, there's so much going on for that weekend. And I wanted to spotlight Julia Buckley, who's a friend of mine and I've mentioned her on the show before. She is a flight attendant and she is amazing. And she won the Spirit Award for jdrf. She ran on Team jdrf. I don't know how she does it. She flies all over the world comes home runs at Walt Disney World. She always has a smile on her face. So Julia, thank you so much for all that you do. I love some of the pictures maybe we'll throw some of those in the Facebook group as well but to everybody who ran at Walt Disney World, hats off man and now it's a fun race but it's still a lot of work. If you've got to tell me something good story, send it my way. I am so excited. We're getting more and more of these all the time or put them out on social media every week. So I'd love to hear from you tell me something good. Before I let you go, this is not a Tell me something good. This is a Tell me something embarrassing. So I mentioned the very beginning of the show that there were some technical difficulties when I recorded the interview with Elise and Natalie. And real quick, the way I taped the show, usually is that I do the interviews right from my home computer. I have a little setup little home studio. But the interviews are generally conducted via Skype, and then into my computer and then into a backup hard drive. Later on, I record this part of it like a round the interview, right and that goes right into the computer. But when I'm on the road, I don't want to slip my computer. It's only got one input for the microphone, and I had basically needed three inputs. my microphone, Natalie's mic, and Elise's mic. So I use I mentioned that hard drive. I use a recorder for all of you audio files out there, I use an H five zoom. It is a wonderful little recording device and i i only scratched the surface. I know I'm not using it to its full potential. I can plug two microphones in there. And I know I can do more with it. I could use a sound mixer or whatever. But generally when I have more than two microphones that I'm using a plug two and two Each five zoom. And then I have another recorder where I put on a lavalier mic and a little Clippy mics that you see on the evening news or maybe you've done an interview or recorded something for work and they put a little clip mic on your collar. That's a level layer mic, and I use that for myself. And here's the embarrassing part. The recorder I use when I do that is an old iPhone. And I'm not even sure how old it is. It might be a four, it might be three. It doesn't work anymore for anything else. I mean, I don't certainly have service on it. But it is a perfect dumb recorder. And it's like a tape recorder back of the day. And I had purchased over the years, these level ear mics that plugged into your phone. They're fantastic. But when you switch to the newer iPhones and you got rid of the headphone jack well guess where the lav mic plugged in. So I'm out of luck. I can't use my newer phone as a recorder if I want to use the lav mics. So we get to South Carolina. I'm setting everything up. I'm there early and speaking doing a book event before First I'm going to interview with Lisa, Natalie. So I set everything up. Everything sounds good. The stick microphones, the regular microphones, the one if you ever see pictures of me the ones that have the logos on them. Those are plugged in. They're working fine. They're a little low. I'm not really sure. I think maybe Elise was just very soft spoken. So I'm trying to adjust audio levels. I plug my stuff in, and the old phone, the editing software will not open. I use a program called twisted wave. And it's a great program. It's it's up to date, but the phone is so old. I think it was trying to update the the editing software. So I said, forget this. I'll just use my voice memo. So every phone has a voice memo app. It's fabulous for podcasting. It really works well. You can just record your voice for however long and then you email it to yourself. I have guests do this. Sometimes if it's a really short interview. I don't do it much. But you know, once or twice. I've had people do a short segment and a voice memo is great for them. So it looks like it's working. Everything's fine. We do the whole interview. voice memo is there I can hear it. It's recorded Elise Natalie are fine. I can't Email the file to myself. I can't get it off the phone. It's stuck on this old iPhone three, four. It's sitting there. It's It's wonderful. Amazingly, the microphones I was using picked up my voice enough so you heard the interview. It wasn't terrible. It probably wasn't great, I'm sure john kennis my editor worked a ton of magic on it every time he gets a file from me probably shakes his head and said, yes, this person obviously worked with a technical producer her entire radio career. So I'm now in the market for a new level ear mic, because if you know anything about audio, and you heard me say the h5 zoom, you know that you can also plug a lav mic or any kind of really smaller mic into another outlet very easily. And this whole thing could have been avoided if I had just done that. So that was my adventure. I figured we'd just soldier on right you just want the stories. You're less concerned with pristine studio sound, right? Haha. Well, look, I'm going on the road a lot this year. So I figured I better learn how to do that. And figure out how to better get it done. So stay tuned for the continuing saga of how the heck Stacy makes her lovely mix work. Alright, the next stop is not too far from me. I'm going to Raleigh the first weekend in February Raleigh, North Carolina for a jdrf type one nation summit. Then I am going to Maine the following weekend to South Portland, Maine, to talk to the main pea pods, very excited to talk to this group. And we have a very busy schedule after that. Thank you, as always, especially this week to my editor, john Drew kennis from audio editing solutions. Thank you for listening. Remember this Thursday, we do have another minisode coming out this week. I'm talking all about untethered, what that means, why we have loved it. I got a bunch of questions after I mentioned this in a couple episodes back. I talked about receiver a little bit which is a newer, long acting. So I'm going to go through untethered, what it means why it's not just for teenagers, and why we've had such good success. With it, and that is our next little mini episode. I'm Stacey Simms and I will see you back here on Thursday. Benny 46:11 Diabetes Connections is a production of Stacey Sims media. All rights reserved. All wrongs avenged Transcribed by https://otter.ai
As we all wait for the release of the newest hybrid closed loop software, Stacey has some thoughts about what she hopes it'll bring to her family's experience. Transcription below! Check out Stacey's new book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription Stacey Simms 0:00 This episode of Diabetes Connections is brought to you by “The World's Worst Diabetes Mom, Real Life Stories of Parenting a Child With Type One Diabetes,” available now as a paperback eBook and audiobook, Learn more at Diabetes dash connections.com Welcome to one of the minisodes of diabetes connections. I'm your host, Stacey Simms. And I started these shorter episodes this year, just so I could talk a little bit about stuff that interests me. We still have our weekly episodes every week that are longer and more interview based. But these are just little bits of topics one at a time, where I want to kind of share what's on my mind and then hear back from you whether it's in the Facebook group or elsewhere on social media. If you are new, we have a terrific Facebook group. It's diabetes connections, the group, please reach out and join and you can always reach out via email. or other social media I am Stacey at diabetes dash connections calm. And today I want to talk to you about some thoughts on Control IQ, the new hybrid closed loop system from Tandem. The emails for Control IQ were set to go out this week. So I'm sure there was a lot of online chatter and you know, scrambling for this and did you get your email and that kind of stuff? Did you get your prescription? And do you have it yet? And have you downloaded it? And I thought it would be fun to just take a moment before you know we start sharing our thoughts about Control IQ and trying it you know, just for the record, kind of to get this down. What are my hopes, what are your hopes for Control IQ and really for a lot of these hybrid closed loop systems and before I get into that, for the Hybrid closed loop systems systems. I think that your perspective on this has to depend on when you entered the diabetes community. I know we have people listening who have been diagnosed for years and years, you know, 50 plus years, 60 plus years. And their perspective is going to be very different than someone whose child perhaps was diagnosed six months ago. So just as a reminder, my perspective is that of a parent whose child was diagnosed 13 years ago, at 23 months, who went seven years with no CGM, because frankly, we didn't we didn't really feel like it was accurate enough to put a second sight on my kid's body. And by age nine, it really became his choice. And then when he chose to do it, I don't think he's taken it off for more than two days. You know, Maybe a beach trip here and there. But we really are huge fans of CGM. And he's had a pump since he was two and a half. So that's my perspective. Look, I know this is not going to be perfect, right? I mean, all this technology has issues. But what I really hope but I am hoping for is not, you know, perfect numbers, right? I don't think Benny's A1C is going to suddenly go down to 5.8. And that's not my goal. What I'm really hoping from Control IQ. What I'm really hoping we get from Control IQ is less stress, less of a mental burden on both of us, and more freedom for Benny. And let me just talk a little bit about that. Because I if you know me, and you listen to the show, we give him a lot of freedom. But a perfect example is he was at a wrestling tournament. I mean, he's just off crutches recently, but the kid hasn't missed a practice or a meet. He just really likes to go and be part of the team and they put him to work. He's been Great, but he went to a trip where he was catching the bus at school at 6am. They took the kids, this was a Saturday, they took the kids about 45 minutes away. He didn't get home until eight o'clock that night. They feed them on the road. It's a lot of potluck. It's a little bit of fast food, but it's really nice. A lot of parents get together and make homemade stuff. And I pack lunches for Benny too, just because he likes to eat certain things. It's not about diabetes really. and then you know, I try not to hover and check in all day. Obviously, I can see his blood sugar on the Dexcom and he's responsible for remembering and taking care of himself. And on a lot of these days, and this is this happens really just about every weekend during wrestling season, and usually once during the week they have a match after school to what generally has been happening is he's bolusing after, because he's not sure exactly what he's going to eat, or he forgets, right, and that he's kind of correcting a little bit late. So we haven't had any really crazy highs. I mean, there's one inset issue we had, but he's been kind of floating up to like 210 to 215. And then I'm debating when do I text him because we do have an agreement, we, you know, that is well within my rights to text him, but at the same time, you know, I want to leave him alone. I don't want I don't want to burden him. So it's been a little bit of a struggle and I'm really hoping for his Control IQ evens those numbers out, right, I don't really expect it to take care of you know, if he forgets to bolus and spikes up to 400, which happens every once in a while and he come on, I don't expect it to fix that. But if he's bolusing as he's eating or a little bit after, or he miscalculates carbs, right? I'm really hoping it helps with that. I'm hoping it helps with the excitement spikes and some of the adrenaline spikes from athletics. I don't know what it'll do with that. I'm optimistic but You know, we'll have to see, What I hear about all the time from people who have done the DIY loops is that they, they don't necessarily have, quote, better control or more in range numbers, because a lot of people who do DIY frankly, I mean, they had really low A1Cs to begin with many of them. I know as you're listening, you're saying not me, okay, I'm just making a generalization stay with me. The point is that they may not see a huge difference in A1C or time in range, but they are seeing better sleep, they are seeing less work, right, more freedom. For Benny, with Control IQ and for everybody with Control IQ, I hope it means less work and less upstairs less mental burden. And for people who do have higher A1Cs, who maybe are newer to pumping or newer to CGM or maybe this is an opportunity for better education. I really hope that those people do see better health and do see better outcomes and do see better outcomes. I mean, as you listen to this podcast, again, making a generalization Here you are, you know, the top educated people in the diabetes community, not necessarily because of this podcast, but we've done the research. People who listen to this show are extremely well educated, you're seeking out more information, you're in the Facebook groups, you're reading stuff, right, you kind of know what's going on. And if you tuned in to learn about Control IQ, just the fact that you know what it is called, and what it is, means you're better educated than probably, I'm going to throw out a number that I'm making up 80% of people in the diabetes community, community, and those are the folks that if they have access to this technology, which is a whole other thing, story altogether, the cost the access, oh my goodness, the costs the access. I mean, I we must acknowledge that. But if they can get this, those people are going to see huge decreases I think in A1Cs and that's really exciting stuff. Is this a solution? a cure? Of course not. And as I just touched on there, we have bigger issues, the cost of insulin, access to insulin access to this technology, education, education for endocrinologists access to endocrinologists for mostly for adults with type one diabetes, right? I mean, there's so much going on here. I didn't mean to get off on a tangent, but my expectation for Control IQ is not that we're going to see miracles. We already sleep through the night pretty well. But I'm hoping that he can continue to have the independence that I give him with more time and range with less nagging from me, you know, gosh, in the back of my mind, I'm really thinking about camp later this year. If you're not familiar, Benny goes away to non-diabetes, regular sleepaway camp for a month every year. And he does really well. That's a topic for another time, I probably will do a minisode on camp. But you know, he does run higher for that month. Some of that is our thinking is about safety. But most of that is about he's a kid who's basically responsible. He's a kid. He's basically responsible for his care 24 seven at this camp, and he will often bolus late or forget a correction bolus. I can't wait to see what Control IQ does for him at camp. It's gonna be really exciting. All right. I know a bunch of you listening are thinking I'm not going to go with Control IQ. I've heard from many people who already see they're going to wait and let it roll out. And then when all the bugs are done, they're going to go ahead and take the plunge themselves. We plan to get it the minute it is available to us. Our endocrinologist, we just saw him at the very beginning of January. He said the prescriptions are in we are all set. So it's possible by the time you hear this, that we already have it and we're using it in Benny's pump, although I doubt it will it will see and I'll post in the Facebook group and I will give a review of course as soon as we possibly can. But man, I'm thrilled to think about this. And if you use another type of insulin pump and you're still listening, you know of course insulin has its own system coming out. Medtronic has a new pump coming out there are more CGM is coming to market. There's gonna be a lot more to talk about, of course when it comes to hybrid closed loops, but we've been waiting for this for a long time, you know, Those loops. But we've been waiting for this for a long time, and I'm so excited to see what it does for Benny. And you know, Benny would probably be the first to tell you that I am the world's worst diabetes mom. If you'd like to learn more about the book or about me, you can head on over to diabetes dash connections dot com and be sure if you're new especially to check out our extensive archive of shows. You can search by keyword or by subject. We will be back next week with our regular interview longer episodes and those drop on Tuesdays. Beginning This month we have added transcriptions for every episode, and you can see those over at the homepage, just click on the individual episode homepage and scroll down and you will see the text of the episode. A lot of people have been asking for that I'm really excited to provide it to provide it. Thank you so much for listening. I'm Stacey Simms. I'll see you back here on Tuesday. Until then, be kind to yourself. Transcribed by https://otter.ai
We're talking about the youngest people with type one diabetes: babies and toddlers. When you can't talk and you're barely eating solid food, the challenges of T1D rise to a new level. Stacey's guest is Pediatric Endocrinologist Henry Rodriguez, the clinical director of the University of South Florida Diabetes Center. Check out Stacey's new book: The World's Worst Diabetes Mom! The interview features everything from breast feeding, diluted insulin, pump and CGM use in babies and much more. Join the Diabetes Connections Facebook Group! Resources: Facebook groups: Learning to Thrive: Type 1 and Toddlers Diapers & Diabetes In Tell me something good. The other end of the spectrum: celebrating a long life with type 1 - 64 years since diagnosis and going strong. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your healthcare provider. Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Rough episode transcription (please forgive grammar, spelling & punctuation) Stacey Simms 0:01 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes. And by Dexcom take control of your diabetes and live life to the fullest with Dexcom. This week, we're talking about the youngest people with type one diabetes babies and toddlers. At that age, everything – food, sleep, communication has unique challenges, including what happens when you dose and they won't eat. Pediatric Endocrinologist Henry Rodriguez is the clinical director of the University of South Florida Diabetes Center. He's actually referring to the older insulins there, NPH and regular not commonly used anymore, but that situation certainly still happens. And we talked about everything from diluted insulin, breastfeeding and CGM use In Tell me something good. The other end of the spectrum celebrating a long life with type 164 years since diagnosis and going strong. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your healthcare provider. Announcer: You’re listening to Diabetes Connections with Stacey Simms. Stacey Simms 1:42 Welcome to another week of the show. I'm your host Stacey Simms. So glad to have you along. And a special welcome to new listeners from the Greater Western Carolinas Dhapter of JDRF. I attended that summit over the weekend. So hello to anybody who found out about us there and is tuning in for the first time. And hello to all the moms and dads of little ones. You know, this is an episode focusing on babies and toddlers with type one that I've actually been trying to do for a very long time. It is hard to find an endocrinologist who really wants to come on and talk about this. I don't know why, but it's taken a while. So I'm so happy that Dr. Rodriguez decided to spend some time with us. Now as you know, if you're a longtime listener, the subject of babies and toddlers with type one is very near and dear to me. My son was diagnosed right before he turned two. So I want to tell you right now, this is a longer episode. But please stay with it. I mean, come and go. as you please, we will be here waiting for you. You can certainly pause and come back. It's a longer interview. But I wanted to really take advantage of having a person who could talk about this stuff and the interview transcription is available at the episode homepage, go to diabetes dash connections. com, click on this episode, and you will see the transcription just a little bit down the screen there. That's new for 2020 for the show. I know we're well into to January at this point, but my house is finally a little bit back to how normal is now I guess because my daughter just went back to college. She's been home for about a month which was fabulous, but she was definitely ready to go back to school and I don't know what I'm going to see her again and maybe just until spring break. Oh my goodness. And of course Benny is at regular high school so he's been back for a while now too. Very happy to have a new sponsor this year! Diabetes Connections is now brought to you by One Drop, and I spoke to the people at One Drop, and I was really impressed at how much they get diabetes. It just makes sense. Their CEO Jeff was diagnosed with type one as an Dult and One Drop is for people with diabetes by people with diabetes. The people at One Drop work relentlessly to remove all barriers between you and the care you need get 24 seven coaching support in your app and unlimited supplies delivered, no prescriptions or insurance required. Their beautiful sleek meter fits in perfectly with the rest of your life. They'll also send you test strips with a strip plan that actually makes sense for how much you actually check. One Drop, diabetes care delivered, learn more, go to diabetes dash connections calm and click on the One Drop logo. My guest this week is Dr. Henry Rodriguez, a pediatric endo and the clinical director of the University of South Florida Diabetes Center. As Dr. Rodriguez confirms, as you'll hear, more younger people are being diagnosed with type one, a trend that seems to have started about 15 to 20 years ago, but there's not a lot of easily accessible information to help parents in this age group. I will link up some information in the show notes on the episode homepage, including a couple of Facebook groups I do recommend for parents of very young children. But when Benny was diagnosed, we really didn't know anybody with a child that young. And I felt like we were making up a lot of it as we went along. Now the good news there is that he's fine, although I certainly made a lot of mistakes. But when you're talking about babies and you real six months old, one year old, it's a totally different ballgame. So if you are new to the show, I just want to warn you. I think I talked more in this interview than I usually do. definitely get on my soapbox a few times, and you'll hear me pushing my opinions and pushing some of them on to Dr. Roger. Yes. And he pushes back a couple of times, which is great. I feel very strongly about this age group. I mean, this is my wheelhouse, but of course, I am not a doctor. So here is my interview with Dr. Henry Rodriguez. Stacey Simms 0:02 Dr. Rodriguez, thank you so much for talking to me. I'll be honest, this is an issue I've been trying to cover for a long time. And I'm thrilled that we're finally getting to talk about it. So thanks for coming on. Dr. Henry Rodriguez 0:14 Oh, it's a pleasure. Stacey Simms 0:15 I'm not even sure where to start. I mean, between my personal experience, and then talking to so many moms of babies and toddlers, let me maybe back up and ask you, as a pediatric endocrinologist when somebody comes into your office or you meet them at the hospital, and they have a child under the age of two, where do you go? What do you tell them? How do you start? Dr. Henry Rodriguez 0:39 Well, I think, you know, we certainly start with the basics in terms of, you know, we feel the etiology of Type One Diabetes is how we think, you know, develops. I think what we end up doing these conditions many times is, is you know, first addressing you know, I think, whatever challenges diagnosed with Type One Diabetes, even though we fully appreciate it providers that are treatable. You know, there's that sense of loss and morning. So I think acknowledging that, and then we try to really focus on, you know, the fact that, that it is a treatable condition. It is challenging, there is no question that life is going to be different as folks at home, but but it's it's manageable. And, you know, in our center, we have the luxury of a multidisciplinary team. And we're all about supporting that family, you know, is is the case, I think we fully realized that. I think there are two times of life, at least in the pediatric age group, that are particularly challenging. It's in the very young children. And then it's the children they get diagnosed around the time of adolescence. And so for the very young child, the bottom line is that I think it is extremely important that we tailor the therapy to the patient. It's true across the board, but I think particularly with the youngest ones, Stacey Simms 2:00 When you're talking about the youngest ones, I think as we go through this interview, we will kind of section it because obviously, there's a difference between a six month old and a 16 month old, you know, and a three year old. But my personal experience was was interesting. So when my son was diagnosed, our pediatrician he was he was not yet to it was about five to six weeks before he turned two. She said, Bring him in. It sounds like type one diabetes, but he's too young. I've never had a case of someone under the age of two. So bring him in. And let's roll it out. And luckily, you know, we did we brought him in. I mean, unluckily, we rolled it in, obviously. But is that something that was either common at that time, which is 13 years ago? Does it still happen that people think you can't possibly have type one if you're under a certain age? Dr. Henry Rodriguez 2:44 No, no, I think you know, what we encounter typically is at the other end of the spectrum, it's, it's adults that come in and the assumption is, well, you're an adult, you obviously have type two diabetes, you couldn't possibly have type one. But I will tell you that You know, and we we actually I oversee both adult and pediatric providers at our center. And, you know, historically, pediatric endocrinologist, pediatricians will assume it's type one until proven otherwise. And on the adult side, it's the opposite. So, you know, I think we are in in less danger of mismanaging, so to speak a young child because, you know, our, our kind of default is to treat those children with insulin and then, you know, figure out the rest afterwards. elevated blood sugars, you know, can can occur transiently in a child who's Ill know in the midst of stress of illness and we can kind of say, well, Mom, okay, well, let's just see how how things don't obviously if you have a child that has an extremely high blood sugar that has, you know, positive ketones, possibly acidosis well, then then, you know, you know it's insulin deficiency and So you proceed in that regard. But you know, for a child that comes in with, let's say RSV pneumonia and you get a few older blood sugars will let that slide, so to speak. But, but for sustained high blood sugars, you know, we always resort to insulin therapy. Stacey Simms 4:17 Okay, so it was just maybe my pediatricians personal experience hadn't borne that out. It wasn't some something common. And before I move on from that, is it. I had heard anecdotally, again, that there are more cases of younger children with type one in the past 10 to 15 years than there were, say 30 or 40 years ago. It's true. Dr. Henry Rodriguez 4:38 Yeah. Yes, it is true. Unfortunately, we know that overall, the incidence of Type One Diabetes is increasing. And that increase is really most affected children less than five years of age. I should mention before we move on, you know, and we will come into the youngest individuals as you said, but for children less than six months of age, one thing that always factors into the equation, particularly if there's any kind of, you know, multiple family members that are affected by quote type one diabetes, we also have to think about monogenic diabetes. So those are individuals who have a genetic mutation that has affected the machinery as it were, that's necessary to monitor the blood glucose to you know, make the insulin, store the insulin, release the insulin, all those things. Now, it's far less common. But we have to think about those things in the youngest individual. Stacey Simms 5:42 And I will say will, as you listen, we will link up information about monitor genetics, diabetes in the show notes, you'll can find it on the website, and I'm actually doing a show in just a couple of weeks with a family that thought the child had type one thought the parent had type one, but it turned out it was monitored now. So we'll be talking more about that in a future episode but more information because as we're talking about the youngest kids here, that is something you absolutely have to keep in mind. Alright, so let's talk practical, because most of the questions that I have taken from other parents, and then I had myself I remember when my son was diagnosed, we're about precision of dosing. I mean, it's so hard, right? I mean, when baby was diagnosed, he was he was a bigger kid, luckily, so we were not using diluted insulin, which I'll ask about, but we were drawing up quarter units, which are not measurable. They don't make up you know, there's no lines for quarter units. At least there weren't a syringe. There wasn't even a half unit pen at that time. How do you advise people to do these itty bitty teeny weeny doses for kids? Dr. Henry Rodriguez 6:49 Honestly, I am so mentioned we were get to it, but I'm not a great fan of diluted in so I think you can do that. I perhaps you could accuse me of a bit of paranoia, but I'm always concerned that they're there, either, you know, less likely on the part of the period but, you know, another caretakers so forth an error at that level of the pharmacy. I'm always concerned when when you dilute insulin, think about it. Stacey Simms 7:16 I'm sorry, I cut you off. I got excited. Yeah, I mean, Dr. Henry Rodriguez 7:18 it, you know, if you're diluting the insulin tenfold and for some reason, you you make an error and you develop those, you deliver the full strength insulin. That's 10 times the dose you had intended giving. So that that is as I said, there may be a little paranoia on my part. I tried to get away from that. I, I will tell you, as you mentioned that, you know, even with the syringes, there are now insulin syringes that half half unit increments. And when you say you're going to measure a quarter unit, you have to understand that you're getting between zero and you're not giving the unit units Stacey Simms 7:55 was not my husband's quarter unit. We knew that we were just trying to Bad tech. Dr. Henry Rodriguez 8:01 But I think that's where I generally move towards, in fairly rapid progression. Move towards insulin pump therapy. Stacey Simms 8:12 Okay, wait, but before we do, because there jumped you jumped? Right? Let's Let's continue that because I do think it's worth talking about we never used it. I didn't even know it was an option at that time. But when I see people talk about it, they seem very enthusiastic about it before we go any further and I'm happy to, as you said, on the one hand is the paranoia on the other end of the parents who do think it works well. But let's start with the facts. What is it? I mean, you're not diluting insulin at home, are you a pharmacy? Oh, my goodness. Dr. Henry Rodriguez 8:39 So you can go Yeah, you can go one of two ways. I mean, the manufacturers do. Provide them you can purchase a diluent it's essentially the solution that insulin is prepared in and you you can dilute that insolent. Some folks do that for is, again you can you can segue to off of the pump their baby deal with the pump as well. But, you know, you dilute the insulin and it's it's something that my preference if you're going to go that route is to get a reliable pharmacist to do that for you. But there are some individuals that do it at home. Stacey Simms 9:24 And okay, so this sounds like a very foolish question, but I don't we're just at the beginning here. How do you do it? I mean, do you literally take a regular vial of insulin and then dilute it at home with you pull it out? You put I try to think of how I would do that. Dr. Henry Rodriguez 9:39 Well, I mean, you have a while of the diluent. And then you introduce however many units of insulin internet, we used to do this back in the old days request from our therapy, you know, we could tailor the concentration to provide a volume that was reasonable to inject it sir doable, but, you know, we, I generally prefer to go with simpler, not never going to be foolproof, but making it less likely that an error is going to occur. Stacey Simms 10:17 I know that people really have good success with it, but it would make me very nervous as Dr. Henry Rodriguez 10:24 I share that Stacey Simms 10:26 was just a go. I mean, insulin we know has a shelf life, so to speak, you know, out of the refrigerator for 28 days and in the refrigerator for the date that's on the packaging, just diluting it change that. Dr. Henry Rodriguez 10:39 It shouldn't but obviously, as you indicated, I mean, you want to do it, and then this sterile fashion as possible. So you know, it I, and again, I'm stating the obvious here, but, you know, we think 28 days, it's not because on the 29th day, the insulin no longer functions, it degrades over time. And considering particularly when you're dealing with small doses like this, and considering the accuracy that we try to achieve with regards to dosing for the individual carbohydrates for the correction doses, you if if on day 45, your insulin is 90% as effective as it was in day one. That's not ideal. So that's why we generally encourage people to rotate out the vial over the 10 every 28 days now, in a child that isn't using very much insulin, you know that that means you're disposing of a lot of insulin. And so you know, there is a certain level of waste there. What we typically try to do is, you know, your pens hold 300 units, your vials hold a full thousand units. I think, if you're looking at it from an economical standpoint, even if you cannot use the pen to the The video says you can draw from the pen with a syringe. However, I think it's incredibly important that folks understand that once you've done that with a pen, you're going to potentially introduce error to any insulin you deliver with the pen mechanism. In other words, you're changing the volume within that cartridge in such a way that if you then turn around and use that pen, the way it's intended, you run the risk of inaccuracies in the dosing. So we always tell folks, once you've drawn from a pen with a syringe don't revert to using that pen has as an injection device by itself. Stacey Simms 12:37 Yeah, yeah, we do that we actually pulled insulin out sometimes to using the pump from a pen. But then you cannot use that pen to inject as a pen. That's it. It's done. If now it's just a big dumb vial. You can't use it anymore. Dr. Henry Rodriguez 12:50 It's a little it's a little Stacey Simms 12:51 it's a little dump file. Um, okay. You mentioned instead of diluted insulin, that you would prefer the precision of an insulin pump. And this isn't an editorial statement, but I'm just thinking when I remember when my son was on the insulin pump, he was two and a half. And I see these babies that are on insulin pumps, and the babies are so teeny tiny, you know, and the pumps are so large, this isn't really a medical question. But they really do okay on them. Dr. Henry Rodriguez 13:20 They do they, I mean, you you make allowances I mean, if you think about So, so here is where your choice of pub is important. You know, the easiest pump is is the only pot I mean in terms of educating people how to use it, in terms of placing it and so forth. The problem is is you appreciate the pod takes up quite a bit real estate, when you compare it with a tip you know, and otherwise traditional infusions site. So that comes into play as well. I mean, typically you're placing the pod either on the fly of an infant or a box and, you know, changing diapers and so forth that then becomes a potential issue there. So it is not without its difficulties, but it does allow you for more flexibility for more precision in insulin dosing. And if you think about the youngest one, let's let's take an infant who's breastfeeding while they're feeding every two hours, you know, get first of all, that's a lot of injections. If you don't go with, you know, I generally will prefer to provide insulin more physiologically, if the child is continuing to make some insulin on their own might be able to use a long acting insulin to kind of cover things over the course of the day. But you're not going to achieve the degree of control that most folks would really see as, as as a goal with just money Jessica, this one you can do intermediate acting insulins, but then you You're really requiring that you have regimented, you know, caloric intake, carbohydrate intake. And in a very young child, or an instance of that better eat type in, I think it's nearly impossible to ensure that. Stacey Simms 15:19 Well, you you brought up breastfeeding, which is on the list because I see these moms. Again, my son was a little bit older. I did breastfeed, but it was done by the time he was 23 months old. But a lot of these moms are breastfeeding their kids with Type One Diabetes, which I think is unbelievably challenging, because we don't know what they're actually eating. Even without diabetes, we worry about that. So what do you tell moms who really want to continue breastfeeding? You mentioned a couple of different options there. But do you just check a billion times? I mean, how do you do it? Dr. Henry Rodriguez 15:54 Well, I again, not that to put more more hardware, so to speak on this little one, but You know, this is where continuous glucose monitor, you know, I think is a lifesaver be provides you with a lot of data and you know, you could certainly, and decimal changes over time, but you can certainly have the breast milk analyzed and you can you can look at the carbohydrate content and so forth, but you still don't know what volume that child is going to take. So, it is a bit of trial and error, quite honestly, I mean, so much as type one diabetes management is, but it really comes down to well, you know, pro breastfeeding session, you know, the blood sugar typically goes up x, you know, we'll try a little bit of insulin and we'll see how that goes. And it really becomes trial and error and this is where, you know, it is it is so much a partnership between the diabetes care provider and the parents. Many times and the primarily being mom, but you know, it is trial and error. We always OPT or The default will be, you know, we want to be really cognizant of the risk for low blood sugars. So we don't want to over those will likely undergoes, you know, until not that many years ago, you know, we as as a pediatric endocrinology community would say, Well, you know, it's a very it's very young child, we might tolerate, you know, a one sees of nine, in some cases 10%. Now, I think nowadays, with the more rapid acting insulin analogs with the possibility of insulin pump therapy with continuous glucose monitoring, we're all those things help reassure us and allow us to be more aggressive, so to speak. So we don't have infants with blood sugars that are routinely elevated, you know, once you cross that threshold of 180, or 200. Keep in mind that that child is is going to be urinating more because they're losing glucose in the urine, and so That creates challenges in terms of keeping them hydrated. And certainly you've got to get more calories into them because they're losing them. And so, you know, it definitely is a complicated process. Stacey Simms 18:12 All right, we have to stop you there. Because I have to go back. I've written a bunch of notes, and we're going to follow up on everything you've said. But there's two really dumb questions I do have to ask before we move on. And the first is, oh, well, hang on. So sending the breast milk out to be analyzed. Who is analyzing their breast milk? No, do I? How do you mean, how do you do it? Is that something people should Dr. Henry Rodriguez 18:34 do? Well, I think it's probably I mean, yeah, you can have that done. Stacey Simms 18:43 Who does that? Well Google it and find a bunch of services that give me the calorie count. Dr. Henry Rodriguez 18:49 No, no, no, I think I think you get bored with your healthcare provider and you can send it out to a laboratory and have that done. Now, I and I'm not saying that that absolutely, positively has I think, you know, in many cases, that's probably the healthcare provider, the dermatologist, trying to get a better handle on things, you know, and it makes the trial and error perhaps a little bit easier. But, you know, breast milk does change and it's it's consistency. And it's caloric content and so forth, over over, you know, the period that the child is breastfeeding. So it's not foolproof, it's not as if you know, you've got a nutrition label that tells you exactly what what the what the makeup is the breast milk fascinating. Stacey Simms 19:41 And then I guess that would be a lot of help for pumping breast milk as well. Right. Dr. Henry Rodriguez 19:48 Exactly, exactly. So, you know, for and again, as a pediatrician, we obviously advocate for breastfeeding. breastfeeding is best and pumping does allow You particularly for, you know, a child that maybe is having some challenges in terms of feeding on a routine basis or even, you know, tolerating the large volume and so forth, you know, being able to quantitate that I think goes a long way and making it easier. Stacey Simms 20:20 So, you mentioned that in the past, you would be okay, or you tell parents, it's very reassuring to have an agency of nine or 10 at this very young age. And I assume that's because the alternative was so dangerous. You know, you don't want the kids to be going low without CGM in the past and without the fast acting insulin is just so difficult. But I've also heard that in the past, it was thought that there was some kind of protection when kids were very little that the highs kind of didn't matter as much was that am I correct in thinking I heard that somewhere. And is there any truth to it? Dr. Henry Rodriguez 20:50 Yeah, no, no, no, you are correct. And so the way I used to think of it as well, people didn't think that you know, with regards to complications, and and You know, serious consequences of high blood sugars, that that clock didn't start ticking until after puberty? To which I think that's pretty ridiculous. Unfortunately, over the course of my career, I have seen very young adults that, that, you know, we're poorly controlled. And in young adulthood, they're they're suffering the ravages of high blood sugars there. They've got renal impairment, they're there, they're having issues with their site and so forth. That that, we can't do that. And in as you've indicated, I think this is where continuous glucose monitoring allows us to be far more aggressive. No longer do I have to have a parent check twice a night every night to make sure that that child isn't having low blood sugars overnight. And so as a consequence, I can be more aggressive and say, Well, no, we don't have to have that baby. Go to sleep with a blood sugar of 200. Because we're worried about lows, we can target something far lower because we know that we're going to be able to, in the case of the dex conference that it will alarm that will, it will, you know, notify the parent that, that there's an impending blood sugar and you can intervene before the top actually goes well, Stacey Simms 22:22 before we go on, I just want to be clear on and maybe this is a bit more of an editorial statement, but I think you'll back me up when you're saying that the concern about babies and toddlers, you know, going over 200, because you know, we're all looking at time and range. Now those of us were lucky enough to use CGM, which is really 70 or 80 to 180. I don't want parents who are maybe newer diagnosed, to feel like their kids are going to die or go blind if they hit 200. Because obviously, you don't want to stay there. You don't want to stay at 300. But can you give us a little reassurance that the concern there is just on a regular basis, you're worried about hydration, you're worried about long term But if your child hits 200 it's not the end of the world. I just worry about. I don't know. All right, I'll let you talk. Sorry. Dr. Henry Rodriguez 23:11 No, no, no, no, I really do appreciate you pointing that out. Because there are some parents that, you know, I think sometimes we, we, we, we focus on, you know, this is the ideal. I think we're actually doing much better with CGM now. But, you know, it used to be that the gold standard was, you know, up a post meal blood sugar that doesn't go over 180. And you have to appreciate that even somebody that doesn't have diabetes does have a rise in their blood sugar after meal, but it typically doesn't go above you know, certainly 140. So, you know, it your point i think is well taken. We don't want the parent of any child or a particularly young child to think oh my lord, you know, they've they've had Our blood sugar's of 230. Over the last week, horrible things are going to happen. That That certainly is not the case. We do for the reasons that you've raised, particularly with regards to hydration, and just overall longer term risk. We do want to minimize high blood sugars, but you know that the occasional blood sugar over, you know, 200 is not going to have lasting effects on that child. Stacey Simms 24:34 All right. Which brings us to another topic that I think is really important for this is more toddlers than babies, but once they start eating, right, we all know that pre bola Singh is the gold standard you're supposed to figure out, you know how far in advance when my son was younger, we could bolus ahead maybe 10 minutes. Now we can pre bolus 20 even 30 minutes for some meals. He's a big kid. You know, it's differently it's a lot different have a 15 year old than a 23 month old But that also can be very complicated for parents who don't know what the heck they're toddlers going to eat. I'm curious what you counsel people who say, you know, how do I do this? My kid throws food on the floor, or he will only eat a cookie, or we sit down to eat and he takes two hours to eat breakfast, you know, how do you I have my own feelings? But I'm curious as a as a mom, but as a medical professional, what you tell people? Dr. Henry Rodriguez 25:24 Yeah, so, okay. Management of Type One Diabetes is all about compromise. I think back to you know, early in my career in diabetes is when the first rapid acting insulin came came came on board, and that that was life priority walk. And so prior to that, you know, the recommendation would human regular insulin was to administer it 30 minutes before before eating. And so I, you know, I imagined the parents of a very young child toddler, where they they did what they were told and then The child refuses to eat whatever they put in front of them. And, you know, at that point, you know, panic sets in and is you know, children learn very quickly. And those children many times and hold out for whatever it is that they want it. And so you can imagine the the parent getting out the, the ice cream or, or the chocolate milk or whatever it is little Johnny wants little Johnny's going to get because the consequences otherwise is that that child is going to have, you know, potentially a serious low blood sugar. So the rapid insulin analogs allowed us then to say, Well, you know, human log Nova log a Pedro have an onset of action of bout twice as fast as regular insulin. And so, understanding that it wasn't perfect, but it was reasonable to say well, if you really not sure that that child is going to eat you can give the influence after they're done, now, if they take an hour to eat, that's going to be a problem because you're going to get a significant blood sugar rise. Before that insulin actually starts working. Keep in mind that even your rapid acting insulin analogs, they don't peak for an hour to hour and a half. So, if you're waiting to give the insulin, you know, after you eat, there's going to be a significant rise in blood sugar before it comes down. And, you know, this is where, again, you know, you're you're now for lack of a better term, ultra rapid acting insulin a logs that are now coming to the forefront or about twice as fast as your human log, no log in a Phaedra. And so I think, from that perspective, there's hope that we're not going to suffer from, you know, higher blood sugars just because we're giving insulin beforehand. You know, we're the one ultra Rapid acting insulin and all that is currently available is as part of its fat, the dashboard or fast. And that's made by Millville. I know that we're actually doing one study here at our center with the ultra rapid form of human walk. And so it's interesting because at least in the adult studies, that insulin given up to 20 minutes after the meal, worked about as well as controlling the blood sugar is giving, you know, ordinary life pro human log beforehand. That's great. So I think, yeah, absolutely. So I again, it's allowing us to be more aggressive and limiting the rise in blood sugar after a meal, even if it's given afterwards. Stacey Simms 28:48 Yeah, and I will admit, we did not have a CGM until my son was nine years old. And we just came up before that, but frankly, I didn't think it was accurate enough at the time for what we needed, and he didn't want to Second Sight, told the story before. So we bolused after until he was probably six years old, and not having to use glucose monitor, obviously, you're not seeing the rise of blood sugar, because to two hours later, he's fine. But our agencies were always great. You know, I really feel like it didn't hurt him, for whatever reason to do it that way. He's also though, you know, he was a healthy eater, he did not take an hour and a half to eat a meal, he probably took three seconds to eat his food. So it doesn't really like we were waiting that long. But but it really can be done. And I'll be honest with you, Dr. I really feel like and this is a little soapbox moment, which I may take out, we'll see. But this is a little soapbox moment. I just feel like you can you can create disordered eating, honestly, if you're not careful. You know, and if your kid starts saying things like I'm going to only the ice cream or I'm going to hold out for the desert. You know, there's really and my heart goes out to parents who are so concerned about never rising over. 120 or 140? I see these parents, Facebook groups all the time. And it's like, oh my gosh, your kids. I mean, I hate to say it, your kids can have diabetes. For a long time. I hope there's a cure. But I mean, it's very difficult. So I appreciate you saying that. I appreciate you giving some hope fest directing insolence. But just permission to bowl this after is amazing. But also, you mentioned if they're gonna eat for an hour, again, with an insulin pump, it's so helpful because you can maybe bolus right there's there's 25 carbs in this plate. I'm going to get five carbs up front. I'm going to give five carbs five writes in right I mean, you can do it as they go to which is fabulous. Dr. Henry Rodriguez 30:40 Now, I think if I may digress for a moment, I think, you know, I'm sure you've heard the term brutal diabetes. Yes. And it and so I really on in my career, and admittedly erroneously assumed that was a non adherent patient. In other words, their blood sugar's were far more difficult to control because they weren't doing doing what we told them as their providers to do. And over the years, I've come to appreciate that even though I still don't like the term, type one diabetes, not Type One Diabetes for everyone. We've done so much research over the last few years. There are individuals that have had type one diabetes, you know, that the gold medalist from Johnson that continue to make insulin years and years later and so for individuals that have you know, their their pancreas is still making some insulin. It it's far easier for them to have more stable blood sugars, as opposed to someone who's totally dependent on what we refer to is exhaustion is rejected insulin by a pump or or needle. It's a different animal. And so, you know, if you have an individual that is, if you think about has a prolonged honeymoon period, they're making insulin summons, when not enough in the background kind of takes the edge off. If you think about it, not only, you know, in that honeymoon period, not only are the blood sugars that are controlled on the top end, but think about the risk for low blood sugars, it's less because, for example, if you're making 50% of the insulin you need, and you're going low, you have the ability to turn off that 50%, at least in theory, right, so that your body can respond by making less insulin, and therefore you have less risk for low blood sugar. So, you know, I think I've grown somewhat wiser over the years and in really come to appreciate that. You know, it just because someone has erratic blood sugars, it doesn't mean that they're not following the management plan. Stacey Simms 32:58 Absolutely. And then conversely, I will say, perhaps I was on my high horse. If someone has a good experience, it doesn't mean that's because they're doing everything right. I will also point out that for one some magical reason, my son does not get ketones easily at all. And it's been it's been a remarkable because it has, I mean, knock on wood, all I can everything I can knock on. But you know, he just doesn't develop that he's been sick just like every other kid. He's been high for days. I mean, he's a teenager, and he hasn't developed large ketones that I ever remember where I have a friend whose kid hits to 50 for two hours, and he's got large ketones. So it's a great reminder that everyone's experience really is different. I appreciate that. Let's just talk a little bit you mentioned the honeymoon period. I have heard again, this is a lot of I've heard Can you confirm but I have heard that when children get type one it is very acute, and almost always the honeymoon period is either short or you know the insulin producing cells are just gone. Is that true? Dr. Henry Rodriguez 34:05 Depends. This is one of those areas. So you're probably familiar with Type One Diabetes trauma. And before that it was the diabetes prevention trial. So we had been screening family members of individuals with Type One Diabetes, to determine, really, you know, who's at greatest risk. And then in some cases, we've been doing oral glucose tolerance test, really, if you think about it, just kind of testing your pancreas to see if they can make enough insulin to keep the blood sugar in normal range, even with lots of sugar coming in all at once. And what we found is that, you know, the progression first tends to be more late and slower in older individuals and it tends to be most aggressive than the youngest, which is a little bit disheartening, but but it is what it is. And so there was a publication came out that was jointly authored by the endocrine society jdrf and the ADA, and this came out, don't quote me on this, you will have to double check it, but I think it was December of 20 16%. I'll look it up. And, and based upon and I can provide the reference later on, but based upon largely all the individuals that we screened, and trauma, and our follow up of them, what we have determined is that type one diabetes, you don't have type one diabetes, when you end up with high blood sugar and in the emergency room, we are typical symptoms of urinating a lot, drinking lot, perhaps losing weight without trying. Those are the classic triad of symptoms that we that we associate with gosh, you have type one diabetes, we can and we have intermit, tested up to five different antibodies that we can measure in the bloodstream, that are a signal that the immune system has begun to Identify the cells in the pancreas that make insulin the beta cells as quote for it, and then the immune system makes antibodies that can target those cells. We can measure up to five, what we've determined is in individuals that have two or more, their lifetime risk of developing type one diabetes is nearly 100%. So that's where it's now accepted that there's a staging system for type one diabetes. Stage One is when you have an antibody, at least lashley, excuse me, two antibodies of the five. Stage Two is when you have those two antibodies, and on that oral glucose tolerance test, the stress test for the islet cells that they don't rise to a level but the standard for diagnosing Type One Diabetes based on the test is a two hour level it's 200 milligrams per deciliter or more. So you haven't reached that threshold, but you're above the 140 So you're in that gray zone. So that's what we refer to as glucose intolerance. It basically tells us that the beta cells are starting to fail, so to speak. And so that's stage two. Stage Three is when you have classic symptoms, when you generally present with clinical symptoms, and then stage four, or individuals that have established diabetes for an extended period of time. So So to answer your question, the auto immune process occurs in the background. And it's, you know, we are as part of research studies, primarily trauma screening individually. I'm sorry, there are some religious studies in Europe as well. But we're screening individuals that we know are a great risk or greater risk because having a family member now, if I can go off a little bit for a moment, keep in mind that the vast majority of people that get diagnosed with Type One Diabetes do not have a family member. Okay. So Somewhere around 90 95%. But for those individuals that do have a family member, their relative risk is about 15 fold greater. And you might say, well, gosh, that sounds like, you know, that's terrible, that's really high. What you're what you're basically looking at is a relative risk of about 5%. In other words, for every 100 individuals that we screen that has a family member with type one, only five end up being in a body positive. If you were to look at that in the general population, it's maybe two or 3000, as opposed to 500. So the risk is greater in family members, but the majority of individuals who do get diagnosed with Type One Diabetes, there is no family history. Stacey Simms 38:46 It's so interesting, and that that was us. You know, we had no family history, like so many people, as you said, but then three years later, my cousin was diagnosed. So now we're thinking, hmm, you know, is it something is it because we won't know I mean, you really I guess we won't know until the next generation perhaps, but both kids have gone through. Several of us have gone through trial net. So, you know, nobody else has any markers. So we shall see. But it's a great idea. I know it's you know, it's funny because it is great. And then you have to be honest with you. I my first reaction was guilt. I mean, I guilty that I didn't have it, and I would have felt guilty if I did have it. Oh, that's a different show. Okay, so we're gonna Yeah, exactly. Um, I got a really interesting question that I wanted to make sure to address to you and it was about food and I know you know, you maybe I could have a nutritionist on and go into this in a more specialized way. But the question was, sometimes especially with kids, you know, we get these these free snacks. You know, you can have I remember my son was anything under 10 carbs was a free snack. But the question was low carb snacks are tough for infants and toddlers, because at this age group, things like nuts and raw vegetables. are choking hazard. Right? Any ideas or comments on low carb snacks? Dr. Henry Rodriguez 40:06 Their challenge? Hey, if you think about it even, you know, I mean, breast milk, as we mentioned, or you know, regular milk, I mean that there are some carbohydrates there. I think, you know, it all comes down to, you know, as we said, it's a compromise, and you have to do your best I I have a number of patients who, we don't recommend this and younger children by any means, but there are adults, as you're probably aware, that find that their blood glucose control is far better if they really restrict your carbohydrates. Okay. And again, I want to emphasize again and children, we generally discourage that because children need a balanced diet in order to grow and develop, but adults will find in some cases, they severely restrict your carbohydrates. So we're talking about 15 or 20 grants in an entire day. Now, you might say, well do they need it? Certainly the basal insulin, you need that regardless. But for those individuals, we we focus on the protein intake, because protein will raise your blood sugar not nearly to the degree that carbohydrates do. But you need some insulin to cover that, that glucose rises that can occur with the increase with with intake of protein. So in the absence of carbohydrate, we look at dosing for protein. But the short answer to your question is, you know, it's going to depend on the age of the child, as you said, and youngest children, you don't want to give them foods that they may choke on. You should certainly make snacks with almond flour and things like that, where you know, you don't have that choking hazard. I think there are a lot more options out there now than there were in the past. Stacey Simms 41:55 Yeah, another question I got was about communication. Because an oh my gosh, this was so difficult for us. You know, when you have an older child, they can tell you kind of how they're feeling even if they don't have all of the hypoglycemia awareness and they're not really sure how they feel. When you have a baby, they can't I mean, my son couldn't say diabetes. And how do you talk to parents about I remember my biggest question was, what is he napping? Is he low and passing out? You know, we were just checking him against the gym can be very helpful, but not everybody's gonna have one. You know, what do you eat? But Dr. Henry Rodriguez 42:31 yeah, so that particular instance more and more. We try to get that child on the CGM as soon as we can. And we will we will go to bat for that family and we will try to get it covered through the insurance will find a way because otherwise, you know, I parents are sleep deprived. You're the monitoring that child overnight, and all hours. And so I think continuous glucose monitoring in that Keith is almost decentral. I mean, we we're at the point now where the devices are accurate enough. Certainly, we're well beyond the stage where the FDA said when they were first introduced that, you know, you couldn't do any insulin dosing based on the CGM reading. So we know that they're accurate. You know, we always double check the blood glucose if we're concerned, but I think it, it brings so much value that I really strongly advocate for trying every possible means to get that young child on a continuous glucose monitor. Stacey Simms 43:40 And I'm, I'm sure if my son was diagnosed at that age today, I would push for it as well. But I do want to ask you one thing before I let you go here, you know, you said parents are sleep deprived. I don't know if you're aware you probably are. That even with CGM, and I actually think again editorial in part because of it, that more parents are more sleep deprived. Because they cannot stop looking at the numbers. And it's not only Dr. Henry Rodriguez 44:05 to their self well, Stacey Simms 44:07 please, but you know, you have your alarm set, but people either don't trust it, or they're so worried. Or On the flip side, as we mentioned earlier, they've got their higher alarm set to 125. So they're not sleeping even with CGM. Right you do about that? How do we balance this amazing technology that is supposed to give us less fear with this odd? I don't know if it's social media phenomenon, or what's happened in the last five years, where there is almost more fear, in a way, Dr. Henry Rodriguez 44:35 right. So I think it really is a matter of education. And so I think that's where, you know, in some cases, you may be talking about maybe meeting with a psychologist to address those fears, but, but I always tell families, you know, I never tell a parent that they should not check if they feel they need to check. But I do tell them that I would like them to get to a place where they feel comfortable sleeping overnight, and not having to look continuously. And so that means, you know, ongoing communication with with that family and working with their diabetes care team to get them to a point where they feel comfortable, that's critically important. Otherwise, you know, all Type One Diabetes is stressful, I don't need to tell you that. But But getting folks to the place where, you know, they feel that it's less of a burden, and more more of a benefit of a tool that that will allow them to, to, you know, not not worry so much. You know, we're not at the point now, where we have closed loop systems, unfortunately, we're getting there, right. But if you think about it, even with a closed loop system, I can't tell you. It's funny. I've got patients now that have been on continuous glucose monitoring. Almost At the time they were diagnosed. And it was it was telling to me because I had a patient say, Well, what did folks do before there was CGM? It's, it's really interesting. But But I will tell you not to put all the blame on the adolescence. But you know, I said I had all this and patients that for whatever reason, you know, their CGM, either they run out of supplies or, you know, as you as you mature, know, a couple weekends ago, you know, there was lots of connectivity receivers and still work, but, but at any rate, they somehow forget that they have the ability to poke their fingers and use a traditional glucose monitor. So, yeah, yeah, it's a challenge. But even when you have a closed loop system, you know, influence being delivered under the skin, you're dependent upon that little Kameelah that sits under the skin. So one of the things that I really, really focus on is, you know, kind of worst case scenario. So, if don't change your site right before you go to bed, you want to make sure that you have the ability to observe you with a CGM or do a blood sugar reject, you know, an hour to after you set aside change, you know, As matter of routine, so that you know that the candle is in place that is, you know, the insulin being delivered and so forth. You we always have to come back to basics. If you have a closed loop system, and there's an interruption in insulin delivery, you need to be aware. And so I think those are some basic skills that that folks will have to still master even when we have closed systems. Stacey Simms 47:28 Yeah, that's at any age too. That's great advice. Alright, so let me ask you one more question here. Before we wrap this up, you are a pediatric endo. You've seen kids from infant ages, you said and you do see some young adults. So what's it like for you to see somebody who was diagnosed as a toddler or a baby? grow up with type one? I'm sure you've had patients. I mean, we've been seeing the same endo for 13 years and he's seen my son from a pacifier. I mean, my son would be mortified, but from a pacifier in diapers to now he's got his driver's permit. You know, what was it like for you? Watch these kids grow up. Dr. Henry Rodriguez 48:02 It's inspiring. And actually, I, it's funny, you should mention that. So I've been at the University of South Florida now for nine years. And there's a patient that I saw at the time of diagnosis when I was in Indiana. And, you know, we both ended up moving down to this area. And so it's a young lady who's now a freshman in college, and I saw me she was diagnosed at five years of age, and, and she's just phenomenal. You know, it really is a testament to her to her, her family. You know, it's, it's funny. People ask me, and for years, they've asked me, Well, how do you how do you end up in diabetes? And I used to say that I don't have a personal connection to diabetes, because diabetes is not something that's my family, and we've got other issues. But now I tell some I don't have a genetic connection because I have had really the great fortune of working with individuals in the diabetes community, as you said, it's a fairly small one, particularly talking about type one. But there are some phenomenal inspiring individuals that that really, you know, when I have challenging days, I think of those individuals and it really does inspire me. Stacey Simms 49:20 So as you're listening, and I know most listeners this week will probably be parents who have very young children. You know, I think we can all think I still think back, Dr. Rodriguez of when my son was diagnosed, and I thought what is his life going to be like, you know, this it's not going to be the life I thought he would lead. He's only he's not yet to and this is gonna ruin things. And it didn't. Like I said, He's got his permit. He's, he's healthy. He's obviously changed our life, but my fears from that age didn't come true. Dr. Henry Rodriguez 49:51 And again, every day, individualism jdrf, the American Diabetes Association really has made great strides. You probably Heard of the ruling of the FAA? Just recently that, you know, used to be that I told children that, you know, what, what do you want to be when you grow up? And, and they tell you well, I want to be a pilot and that was not an option. Now is that now so? I think the technology, the advances in therapies have gotten us to a place where, you know, we, you can do just about anything you want to do. And so that's, that's something that's, we try to communicate that message to all of our families. Stacey Simms 50:35 Well, thank you so much for spending so much time with me, I could probably talk to you for another three hours, but I really appreciate it. Thanks for sharing so much of your expertise. Dr. Henry Rodriguez 50:43 Well, it's a pleasure chatting with you. -------------------- (Stacet) I'll link up some more information including the Facebook groups that I mentioned, for the very youngest people with type one diabetes over at the homeless. page and remember on the episode homepage you can find the whole transcription of this interview. I know it was long I really appreciate that you stuck with it stuck with it coming up in just a minute. Tell me something good. We're gonna go to the other end of the spectrum, not babies, but a woman who was diagnosed 62 years ago. Diabetes Connections is brought to you by Dexcom and we've been using the Dexcom G6 since it came out last summer and it's amazing. The Dexcom G6 is now FDA permitted for no finger sticks. Whoops. We've been using the Dexcom G6 since it came out and it's amazing the Dexcom G6 is now FDA permitted for no finger sticks for calibration and diabetes treatment decisions. You do that two hour warm up and the number just pops up - previous iterations of Dexcom didn't do that. I am still getting used to that kind of magical pop up without calibration. You know we have been using Dexcom for six years now and it just keeps getting better. The G6 has Longer sensor. We're now 10 days, and the new sensor applicator is so easy to use. Benny does it by himself. He says it doesn't hurt. Of course we love the alerts. Of course, we love the alerts and alarms, and that we can set them how we want. If your glucose alerts and readings from the G6 do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions. To learn more, go to diabetes dash connections dot com and click on the Dexcom logo. It's time now for Tell me something good brought to you by real good foods where we tell the good news in our community. And I got a great note in the Facebook group and that's diabetes connections the group if you're not in there already, please go ahead and join. Carolyn Fellman said that she is celebrating 62 years with Type One Diabetes. She writes. I was diagnosed at 11 I remember the pan at 11. I remember the pan my mom kept on the back of the stove with the glass syringe. And steel needle that had to be boiled every morning, I took about 70 units of length take insulin. I'm sure if I'm saying that right. One of my favorite stories she says is that one day my mom asked the pharmacist for a pumice stone to file a rough spot of a needle. And he yelled at her for an actress buying a new needle, they cost 50 cents. I started MDI about 40 years ago, and a pump about 25 years ago. I got a Dexcom two years ago, and I learned more about what my body does with food in that first year with a CGM that I had learned in the previous 60. Thanks for asking. She says, well, Caroline, thanks for asking. She says, well, Carolyn, thank you so much for telling us your story. And one of the best parts about her post in the Facebook group is that other people who've lived with type one for 5060 years, chimed in and started telling their own stories. It's just so great to hear and it's just incredible to think about how far everything has come I mean you hear these stories right but here's somebody who lived it and is still doing well. Wow Carolyn I really appreciate it! Send me your Tell me something good stories we’re sharing them on social media this year as well. It can be anything from a very big milestone diverse story to something your kid did that was fun to something you really just want to share maybe someone in your community did something nice. You can email me Stacey at diabetes dash connections calm or post it on social I'm all over the place. Stacey at diabetes dash connections. com or post it in the Facebook group or message me over social bind me and tell me something good. As I mentioned in our last full episode with the time shiftiness of podcasting, Benny was supposed to get off crutches and into physical therapy and I am thrilled to announce that he is if you're new to the show, he tore his meniscus in October and it has been a long road. He missed the entire Wrestling's Season pretty much, it's almost over now. But he's doing great. He's been so patient. I mean, I got to give this kid some credit. It's been really tough and he's done a great job. He has just had a really good attitude in a really crummy situation. So I'm really, really proud of him. We went to see our endocrinologist in the beginning of January, it was a great visit. He's had the same a one see, for the last three, maybe four visits, if not all four. It's been very, very close, which we're really thrilled with. Going to be excited to see what happens with control IQ. And if that makes a difference. I can't imagine that it won't. Our next book stop is actually tonight. If you're listening today, this is released on the 14th. I'm heading to Columbia, South Carolina, to talk to the JDRF chapter there. I'm very excited to share some world's worst diabetes mom stories, and then it's off to Raleigh on February 1, we're doing a lot of stuff around the Carolinas, which I love. I live in Charlotte, North Carolina, North Carolina, I posted the complete book tour through March on social media and you can see all of the stops at diabetes dash connections. com just click on community. We have a short episode one of our minisodes coming out on Thursday, and that is all about control IQ. I did a full episode with all the information you need and you can go back just a couple of weeks ago that is with Molly McElwain. Malloy, this episode is just my hope for control IQ, my expectations, my thinking, my expectations, my thinking on hybrid closed loop. You know what I really think Benny is going to get out of it. So that's coming up in just a couple of days. So that's coming up in just a couple of days. Make sure you are subscribed to this podcast. If you're listening on a podcast app, hit subscribe and you will never miss an episode. Thanks as always, to my editor john Kenneth from audio editing solutions. Thank you all so much for listening. I'm Stacey Simms. I'll see you back here on Thursday when we're talking about control IQ Transcribed by https://otter.ai
Are you worried about sleepovers? Wondering how to plan? Stacey answers a listener question and explained what worked for her and Benny. Check out Stacey's new book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode Transcription Stacey Simms 0:00 This minisode of Diabetes Connections is brought to you by the World's Worst Diabetes Mom. Real life stories of parenting a child with Type One Diabetes. Available now as eBook paperback and audio book, Learn more at diabetes dash connections.com Announcer This is diabetes connections with Stacey Simms. Welcome to another of what I'm calling minisodes of diabetes connections. These are going to be shorter shows just me your host Stacey Simms, sharing some thoughts, advice and experience. As always keep in mind, everything I'm talking about here is through my personal experience as a parent of a child with Type One Diabetes. I am not a medical professional. I am the author of the world's worst diabetes mom. So please keep that in mind. As you listen. I'm going to be talking today about sleep overs and what worked for us and this was sparked by a message I got from Mike. We talked about Mike and his son Ryan, in one of our last Tell me something good segments of 2019. And Mike followed up and asked me, Ryan is I believe in third grade. And he was asking me about sleep overs for the future. So I thought this might be a really good time to talk about what we did and what worked with the backdrop of Benny, my son being diagnosed before he turned two and he is now 15. We give him a lot of independence. Just a couple of weeks ago, he went on an overnight with the wrestling team. They were two and a half hours away. We did not go through everything as I would have with a fine-tooth comb two years ago with the wrestling coach or the team mom, although everybody knows he has type one. I made a plan with Benny and he was fine. I don't expect anybody to start out that way. I mean, remember, it's been 13 years of type one for us. And I am I should say, a mom that really pushes independence toward my kids. My kids push back at me, both of my kids wanted to go away to sleepaway camp when they were little. So that's the backdrop that we're working on. But here's what we did. And here's what I think is important for anybody who wants to start sleep overs. First of all, you’ve got to be okay with sleep overs with or without diabetes. Some people don't like them at all and don't want their kids to do them. That's fine. As long as it's not because of diabetes. I don't think anybody should feel, you know, shamed or embarrassed or bad about that. That's a parent decision. And I've seen online where some people have said, well, it's part of growing up and don't ruin their fun. Look, if it's not your thing, it's not your thing. Don't do it. I'm actually not a big fan of them myself. I find them to be a giant pain to host at my house. And then I worry when they're not at my house and nobody sleeps. Look that some people love them. And if you're listening this far, you're probably thinking about doing it. Alright, so here's what I think you need to keep in mind. First of all, I think your kid should be able to check his own blood glucose and give insulin - with supervision, right? But a child who's going away for an overnight really needs to be able to poke a finger. Get a blood glucose reading. I don't care if your kid uses a CGM. This is something that every kid needs to be able to do if they're away from home, even for a night and give insulin using an insulin pump, or if on MDI, multiple daily injections, got to be able to do it. Otherwise, you're in a situation where you're really leaning on the host parents to go above and beyond and they probably have other kids to worry about that night. So in my personal feeling and experience, I just did not ever asked any other parent to handle Benny's pump or check his blood glucose. You may have a relationship with your friends where they do that. We did not. And there's nothing wrong with giving your kid a goal. You want to go on sleep overs. Hey, let's work on doing these things. If you don't have a CGM, it really is okay to let your kids go on sleep overs. We did not have a continuous glucose monitor. Until then he was nine years old. So we had seven years of no CGM. Is life better with it? Heck, yeah. Would I give it back? No, thank you. But my point is that you really can do this without a CGM without remote monitoring. And here's how we did that. Okay, so in the couple of years before Benny had the Dexcom, we would check in with him at dinner, and before bed, and I know this is gonna sound terrible. He didn't even have a cell phone. I feel like a stone age parent. But we would check in with the parents we would call the house or they would call me from their cell phone, or we would just text back and forth, I would check in with the parents. And we would say, What's blood glucose? What are you eating, blah, blah, blah, blah, blah, and make a plan. Same thing before bed and I use that loosely, we would set up a time with the parents, you know, when they were little, it was probably 10 o'clock. And I would check in what's going on with blood glucose, what's going on with food, and we would decide what the rest of the night would bring. Ask your doctor about this as well, because you might consider increasing the target range overnight. You know, it means some math with multiple daily injections. And it probably means just changing a pump setting or even a temporary pump setting if you use an insulin pump. Now before you yell at me, “I don't want to increase my child's target range, we keep it tight at 85.” Well, you might have a problem with sleep overs. If you want to keep your child within a super tight range. I don't think the first sleep over is the time to do that. I think you're setting yourself up for a lot of stress. And I think you're setting your child up for a lot of stress. In most insulin pumps, you have a target number, and then they do they try to do up and down you know within 20 points of that. So if your target number in your pump is 80, move it to 120 for the night. If your target range is 120 to 180 for the night for one night, talk to your endo before you do any of this, please tell them the crazy lady on the internet mentioned doing it. But all kidding aside, I really think moving that target range up helps everybody sleep better for one night. Now, what about that overnight? If you have remote monitoring, you might think well, that's easy. I'll just watch. I'll stay up and watch the numbers all night long. You can do that. Or you can kind of figure out in your head, When am I going to call, right? When am I going to really decide that I need to intervene. And again, this is personal. Certainly, for low blood sugars. You got to make a plan. And what we did even before CGM is I would always send low stuff now you gotta send it along. I never assume that somebody has it. Because even if their house is stocked and man, Benny has a friend and they keep a giant fridge of regular soda, all different flavors, like it's their thing, but it's all regular, it's all full of sugar in the garage. And you know, you might think, well, he's all set. But you know, your kid may not want to go out of the room in which they're all sleeping or spending the night to go by themselves to the kitchen and the fridge. It's a strange house. They don't want to wake people up. You know, a lot of kids get on comfortable, they want to be polite, they don't understand that the parents are there to help them, you know, so you don't want your kid running around somebody's house low. So I sent everything I want him to eat or drink. If you have particular snacks that you use when their kids low that you know work, send them along. And what we always did was send Benny with a Gatorade, one of those medium sized bottles, it's a lot more carbs than I'd give for a regular overnight low. I think a bottle has 30 or 35 carbs in it, where we usually give like 10 right, but it's easy. So our rule on sleepers is if you wake up and feel wonky, drink the Gatorade, drink it first drink at all, and then check. So when he was younger, he would drink first and then check by poking his finger. As he got a little older, he would check and look at the receiver. Now we can wake up and look at his phone these days. He really does look before he drinks most of the time. But if he feels low, I don't care what the CGM says, drink the Gatorade. And that has never been a problem. He's never woken up and been high and then had the Gatorade you know what I mean? He's never miscalculated. It's always been, I'm low, I'm drinking, I'm good. But what are you going to do about overnight lows, this is a time to sit down with your child or depending on age, make the plan, tell the child and tell the other parents, you know, if my child is below 80 for X amount of time, I'm going to call him or I'm going to call you and ask you to treat. If my child is below 60 for X amount of time, I'm going to call you, you know, things like that. I would make a plan in your head. Think about it, think about how you want to handle it, and then share it with the other parents. It's tough, right? Because it's that fine line of not wanting to scare people not wanting to have your child excluded in the future because it's too much work. But it's also a line of information. They need to know these things. When he was very little, I would send glucagon I would talk about it. I would train my very close friends, just two or three people that he regularly spent time with and I would train them on the glucagon. You know, it's funny, I stopped because I read a study that shows in the majority of cases, caregivers, even trained just messed it up. They didn't use it right, because they were under so much stress. So I always threw it in his bag. But I never trained anybody again, I would include icing, you know, and I had cut the tip off, because I was always afraid that he'd be low. And you know, they have that stupid cap, and then you open it in, you have to cut it or you’re biting it off. I didn't want that happening in the middle of the night. So I would always cut the tip off. And I would talk to them about that, rub a little icing on his guns. But I would also always say, look, it's been X amount of time and we've never had to use it. Right. It's been eight years it's been 10 years and knock wood, right? We've never had to use it. And I think that was reassuring as well. But when you have a sleep over, you never expect an emergency. But when I was a kid, I had a sleep over and my friend cut her leg on the edge of I think it was the edge of my trundle bed. It was metal. I mean, this was back in the 70s and she could have deep enough that we had to go to the hospital and we had a babysitter. My parents weren't even there that night and we had to go to the emergency room and she needed stitches. Crazy things happen on sleep overs. If you're going to have a sleep over, you're prepared to take care of the kid that's there, whether they cut their leg deep enough to need stitches, or choke on a piece of food or having intense low blood sugar. And that's how I usually phrase it because to us, that is how rare it is. That's the chances of it happening or that rare in your case, if you're if you've used glucagon several times, or your child does go low more often. These are things to think about as well and to talk about, and I'll tell you what, with the newer emergency glucagon kits that are out now with Baqsimi and Gvoke this is definitely a game changer. Baqsimi is the nasal spray Gvoke is the already mixed ready to use kind of like an EpiPen. I think you've got a much better chance of caregivers using that accurately. I would send that along for sure. And tell them how to use it especially if you can say hey, it's like an EpiPen. Everybody knows what an EpiPen is. And I think that gives people a lot of peace of mind. We also did test run Now if it's a new family, I really like to do this. We would have like a dinner, play date dinner hang out. And I don't know about you, I don't let my kids sleep at strange houses Anyway, you know, where I don't know the people. So this should be pretty easy. So if he gets an invitation, or you think he's getting to be good friends with somebody, and they're talking about future sleepovers, we always did this. So he'd go to that house for dinner. And he'd stay till when he's little like nine o'clock. And that was a good test run for sleep overs because they could eat, they could hang out, they could see what was going on. And I also made the parents promise to call me with any questions, any questions, no matter how dumb and I would tell them, Look, I'm only going to sleep tonight. If I know that you will call me if I think there's a chance that you won't call me with questions. I will not sleep. So do us all a favor and promise to call me and that usually worked and a little bit of humor. And you know, I don't know why that just reminded me but kind of speaking of humor, did anybody use the share cradle? So if you're not familiar, remote monitoring with Dexcom Share has only been around officially for about four, maybe four and a half years at this point. And I know it seems like it's been around forever, but it has not. And the first iteration of it was this Share cradle. So you would take the receiver, the Dexcom receiver, and you'd slip it into this. It was a cradle it was a little case. And I'll post a picture on it in the Facebook group and show you and you could get the signal then to your cell phone. It was amazing, but it wasn't portable. Well it wasn't supposed to be portable, but people plugged it into a battery pack and threw it in the backpack and took it with them wherever they went. And that was the first official Dexcom portable Share. I mean, not to mention night scout and all the things that that came through the Do It Yourself community. But we had that cradle, and I took it to one exactly one sleep over because it was such a pain in the ass to bring it to find a place where it would pick up the signal where there was Wi Fi. I don't remember what happened. There was a phone issue. And I promise you that night Benny was at a sleep over at Logan's house. And I was gone for 20 minutes. And my friend Karen called me and said, Benny, he says his Dexcom came out. I was like, You know what, spent half an hour sitting the damn thing up in your house. Forget it, just forget the whole thing. Don't worry about it. Tell me not to worry about it. And so I never actually used to the Share cradle at any sleep over. So fast forward to my 15 year old, who spends the night often at one person's house. Now he's got a really close friend. And that's really the only place where he's sleeping over. But he does do overnight trips with school, that sort of thing at the wrestling team, as I mentioned. So now, we just check in before bedtime, really around 10 o'clock, and I say “you good” and that “you good “means is your insulin pump charged? Is there insulin in the pump. Did you do your Tresiba? because he takes long acting along with the pump. And it also means do you have your Gatorade? Now, I know that sounds like a lot in the secret code, but we talk about it I sit down with Benny and I say, What do you need? How can we keep you safe and happy and me happy and not flipping out and not texting every 20 minutes. And that's what we came up with recently. 15 is a lot different than seven in many, many ways. So I wouldn't encourage you to start out that way if you're just starting sleep overs. But also keep in mind, it is hard to believe that in the next year, Tandem and Omni pod are going to be showing that kind of information that I mentioned like is the insulin pump charged it was their insulin in it, it's going to be shown on the remote app. And even though tandems phone app isn't launching with any kind of share remote monitoring feature, my understanding is that you can log into the T Connect account and you can see what's up. So we'll be testing that out in the weeks after we get control IQ. I think the bottom line with sleep overs is they are a fun way to start your kid thinking about independence. They are truly not the time to worry about a super tight blood sugar range. There's going to be weird food, there's going to be weird activity. The idea here is to not let diabetes truly get in the way. Is it there? Yes. Is it going to be very difficult the first couple times, of course, but you can make a plan. You can talk to your kid, you can talk to the other parents and you can find ways to make it fun and make it doable for everybody. One more thing before I let you go, do not misunderstand my attitude. I worry. Every single time that kid goes on an overnight. I worried when he was young. I worry now, I know I'm going to worry when he's older. But the idea here is Look, you're gonna worry you're a parent, but let them do it. You can't let your fear stop your child. Agree? Disagree? Keep in mind I am the World's Worst Diabetes Mom. I would love to hear from you. What do you thinking of these minisodes? Do you have any questions you have any topics you'd like me to address? You can drop them in the Facebook group at diabetes connections the group or ping me Stacey at diabetes dash connections calm and remember the world's worst diabetes mom is available on Amazon in Kindle paperback and audiobook. Find out more at the website, our regular full length episodes here every Tuesday. I'm Stacey Simms, and until then, be kind to yourself.
Aerospace engineer April Blackwell works at NASA’s Mission Control. She dreamed of being an astronaut but her type 1 diabetes diagnosis at age 11 changed everything. Since that day, though, she has found ways to break down barriers and pursue her love of space. Check out Stacey's new book: The World's Worst Diabetes Mom! April calls herself a "rule-questioner" and shares where asking those questions got her. She and Stacey talk about everything from family – she has two young children – to what it’s like to work as part of history in the space program. Join the Diabetes Connections Facebook Group! In Tell Me Something Good, a milestone for a tween with T1D – and her whole family gets in on the celebration. Sign up for our newsletter here This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode transcription (Note: this is a rough transcription of the show. Please excuse spelling/grammar/punctuation errors) Stacey Simms 0:01 Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes. By Real Good Foods real food you feel good about eating, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. This week, aerospace engineer April Blackwell works at NASA's mission control. She always wanted to be an astronaut, but she was diagnosed with type one at age 11. And that changed everything. But since that day, she's found ways to break down barriers and pursue her love of space. April shares where asking those questions got her and we talked about everything from family - she has two young children - to what it's like to work as a part of history in the space program in Tell me something good a milestone for a tween with type one, and the whole family gets in on the celebration. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your healthcare provider. Stacey Simms 1:32 Welcome to our first full show of 2020 Happy New Year everybody. Hope your year is off to a great start if you're new to diabetes connections, welcome. I'm your host Stacey Simms. We aim to educate and inspire about type one diabetes by sharing stories of connection. My son was diagnosed 13 years ago, just before he turned two. He's now a freshman in high school. He's 15 years old. My husband has type two diabetes I don't have diabetes, but I have a background in broadcasting and local radio and TV news. And that is how you get the podcast. As you have heard, if you are a longtime listener, some new things this year, we have some new sponsors. I dropped a minisode, a short episode last week. We're going to be doing those every week. So you get the full episode, which is something like this where it's an interview and we have some segments and then you'll have that minisode and planning for every week right now. We'll see how it goes. Which is a much shorter episode just me on one topic. And please follow along on social media because we're doing more new stuff this year. On the Tell me something good segment which has become really popular in the show. We're putting that out on social media every week, making sure you're following on Instagram. I am Stacey Simms on Instagram, there's only the one account on Facebook, Diabetes Connections the Group, although I do post everything on our page, but you know how Facebook is sometimes they are just obnoxious and don't show you everything you want to see. Something else I'm trying in the new year is transcription. I am putting in the show transcription of every episode. On the episode homepage. You can go to diabetes dash connections dot come, and you scroll down. Make sure you look at the current episode, click on that. And in the show notes will be the transcription of the interview and hopefully the whole episode as well. as well. Something new we're trying we'll see how people like it will see how you respond if it's popular and people use it will keep doing it. I have had a lot of requests for the transcripts over the four and a half years of the show and as Technology is better and better. It's been a lot easier to get that done. Done. Maybe I'll do it behind the scenes minisode One of these days and tell you about all the changes that we've gone through and some of the technology as podcasting really grows, how things have changed, but I know you're here to talk about April and NASA and how she got involved in the space program. It's such a great story. My talk with April Blackwell in just a moment, but first Diabetes Connections is brought to you by One Drop. One Drop is diabetes management for the 21st century. One Drop was designed by people with diabetes. For people with diabetes. One Drops glucose meter looks nothing like a medical device. It is sleek, compact, is sleek, compact and seamlessly integrates with the award winning One Drop mobile app, sync all your other health apps to One Drop to keep track of the big picture and easily see health trends and with a One Drops of script You get unlimited test strips and lancets delivered right to your door. Every One Drop plan also includes access to your own certified diabetes coach. If you have questions you don't feel like waiting for your next doctor visit. Your personal coach is always there to help. I am so excited to have One Drop on board. Their program is amazing. Check them out, go to diabetes dash connections calm and click on the One Drop logo to learn more. My guest this week is not someone who takes the answer No, and accepts it and goes away quietly. April Blackwell grew up dreaming of the space program. As you'll hear, she watched out for NASA news. Like most of us watched Saturday morning cartoons when we were kids. But a diagnosis of T1D in sixth grade grounded her astronaut dreams. But how did you decide to carry on anyway? You know what did you have to do? To get where she is at mission control. her blog name and her Skype handle are nerdy April, and you'll hear me ask about that. But I gotta tell you, when you talk to someone on Skype, which is how I do a lot of these interviews, the the avatar, the logo, whatever you want to call it, of their name, or their face is on the screen. So the whole time I was talking to her, it said nerdy April on the screen, which really made me smile, all right here, which really made me smile on the screen, which really just made me smile, and I did have to ask her about it. Her story, though, is it's a story of grit, of asking questions and refusing to give up. Here's my conversation with mission controls. April Blackwell. Stacey Simms 0:03 April, thanks for joining me. I'm sure you're really busy. And I appreciate you taking the time to talk to us. How are you? April Blackwell I'm doing wonderful. How are you? Stacey Simms I'm great. And I'm excited to be talking to you. I have lots and lots of questions. But I have to start with, with your name online and on Skype as we're talking nerdy April. Did you reclaim that nerdy title? April Blackwell 0:27 Oh, I am a I'm a proud nerd. I think all nerds who are truly nerds are proud of it. So it actually started though, because the my blog title started as Nerdy April's Space Adventures. And if you take that as an acronym, like, you know, everything NASA related, it spells out NASA so it kind of was a little bit of a play on words and acronyms there, but it kind of turned into just Nerdy April and that's how I've been rolling lately. Stacey Simms 0:59 Okay, So I want to ask you at the blog, I want to ask you about NASA, but let's start at the beginning. You knew that you wanted to be involved in science and in space from a very early age, right? April Blackwell 1:13 Yeah, I was only about five or six years old. I was in a kindergarten and my dad actually, he is an aircraft mechanic. And so there's a little connection there. But he also is just a deep lover of the space program. And he grew up in the Apollo days, sort of that romanticized moon landings and everything and he was just an amateur but it and his love for the space program just really captured me. And so that's kind of where that all was inspired from. Stacey Simms 1:45 What were you doing, though, at age five? I mean, when you were with your dad, looking at stars were you watching launches? April Blackwell 1:52 We weren't watching launches. I grew up in Arizona, so it's pretty far away. Florida, where most of the launches happened. Well, Stacey Simms 1:58 (laughs) I was thinking about on TV. April Blackwell 2:00 Yeah, yeah, I definitely watch some on TV we did have a very rudimentary telescope. So we would go out and mostly look at the moon since that was it a big target we could watch. It didn't have a tracker or anything on it. So it was all manual. And it required some fine tuning by dad before I could look through it. We built model rockets together and launched those later on. I went to sort of local science camp during the summer, and started getting excited about computers and everything that had to do with science. So robots and engineering type problem solving. And so it just stayed with me my whole life. Stacey Simms 2:45 Wow. So when you were diagnosed, not too many years later, you were 11. What happened? were you hoping to actually be an astronaut at that time? April Blackwell 2:55 Yeah, so I i think that was always the pointy end of the spear for was to be an astronaut. And, you know, that's when you watch TV and everything those, those are the people that you see. And so that was always kind of my final goal. When I was diagnosed at 11, it took a little bit of time for me to realize that, you know, astronaut was going to be more difficult now that I had type one diabetes. And some of that sort of came into focus later in my life. But at 11 it was kind of just heartbreaking. You know, I was watching launches and getting excited about space, but then knowing that that probably would never be a reality for me. Stacey Simms 3:41 So at age 11, you know, I guess you have many choices, but you can say to yourself, well, that's that I've got to find something else and be devastated or too bad. Or I'm going to move forward and do this some way somehow. Did that decision happened for you? immediately. Did it take some time for you to continue to love science the way you did? April Blackwell 4:01 It definitely took some time. And I guess I'll just touch on the fact that I think being diagnosed with diabetes at 11. Well, in the first place, there's no great time to be diagnosed with diabetes. But I think being diagnosed at 11, it sort of puts you on this really fast trajectory towards adulthood. Because you want to maintain your independence as much as you can. My parents implemented it, such that I had to be able to give myself shots and test my own blood sugar before I could spend the night at a friend's house, for instance. And so that was a big motivator for me. And I think, you know, maybe I always had a little bit of an inclination towards being a little older than what my physical age was. You can ask my mom I used to wake up early on Saturday mornings, to watch the news, not cartoons, just in the hopes that I might see you know, some information about NASA. But I think, you know, sort of that catalysts of putting me on a trajectory towards adulthood helped steer sort of my ideas about what I wanted to be in the future. And while I knew I could never be, or probably could never be an astronaut, space was so exciting to me and talking about rockets talking about, you know, low Earth orbit and traveling 17,500 miles an hour, five miles per second, thinking about these huge engines that need to take astronauts and supplies up to space, I just couldn't get it out of my blood out of my brain. And so I decided that even if I couldn't be an astronaut, I would love to work in the space program in some capacity. And that sort of led me to looking at an aerospace engineering degree. Stacey Simms 5:54 All right, let's go back for a second about your parents in the transition at age 11. What was your diagnosis story like, were you very sick for very long? I mean, I know we kind of sometimes we talk about it like and then you you didn't have diabetes and then you did and then life went on. Can you kind of fill us in on on how you found out? April Blackwell 6:13 Yeah. So it was, I guess nothing extremely remarkable about it, but maybe that's why I should tell it is because, you know, there is this sort of the normal warning signs that everyone comes up or comes up against. And so it was kind of in the Christmas time frame, December timeframe. I just got a cold. And then, you know, my grandparents were in town for the holidays, and we usually would stay up late playing cards, and you know, eating Christmas candy, and I just, I couldn't I just physically couldn't I was extremely fatigued. And then when I started getting up multiple times during the night to go to the bathroom, you know, my mom bless her heart, thought that I was probably suffering from a urinary tract infection. And her old wives tales, of course, told her that we needed to treat this with the cranberries. Unknown Speaker 7:14 Of course, April Blackwell 7:15 yeah, so. So we hit up the cranberry juice pretty hard for a little while, and it just wasn't getting better. And so we started going to the pediatricians office. And it took almost a week of daily pediatrician visits. I, I joke to that I could just pee on command, because every time I would show up there, they would tell me to, you know, get a urine sample. So it sort of became this joke. And then I was finally diagnosed on December 30. And they told us that we needed to head over to the children's hospital right away straight from the pediatrician’s office. We had no idea what diabetes was about at all. I absolutely had zero idea. I don't think my parents really understood it at all. They were just scared. And so we had we went over to the Children's Hospital, but unfortunately it was a sort of a skeleton crew because it was the holidays and New Year's and stuff. So they told us to just go home. And it turned out that my old pediatrician, he actually lived next door to us. And so he came over for a couple days to help give me some insulin shots and test my blood sugar. While we still had no idea what you know, was to come more shots every single day and blood sugar tests every single day. So it was definitely a steep learning curve as I think most diagnosis stories are. Stacey Simms 8:41 Yeah, it can just take so much time to get the diagnosis. I get so frustrated by that. But you know, at least they got it before it was even more devastating. Fast forward a few more years, you have kept your interest in space as you said, What did you wind up studying in college or did you go you know what, where did your path lead you to continue after high school. Right back to April answering that question in just a moment, but first, diabetes connections. is brought to you by real good foods. Have you tried them yet? high protein, low carb, grain free, gluten free. They have so many delicious products from breakfast sandwiches to pizza. The stuffed chicken is delicious, the little poppers that they make are just excellent. You know, it's really nice to have something convenient when you're not in the mood to cook or if you're a 15 year old boy, you know you're starving and you need something to get you between the half an hour before dinner. So Ben evil just get a little personal pizzas and heated up. We're really big fans of really good foods. I'm thrilled to have them back on the podcast for the new year. The new year and I'm excited to try some of the new products they have out right now. And I'm excited to try some of the new products they have out right now. We will be bringing you some taste tests as we go forward. But find out more and go to their store but find out more, go to diabetes dash connections dot com and click on the real good foods logo. now back to April talking about what happened after high school. Let's go now back to April and I'm asking her about what happened after high school How did she get to where she is now April Blackwell 9:01 Yeah, so I was very fortunate to get a full ride scholarship in state in Arizona, and because of my grades, so I went to Arizona State University and studied aerospace engineering. And then once I got out, I kind of hit a little bit of a roadblock because there was a period of time in the aerospace industry that the space shuttle was looking at being retired. And so the the future of NASA was a little bit unclear as to what was going to happen. So a lot of companies and related industry sort of put put a hold on hiring right around that time. Which was unfortunate but it turned out to be a blessing in disguise because I ended up getting a job working with the army of all things in Huntsville, Alabama. So I moved across the country. Free to work in a triple wide trailer we like to call it in Huntsville, Alabama, which just sounds so glamorous. Unknown Speaker 10:10 Oh yeah, the stars all end up there. April Blackwell 10:14 But it turned out to be a really great experience. So Stacey Simms 10:17 did I also see somewhere where you were testing helicopters? April Blackwell 10:22 Yeah. So that's what I was doing for the army. And it was really awesome. It wasn't it wasn't quite space. But it was a really great way to get my feet wet on just what it means to be an engineer and what kind of engineering I personally like because there's so many different avenues you can go with that degree. So I got to fly on experimental helicopters and boss test pilots around which was really fun. The group I was in actually was really tight knit and it I'd say even more so than my group at NASA Now. And part of that, I think is because, you know, you had to fill out paperwork that said, who in your group would go tell your spouse or your significant other that there had been an accident. And so we really counted on each other to to watch out for each other. And all of them absolutely supported me with my diabetes. You know, my flight suit had specific pockets with snacks and blood testers and stuff. And so we always kind of joked, like, oh, if you need a snack, April always has one in her left lower leg pocket or whatever. Stacey Simms 11:42 Let me just jump in and ask. So when I said you were flying helicopters, I was gonna ask you how the heck did you get clearance to do that as a person with diabetes, but it was as a passenger? April Blackwell 11:53 Correct. Yeah. So I flew on them not actually physically flying them, but it did still require FAA medical clearance which took about six, six months to get all of the paperwork in and get clearance to finally fly on the helicopter. Stacey Simms 12:10 so that's what I wanted to ask you about. Can you talk a little bit about doing this because it's it sounds so exciting and I know so many young people who want to serve in the military or want to fly and Yep, we've just got, you know, the, in the United States, FAA says now you can be a commercial pilot with type one. So progress there. But right, what do you need to do, you know, as we're going to talk about your path going forward, to kind of accomplish what you've done. You've mentioned medical screenings, things like that. You there's just a lot is there a lot of paperwork and exams? I April Blackwell 12:44 Yes, I will tell you it's a little bit of a black box. Even now with the FAA ‘s new guidance. That type ones can apply for these waivers for class two and class one medicals. It's not clear to me how many type ones they've actually accepted into those medical clearance buckets. That data is never published. And, in fact, the process to get a medical for me, like I said, took about six months. And it was really me going to an FAA Doctor who said, Hey, I can't clear you because you have type one diabetes, I can check you for all the other stuff, but that's going to require some special paperwork. So he sent in his recommendation, of course, I had to get letters and agency readings from my endocrinologist. Initially, the paperwork I started with about a year's worth of data. I sent that in and it took about three back and forth between me and basically a blackbox doctor in Washington DC at the FAA to finally get the amount of paperwork they wanted. And to be honest, I just got frustrated with The process and so I called my mom and dad back in Arizona, and I said, Hey, can you just run down to the Children's Hospital and literally make copies of every single piece of paperwork that they have, since my diagnosis? Back then it was all paper, not, you know, digital, it was literally copies of these pieces of paper, you know, probably a three inch thick, you know, stack of papers, and I literally sent that into the FAA and I said, this is all the data that I have from my diagnosis, you know, X number of years ago, and I have nothing else to give you, basically, and they finally said, Okay, okay, that's that's enough. And they granted me clearance for one year. But it was it was a frustrating process and I haven't tried to get another one. You know, since moving to Houston because I do all of my medical clearance now through the NASA doctor so I can talk with them directly. There's an actual face to face, but the FAA doctors are a little bit of an enigma I guess. Stacey Simms 15:06 So I guess the lesson there if a parent is listening or if an adult with type one is listening is be persistent. April Blackwell 15:13 Yes. If it's something that you really want, you know, you're going to find a way to overcome it and do it. And I just, I just always say, never give up and be a rule questioner because there are a lot of rules that are based on old data and old diabetes technology and management techniques. So it's worth asking the question, because a lot of these doctors especially, you know, if you think military doctors and FAA doctors, they deal with really, almost perfect human specimens, if you will. And so they're just, they just don't have the knowledge of you know, what is going on in the diabetes sphere these days? Stacey Simms 15:54 What an interesting thought, Yeah, why would they know because everybody is like GI Joe walking in. Unknown Speaker 16:00 Yeah, exactly. Stacey Simms 16:02 That's a really interesting thought. Okay, so you're, you're, you're in these experimental helicopters, you're following your career. You're in a triple wide in Huntsville. How’d you get to Mission Control? April Blackwell 16:16 Yeah, it's a great question. Um, I will say just before I leave the helicopters for a minute there in Huntsville, you know, I had this opportunity to sort of push a lot of barriers that type one diabetics came up with against because the military doesn't allow type ones, you know, that were previously diagnosed at least right now. And so I got to go through the altitude chamber, the helicopter dunker trainer, which is basically two days of being drowned alive. And I went through the parachute course. And all of these required talking with doctors and just explaining the situation to them because they literally don't deal with type 1 diabetic patients, because that's a disqualification right off the bat. And all of them were super receptive, super open to it. My military friends supported me going and talking to them and coming up with plans. So you know, we would come up with a plan, like we're going to leave your pump on till we get to this pressure, and then we're going to take it off and leave it outside of the altitude chamber, you know, and that's going to be 15 minutes. So make sure your blood sugar is at least 130 at that time, or whatever it is, you know, but it was a really great way to sort of break down those barriers. And I even included a two week course at the Naval Test Pilot School, in Pax river, Maryland. So that was a really kind of culmination of all these, you know, sort of barriers that I had overcome and a way to, you know, sort of solidify that I was on the right path. Stacey Simms 17:54 That's fantastic. Wow. And that's great to have that support from the people around you. I love to hear that. April Blackwell 18:00 Yeah, they were really great. Stacey Simms 18:02 You get, you get dunked, that sounds so enjoyable. I mean, I know you and I, it sounds like we have very similar personalities and enjoy a lot of the same activities (laughs) April Blackwell 18:11 Bananas. Unknown Speaker 18:14 Tell me about what led you then to your position at NASA? April Blackwell 18:17 Yeah. So from my my helicopter job, I was doing a lot of traveling around two weeks every month I was gone. And for a newly married person, it was just a little bit hard on the family so started looking for, you know, some other opportunities and found these jobs pop up in Mission Control. And I had absolutely no inkling that I would even get called to interview for them. But it turned into, you know, this flight test experience that I had, working on the helicopter as well. Well, it sounds completely different, actually was a lot of the same skill set that they look for in flight control. rollers. And so that sort of, you know, allowed that door to be open to get an interview at NASA. And of course, I ended up falling in love with it. I mean, it was job working at the home of manned spaceflight and now crude spaceflight with women, you know, joining in and getting to work in such a historic building like Mission Control. And you know, I'm even going there tonight I'm working this evening, that evening surf to fly the International Space Station. So it's, it's just really a dream come true. YOUAREHERE Stacey Simms 19:33 Okay. I have chills as you're talking about controlling the International Space Station. The the setup, I just want to take a moment because I think we all do know what Mission Control and flight control you know, what it looks like and what you do, but and correct me if I'm wrong here, but what we're talking about is what we see in all those movies. Right. When you know when they say Houston, we have a problem your Houston I mean, you were that big room, right? Yes. The diagram was all the guys in the white short sleeve t shirts and the glasses from the movies that we've seen all these years. That's Mission Control. April Blackwell 20:07 Exactly a skinny tie and a pocket protector. We don't smoke anymore and missing control. Yeah, but if you get in the elevator it's in, it's in the same building so that the room for instance, if you've seen the movie, Apollo 13, the room that that movie was based on is actually just one floor up from our current International Space Station control room. And so when you get in the elevators, I always joke it's sort of this aroma of like 1960s cigarettes and coffee mixed together. But that's just the way missing control smells and it's, it's hard to describe. Stacey Simms 20:47 Alright, so when you're going to work tonight, and you know, controlling the International Space Station, tell us what that really means. I mean, do you mind breaking it down a little bit? What are you going to be doing? I mean, in Yeah, I understand. April Blackwell 21:00 Absolutely. It's not that hard. So basically, you know, we sit at a big console that has several computers, we monitor a lot of telemetry data coming down from the space station all the time. And it uses a satellite constellation to make sure that we can get our data even when they're on the other side of the world. So we look at that data, we make decisions based on that data. If we see any anomalies, we may send commands up to the vehicle. And then on certain days or nights, you know, there may be a big event like a docking or undocking, maybe a spacewalk. And on those days, you know, it's our job is even a little bit more critical because we'll be sending lots of commands and making sure that the space station is performing. Its absolute best to make sure we don't have any anomalies where maybe there's another vehicle really close by, so Stacey Simms 22:00 Have you ever had an experience that was kind of frightening is the right word, but you know, where, where someone or or a mission was in jeopardy. April Blackwell 22:13 Um, I've had a few kind of small anomalies happen. I haven't been on console for anything very major. But that doesn't mean that major things haven't happened. This was, you know, hasn't lined up with my console shifts. But it's interesting because even when when stuff happens when you aren't on console, you sort of have this adrenaline because you know what that person sitting in the seat is feeling, you know, the whole lead up to being a flight controller. It's not like you're hired and the next day here on console, we call it almost a second master's degree. So you have about two years of training. About a year, a little over a year of that is sort of bookwork so you're learning a lot of information about that. The system we control, and you're taking oral examinations. And then the next piece of it is simulation. So we actually simulate, you know, really bad days, days that are worse than any any days, we've actually seen real time. And this is all to prepare you for that prioritization skill of being a flight controller and being able to work through stress. stressful situation. So we always joke that, you know, one small anomaly in the real room feels like 5050 anomalies, you know, in the simulation room, and that's just how we have to train ourselves to be able to cope with that stress. Wow. Stacey Simms 23:44 What is the best part of it for you? Is it walking into that building? Is it knowing that you know that elevator is there and you're part of all that history? Is it just you know, logging in for the day I'm curious what you know what gets you still very excited about this? Because obviously You are? April Blackwell 24:02 Yeah, so I'd say there's kind of two pieces of it, there's sort of a physical, almost just, you know, like chemical response, when you cross the threshold into Mission Control, you know, you have to swipe your badge like five times, you know, to get in the building, and then get in the room and all this stuff. So when you cross that threshold, it really is like, you're just leaving all your other problems and everything else that you've thought about that day, outside, because you need to focus. And you need to bring your best self, you know, in here, because there are literally at least six humans on board that are counting on you to take care of them and take care of their spaceship. And then as you sit down, we have what we call big boards and the friends so they're like these big projection screens and we're always getting video down from the space station, usually in about six channels. And we call it the windowless room with the best view because the view is just incredible. I mean We now have these HD cameras on board. And as you're flying my favorite place to fly over the sort of the Mediterranean Sea, and just the colors juxtapose there with like the desert sand and Africa, it's, it's just incredible. And without actually being an astronaut, I feel like it's close to being the next best thing. And then the second part is sort of what you were talking about the history, you know, in this in that very building just one floor up is where the controller sat when we landed on the moon. And they worked through problems real time, you know, to tell the astronauts what to do. And these were people that had computers with much less computing power than our iPhones today. And they were very young. If you look at any of the documentaries and everything, these were like 20 something kids fresh out of college, you know, space, there wasn't as much history then. So it's hard to you know, lead your whole life thinking you're going to be working in space. It's like something you just thrust upon you basically. And they were able to overcome all of that and be able to land man on the moon. It just, it still blows my mind today, even when I walk in that building. Wow, Stacey Simms 26:17 that's amazing. So does Type One Diabetes on your job? Do you mind telling us a little bit about your routine? Because there's some very long shifts, lots of pressure, you know, you can't exactly take a lot of breaks, I would assume. Can you talk a little bit about how you manage it? April Blackwell 26:32 Yeah. Um, so I mentioned before that we're constantly monitoring telemetry from the space station. And as type one diabetics, we're kind of used to that already. Actually, we constantly monitor telemetry coming from our own bodies. I use a CGM. So I set that in a prominent place. And it is just become part of my scan pattern. I scan all of the data that I'm looking at Looking for anomalies. And then I also glanced over at my CGM, and just make sure that I'm trending the way I want to be trending. And generally on console, I'll keep my blood sugar a little bit higher. So try to avoid going below about 120 or so just because I know if at any moment something could hit, basically. And so, you know, I don't want to have that rush of adrenaline drop me really low. So I try to keep it a little bit higher. I always have snacks in the control room, we're allowed to eat, you know, as you mentioned, they are long Fest, so you usually have a meal that you eat while you're there. And then all of the flight directors also know that I have type one, that's not a requirement or anything, but I think as a member of their team, it's important that they know that's something that I'm also monitoring and so it may require that I you know, step out for a quick two minutes to go grab a snack or, you know, do a little Check or change the site even I've had to do that at work. And so I think just being really candid and open and and, you know, open to answering any questions that they have is really important in sort of these high stress jobs like this. Stacey Simms 28:19 And a while back, I interviewed Ernie Prato, who also works at NASA and also lives with type one. And I know you know each other. Unknown Speaker 28:27 I don't, this is gonna sound so weird. So I just kind of a mom question. So I'm sorry for asking it. But like, do you guys see each other at work? Do you check in with each other? I mean, I know not everybody with type one. Diabetes has to be friends. But the mom and me is kind of hoping that you support each other. April Blackwell 28:44 Yeah, so it's funny that you mentioned Ernie because we sort of have this unofficial Johnson Space Center Type One Diabetes club and Ernie actually sits in Completely different building off site. He sits over at the airport now. So I don't see him daily, but we have sort of instant messaging capability and so will frequently talk on there. And we have another friend who actually works in the search and rescue area. So he's doing a lot of cool things with the military in order to get our astronauts safely home after they land. And so it's really fun we all meet and you know, you think we would like talk about space and stuff because that's what we do. But we always end up just talking about our diabetes and what devices were using which ones are you know, giving us trouble which ones were low on supplies for, if anyone's tried to like, you know, come up with engineer way to make something work better or whatever. So it's really fun to sort of have that outlet and especially at work with kind of like minded people. Unknown Speaker 30:01 I'm glad I asked Stacey Simms 30:05 what do you think would be next for you? Do you have other goals within what you're doing now? I mean, what you're doing now is so exciting. And I would assume you would want to do this forever. But are there other things that you would like to accomplish that you're working on? April Blackwell 30:18 Oh, that's a loaded question. There's so many things. Right now, I think my focus is just to you know, be the best engineer I can at work. And then I also have two little kids. So I Unknown Speaker 30:33 yes, I want April Blackwell 30:35 a three and a half and a one and a half year old. So they are taking a lot of my energy right now. And I think that's totally fine. That's, that's the season I'm in and so I want to be able to enjoy that. And so I think as far as my career goes, and everything, I definitely still have that astronaut dream out there. And I think there are opening up some new ways To be able to make that happen, and if not for me, then definitely the next generation of diabetics or maybe, you know, if we come up with a cure, then the non diabetics. But I'm really excited to see where that goes. And then I, I think, also just kind of spreading this message that you know, even if you perceive that there's a something that could hold you back as a type one diabetic, make sure that you are asking questions because it may not always be a hard know, and you sort of need to figure out what it is that is really keeping you from doing those things. Stacey Simms 31:36 I don't want to get too personal, but I know a lot of listeners will be interested. You know, when you have type one. There are a lot of concerns about having children. I mean, less so today, but you have to do so much work, it seems to me, you know, was it? Gosh, you seem like such a disciplined person anyway. And again, I don't want to pry but healthy pregnancies you did okay. You said you had a CGM. Do you mind sharing a little bit about that? Yeah, April Blackwell 32:01 um, so I actually don't get this question very often, I think because everyone's so focused on the NASA and space scope, but I'm really happy to share it because I think it is important. It's not something that a lot of women talk about. So, yes, I had two kids, three and a half and a one and a half, one and a half year old now. The first was a girl and everything went really, really well. I was induced, and that was sort of just my ob was being a little cautious with having diabetes and making sure I didn't go too long. And so I was induced, which turned into like a 40 plus hour labor, which was unfortunate. But everything turned out just fine. And she has a lot of attitude now. So something worked there. My son, so he's just about 18 months now, a little bit different flavor of pregnancy. As weird as that sounds. He had a lot of fluid around him while I was pregnant. So I gained a lot more weight. And I was just generally uncomfortable because I felt like my stomach was literally just gonna like burst open, it was so, so stretched out. And he ended up being a C section baby and he was over nine pounds. And that was again early induced about 38 weeks, so to completely different pregnancies. I had good control through both and you know, all of the non stress tested all of that when we're going well, and it just turned into a little bit of a different labor situation with my son so but I have two awesome Healthy Kids now and they do take a lot of my energy It's interesting because you know, my daughter being three and a half, she understands I have these sort of extra devices hooked to me. Console, she, she knows the word diabetes, she knows the word pump, she knows that sometimes I eat her applesauce pouch when I'm low and we're at the playground. Because that has happened before. Sure. And my son is still you know, he's just, he isn't quite to the point of communicating those feelings yet. So he'll touch my site, and I'll tell him No, you know, but it's just interesting seeing how they react to it. And I think in a way it will hopefully make them more empathetic to you know, friends or people in the future that they come across and this is just a normal part of life. And you know, everyone has something they're dealing with, I think, you know, Type One Diabetes happens to be mine, but everyone has something and so keeping an open mind and judging people based on devices or things that they see right off the bat I think is really important. Stacey Simms 35:07 Do you mind if I ask what devices you use? But pumping CGM? April Blackwell 35:11 Sure I use the tandem. x to polymer and sex sex. com g sex ctm. So I get that data right on the pump, which was really nice. Yeah, I like both of them's though. I'm a big fan. Before Stacey Simms 35:30 I let you go, you know, this is kind of a tough question for you to answer. But your mom and dad, you were 11 when you were diagnosed, you shared this love of space and science with your father. Your you have an incredible career. You have two children, they must have been worried during the pregnancy. You know, have you had a conversation with them about Wow, did you ever think after that diagnosis where I would be today? April Blackwell 35:55 Oh man, we've had a lot of conversation about this. Yeah, it's it's very cyclical. I think for us, you know, when I was growing up, I would definitely have months where I was not literally diabetes high, but just high on life and really excited and full of energy. And then I definitely had points where I was really low and upset that I had diabetes. You know, the one person that I knew that really wanted to be an astronaut, and literally couldn't because of this disease, you know, somehow I was chosen to have this disease, of course. So I went through all those emotions and those feelings and my parents were always there. They always supported my dream. And they really stressed to me the importance of working hard. And I will tell you, engineering is hard work. And it is hard to get through engineering school, even if you're really passionate about it. And so that support was priceless. I know my mom, you know, see Susan emotional person. And I think she was sometimes afraid that I wouldn't be able to sort of realize some of these dreams. And it's so great. Now, you know, I'm in my early 30s and I have my dream job. And I send her picture hers, you know, for Mission Control probably every week, just because I think it's really cool. And, you know, seeing her and the being able to decipher that, hey, like, we made it together. It's not it's not just me. I mean, they did so much to help me and my poor Mom, you know, she's, she's not the most most into space, but she like dragged herself to those space museums that me and my dad wanted to go to Oh, man. Sometimes she would be doing her crocheting over in the corner. So bless her heart. She was such a trooper. through all of that, but I think it's really important now to, for her to see, you know, these moments in my life. And now she gets to share those with other people that she meets that, you know, maybe they've just had a diagnosis like this, or they know someone going through an issue that's, you know, putting up some barriers and she can say like, hey, look like we got through it. It's totally doable. I think that's the key, it's doable, and it's going to be tough. But if you want something, you need to just go for it, and it'll absolutely work out. So we've just sort of on and off had those conversations, you know, let's see, I've had diabetes for 20 years now. So the last 20 years, I would say there's been conversations like that throughout the whole time. Wow. Stacey Simms 38:48 Well, that that's great. I'm so glad that you've had this conversation with your parents, you know, as a as a mom have a son who is figuring out what he wants to do, you know, and we don't want diabetes to hold him back. Don't mind saying I find your story incredibly inspirational. So April, thank you so much for joining me. And, you know, I'll be following you on Instagram and elsewhere and looking for those pictures of Mission Control and everything. Thanks for joining me April Blackwell 39:13 absolutely anytime. Stacey Simms so much more about April at diabetes dash connections come and I'm going to talk about her had a really emotional reaction to something. I'll share that in just a moment but first… Diabetes Connections is brought to you by Dexcom. And you know when you have a toddler diagnosed with type one like we did, you hear rumblings for a long time about the team years, but when it hit us at full force a little early, I was so glad we had Dexcom early. I was so glad we had Dexcom Benny's insulin needs started going way up around age 11. And frankly, they continue to go up and told, I think they started topping out about age 14 really just late last year. And you know, those hormones, swings, everything we had to do all the adjustments we've made. I cannot imagine managing diabetes during this crazy time. Without the Dexcom continuous glucose monitoring system. We can react more quickly to highs and lows, see trends adjust insulin doses with advice from our endo. I know using the Dexcom g six has really helped improve Benny's A1C and overall health. If your glucose alerts and readings from the G6 do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions. To learn more just go to diabetes dash connections calm and click on the Dexcom logo before I move on from April Blackwell, in her terrific story, I just want to share one more thing. So when I, when I talked to all the guests, I always grab pictures of them, right? You see that on social media, when we put the episodes out or at the episode homepage, there's usually a picture of a product or the person or you know, the crux of what we're talking about. And often they email me photos, but sometimes I scroll through just to kind of see which one I'd want. Then I can say, Hey, can I grab that one picture or whatever. So I was doing that with April. And I came across, and I'll see if I can get her permission to share this in the Facebook group. She has a picture of herself dressed as an astronaut. And that picture is from about and that picture is from, you know, she was diagnosed, she was diagnosed at the end of December. So it's Halloween. I mean, it's just really a couple of weeks before she was diagnosed and seeing her as a little girl, knowing what she wanted to do, and knowing where she is now. And just I guess I could have been sad about it because I got very emotional. And I guess the reaction could have been, oh, it's too bad that you didn't get to be that astronaut but my reaction Was this? I mean, I really got emotional, it's kind of embarrassing. Was this, this swell of admiration, I'm not sure I'd be that strong, whether I was 11 years old or, you know, an adult, to be able to turn that situation into what she has been able to do with it. You know, and as she mentioned with Ernie Prado, who also works at NASA, and you don't have to be a you know, an aerospace engineer, to just kind of overcome what type one throws at you. And I think that's what happened when I saw that photo. I just thought, gosh, you're all of you.. All of you just have to be strong. You know, even if you don't feel strong, you kind of have to be you kind of have to be and yes, parents too, but it's a different kind of strong for us, right. That's a that's a different story altogether. So I'll see if April will let me post the photo and I wonder if you'll have the same reaction that I did. Foot boy What a great story and I can't wait to follow along with her. It's nerdy April I'll link it up in the show notes on her Instagram account on her Instagram account all right time for Tell me something good brought to you by our friends at real good foods. And this one is real good foods. And I know it's a podcast and I shouldn't be saying things like you got to see the picture. But you got to see the picture. And I will post it in the Facebook group. I will be posting it later this week on Instagram as we start posting the Tell me something good stuff. But Amanda lovely. posted a photo of her kids celebrating what they call their last Lantus party. And she says the reason they were having a party, Annika, who is her daughter with type one is 10. It burns right Lantus burns a lot of people if you're not familiar, this is a long acting insulin. This is a commonly used long acting insulin. And Amanda said that Anika isn't a fan. This was a big moment. The picture shows as they're having their last Lantus party, Anika with two of her siblings in party hats. party hats, so it's Nina and chi and they are hugging her and everybody looks like they're having a It looks like a birthday party. I mean, it's really cute. And apparently Malin, who is five but not in the photo was also wearing a party hat. party hat and the dog was as well but not pictured Amanda, you got to send us a picture of the dog. But they were really excited and supporting their sister, which is why this is the Tell me something good. Not so much about the pump start although I'm sure she appreciated that and that's fun too. But, too, but it's always just so nice to see a family kind of get behind each other, right? I mean, gotta have that kind of support. And I will say that if Lantus burns, you or your child know that there are long acting alternatives, not just switching to an insulin pump. And by the way, Amanda make sure you save some of that long acting just in case you have pump issues, right? You know, you never want to have no long acting on hand, just in case talk to your endo. But if you're having an issue with Lantus, ask about switching, there are other long acting's out there that don't burn as much and that work differently, but that's definitely an endo level decision. Do you have a Tell me something good story. It can be anything from a diversity a milestone of a last Lantus party. We have lots of fun stuff to share. And I love telling your good stories. You can always email me Stacey at diabetes dash connections. com or post in the Facebook group message me, you know, send a carrier pigeon, whatever works for you. We will be sharing these pretty far and wide this year. And I'd love to hear your story. With the time shifting nature of podcasting, as I've mentioned before, you know, sometimes and recording before things are happening that I want to talk about, and then they'll the show airs afterwards. And all of that to say, a lot of you've been following along with Benny, who has been on crutches for six weeks. And as I am taping this, he is hopefully getting the word in the next couple of days that he can be off crutches, and maybe start some physical therapy. So next week, I hope to tell you a little bit more about that. And we're also going to the endo, which is a really good time for me to interview Benny because we're alone in the car and we're in the same space for once because that kid is so busy, I don't even see him half the time. But I'm going to try to talk to him about control IQ in the last year and lots of things changes he's made. Control IQ and things that have gone on since we've last talked we've made some other changes. And you know, he's just a different kid than he was even a year ago which is kind of breaking my heart and kind of fantastic but Boy, it's been it's been a big year for him. I don't know about you. But when my kids went from middle school to high school, it wasn't it wasn't just a different school. It was like a different life. High School is very different. The schedule is different. The work is different. And I remember with my daughter, who is now a freshman in college, and as you're listening is going back to school next week to do her second semester there. It just flies by it goes by so quickly. So I'm trying to hang on for dear life. And hopefully Benny will will talk to me talk to you, and we'll get him on the show as well. Tons of events coming up. I'm not even going to run down the list. I will ask you though, to go to the community page at diabetes dash connections calm. You can see where we've been where we're going. I've got a kind of a de facto book tour, because I am the world's worst diabetes mom, which is taking me on the road right now but two events a month. You can see them on the community page and see if I'm coming to your town. And if not, and you'd like me to come speak or tape a podcast or whatever. Just let me know. Just let me know. Next week, just let me know. Alright, later this week we have our second minisode. This one's going to be all about sleep overs. What worked for us, I had some questions about that. And I'm answering them. So we're gonna be talking about sleep overs. That episode will air on Thursday, January 9, and then our next regular interview episode will be next Tuesday. Thank you, Tuesday. It's gonna take me a little time to fall into the rhythm of this, but I think it's gonna be a lot of fun. Let me know what you think. As always, the show is here for you. Thanks, as always, to my editor, John Bukenas from audio editing solutions, and thank you so much for listening. I'm Stacey Simms, and I'll see you back here on Thursday. Transcribed by otter.ai
Do you share your CGM graphs and A1Cs online? Why? Stacey talks about the trend of sharing everything on social media and wonders if what she learned in her radio career might help us all make sense of when and how to better share. Check out Stacey's new book: The World's Worst Diabetes Mom! In 2020 we're adding these mini-episodes to the weekly line up. Each Tuesday you'll hear the regular longer format interview shows. Thursdays will be these Stacey-solo shows. Join the Diabetes Connections Facebook Group! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Show transcript (rough copy so please excuse spelling, grammar, punctuation) Stacey Simms 0:00 This episode of diabetes Connections is brought to you by the World's Worst Diabetes Mom: Real Life Stories of Parenting a Child With Type One Diabetes, available as a paperback eBook and audiobook. Learn more at diabetes dash connections.com This is Diabetes Connections with Stacey Simms. Stacey Simms Welcome to something new on diabetes connections. I'm your host, Stacey Simms. And this is a mini sode, a very short mini episode. I'm going to be doing these in the new year. Just me sharing some thoughts, advice and experience. Please keep in mind, everything I'm talking about here is only through my personal experience as a parent of a child with Type One Diabetes. I am not a medical professional. And I am the author of the world's worst diabetes mom. So keep that in mind as well. One of the questions I get All the time is why don't I share Benny's numbers? Why don't I share my son's A1Cs? Why don't I post more graphs? I do occasionally show some CGM action, you know when I'm trying to prove a point or talk about stuff. But why don't I do that more regularly and especially the A1C numbers? Well, I really did share them for a long time. Benny, he was diagnosed right before he turned two and social media wasn't as big a thing in 2006 when he was diagnosed, but a couple years later, it was and I shared them on Twitter and Facebook until he was about seven, I'd say. And then I became friends with Moira McCarthy, who is a very well known author, blogger. She helps me out on diabetes connections as my co host of the Ask the D mom episodes, and she asked me to think about why I was doing that. And it really did did took me back. I took a step back on that. And after I thought about it for a while, I did stop sharing them. And here's what really helped me. It's one way of looking at it. That might sound funny. Radio really helped me make more sense of how I felt about diabetes numbers. If you're not familiar, I worked in radio for a very long time I started my career while I was in college, at a radio station. I worked at WSYR, I was the weekend reporter in Syracuse, New York for the old news station there. And then after college, I was a local TV anchor and reporter for many years, moved to Charlotte, North Carolina, where I live now in that capacity. I work for the CBS affiliate as a TV reporter and anchor for a couple of years. But I went back to radio for a decade and I did mornings at WBT, one of these big heritage radio stations. So my old Program Director, Bill White, used to caution us against putting too much stock into the ratings. You know, you get these Nielsen ratings, at least you used to in radio, and I want to say you got them every quarter. And these were the ratings that would give us I mean, not just bragging rights, which was a lot of fun to say, you know, we're number one in the market or you know, we're number two or whatever. It was, but they would also set the commercial rates, right how much the sales people could charge for a commercial at any given time on the radio station. Now, it changed a lot in the time that I was in radio, because the ratings systems switched from Nielsen ratings, which were you were writing down what you listen to, I don't know if you ever had one of these Nielsen books, but that's what it was, you would get a physical book. Remember those pen paper like a workbook, and you should write down what you listen to. That's why so many radio stations repeat their call letters a billion times, or at least they did back then. Because they wanted you to remember the call letters when you got your little Nielsen book. So if you're listen to radio station, they're always like news, weather, traffic, you're listening to news talk 1110 WBT, you know, why did we say it a million times an hour, we needed it to stick in your head so you would write it down. But then, really just a couple of years before I left radio, the portable people meter, the ppm system took over and changed everything. So ppm, if you're not familiar, is a system that was developed, I want to say by Arbitron, but now part of Nielsen. So it's like a pager almost, and you wear it. And it detects hidden audio tones, I kid you not within the audio stream, so it logs every time it finds a signal. So a ppm basically picks up when you're listening. And when it came through, there was a lot of talk about is it accurate? Is it biased to younger people who are going to walk around with this thing as opposed to older listeners who can't be bothered, you know, will it pick up stuff in gas station stores that play music or restaurants you know, blah, blah, blah, doesn't matter that ship has sailed. The ppm is now how radio stations get their ratings and it changed everything which is a story for a different time. But I will say if your your local fun morning show is talking less than playing music more, or you're hearing some changes, really you would have heard these almost 10 years ago now and the way you listen to radio Do it was because of ppm and you know now it's debatable whether radio podcasts streaming, that's a whole other story. But so ppm for us really changed the numbers. Our radio station WBT never really sold on those numbers strictly though, because we had a very desirable audience. We had an older audience, our audience had more money, they were more loyal. They were really apt to buy what we were selling. So we did not have to live and die by the ratings, thankfully, and that is what Bill warned us against my program director. If we got so caught up and excited about the really, really good ratings, would we be devastated by the bad, right where we doing a good show where we serving our listeners, my co host, used to say, super serving our listeners, you know, where we doing all we could for our clients, you know, we were doing all this at 5am where we're doing everything we could do, and that's what we were supposed to focus on. Bill's point was Don't let the numbers run your life. Life and a new station. This is really important. Think about when you might listen to your local news station, you might listen when there's a power failure and you need that radio, you might listen when there's a huge news story, you might just listen occasionally. I mean, in the olden days, you'd listen for school closings before the internet. So we'd get these, these spikes that were very attributable to events, right. And then we would get these lows, that maybe were also attributable to events. But if you got emotionally caught up and thought, oh, all these people are listening, because I'm so great. Then you could also get emotionally messed up when you're thinking they're all tuning out because of me. So you can't put the numbers before what you're supposed to be accomplishing. As a news broadcaster. We were there to inform, to entertain a bit sure, but to inform. And I think Bill's advice is really applicable to diabetes. Look, of course, numbers are important. Of course, we need to pay attention to them, but We can't run our lives around them, we can't let them have the emotional power that many seem to want to give them. I mean, I've been guilty of this too. But you have to step back and recognize they are information, they are guidelines, they are not your value. If your self worth is coming from your child's or your A1C, I'd really encourage you as Moira did to me years ago, step back and think about that, think about why. And then I would encourage you to try to move that good feeling off of those numbers and onto other ways that you're dealing with diabetes. I mean, for very young children. I mean, that can be such a roller coaster. The victories for me, were the smiles with grandparents, you know, bedtime snuggles, milestones like potty training, you know, even when your your little kid learns to share, right? These are all ways of celebrating and as your kids get older, participating in sports or in the school play, getting their drugs permit Ben he just got his somebody come hold my hand. Oh my god. But these are things to celebrate first date, right? Oh my gosh, these are ways to celebrate with diabetes that aren't about the numbers. Just thinking back right? What stands out if you have older kids, or if you're an adult with type one, what stands out for you? Do you remember that excellent doctor's appointment? Or do you remember feeling really good and doing something that you loved? Because you have to be in range have to be taken care of yourself to be feeling good at these times is all is my point. But you're not focusing on the actual number right? If you're calling your endo appointment, mommy's report card, I am talking to you. Because what happens is, so many people share only the so called good numbers, right? But they don't want to share the so called bad ones. Because if you have publicly celebrated, let's just say a 6.5 A1C you may feel really bad about 7.8 or higher? I mean, let's be real here. And something else to keep in mind. And maybe the most important thing is that for parents, you're making these choices for your kids. You're putting their health information online, you're putting it out there adults, this is different for you. I mean, these are your choices. But parents, you're making a decision for your kids and you're really not getting their okay. And I don't think a seven year old can really decide if it's okay, right. Remember, if you're in a private Facebook group, nothing online is private, nothing you're sharing online once you hit send, or put it out there. Nothing online is private. And that's really the biggest reason why I stopped sharing Benny's A1C. I decided there was no reason for me to leave a breadcrumb trail of health information on the internet for someone and employer and insurer, anybody to find when he was an adult, I don't care how good his numbers have been. And trust me they're far from perfect. Sometimes they're No need to share that. One more thing. There is a school of thought that you don't even need to tell younger children what their A1C is. And I wish I had done that. I mean, I don't really think Benny ever knew until he was out of elementary school. But a lot of endocrinologists are now writing it down and showing the parents if you're in the room together, or maybe emailing it to you later through a health portal, which is protected by HIPAA in a way that Facebook obviously is not. And I think that's great, because you can easily find ways to celebrate or mark time with your kids or, you know, hey, we're at the endo and that's always a reason why we do. We go to a movie, we go shopping, we do a special high five, whatever works for you. But you're not celebrating the number per se. And back to Benny for a moment. Here's how I know he didn't know what his A1C was when he was little. He had a nurse asked him once he was a camp so he was in a not normal setting. And the kids were eating ice cream and I don't know why the nurse was involved. Maybe they were doing it at the health center. Who knows But he asked for his ice cream. And she said, Oh, I don't know. Should you be eating this? What's your A1C? He was about eight, maybe nine. And he said, I don't know. He turned around and found another nurse and said, Can I have the ice cream? She was like, yeah, sure, Benny, no problem. And, you know, he told me that story when he came home from Camp, but I was kind of glad he didn't know. And I was really glad that he was smart enough to find somebody to give him the darn ice cream. I am not trying to be a killjoy here. You know, we all have what works for us. But I urge you try this. You may find it incredibly freeing not to share your numbers not to share your child's numbers. Come on, you are all so much more than the A1C or the last 24 hours on a graph. Right? You're not raising a number. You're raising a child. I hope this gives you something to think about. Agree. disagree. Remember, I am the World's Worst Diabetes mom. And the book is available on Amazon paperback eBook and audio book and it's available at diabetes dash connections. com where you can always find out more. I hope you come back for our regular full length episodes. Every Tuesday, we feature interviews with newsmakers, athletes, artists, celebrities, authors, speakers, and everyday people, quote unquote just living with Type One Diabetes. I’ve been doing the podcast for four and a half years now, and I really hope you find episodes that you love. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself. Benny 12:34 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All rounds avenged Transcribed by Otter.ai
Tandem's Control-IQ system was approved by the US FDA in mid-December. In this episode, Stacey talks to Molly McElwey Malloy, Tandem's clinical outcomes manager with behavioral sciences. Check out Stacey's new book: The World's Worst Diabetes Mom! Control-IQ technology is an advanced hybrid closed-loop system that uses an algorithm to automatically adjust insulin in response to predicted glucose levels to help increase time in the American Diabetes Association-recommended target range (70-180 mg/dL).* Check out Tandem's YouTube channel, featuring new videos about Control IQ Join the Diabetes Connections Facebook Group! This is our last episode of 2019! Stay tuned for new sponsors, new segments and new weekly mini-episodes. Sign up for our newsletter here To use Control-IQ, you must have the Tandem t:slim x2 insulin pump and you must have the Dexcom G6 CGM. The Control IQ software is as simple as a download from your computer to the pump.. it does not require a purchase of new hardware.. no new pump needed. You do need to have a prescription from you doctor. If you are an in-warranty customer the Control IQ update s free. All software updates released through 2020 are free to in-warranty t:slim X2 users. It doesn’t matter when you choose to download the update. The no-cost is determined by our release date, not your download date. ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android Episode transcription (Note: this is a rough transcription of the show. Please excuse spelling/grammar/punctuation errors) (Time codes listed refer to times within the interview, which starts 5:30 into the episode) Transcript: This episode of Diabetes Connections is brought to you by the World's Worst Diabetes Mom. Real life stories of parenting a child with Type One Diabetes, available now as eBook paperback and audio book, Learn more at diabetes dash connections.com Welcome to our last episode of 2019 and it's a big one all about Control IQ the new hybrid closed loop system from Tandem recently approved by the FDA. I'm talking with Molly McElwee Malloy from Tandem. And I'm going to try to keep this intro short. I know you all just want the information. But I do have a few housekeeping and other things to get to. You can always skip ahead if you wish, I will not be insulted. But first while my regular podcast listeners insulted first when things like this happen when there is a Big news in the community. We get a lot of new listeners. So I want to go through some basics first. Hi, I'm your host, I'm Stacey Simms. My son was diagnosed 13 years ago, right before he turned two. He is now freshman in high school. He is 15. And boy, time has really flown. My husband lives with type two diabetes, I don't have diabetes. I have a background in broadcasting, local radio and TV news. And that is how you get the podcast. We are four and a half years into this podcast. We have more than 260 episodes. So I would encourage you to head on over to diabetes dash connections. com If you're brand new, scroll through. There's a very robust search feature. So if you want to type in Tandem and see what we've done over the years leading up to this release, or any other topic pertinent to diabetes, you can go ahead and do that it's very easy to search through. It's very easy to search through, and everything you'd want to know about the podcast, including how to subscribe for free on whatever app you want to use. Joining the Facebook group all about me, it's all there on the website. Okay, let's talk about Control IQ. What is it? Control IQ technology is an advanced hybrid closed loop system. It is the software within the pump. It uses an algorithm to automatically adjust insulin in response to predicted glucose levels. So we're going to talk about that to help increase time in range. Time in range and the recommended target range is 70 to 180. And yes for the International listeners we have quite a few. This is a USA centric episode Control IQ is rolling out in the US. We will be staying up to date on when it is available in the rest of the world where Tandem is already in your marketplace. But this is a USA centric episode so when you hear us talking about numbers, that's the system that we're using. For Control IQ you must have the Tandem t slim x2 insulin pump and you must have the Dexcom G6 CGM. The Control IQ software is as simple as a download from your computer to the pump. It does not require a purchase of new hardware, no new pump is needed. You do need to have a prescription from your doctor and you will hear more about that if you are an warranty customer, the Control IQ update will be free. All software updates released through the end of 2020 are free to in warranty t slim X to users. It doesn't matter when you choose to download the update. The no cost is determined by Tandems release date, not your download date as we're right at the beginning of 2020. That probably doesn't matter to most of you listening but I think it's important to point out. Control IQ is FDA approved for those 14 and up. It is not a replacement for diabetes management. And it is not a cure. It is not a cure. There is so much information about this online already from Tandem. I will be linking up a lot of stuff on the episode web page. They have YouTube videos. There's so many features that we don't even get to in this interview. I mean, the tubing fill, you can now set that to vibrate so it doesn't beep when you fill the tubing and change the cartridge which I know Benny just so excited about but in this interview, we really just scratched the surface. So please know I will be doing follow ups and there's a lot of supplemental information on the website. Quick note about Molly McElwee Malloy, who I'm talking to from Tandem, she was diagnosed 22 years ago this week as a young adult. And as you will hear, being in an artificial pancreas trial, changed her life. It changed her career path, everything. And she is one of many, many people who has been with this project for a very long time. We do spend the first four minutes of this interview on that subject on who Molly is and getting to this point. And if you're dying to get Control IQ info, again, go ahead and skip ahead. But I think her story is an important part of all of this and I think it sets up all the information very well. One more thing. There will be a full transcription available for this interview. A lot of you have been asking for that. That's a new feature I'm making available for the podcast in 2020. So stay tuned on that for every episode, but this transcript will be right on that episode web page. The best way to read it go to diabetes dash connections. com scroll down and click on this interview to open it up. All right here is my interview with Tandems, Molly McElwee Malloy, Stacey Simms 0:01 Molly, thank you so much for joining me. I can only imagine how busy you are and how full your inbox is. Molly McElwee Malloy 0:08 It's a really exciting time. For sure. Absolutely. No doubt. Stacey Simms 0:15 Well, congratulations. We're very excited. I mean, personally and professionally. I can't wait to talk to you about this. So let's just jump right in. I do have to ask you though, for people who may not be familiar, tell me a little bit about your background because Boy, you have been with this project. Really, I want to say almost since day one, tell me about your involvement with what has led to Control IQ for Tandem. Molly McElwee Malloy 0:39 So I'm, I'm sort of what you would call like the obsessed fan who went rogue. So I, I was in an artificial pancreas prior in 2006. And full disclosure, because no surprise to anybody who knows me but I have a bit of OCD. And for me, that was manifesting is testing my blood sugar 30 times a day. Wow. And yeah, it was really out of Control. Or as most, you know, endocrinologist say, I was a perfect patient with zero Mental Health Quality, but life like it definitely was impacting my quality of life. But I participated in one of these trials. And it was, you know four IVs and somebody at your bedside for 32 hours and the whole nine yards, but for me, it was life changing that for a period of time, I could relax for the first time and just let somebody else take Control. And everything was fine. And I sort of just realized that deep breath at that time was exactly what I needed. And I and I was like, Well, I'm going to do whatever it takes to work on this project. So you know, at the time, I was a professional musician, which makes getting into science.. Stacey Simms 2:05 Be vert interesting, Molly McElwee Malloy 2:06 Just a super, super easy transition (laughs). As logical obviously, as you've spent your life, being a musician that makes sense to just go into science. So I went back to school for nursing and continued to participate in trials through nursing school. And then when I graduated they hired me on at the Center for diabetes technology at the University of Virginia, which is where all of this magic was taking place. And I have not looked back. So they hired me in 2010 have been acquainted with the algorithms since 2006 as a patient, and here we are, it's almost 2020 it's 2019. And it's finally getting to market so I've done that and I worked with a startup called Type Zero technologies, which commercialized The algorithm licensed it the Tandem diabetes care. And then I jumped over to Tandem to pursue commercializing the algorithm. So, a little bit of like a dog with a bone, go and fill it out. But it was sort of my glimpse at sanity. Like, this is what sanity, this is what my life could look like with diabetes. If something was managing it in the background, I was really only worried about the big things. And I saw that and I was like, that is exactly what I will do. That's what I'm gonna be doing. I will do this all the time until it gets there. And it is. It's been a very long journey. very rewarding journey. Very difficult journey, but to be here today, wearing the device is magical. Stacey Simms 3:54 Okay, I'm gonna stop you there. I could talk to you for a long time about the process. But as you listen, I know you want to get to Control IQ. So I will just say, I've talked to Molly a couple of times before and I will link up the other episodes because the background on this, as you mentioned, type zero, you know how Tandem came to have that software, the development of all this, it's really important. And it's really interesting to listen to. So I will link those episodes up. But let's talk about Control IQ, so many questions. What are the what are the first steps? What's going on right now. Molly McElwee Malloy 4:27 So because of this all happening right around holidays, what we're doing with him doing kind of behind the scenes and, you know, as we speak up through the beginning, or first two weeks of January is we're educating the whole you know, diabetes educator and endo workforce, getting everybody up to date, getting everybody ready, making sure we're on the same page. So that when you go to your endocrinologist and say I want this you know that customer, they are well informed of what's going on. So all of that's been going on in the scenes like, you know, just earlier today I was on the phone with 10 different doctors trying to make sure that we all understood everything. So we're, we're educating as fast and as seriously as we can. We have an excellent online training program. So you as a customer, if you are current X2 user base, like you are just x to the end user will get an email, and I believe it's the first the second week of January way of January 13. That week, you'll get an email saying, hey, go ahead and login, update your information, make sure everything correct when you get the prescription will, you know will we talk to your doctor and will help you if you're an existing customer with we have that information kind of fully loaded, ready to go. You could also log into the portal, the customer portal and you know, go ahead and start that process. I'm interested, I want this and talk to your doctor. That's all that's one place. It is super easy scripts with your doctor that gets loaded. It's an automatic process. Once we have that, if you've already got that, like a blanket prescription from your providers practice is already going with us and we're trying to initiate that next two weeks. That's already there, we will automatically check on the background and then it will, you know, provide us with going ahead and giving you the green light to issue the next email which will be your training is ready. And then you will do the online training. And it will give you the ability to learn all about Control IQ. It's very interactive, you can't hit play and walk off. I know people do this on other training like I know we have webinars and we push play and we walk off we do the dishes when we come back. You cannot do that with this. It actually won’t advance to the next part until you've done x, y, z that is asked you to do. We've designed that for a reason so that you actually come away with the knowledge you need to operate the the algorithm and integrated into your life. So then you will answer a couple of questions and take a quiz. And you will have had to pay attention to get this information correct. And if you don't, you can go back and re learn until you do answer the questions correctly. Once you do pass the quiz and the module, you will then get the download code which is specific to your serial number of your pump. So I know there's been some questions, people sharing about work arounds, can you share it? The answer is no, no. You can't share it. It is your learning and your code is specific to your serial number. So all of that lines up perfectly to allow you to download the software update. And that will be, you know, everything will walk, walk through all the steps and pretty obvious, but for those who think that this some idea that someone will get a code and then we could post it on the internet somewhere and share it like, sorry Debbie Downer you're gonna have to get this on your own. Like, we work smarter than that and the FDA is smarter than that, and they're not gonna allow one code to rule them all. Yeah, so everybody's gonna have to do this upon their own and because it requires a prescription you have to go through all this stuff. Stacey Simms 8:37 When you mentioned training healthcare providers, and this might be a really dumb question, Molly, so forgive me, but is do they go through a more in depth training? It just seems like a couple of weeks to try to get all of these endocrinologists and CDs on board is a tall task. Do they all have to be trained before they can write the prescriptions and then what is their training like Molly McElwee Malloy 8:59 this have to be trained before they can write the prescriptions we want them to be trained before, obviously, we'd like them to have knowledge before they write the prescription, but they don't, they need the training to be able to treat patients, right. And I want them to be we want them all to be informed before they write the prescription to know if this is a good choice for the patient. But you could always write the prescription and then the person doesn't do the update. Right. So there's, you know, there's, there's always a couple ways to be kept it at the end if they don't intend to write the prescription. But writing the prescription with knowledge is always excellent. And we want to be aware, it's really, you know, an hour and a half two hours of their time. It's not a whole day thing. I know with other systems, there's been some feedback about like the links of training being really long and and we took all that into consideration. You know, we got the beautiful gift of not having to go first. Right? So we got to see what happens with the market with feedback before we did it. And we implemented a training and the good news with Control IQ is, it's not difficult. You do have to understand some concepts and some differences. Right, but it's not hard. Stacey Simms 10:27 I guess my concern was that people would be calling their health care providers and saying, Are you trained? Are you trained? Did you do this yet? Because you could see that happening. Molly McElwee Malloy 10:35 Yeah, and the good news is that we're getting them trained. So and it's on there's an online module they can take to do this. Like it doesn't have to be me on the phone with somebody train them, although we are doing that for them for larger offices that need, you know, to have that interaction, but there is an online module that they can take to get trained. So we do have a provider but site that has been launched. We've been very patient centric and very patient forward and our website and our outreach, and we are adding new dimension to both Tandem and our website, and how we are looking at our business. So, you know, to be honest, when you do this business, there's, there's at least three customers you're looking at, right? There's a patient, there's the provider, and there's the payer, and all those things need to be addressed. And we've been very patient centric. And now we are and we are continuing that we're just expanding to be very have people that are actually focused on providers. And so there is a portion of our website now dedicated to health care providers, and their education and resources specific to them. So that is launched that is up and running, and it's actually a very elegant website a host of resources for healthcare provider. Stacey Simms 12:10 Alright, so let's get to the moment at hand - Control IQ. How does it work? Talk to me a little bit about you know, the pump settings or what do we have to do you? What is the? What is the basis of Control iQ? Molly McElwee Malloy 12:24 Yeah, so this is the beautiful thing and I love all things that are based in science reality and truth, right? Like, I don't like we and Tandem doesn’t like this either, but we don't like you know, don't let trick and we don't like you not be able to see what's going on. So the beautiful thing about Control like you would like about all of Tandem technology is that it stays in the science and the foundation that you know in love, which are pump settings that you already understand. So the traditional rules that healthcare providers have used and I can provide you a link to article that’s helpful on you know 15 and 1800 you know, rules that they've always used and you know, implement duration action that is built in on the foundation of many many many decades of science. So, the all of that I can provide you some links and educate people about that what does that mean but your traditional insulin to carb ratio, sensitivity factors and basal rates all still apply. We use that the Control IQ technology uses your pump foundations and your foundations order the basal rate into the carb ratio, correction factor to operate from right so those are specific to you, they always have them they always should be. And that is where we you know, we start the game of Control IQ technology. So Using those settings, Control IQ technology, what we making adjustments from your baseline parameter, so your baseline parameters are exceptionally informative of how Control it technology will work. Stacey Simms 14:12 So we've been using a pump, let's say, you know, our personal case for 12 and a half years, we're pretty good at the settings. You know, we're going to talk about insulin on board because that's an interesting change. But we have our ratios and our, you know, our sensitivity factor. People like us, you know, a lot of people who are used to changing things on their own, you're basically saying we're not gonna have to learn to use the pump that we know so well. Molly McElwee Malloy 14:38 Correct. Right. So all the settings that you know and love are great. And you will move forward with those right? Okay, people coming from other systems, like maybe different pump or multiple daily injections, things like that. You're going to want to establish some really good baseline settings and make sure that those are accurate. So you particularly, if you're coming, I could say you're coming from a competitor's product like that, that has automated insulin delivery, you want to make sure that those settings are good to go. Because the previous, you know, previous other things that you may have used, only altered on board and carb ratio, right. So if you're only pulling two levers, the other things may not be totally, you know, set in stone and based and in the reality that you need. So, moving forward, you will need to make sure that the patient has, you know, your patient which would be your son or myself, that user has the pump parameters and settings that are based in in what you would want to use. So somebody is moving from a different product. We just want to do a double check and there's going to be in the healthcare profession. We'll have a little checklist to go through and we'll ask them, you know, you're coming from a different product, please look at the baseline settings and make sure that they are perfect for the patient. In your situation, you're just going to be moving from you know, base like you to Control like you. And those settings will apply. I will say a note for your super super savvy listeners who have used Basal IQ. And something we've noticed just in real world data as we've looked at people who data people have up to their basal rate to allow for, you know, like you to go to be like suspend, resume, suspend, resume and kind of hug that line at 80. A lot of people have done that. And I want to talk to that community real quick and say, Look, I know what you did with Basal IQ with riding those basal rates high to hug that line at 80. I saw that we saw that. You did that. We know why you did that. Just look at them. One more time before Control IQ because Control IQ is going to be adding, right? It can add insulin. So just before you go on your merry way with Control IQ like you double check your baseline settings, are they where you want them to be before you go right knowing that a system can add insulin to it. Stacey Simms 17:20 Okay, so you mentioned a lot of people, a lot of my listeners like to ride that 80. Molly McElwee Malloy 17:27 Let's talk about people, man, a lot of people love that they want like, they want that super, super tight Control and I get it. I totally get it. But you got particular, you know, space of listeners needs to be open to the idea that we're now going to be adding insulin right? So if you've kind of made these aggressive pump settings with Basal IQ and now you're going to be just on your merry way. We don't want you to experience hypoglycemia, right? That, you know, we don't want to put anybody into hypoglycemia land. My personal least favorite experience of, of diabetes? Well, let's, let's not do that. Stacey Simms 18:10 Right. But the question then is, what are the targets? I thought Control IQ wasn't really going to let you ride that 80. Can you talk a little bit about I mean, obviously, nothing's perfect hypoglycemia can happen hyperglycemia can happen, but what is it aiming for? Molly McElwee Malloy 18:29 If your listeners can pull up the little chart, the patient pamphlets that I that I gave you, there's one of them that has a really good visual of what that looks like. And just so that we can go from soup to nuts, the person who has now downloaded Control IQ technology, all you have to do is turn it on. It’s either on or off. Just to preface all of this before we get into target and all of that. There's no kick out with Control IQ technology. Control IQ technology works, so long as we have CGM. And I will say that as long as we have a continuous stream of CGM, or we will continue processing that data. But if there are 20 minutes or more of missing data from that CGM and those who are very savvy with Dexcom know that you can kind of get internet readings occasionally. I'm not talking about reading, you've got a loss of CGM for more than 20 minutes, we're going to revert to your pump settings. And so we can get that until we can get that information back up and running. But if we miss a value or two when we come back, and we've got that information, we're running full steam ahead We're good to go. If we have any data point in that 20 minutes that pops up, you're still in. It are still in the game. They're still playing. But there's no kick out. Right? Stacey Simms 20:14 So as you mentioned that, just to be clear, there's no auto mode or manual mode to kick out of. So if you lose the CGM signal for that period of time, as you said, What did you say 20 minutes. Molly McElwee Malloy 20:26 It has to be greater than 20 minutes Stacey Simms 20:28 if you lose CGM signal for 20 minutes, it just goes back to regular Tandem pump, all the settings are in it. When the signal comes back, it automatically starts Control IQ, you don't have to do anything else. Molly McElwee Malloy 20:40 Correct. You could sleep through the whole process, right? You do you right. Like if we lose it, we'll we'll get it back as soon as possible. We're going to alert you that there’s no CGM available, right? Right. We're gonna alert you that this happening. But if you're sleeping or you're doing something else and you are not paying attention to it, we’re going to keep running with the ball in that process without having to like all these bells and whistles, and there's no modes, right? Control IQ is on or you can turn Control IQ off. There's no mode. Stacey Simms 21:16 Alright, so let's talk targets. Molly McElwee Malloy 21:19 Yes. So there are several targets, the one you will call the main target is the number 112.5 which in the pump, it's going to default to 110. Why because you don't have 112 point fie as an option. 112.5 for those who are interested is a weighted average between 80-120 with the least amount of hypoglycemic outcome. So if you're a statistician or mathematician and you love numbers you can a bunch of scenarios of hypoglycemia and when it will likely going to happen in all these different situations which is what did happen to come up with this number you would come up that 112.5 had the least amount of hypoglycemic outcomes in the greatest amount of time in range and you know successful euglycemia. Yeah, so 12.5 it is. And it will show up as 110 in the settings 110 will be the target. In the settings that you set up for Control IQ it is non-negotiable. We have different ranges for things that we're using throughout the way the system progresses, but as far as looks on the settings on the pump, is going to show up as 110. Now when you enter the system, as long as you're in euglycemia land, like as long as you're in range and predicting range, which would be predicting 70 to 180, we’ll use your pump, right your pump study should be adequate. But the minute your predicted to be outside of the range. And this is where this graphic is really helpful. If you’re predicted to be 70, right, less than 70, we're going to start decreasing basal insulin. It's predicted when you start going below 112.5 right. And then when you get to 70, we're going to stop basal delivery. And this is during this time, right? So the during regular Controller to you, if you are predicted to be less than 70, you start going down less than 112.5 we're going to decrease basal, and we'll eventually halt basal. Now if you're above 112 point five and you're heading up, and you're predicted to be above 160, we're going to increase that insulin delivery and increase that in the background until you hit a prediction of 180 and that's not you hitting 180. That's the prediction heading 180. If the prediction hits 180 then we can give an automatic correction bolus once an hour during waking time and I'll go over more about what that means in a minute. But predictions to be above 180 one at if there was, you know, not been another bolus in the last hour, we can give one at that point to try to keep blood sugar more in range. So the range 70-180 again, 112.5 is euglycemia. Going below that, you know, we start decreasing if you're predicting below the lower than 70 we're going to, you know, stop basal insulin delivery, you’re predicted to be above 160, we're going to be increasing basal insulin delivery of your predicted to be above 180. We're going to deliver an automatic correction bolus once an hour during the waking time. And by that I mean when you're not using exercise or sleep. There's three activities in Control IQ and they are Control IQ or what I call wake time. There's sleep and there's exercise. And those three things have three different targets. Because if you think about it, those three activities have very different applications for your blood glucose. So, waking time 70 to 180. That's sort of where we aim for all things during the day to accommodate for blood glucose fluctuations with meals and stress and schedules and everything like that. Sleep is something you program. So you can have just like you would program a basal rate. So if your basal rate normally changed from three to 4pm, every day… the sleep is, you can program that right. So mine is programmed for 10pm to 6am. So from 10pm to 6am I'm sleeping and it will automatically go into sleep, it will automatically come out of sleep. I don't have to do anything. And during sleep, we're going to target 112.5 to 120 which is a much tighter range, but we're not giving automatic correction boluses during sleep, Stacey Simms 26:02 can you tell me a little bit about the thinking there? It seems obvious. But is it just because a person is sleeping and can’t adjust the pump? I'm trying to figure out the logic? Molly McElwee Malloy 26:14 The logic of not having the autocorrection? So the logic around not having the autocorrection overnight is about being super conservative with the FDA and their comfort level . But also, the algorithm really drives a really tight range during that time because there's not a lot of interference, right? You think about sleep it's like for blood glucose is the easiest time to manage diabetes, right? because nothing's happening. Although you are asleep, so technically difficult because the operator is asleep, right but as far as what's happening with diabetes, sleep should be a pretty steady state. So if we can automate going into and out of and having a really timeframes for that period of time, then we can kind of optimize time in range by, you know, six hours a day being really tightly Controlled, or however long the sleep activity is. And we noticed in the in the clinical trial, those people who had a sleep schedule and not everybody did, and you do not have to set one. But those people who had a sleep schedule had significantly more time in range. So that's just something to notice. No, you don't have to set one right? Could you have automatic corrections going all night long and being awake, I'm sure you could do that. If that that's how your diabetes works. Great. My diabetes, your diabetes, somebody else's diabetes, they're all going to be different, right? We all have different versions of how we metabolize things and how we sleep and how we process and our activity and you know, sometimes, you know, the sky's blue and sometimes it's not and it just depends. That's life with diabetes, some things will work with some people, somethings won’t. We did have in the clinical trial have some people we refer to as Sleeping Beauties who had sleep going 24 hours a day and and that would put you at the you know, like the 112.5 to 120 all the time, no automatic corrections but you would get basal increases and basal decreases to try to keep you in that range. And for some people, that's great. You know, that's where you want to live, that's fine. You will not get the automatic correction, you will need to give that correction when you need it. It's not going to be enough to accommodate that. But hey, if you're sleeping beauty and that works for you, that's fine. Then there is exercise. Exercises is a button you press. You go into options you press exercise – start. I'm exercising now and then I will leave it on exercise and when I want to stop I will go in and I will stop exercise. And while I'm exercising will be a little Running Man on the side of the screen to show me that I am exercising. And that will tighten the reins to 140 to 160. To help prevent hypoglycemia, it also engages what we call the brakes or the prevention of hypoglycemia by 10x. So if you think of a car rolling down a hill, and if you think of getting your brakes tightened 10 X, the minute you start going downhill, you're going to stop, right? It's going to be like that, stop, it's gonna be really, really grippy. And that's the way it works doing exercise. We anticipate hypoglycemia. Now you can still get an automatic correction bolus, and you can still get an increase in basal during exercise because there are people who will go high during exercise. With the pediatric sports particularly, you notice a big difference between game day and practice day. Like game day there's a lot of adrenaline there's usually a lot higher blood sugars and practices it’s low blood sugars. So You know, this is why that's still going on in the background, starting in an hour before starting at the time of exercise, leaving it on an hour after all of that's going to vary depending upon the person and the activity and you're going to have to play with that and see what works for you. You know different strokes for different folks. And some people won’t need to put on the exercise right they'll be fine where they are. It just depends on what you're doing your body, your diabetes, what's going on. And as to when you start it and when you stop it or if you use it. Likewise, you know you could put exercise on 24 hours a day if you wanted to, if you needed to ride a little bit higher or you know were feeling very cautious about something you know, and you want it to be, driving all day or something you know, like I just want to be a little bit higher today Stacey Simms 30:53 Your kids first sleep over Molly McElwee Malloy 30:55 your kids first sleep over and you want that automatic bolus, they're going to snack. And, you know, if you think about it, like if I think about my kids there, they are active 24 hours a day until they crash, right? So if they're super, super active, and I'm getting, I'm getting frequent lows from that activity, I might put them in exercise all day, right? So depending on what's going on with that patient that time and what works for you, they'll be different. They'll be different reasons why different activities are better for some people than other people and when you want to use them, but they're all available to you to use as you want to because we all deserve choice, and we all should have Control over what happens with our diabetes. Stacey Simms 31:43 It's really interesting. Okay, I'm trying to get through the list because I have I have 14 questions for everything you answer. So I know we'll talk again, but I do want to ask you about insulin on board and I will set this up by saying in the last few months, I've been reading up a lot on this in anticipation of what we're going to talk about here, because Benny's insulin on board, which is as you listen, you may not realize there's a setting in the pump, all pumps, where you try to figure out how long the insulin that you're giving is lasting, and this is with MDI as well, but the pump does it automatically - you have to tell it and then it keeps track. So we have always said Benny's at three hours. And then when he hit puberty, we kind of tightened it up. And I've learned that it really didn't matter what we said, or what we thought that everybody's insulin on board, studies show, is about five hours. And so that's what's in Control IQ? Molly McElwee Malloy 32:40 Yeah, it's at five hours. So if you look at some data, and again, I can provide you with links to some published data on that, the data says it's between four and a half and six hours. So let's split the difference and call it five hours. So we're using five hours for several reasons. One it’s established data we can rely, on you can hang your hat on it. Also, it's a static number, right? So if you are, if you are trying to aim for targets with a multitude of patients, a multitude of patients and you're trying to automate an algorithm, you cannot then vary IOB without causing some pretty crazy ripples, right? So it's going to work for some people, some people not, we want something that works for most people, right? Like, I understand that Control IQ is an amazing solution for a lot of people. And if some people are like, I'm so much better when I do it myself. Do it yourself. That's fine, right? Like that's why we have choice. But in order to design a system for the masses, you're going to have to go with the large majority of scientific evidence, right, which again, shows insulin on board somewhere between four and a half and six hours. So going with five hours and keeping that static when you're aiming for different ranges, and you're allowing people to do different basal rates and carb ratios and sensitivity factors, you will have to lock something in and we've locked IOB. And that gives you some really good results, obviously, but and for skeptics, I will say this, you know, try it. Try it and see what you think. Because it may not be as different as you think. Stacey Simms 34:27 well, I’ve been shocked to find out that the entire looping community, and the do it yourself folks, all of those systems are based on five hours, pretty much. Molly McElwee Malloy 34:37 Right, right. And you do have to assume some, you have to make some assumptions, right when you're writing an algorithm that's going to modulate insulin for the masses. And one of the assumptions is how long does this thing last? If you change that, all the other math has to change. And that makes it a very unstable algorithm. A very unstable system. And then it’s not for the masses, right? So that is why it's locked in and there's a lot of scientific evidence. And the DIY community has embraced us too, you know, at that five hour time frame. Stacey Simms 35:13 In terms of the rollout Molly, I remember when we got Benny's pump about a year before Basal IQ was available. And as I was looking back, it was a pretty seamless process for us. In that I remember it was FDA approved. We got the email, we got the prescription from our doctor then Tandem said here's your code, and we downloaded it and the whole process took from FDA approval to on Benny’s pump, with no special treatment, was 35 days. I'm not going to hold you to that. I'm not asking you to keep to schedule, but I am going to ask and I think 35 days was pretty great. Is there anything that you all learned from the Basal IQ roll out that people who went through that can expect to experience differently this time around or did it work pretty smoothly? Molly McElwee Malloy 36:00 Yeah, so I mean, you always learn, right? You always learn, and we're always learning and Tandem is excellent at collecting data and then understanding, you know, and learning from it. So one of the things that we did, we did learn there is that we needed a more robust patient portal. And so we've done that we've built a more robust portal, and we've built a lot of automation in the background. So doing things like if you entered, you know, I'm going to update this and your physician had a blanket statement on board. And, you know, we could automatically line those two things up. It doesn't have to be a separate step it just automatically Yes. Okay, you're good. We have this checked in our records checking. We have this and this is on file, and we can do all of it. So there wasn't a lot of automation that there is now and there were maybe a couple extra steps involved in getting people either approved or making sure we had all the documents and we've streamlined all that. So it should be a very seamless process. The update itself could take eight minutes, but it shouldn't take much longer. You know, it's the eight minutes from, you know, whatever you're on now the Control IQ, and then you know, and then just reschedule it and doing the online training right before that, that's, you know, a little bit of chunk of time, but I think 35 days is pretty good. So we got approval this past Friday 13th. And we plan to roll out those emails to existing customers a week of the 13th. So it might be coming at close, but I think you can probably you could probably figure on the 35 days. Stacey Simms 37:43 (laughs) I'll give you some grace for the holidays. I mean, the last approval was August, so we only had to worry about back to school. I'm not too worried about 35 on the dot. I did want to ask you a couple of questions from the Facebook group, the diabetes connections Facebook group, you've answered a lot of them, but I had a really good question from Tim who was asking about in the clinical trial, he said, You know, people were able to familiarize themselves with the pump in the system about two to eight weeks, I guess. So he said, what took place during that period? And how much interaction with healthcare professionals was required? So I guess the question really is, how much do I need to interact with my healthcare professional? How much do I need to ramp up and learn before Control IQ will work well for me, we've mentioned you know, there are variables. Molly McElwee Malloy 38:29 So I think, and I think looking at that run-in phase, that was what it was called that two to eight weeks is that when you were taking people from multiple daily injections, introducing them to CGM technology, introducing them to pump technology and getting pump settings straight. So that was the longer run in period for people who were completely naive to both CGM and pump technology. And they could they could be allowed up to eight weeks, I don't think most of them completed their run-in phase much faster than that. And most people have people that already had pump or CGM or some knowledge of one or the other could go but at a much faster speed. So it was just getting them up and running and comfortable with the technology and the physician or whoever was overseeing at that site felt comfortable that, yes, this person is ready to proceed to the next step and go ahead and use an automated system. So that just allowed for all walks of life to come in and to do this trial. And that's really what that was about as far is, you know, how many connections how many touch points with an HCP. You know, I can't speak specifically to each situation. But typically, in a run-in phase when you're getting people up and running that have never used technology before, you might check in with them every couple of days and then do a download at the end of the week and then check those settings. So And I would suggest at a later time you having one of those sites, the principal investigators on to talk about the studies it’s fascinating. And they could really get into the weeds of these details, because I think Tim had a really good question about that. As far as the average person though, getting up and rolling, the big thing with Control IQ technology, is you have to have good pump settings. Right. So that may be a couple of touch points you maybe have to have with your HCP if you've never had a pump before, right? Or you're and you're just waiting for the first time. Or if you've had pretty poor settings, and maybe pretty poor Control along and you've never really sat and been like, Huh, I wonder if these are right, or your HCPs never sat down with you into like, let's take another look at this. That that may take you a visit or two but if your pump things are pretty good, you should be fine to go And then you can check in with your doctor. At your comfort level, right, like there's no recommendation. As long as you feel like you're doing well, then great. There is a mobile app that will roll out with this. It's embedded into the technology update for Control IQ that will give people access to this mobile app, which will be available on Android and iOS. But this will allow for automatic uploads to the cloud. So the data will be going seamlessly to the cloud. You could also then see it on your phone. You cannot yet bolus from that phone or dismiss alerts or alarms. But you can see what is happening from that phone. And it will, it's a ways to send data to the portal so that your data is always updated. And so you know, your healthcare provider can check in and say how you doing and I see this is happening or I see that's happening and you can all beon the same page without actually, we go into the office or upload your pump or any of that stuff. Yeah, I believe it that process. Stacey Simms 42:08 That was going to be my next question. But my understanding is that the phone app is going to be just for healthcare providers as it's rolled out, and then consumers can use it down the road. Is that not correct? Molly McElwee Malloy 42:19 No. So there are two parts to this. So the app will be on the patient's phone, right. That's how the data gets the cloud. So the space is going to have visibility to their data. The data going to the cloud goes to the HCP portal, right. So that's the healthcare professional portal, the portal that we offer up to professionals so they can manage all their patients in one place. Right. So they log in, they can see data as long as you have Wi Fi available Wi Fi is both publicly and people having it at home or you can choose to use cellular data. You can send your data for the cloud every five minutes. Stacey Simms 43:04 I just want to be clear. So when I get my Control IQ, let's say, let's say I get Control IQ by the end of January, when I get Control IQ on Benny's pump, he will be able to look at his cell phone, not do anything with it, but he will be able to view his pump data in real time on his cell phone. Molly McElwee Malloy Yes. Stacey Simms Yeah, that is amazing. Okay, so I know that many people who are newer might think, well, that's not so amazing. But I mean, after 13 years, you know, we had these dumb pumps and no CGM to have Benny be able to look at his phone and say oh is was my battery charged. Do I need insulin? You know, even the simplest things. And then the idea is down the line. And maybe you can give us a peek into the future. As you said, You can't bolus from it, but possibly someday, soon. Molly McElwee Malloy 43:50 Oh, we are working on integrating the ability to do a mobile bolus. Yes. Stacey Simms 43:58 All right. I'll leave that there for now because I know Talk to you another hour about it. But then my last question on the phone is, what about remote data from the pump? Can a parent caregiver, you know, friend spouse, once the Tandem information is on the user's phone, can it be shared. Molly McElwee Malloy 44:15 So we are working on a remote monitoring feature. But at this time, it will just be available on the patient's phone, and it will be a way to get the data to the cloud. Now you could log in to see connect and look and see what's going on with Benny at school. If he's if he's got Wi Fi going. It's not really meant to be a remote monitoring system is approved for that. But you know, Stacey Simms 44:44 (laughs) I’m just thinking of all the parents I know All I care about is is it charged and is there insulin in it, but I know a lot of people really want to see, you know, everything but that's really interesting. Molly McElwee Malloy 44:52 It could be that you know, and then some people know how to like do the mirroring on their phone to another device and you know, there's going to be people will figure that out. And we will eventually have a formal system for that. And again, nothing is intended to be remote monitoring or you know, per share type viewing. It’s supposed to be a, you know, a secondary viewing device of seeing the data. But you know that data is going somewhere and you can log into that place. So, you do with that with whatever you want to, but you'll be able to see that data if he's got Wi Fi going. Stacey Simms 45:32 All right. before we let you go. I have to ask you, we started this whole conversation about you talking about, you know, finally relaxing when you use an automated system in 2006. So here we are. 13 years later, Molly McElwee Malloy 45:50 I know. Stacey Simms 45:53 You've been using Control IQ I shouldn't make that assumption, but have you been using Control IQ? Molly McElwee Malloy 45:58 I do have Control IQ Okay, Stacey Simms 46:00 and I'm asking you this I know I may be limited in what you can say and I understand that. Are you as relaxed and feeling more in Control of your diabetes as you had hoped? Back in 2006? Molly McElwee Malloy 46:15 You know and.. sorry, it makes me little choked up. I am in a place I never knew existed, right? This is a place that I dreamed about. I'm not worried about what's happening with my blood sugar. I'm not worried. We had my daughter's third birthday this past weekend, and I didn't worry about, was my bolus enough for the cupcake because like it had my back, right? Like, I was like, if it's, you know, this more than this, whatever, it's got me if it’s less than this, it’s got me like, I didn't worry the whole day and I stayed in range the whole day and Got to enjoy my daughter's birthday without worrying about my diabetes. So that was pretty awesome. And that's where I want to live, right? Like I have other things to do. Everybody has other things to do than to try to be their own pancreas and their own organ. So let's relieve that burden and then you just interact with it with meals with exercise, you know, when you need to. It's much more of a relief than I imagined because in 2006, I was hooked to laptop. Stacey Simms 47:35 Oh my gosh. That’s right! Molly McElwee Malloy 47:37 Yeah, I was hooked to laptops with four IVs in my arms. And I was willing to do that. And I would have walked around like that. So this is some space age invention that never entered my mind that this could have happened but it is beautiful, very eloquently done. I have to hat tip to the engineers at Tandem, who took you know, years and years and years and years of research to work, you know, work done in neat tidy ways, right? And then put it into a system and made it this eloquent and this beautiful. Where I don't have to think about the 50 things I would have thought about before, you know, is my laptop plugged in and my plugs into the right USB port, my, you know, the things you've got to think about if you are plugged into bigger machine. Sure, like, I don't want to think about any of that. And, and during research, you know, seeing in all the different iterations. You know, we still had even we have a cell phone, we still had the fanny pack, right? Because you had to keep the receiver and the phone near each other and all this other stuff going on and the pump. And now I'm just walking around with a CGM and a pump on and it's doing it and I don't have to worry about any additional things to keep up at it's pretty great, it's pretty awesome. This is a place that I never dreamed, I never even dreamed of. And I'm just so happy to be here. Stacey Simms 49:10 Molly, thank you so much for joining me for spending so much time talking about this. It's been remarkable to just for the few years that I've followed along in your journey, it's been wonderful to watch. So thank you so much. And I cannot wait to get this for my son! Molly McElwee Malloy 49:29 that I can't wait to see what you say. Because, you know, we're like to 2.0 we’ll make 3.0 We'll see what's going on. So your feedback, everybody's feedback is so valuable. Stacey Simms 49:40 I would have liked to have ended on that emotional note that you have there. But we do have to say, for for many people who have been in this community for a long time, who are emailing you and me saying, Why can't I get the target under 100? Why cant I do this? I want this feature. I want that feature. It's not that they're that people are greedy. It's just that you know, you know we all we all want this so badly. It's a great reminder that this is the first step. This is this is the beginning of the automation. So, you know, I want it all too, but I get it. And I just think it's fantastic. So yeah, this is this is the first one with Tandem. Let's see what happens to the future. So gosh, it's so exciting. Molly McElwee Malloy 50:21 It really is. And I could say to people who want to customize everything, want to do everything good. Look, the future is coming. And it's coming faster than we then we could have dreamed up and I realized we waited a long time. Trust me, me of all people. I know how long we have waited. But this is a really solid system that we get to build upon. It’s going to be a phenomenal ride. Like I would invite them to try it. See if you can relax a little and see if it brings you any kind of peace of mind. And then we'll work on getting the targets exactly where you want them. Stacey Simms So much more information on the website please check it out. And I know many of you have unanswered questions you know you really want to do a super deep dive you want more we will dig into the research as Molly mentioned, I promise we will do mentioned I promise we will be doing follow ups on this as a tandem family. You know, we'll have Benny fool around with it. let you know what he thinks I'm hoping to get him to do a review. As soon as we get control IQ, which, you know, we're not jumping the line, we're there with all of you. So hopefully by the end of the month, beginning of February, I'm really hoping that we'll have control IQ on his pump. And, you know, that brings me to just a quick personal note on Ben, he was diagnosed 13 years ago, in December. So December of 2006, is when we heard those words, you know, your child has type one diabetes. And I remember a few bits of information from that day, we were not told, thankfully, we were never told, oh, the cure is five years away we were we were never told that and I had been a medical reporter for many years, and I'd covered type one diabetes. And I'd actually covered failed products like the gluco-watch and things like that. So I had my my knowledge around me and I knew there was going to be no cure in the next five years. So we didn't have that. But our endocrinologist did tell us that the artificial pancreas was in the works. And he said three to five years. And we would probably have that. And I have been hopeful, you know, cautiously optimistic, I didn't hang my hat on that. And I knew we'd have to learn to live well with diabetes without an artificial pancreas. But when I think now to 2006, knowing that that is when Molly, within that trial, and other people that I've been so lucky to meet and talk to, since people like Tom Brobson, so many people at JDRF, who were involved in the early early artificial pancreas project, , it kind of boggles my mind to think that I could go back to Stacey in 2006 in that hospital room and say, Look, it's not going to be here as soon as you hope. But your son's going to be fine. And you're going to get to talk to these people that right now are testing it out. I mean, to me, it's just wild. And more importantly than than me still me getting to talk to all these people much more importantly, is that the people with type one as you listen my son get to use it. I'm so excited for control IQ. I'm so excited for anything that takes any bit of burden away from people with diabetes. I'm not looking for the world's lowest A1C? I really know that I am looking for a healthy A1C that lets my son lives a life he wants without diabetes being a pain in the ass without his mother texting him 400 times a day did you bolus Did you check? Right all that nagging stuff? I don't want him thinking about it 24 seven. When you talk to people who loop when you talk to people who've used open APS, right, these do it yourself systems. Their first response to you isn't, look at my fantastic A1C, although they're usually very good. It's, well, I get more sleep. Wow, I think about diabetes less. Wow, I worry about my kid less. And that, to me is what it's all about all of these decisions. I’m getting emotional thinking about it. All of the decisions that everybody who has diabetes, forget the parents that the people with diabetes have to make and that burden that is on you. I hope systems like this. Just relieve it a little bit. It's a good first step. It's not the end there is a long way to go. But that's what I am hopeful for. Okay. But that's what I am hopeful for. And I know that I'll hear from you. You wonderful do it yourselfers who will be figuring out ways to you know, hack the sleep mode and change the exercise mode and figure This stuff out. So we will move forward with lots more information in the weeks and months to come. You know, I don't have a way to wrap this up with a big bow. I don't have a way to end this year by, you know, saying something incredibly motivational and giving you a boost into the new year. But I do have to say that it's so exciting to end 2019 with the approval that frankly, I've been waiting for all year, and I know many of you have as well. And seeing that as another step forward. And looking forward to 2020 and what may come. Our next full episode will air on January 7, but later this week, I'm going to be releasing a new minisode I'll be doing more of these in the new year just really short episodes where I share some thoughts or some advice. love to know what you think about all that. Big thanks as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. wishing everybody a happy and healthy New Year. I'm Stacey Simms and I'll see you back here in 2020. (disclaimer) At times I mentioned tandem diabetes care. However, I am not compensated by tandem for my actions. And tandem does not support or control this content. I have created the content and it is based on my personal experiences and observations. Transcribed by https://otter.ai
During this interview, Stacey shares openly about many of the stages in her own journey. These included raising a son with a chronic illness, working her way into her dream career position, and ultimately leaving that role to protect her own health. You can learn about self-care, dealing with the pressure to be perfect, and navigating career change in this informative episode. I appreciate her candor, her positive outlook, and the twists and turns her journey took! [Quick Note: If you’re specifically interested in Type 1, Type 2, Type 1.5, or double diabetes (yes, these are all real!), you’ll want to tune in at minute 21 for Stacey’s quick PSA on diabetes diagnosis and types. Crazy interesting!] Stacey Simms’ new book is called The World’s Worst Diabetes Mom. She has a podcast and blog that inform, educate, and connect families that have children with diabetes. Ultimately, she shares that connections are what she is most passionate about. Why “world’s worst” as part of her book title? Stacey has noticed that parenting in general comes with a HUGE amount of pressure — everything from what schools your kids get into, to what you pack in your kid’s lunch (and how it looks, of course). And when your child has a diabetic diagnosis, you’re measuring so many additional variables on a daily basis, which adds a whole other level of striving for perfection. While in an internet “discussion” with a women who strongly disagreed with parenting choice she had made, Stacey fired back with “Well, I guess I’m the world’s worst diabetes mom!”. After the heat of the moment cooled, she realized there was something in that statement that resonated. The philosophy she devised? Give up the fight for perfect parenting! Stacey shares that her son’s diagnosis occurred in 2006. The iPhone didn’t exist, and Facebook was only for college students. There weren’t all these “voices” sharing tips and advice…or condemnation and criticism. Once social media became accessible, she appreciated the opportunities for getting new ideas, helpful tips, and the support of people who were in the journey with her was amazing. On the flip side…getting judged by strangers on the internet who disagreed with her choices and were quick to share all about it was a new struggle. Stacey realized that pre-internet she didn’t know she was “supposed” to feel guilt about some of her parenting decisions, so she didn’t. She also realized that giving her son independence and some level of “normalcy” was really important to her. During these early stages of being a parent and having a young child with a diabetes diagnosis, Stacey had her dream job. She absolutely LOVED it. She also realized that it was draining her, and wasn’t going to be sustainable in the long run. The straw that broke the camel’s back was her own diagnosis with ulcerative colitis. Her solution? Ultimately, she left. Even though it was a hard decision, she absolutely new it was the right thing to do. While talking about the transition from her full time position, I really appreciated that Stacey acknowledges the privilege that allowed her to make these transition choices. Everyone’s journey looks different, and the choices available to every individual are going to be different. To learn more about how Stacey navigates change and implements self-care, listen in to the full episode. --- Send in a voice message: https://anchor.fm/expansive-creativity/message Support this podcast: https://anchor.fm/expansive-creativity/support
With holiday travel gearing up, we decided to check in with someone who travels the world. Jason Viglione is always on a plane, train or car for business and has figured out his own best practices for pump, CGM and the whole routine Check out Stacey's new book: The World's Worst Diabetes Mom! Jason was diagnosed just last year.. his anniversary date is coming up in January. Like a lot of adults, he had trouble getting the right diagnosis. We’ll hear that story and a lot more.. Join the Diabetes Connections Facebook Group! In TMSG – a cameo in a Hallmark Christmas movie.. a diaversary celebrated in a big way.. and a little independence for a tween with T1D that's worth celebrating! Sign up for our newsletter here This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android
Meet dietitian and strength coach Ben Tzeel. He says he started getting hooked on strength training as a teenager and hasn't looked back. Ben & Stacey talk about his wild Instagram posts where he shows you how he doses for food like giant donuts, and carbs and macros and diabetes and exercise.. Check out Stacey's new book: The World's Worst Diabetes Mom! In TMSG: a girl scout troop decides to educate their community (check out the video here) and a comic book from the UK aims to educate about T1D (more here) Join the Diabetes Connections Facebook Group! Stacey & Ben also talk about specifics to help her son, Benny, as he begins high school wrestling. At his first double practice (weights & mats) Benny needed to eat 75 uncovered carbs to stay above a blood sugar of 80! Sign up for our newsletter here ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android
Listen to an excerpt from The World's Worst Diabetes Mom: Real Life Stories of Raising a Child With Type 1 Diabetes! If you like what you hear, get the audio book for FREE. Diabetes Connections listeners can use this link to get one free book and one free month of Audible! You can also find the book here if you're new to Audible and here if you want the paperback - eBook - or audio directly through Amazon and you're already an Audible member This chapter is all about using social media to thrive with type 1 diabetes. But of course, it's also about the many mistakes Stacey has made along this way. Hear the story of how she bolused her purse, instead of her child. Read the transcript below Join the Diabetes Connections Facebook Group! Sign up for our newsletter here Transcript of the excerpt: "I think there’s an argument to be made that we can get more out of social media when we share our mistakes and worries than when we only post when things are going “right.” I know a lot of people love to share straight CGM lines and big and small victories, and that’s great. I love to celebrate along with you! But over the years, I find I have more of an impact and get more support when I pull the curtain back and show what’s not going right for us. The first time I realized this was a scorching summer Saturday in 2010. Benny had just finished Kindergarten and Lea, 4th grade. It was 101 degrees in Charlotte. I took the kids out to and then to a nearby splash pad. It was exactly what we needed and we spent the afternoon inside at home, trying to beat the heat. The afternoon blood sugar check was a shocker: 500 BG. Big bolus, but an hour later Benny said he didn't feel well. At this check we got HIGH GLUCOSE! No ketones, thankfully, but something was very wrong. The meter remote was across the room, so I asked Benny to take his pump out of the pouch he wears around his waist. That’s when the problem became very clear. He had no pump to take out. Uh oh. Even though the pump we used was waterproof, we usually took it off when Benny was in or around water. It wasn’t the rough play – the insets stayed on just fine for that kind of thing and the pump is durable. But Benny usually went low during swimming and taking the pump off helped keep him steady. Note: this definitely depends on the person. As Benny gets older and bigger, the energy he uses for swimming and water play has changed. When you think about a 5 year old swimming, think how exhausted they get – they use their whole body every second! A 12 year old is still very active but might be throwing a ball in the pool and hanging out for hours rather than swimming nonstop for 30 minutes. We found as he got older, we needed to increase the basal rate for a couple of hours after swimming if we’d disconnected for more than an hour. As I said earlier, check with your endo about disconnecting a pump and/or adjusting the basal rates on a waterproof pump or pod. Many people have also found success using long-acting insulin along with the pump (also called “untethered) or even switching back to multiple daily injections for vacations or summer if your child swims a lot. Whether your child swims for ten minutes or ten hours, you do need to put the pump back on! We had forgotten that part. As soon as I realized that, I immediately remembered what I had done. We’d taken off the pump and thrown it in my purse. It was still there, just blinking at me and dripping insulin. All that time I was giving Benny insulin using the remote meter, I’d really been bolusing my purse!! Once we figured that out, it wasn’t a difficult fix. We clicked the pump tubing back into the inset, did a giant bolus, checked ketones (nope) and refilled Benny’s water. I spent a moment wondering if I should wash my purse or just wipe it out. And if I’d ever get rid of the insulin smell. Ugh. 15 minutes later I grabbed the meter to see if the insulin had started working. Yes, I know it was too soon, but I was nervous and anxious and…. I dropped the meter. It slipped out of my hands, onto the floor and cracked. I have backup meters, but this was the brand new remote meter we’d only had for a month. After almost 4 years of pumping, we finally didn’t have to reach into Benny’s pouch to pull out the meter and could easily dose him while he slept. I didn’t have to turn around in the car while my husband drove and dig around in Benny’s car seat to bolus him for road trip car snacks! We loved that new meter. And now, it was all in pieces on my kitchen floor. Talk about feeling like the world’s worst diabetes mom. My kid was high because of my doofus forgetfulness. Our brand new amazing remote meter was in pieces. Surely, no one was as horrible a mom as me. I took my frustration to Twitter. If I tell you the responses were life-changing, I’m not sure that would be an exaggeration. Remember, this was back in 2010 when social media wasn’t was it is today. I wasn’t sure what I would get. Scorn? Judgement? Turns out, all I received was support: Here are some of the great responses: @kellyemmaellisThe Party Wizards @staceysimms oh no simple mistake!! At least it can be easily corrected with pump and Benny had been nice and active to take the edge off!! @SweeterCherise Cherise/LADA @staceysimms hugs! How's he doing? @DMomBlogLeighann D-Mom @staceysimms It happens. You realized it and are taking care of the situation. He'll be fine. ((hugs)) @Kate_Ireland123 Kate Banks @staceysimms diabetes is 24/7, you are not. You can't be perfect all the time. Its not your fault, you treated it, it's over :) @PortblPancGrl Stacey D. @ @staceysimmsglad he's ok! And hope his BG gets back to normal soon. Other people had done this. Other people made it through. They said I didn’t have to be perfect and that Benny would be fine. It’s hard to describe how much better that made me feel. I was still mad and frustrated, but I was no longer alone. I think I was just as relieved to hear that Benny would be okay – that this had happened before – as I was to see these other women not judging me. Not shaming me. They didn’t share the post and invite others to pile on. Instead, they supported me. I didn’t know them but they were willing to reassure me and lift me up. Of course, Benny was fine – his blood sugar came down, he was safe and happy and thought the idea of bolusing my purse was very funny. I called Animas and they overnighted a new meter remote. Ours was still in warranty (barely out of the box) so they were fine with a quick replacement. As you know, by now, this was hardly our first mistake. But it was the first time I remember admitting to one, publicly. It was incredibly freeing and it led the way for me to share more mistakes and missteps." ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android
This week, a deep dive into mental health and diabetes. We talk about burnout, depression and feeling like a burden to others. Allison Nimlos was diagnosed with type 1 at age 8. She is a licensed therapist – in fact her social media handle is The Diabetic Therapist and she's a CDE in training. The World's Worst Diabetes Mom is out! Buy Stacey's Book! Allison talks about the mental toll diabetes can take – something she knows about first hand. This is one of our Extra interviews.. so there will be a longer bonus episode. and it will be available as a transcript. Join the Diabetes Connections Facebook Group! In Tell Me Something Good, a message about affordable insulin gets a World Series audience, thanks to a familiar name around here. (watch the video) Sign up for our newsletter here This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android
Two dads of T1D daughters (and on this occasion, a Mom of a T1D son), on a podcast, trying to figure it all out. Because we know how much she likes her Avengers/Incredible Hulk analogy...World's Worst Diabetes Parents ASSEMBLE!!! Alan and Mark are delighted and excited to be joined this episode by 'Diabetes Connections' own Stacey Simms, now the author of a fabulous new book titled, 'The World's Worst Diabetes Mom'! Stacey talks to us about the highs and lows (quite literally!) of raising a T1D teenager, the importance of helping our kids become independent and empowered, and 'mistakes' she made along the way which provided some of the funniest stories in the book!Stacey also agreed to send one lucky listener a signed copy of her book - check out our social media posts for details on how to be entered into that prize draw.Or, if you just can't wait to get your hands on a copy of this fantastic book, head on over to the 'Diabetes Connections' website to order a copy NOW! https://diabetes-connections.com/product/the-worlds-worst-diabetes-mom/
This week, a deep dive into mental health and diabetes. We talk about burnout, depression and feeling like a burden to others. Allison Nimlos was diagnosed with type 1 at age 8. She is a licensed therapist – in fact her social media handle is The Diabetic Therapist and she's a CDE in training. The World's Worst Diabetes Mom is out! Buy Stacey's Book! Allison talks about the mental toll diabetes can take – something she knows about first hand. This is one of our Extra interviews.. so there will be a longer bonus episode. and it will be available as a transcript. Join the Diabetes Connections Facebook Group! In Tell Me Something Good, a message about affordable insulin gets a World Series audience, thanks to a familiar name around here. (watch the video) Sign up for our newsletter here This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. It's Halloween Week! Listen to our "Ask The D-Moms" episode all about trick or treating, costumes and candy Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android
Erik Douds has big plans for the next few weeks. First, a 100 mile bike ride through Death Valley next week and then the New York City Marathon. Douds says these events take on a new - unexpected layer when you have type 1: it becomes about community. Buy the Book! The World's Worst Diabetes Mom is on sale now! Erik is partnering with Scott Johnson on the JDRF Death Valley Ride, we'll talk about how the popular community leader got involved. Donate to Erik & Scott's JDRF Ride Plus.. tell me something good! Scholarships and new blogs! Join the Diabetes Connections Facebook Group! This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Sign up for our newsletter here 00:00 Show Open: What's on this week 1:20 Stacey Welcome: Stacey is recording on the road from a women's podcasting conference. She talks about Benny's recent injury he's okay - they thought it might be an ACL tear, but it's just a bad knee strain - and what happened with blood sugar. Book update as well! Pre-orders have gone out! 6:20 Snippet of Scott Johnson ride video 8:20 Interview with Erik Douds 41:30 Tell Me Something Good: college scholarships for people with diabetes? College Diabetes Network list Beyond Type 1 List Check out DiabetesMine monthly blog/social media roundups 45:30 Stacey's on the road! Look at her schedule and request that she come to your event here. ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android
Podcaster, author, radio personalty and self-proclaimed world's worst diabetes mom Stacey Simms joins host Pamela Escobar in-studio to talk about raising her son with diabetes, and making mistakes.
Halloween doesn't have to be scary for children with type 1 diabetes or their parents. Moira McCarthy & Stacey are back with Ask the DMoms. They answer your questions about all those bags of candy, lows while kids run around the neighborhood, pumps and d-tech under costumes and much more. Order Stacey's new book - The World's Worst Diabetes Mom In Tell Me Something Good: A good beat and a follow-up that lets us say yes to the question.. is there a doctor in the house? Join the Diabetes Connections Facebook Group! Listen to our previous episode with Kelly Kunik dignosed as a child on Halloween. Sign up for our newsletter here 00:00 Show Open: What's on this week? 1:40 Stacey welcome: Thanks to Friends for Life Falls Church! The World's Worst Diabetes Mom is available for pre-orders! It will be on Amazon Nov 3 5:20 Ask The D-Moms: Halloween 35:30 Tell Me Something Good: Blindfolded Drummer & Dr. Heather Walker 38:30 Where's Stacey Going Next? Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android
Would you ask your teenage daughter to be the first to try a new DIY diabetes method? Carson's family did. She's been Looping with Omnipod since last fall; as far as we know, she's the first person to do so. Pre-order the World's Worst Diabetes Mom, Stacey's New Book! We’ll talk about being a loop guinea pig, how her parents are doing and more. In our Community Connection this week, Stacey talks to Dave Peterson, the GM of the Worcester Bravehearts about his diagnoses with type 1 as an adult. Join the Diabetes Connections Facebook Group! Learn more about Open Omni Learn more about OpenAPS The Nightscout Foundation Sign up for our newsletter here And tell me something good an intern gets called in to see the boss.. for a great reason. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. ----- Show open: what's on this week? Stacey Welcome: Interview with Carson Wedding Interview with Dave Peterson Tell Me Something Good! See you soon - Stacey talk about events (find more here) ----- Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners! ----- Get the App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android
Stacey Simms' second child, Benny, was just under two years old when she suspected he might be showing signs of Type 1 diabetes. As a former health reporter for WBTV news in Charlotte, Stacey knew enough to suspect diabetes and called her pediatrician. The pediatrician agreed to see Benny to "rule out" diabetes... but it turned out Stacey was right - and they left the doctor's office with a diabetes diagnosis. Today, Stacey hosts the Diabetes Connections podcast, where she highlights news in the diabetes world to help other families who are managing a diabetes diagnosis. During our chat, Stacey shared helpful information about the differences between Type 1 and Type 2 diabetes, how she knew her son was ready for autonomy (going to friends' houses and pizza parties suddenly became scary!), and her advice for moms who are dealing with a pediatric diabetes diagnosis. I was also surprised to hear Stacey say that the price of insulin is increasing, and she encourages us to follow and support a campaign called #insulin4all to help ensure families and adults don't have to ration their insulin, which is crucial to health and life for many people. If someone you love is managing diabetes, check out Stacey's podcast, Diabetes Connections, or follow her online at @staceysimms. She's also releasing a book soon, entitled "The World's Worst Diabetes Mom." Is that a great title or what!? You can follow me online at @InfluentialMotherhood on Instagram and Facebook - I'd love for you to say hello! For more episodes and inspiring stories of moms making a difference, visit www.influentialmotherhood.com.
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