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This week… something completely different! It's an episode all about my favorite things. With apologies to Oprah, this isn't about the holidays – it's a little late for that! And while some of this might make good gifts, this more of a season-less list. Just good stuff I like. Couple of rules I set for myself: Nothing that needs a prescription. Nothing that I'm getting paid for. No one on this list will even know they've been mentioned until the episode goes live! Hope you enjoy! -Stacey Here are the links to everything I mention: Keep it cool: Frio wallets Tempramed VivCap Sticky stuff/application: Skin Tac wipes Stay Put medical patches Benadryl spray and Flonase spray Nexcare waterproof bandages Cases/accessories T1D3DGear (warning, profanity) Casualty Girl pouches  Disney-themed pouches  Dia-Be-Tees shirts and stickers Books: Think Like a Pancreas Raising Teens with Diabetes Sugar Surfing When I Go Low Just for fun: Heroic Kid (play d-tech for toys)  I Heart Guts New Rufus the Bear! Misc. The Useless Pancreas (marketplace) Highs and Lows Ring Guitar Pick Check out Stacey's 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 below:   Stacey Simms  0:00 Diabetes Connections is brought to you by... Dario Health – Manage your blood glucose levels. Increase your possibilities.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 This is Diabetes Connections with Stacey Simms. This week, something completely different. It's an episode all about my favorite things. With apologies to Oprah, this isn't about the holidays, it's a little late for that. And you know, some of this might make good gifts. This is more of just something I've been thinking about doing for a long time. So I would consider this a bit of a seasonless list, just good stuff that I like. And unfortunately, unlike Oprah, I haven't hidden everything I'm talking about here under your seat as a gift. So I can't do that. But I did set a couple of rules for myself, you're not going to hear me talk about anything today for which you need a prescription. Right, I'm not gonna talk about medical stuff, and nothing that I'm getting paid for. I will put the links for all this stuff in the show notes, but they're not affiliate links. So that means they go right to the product where I think it's most easily available. They don't go to a special link, you know, which tallies you up and then pays me. I mean, there's nothing wrong with that as long as everybody knows what's going on. And a couple of these folks may sound familiar, I've worked with them before, we have had partnerships and sponsorships with the mostly the booked clinic program. But I really just wanted this to be a fun way to share my thoughts. If you have a product that I mentioned. And the link is wrong or doesn't go exactly where you want it, please reach out. I want to make this great for you and easy for my listeners. So drop me a line Stacey at diabetes connections.com. And maybe we'll get a thread going in the Facebook group to find out some of your favorite things. Because you know, Benny is older now and the products that we really needed, you know, like the super cute insulin pump pouches that he used when he was three years old, he does not use anymore. So I don't have recommendations for stuff like that. Maybe we can kind of get a list going and I can do a follow up in a couple of weeks or months for listeners but you really should be in the Facebook group. Anyway, if you're on Facebook, I know not everybody is so if you're there, come on over. Alright, so here are a few of my favorite things   let's talk about keeping insulin at room temperature. A couple of products I really like for that we don't have a ton of issue with this day in and day out. I do live in North Carolina and Benny of course is  outside quite a bit in the summer, he does go to summer camp. When we've needed to keep something at room temperature. We use a Frio generally these Frio wallets pretty standard in the diabetes community you probably know about them. What's nice is you can get them at CBS. Now, I think Walgreens carries them used to be online only. They're really easy to use. Please follow the directions. Don't be like me and oversaturate and then you can't get anything in the wallet. You have to just read the directions. You'll figure it out better than we did. But Frio doesn't keep it cold. It just keeps it cool. But we love Frio. Close to edging it out. And the only reason it doesn't here is because of the price. And because it doesn't yet cover vials. But that's coming is the VIVI Cap. These folks reached out to me middle of last year, probably spring of last year and sent us a sample we decided to try it on Benny's trip to Israel. If you'll recall, my son went to Israel with his non diabetes camp last summer for a month. This included tons and tons of outdoor activity in temperatures that were in excess of 100 degrees. Quite often, he packed two bags, one was like the go bag, three days worth of supplies. And then the other bigger bag that stayed inside or in a refrigerated area, at least the insulin part of it did on the bus or you know, wherever they went, I have my suspicions as to whether it's stayed perfectly refrigerated the whole time, but only a little bit of insulin went into the desert with. But the idea was he would take a pen, we would use the VIVI Cap, and then he would just change the pen out continuing to use the VIVI Cap in his backpack. Whenever he needed more insulin. He had vials he had pens we use both in his pump. And it's always nice to have a pen in case you need to give yourself a shot something like that. So when he came home and this is so typical of my son went through his bag, for he did a great job with diabetes, but there must have been like a communications problem because he never changed out that insulin pen. He never needed to give himself a shot, which is probably why but he just always used the vials that I'd sent him with. I sent him with way too much insulin for a month but you know, you know mom's What am I gonna do? So upshot of this long story is that the one insulin pen that we sent to Israel with stayed in hot temperatures definitely in excess of probably 75 degrees around the clock, and certainly in excess of 100 degrees for several days at a time during the daytime. And what happened to it right it was with the VIVI Cap the whole time so we decided to test it out. You know how he supervised setting right? I wasn't going to let him use this pen and then jaunt off do overnights or whatever he was with us. And look, we would know right away if that insulin was no good. And guess what? It worked perfectly. It was fantastic. He was in range. I mean, he was really we were really watching obviously, right. But he was in range pretty much the whole three days. So it was fantastic. And I was definitely converted to VIVI Cap. That should be their tagline guys call me if you can stand the Israeli desert heat, right, you can certainly hang out a day camp in North Carolina this summer. They often have promo codes, discounts. It's more expensive than the Frio wallet. But it's also really durable and lasts for a whole year. And it has different sizes. So it will fit whatever insulin you're using. My understanding is that they are working on a similar bit of technology for insulin vials, and that would be great.   Let's talk a little bit about getting stuff to stick. I have a whole document about this. If you haven't seen it, it's been a pop up for a couple of months. It's been incredibly popular. So I haven't taken it down yet. But I'm probably going to move it over to the bookstore section. Do you don't have a bookstore section on the website, we're kind of creating a place to put documents a lot of stuff is free. There are PDFs, so we're gonna move that over there. But of course there there's my book to buy and there will be more later this year. But the getting stuff to stick is so personal. I think it's really hard right? Everybody's skin is so different. So here's what we have liked over the years could not keep anything on Benny skin with a Skin Tac that is the brand that we like we get Skin Tac from Amazon. Over the years we've gone from just using the little Skin Tac wipes to using the liquid bottle we used to liquid for many years. I think gosh, Benny was like 13 or 14 and he was like no more. I don't want that it's not portable enough. He's never home. So he uses the wipes. Now. He uses nothing to dissolve it. So I have no favorite product for that. He literally just rips things off his skin. I cringe every time but hey, it's not my body. We like Stay Put Medical patches. That's the brand, Stay Put Medical just foyer for years and years. We had trouble in the water. I tried vet wrap I tried all the stuff that all the moms tell you to try. The Dexcom overlays that come free from the company are great, but it didn't work as well in the ocean, or with sweat, that kind of thing. So Stay Put patches really were fantastic for us. The story I always tell is Benny with a diabetes camp for a full week, right Saturday to Saturday. And then we went to the beach and we restarted the ducks calm. This was a couple of years ago. And it survived to Stay Put and the Dexcom survived a week of diabetes camp where they swim and sweat and you know, they're pretty gross for a whole week. It's hot. Again, as I said we live in North Carolina, and then three days at the ocean, sand and ocean. All that stuff that you get and it really did stay put. So I really love that they're big. He got an incredible tan line. That's one of the only downsides of it. We used Benadryl spray, Benny had a brief time of having a mild allergic reaction. I think this was to the Dexcom G5 years ago and my husband came back from the store with over the counter Benadryl spray not Flonase requested, and it worked fine. So it's kind of a weird, favorite thing, but I haven't heard a lot about Benadryl spray, but I'll mention it here. I also really really like next care waterproof Band-Aids, the brand doesn't really matter. I mean, it's just a Tegaderm bandage, but I'd like to mention it because you can get it at the drugstore or the grocery store. It's over the counter. Unlike a lot of the stuff that has to be ordered from your medical company or from Amazon, you can take a waterproof bandage and in a pinch, slap it over your Dexcom or slap it over an infusion set. I mean, you have to cut a hole into for the infusion set. But sometimes you can just slap it on top. We've done that and then gently pulled it off later to reconnect to the tube to pump. And it works great. I've heard a lot of people say they're afraid of doing that because they don't want to block the signal from the Dexcom people. We have done this many, many, many times I can show you photos. When we went to the Dead Sea in Israel, I did not want to take a chance of the salt. Right. It's so salty, corroding the transmitter. So we put a waterproof bandage over the Dexcom. And he left it on for a couple of days. I don't know the probably wasn't very comfortable, but he didn't seem to care. And it worked fine. So that's my in a pinch favorite thing at the beach   let's talk about cases and organization something that my son doesn't care about at all. And if I if this were me, I'm the kind of person that I love pouches and organization and cool stuff like that and he really doesn't care. But I will go through and tell you what I like. I am a huge fan of T1D3DGear. This is just a fantastic family in the diabetes community to begin with, and their stuff is awesome. So as you can imagine T1D3DGear, they're making stuff right they're printing it out on their 3d printer and it's everything from trays, which we do use, I love those makes your supplies really easy to find. And they've got different sizes for different brands to insulin protection vials, which I like a lot, and they will do custom colors as well, we've been so lucky, where's the wood that I can knock that we've never actually like dropped a vial, but I always put the vial we're using in the case. And that makes me feel so much better. It's just a really easy, it kind of looks like R2D2 in a way. I don't think that's by design, but it's really helpful and really handy and they're making super useful products. They also make the cutest ones like if your kid wants a unicorn or different options. I'll link up their website, as I mentioned, Benny doesn't really like pouches, but I make him use them anyway because otherwise his diabetes bag is just a complete mess. So we like the ones from casualty girl, some of these have a bit of profanity, you know, all my diabetes stuff. You can fill in the blank there, but they have a bunch of really clean ones, obviously, you know, for younger children, even for my kid I don't like him carrying stuff in public that that has profanity on it, but they have some really cute stuff specific to diabetes, also personalized. They put names on it, and they were so nice. A couple of years ago we gave away a bunch of their stuff at friends for life, so I always like to recommend them. I also will recommend and link up Disney themed pouches that don't look super Disney. I know a lot of you especially friends for life people you're big Disney fans. I am too but I don't like to have like Mickey Mouse on my purse. I like it to be a little bit more subtle. And at red bubble. There's a bunch of people who will put together pouches you can see the samples. They just kind of hint at Disney so I have the small world pouch but it's just like a pattern that is featured in small world. It's not actually it doesn't say small world. I got Lea my daughter for Hanukkah. This year. I got her one that has the Haunted Mansion wallpaper on it. You'd never know unless you knew. So very cool stuff. It doesn't have anything to do with diabetes. But I love red bubble. They also have a fun bunch of diabetes stickers there. Oh, speaking of stickers. The best is Dia-Be-Tees This is my friend Rachel. And she has amazing T shirts. She is so creative. She's got great stickers, she made an ugly Hanukkah sweater for diabetes, because a couple of years ago, she makes these great, ugly Christmas sweaters for their diabetes steam. They say funny stuff on them. But I pointed out to her like, hey, everybody celebrates Christmas and she was immediately on it. My favorite stickers are the Tyrannosaurus Dex, get it and the Banting fan club that she made this year for Dr. Banting. Very, very cool stuff. And I'll link up to her Etsy shop.   Let's talk about books. I promise I won't talk about my book here. I talk about it enough. But I really would like to recommend some books that have helped us a lot over the years. My favorite, the one that I always recommend is Think like a pancreas A Practical Guide to managing diabetes with insulin. And that is by the amazing diabetes educator Gary Scheiner. He is out with an updated edition. So he did this book, it's got to be I don't know, Gary, I'm guessing 10 years old, but he does update it frequently. I think it's the third edition now. It's really a great source and resource to understand your diabetes and your child's diabetes better and more thoroughly, let's say then perhaps you might get these quick endocrinology visits, definitely better than the information you're getting on Facebook. I of course love raising teens with diabetes, a survival guide for parents by Moira McCarthy that has not been updated for the technology that has come out since its publication. However, I don't think that matters. I think that there are so many wonderful ideas, thoughts and ways to recognize how tough a time it is for teenagers and come through that time with your relationship with your child intact. So I really recommend that I know Maura is working on updating it. But even still, it's so good because I think so many people with teenagers, even as we say all the time Oh, it's such a tough time. It's they feel so alone. I still I mean gosh, you guys I always wonder and I call Moira. She would vouch for me. And I'm like I'm not doing this right. It's hard. It's really hard. I also love Sugar Surfing how to manage type 1 diabetes in a modern world by the amazing Dr. Steven ponder, I would be lying if I said we are perfect sugar surfers. But we have used a lot of the principles that are in this book. And it does help you understand so much about how everything works and the dynamic way of managing. You know before CGM. It's incredible to think how much Dr. Ponder was able to do. And now with the monitoring, it's really, really helpful. But I will say you can get this for free. If you're newly diagnosed, I believe it's the first three months it might be six months, I will link it up. But I'm telling you right now, if you get this for free when you're newly diagnosed, put it away for a couple of weeks at least maybe put it away for six months, because it's it's pretty advanced in my opinion, and you got to learn diabetes, you got to learn a little bit more about it before you start worrying about the Delta and other stuff that's in here. But I love Dr. Ponder and highly recommend that one. I get asked a lot about children's books. And you know Benny and I read so many diabetes children's books, so many I mean how many are there in the market but we read them so often when he was little And my favorites probably aren't even available anymore. You know, Jackie's got game was about this kid who was trying it for the basketball team. And then he goes low. We loved Rufus comes home, which is about the JDRF. Bear, there were a couple of that diabetes kind of popped up into lots of picture books that we read if the person in them didn't have diabetes, or the animals in them. But I gotta be honest with you, I struggle to recommend children's books, because I'm not reading them with little kids anymore. And I think they're a really good judge, right? I do. Like when I go low, a diabetes picture Guide, which is a terrific book by ginger Viera. And Mike Lawson. And this is a terrific book, because both of those people live with type one, we had them on the show, you know, I've known them for years I full disclosure, but I think it's so valuable because as a parent of a child with diabetes, who doesn't live with diabetes herself, I don't have that kind of insight. And I really trust those authors to share that information and help a child kind of give voice to how they're feeling when they go low, that sort of thing. It's a fun, cute book, it's, you know, it's not serious. It's not scary. It's really great. And I'm just gonna say, and don't be mad parents, if you're thinking of writing a children's book, just carefully consider it. Look at what was already out on the market. I talked to a lot of people who spent a lot of money to put these books out, you know, most of them are not published by a traditional publishing house. Some are but most are self-published. And that's great. But you know, gosh, there are so many out there right now that are very similar. So you know, we don't need a general explainer, please think about what the need in the community is, what's the unique need, you can fill? And I would say, you know, that's why I like when I go low, because it's written by people with type one, we do need them. I mean, the children's books are great. And there's some wonderful ones out there, but I'll tell you, what I'd like to see is some elementary school and tween level books. That's what we really need around here. We don't need another picture book, we need something that an 11 year old or an eight year old could read and see themselves in, you know, baby sitters club is the only thing I can think of where diabetes is there, but it isn't always the focus, it would be really nice to have something else like that. Frankly, I'd like to see that adult level book as well. There's a couple of authors that have written books were diabetes featured but isn't like the main point. But boy, it would be really fun to see that in like a blockbuster bestseller kind of book if they got it right of course.   Alright, let's talk about some just for fun stuff. years ago, Benny got his years ago on his 10 year diaversary. So five years ago, we gave Benny the I heart guts, stuffed pancreas. I heart guts is a company that makes they're so funny. They make stuffed animal type body parts, I'm sorry, they call them plush organs. And since we purchased a few years ago, they have a few more options on their website. They have socks, they have pouches, I was talking about pouches earlier, there's one that says party in my pancreas. But what I really like about this is you can get something for your kiddo with type one. But you can also find something for a sibling who doesn't have diabetes, right? If you're if you're just looking for something silly, I gave my daughter the heart, right? I mean, knock on wood, thank God, there's nothing wrong with her heart. But it was a symbol of my love for her. And while she thought it was kind of silly, you know, it's a way to include her. So diabetes isn't always you know, the middle of everything. And they I mean, this place absolutely cracks me up. There is so much here. They've got puns as far as the eye can see. So if your kid needs their tonsils out, if your wife is having a knee replacement, these are just really fun. And I may have to go and order a huge amount of the stickers. One of the things I absolutely love is that a lot of businesses have popped up to make toy accessories for kids with diabetes. So you know, you've probably heard like Build A Bear has a diabetes kit, you can get that online. years ago, the American Girl doll kit kind of kicked this off. But there's a bunch of people in the community making this stuff. So I recommend heroic kid, and they make tiny little CGMs for your Elf on the Shelf. If you're into that, or you can put it on an American Girl doll. You can have a libre, they now make a bunch of insulin pumps. It's awesome. I love this stuff. I mean, I can't even imagine if we'd had a real real looking insulin pump for Benny when he was two years old that he could have stuck on his Elmo. Holy cow. So heroic kid is fantastic. And the other thing for kids I wanted to share. And I I tell if you saw my newscast last week, we talked about this I broke this story in 2019. Jerry the bear, and Rufus the bear are now one, there can only be one, there was only one bear. And we talked about this when beyond type one and JDRF announced their alliance in 2019. I kind of jokingly asked like what happens to the bears? And they answered it with a straight face and said only one. We're gonna figure this out because it doesn't make any sense to have to, you know, we don't want to be spending money on this kind of stuff. So what happened is Rufus is now $22 which is a lot less than the starting price of Jerry. And if you're not familiar, I probably should explain. So Jerry, the bear is an interactive toy made by the folks at Sproutel, they have gone on to make things like my special AFLAC duck. They have, I think it's called a purrburl. It's like a little stuffed animal that kind of helps kids kind of calm themselves. It's interactive that way. And but they started with Jerry, the bear was their first product developed when these guys were in college. It's a really smart team. But Jerry is a teaching toy. And there's an app on he's evolved over the years and really looks great. And of course, now he looks like Rufus. So this is Rufus on the outside Jerry on the inside, and it's available for $22. I'm gonna call this next category, miscellaneous, because these were just a couple of things that I wanted to make sure to tell you about. But they don't fit into many of these categories. And the first one popped up into my Facebook feed. But it looks beautiful. It's a ring. It's kinda like a zigzaggy ring. But it's called to my daughter highs and lows ring, it is only $36. It is cubic zirconia. It is sterling silver plated with 18 karat gold. So this is not a you know, super expensive super valuable ring. And that's fine. I think it's great for what it is, makes it a terrific little gift. And it comes with a card that says the ring stands for the highs and lows in life, wear it as a reminder that I will be there for you through all of them. That's pretty cool. And hey, moms, I mean, you can buy it for yourself. Even though we go through some highs and lows, they don't all have to be diabetes related. I want to mention, this is very silly. But this is our miscellaneous category. And these are my favorite things. I think everybody who uses a Dexcom should have a guitar pick lying around. Because you've probably seen the trick to use a test strip to to pry the Dexcom transmitter out of the sensor for a couple of reasons doesn't work for us. I don't know if our test strips are weak or our transmitters are strong. But we have found that a guitar pick does the trick very easily. And I'll tell you the number one reason why we have to remove Dexcom transmitters, it's because then he will start a dead transmitter, or I'll start a dying transmitter. And he'll ignore all the notifications, we'll put the sensor on and clip the transmitter and then the transmitter is dead. So yeah, the guitar pick comes in handy to pry that out and then put the new transmitter in. I also want to recommend a website not a product here but Useless Pancreas.com is a clearinghouse for so many products. They've done an amazing job. We had them on the podcast earlier this year. But since I talked to them, they've added so much. So if you're tooling around and you're not sure even what you're looking for, like I need to get something that'll make stuff stick or I need something that'll they have these two categories, like what will make my kid happy. It's just a neat place to go and find a diabetes marketplace. So I'd like to recommend that because, you know, you go on Amazon, there's so many choices. But they've done a nice job of really trying to narrow it down and give us one place to go. Alright, before I wrap it up here, I did ask Benny if he had any favorite diabetes, things to recommend. And he looked at me like I hit three heads. After thinking about it for a minute or two. He said, The silent button on my pump and Dexcom. So I can't say I blame him for that. I am happy that he has the vibrate only we wish every alarm could be silenced. We understand why they cannot be. So there you have it. That's my very first favorite things episode, I will put a link in the show notes. For every item that I talked about here, I want to make it easy for you to find. Again, if you are haven't mentioned and you have a product and you're not crazy about the link I use, feel free to email me Stacey at diabetes connections.com or ping me on social media and we will figure it out. I want to make sure that people can find your stuff. And if you have your own favorite things that you'd like to list, I think I will put something in the Facebook group and maybe we'll share that in the weeks to come. Thank you as always to my editor John Buchanan from audio editing solutions. Thank you so much for listening. A couple of weeks left in December, we are going to have these Tuesday episodes, as I mentioned, including kind of a look ahead to next year some predictions possibly. And I'm really hoping to get one more technology update for you in before the end of the year trying to get someone from Tandem to come on and talk about that R&D update that I spoke about in the news episode. Last week. They laid out their five year plan for new products and software. But I will see you back here on Wednesday for in the news or if you listen on podcast. That'll be Friday. All right. I'm Stacey Simms. I'll see you back here soon Until then be kind to yourself.   Benny  24:43 Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged

When Gary Hall Jr was diagnosed with type 1 diabetes in 1999 his doctors told him to give up competitive swiming and drop out of the 2000 Olympics. Instead, he charged ahead and became the first person with T1D to take home an Olympic Gold Medal. Hall won Gold in Sydney in 2000 and again in Athens in 2004, adding to the medals he'd won in 1996 before his diagnosis. Stacey caught up to Gary at this summer's Friends for Life Conference and asked him how he got past what his doctors told him. He also shared what he tells newly diagnosed families today. Plus, Benny is home – after a month abroad.. Stacey has and update on her son's trip to Israel and how they managed his diabetes for that time. 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 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 below:    Stacey Simms  0:00 Diabetes Connections is brought to you by Dario health. Manage your blood glucose levels increase your possibilities by Gvoke Hypopen 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. This is Diabetes Connections with Stacey Simms. This week with the Summer Olympics underway and swimming taking center stage this week, I caught up with gold medalist Gary Hall Jr. The very first person with T1Dto take gold. He talks about what's changed since then.   Gary Hall, Jr  0:40 I rely heavily on the convenience of CGM, I mean being able to see where my levels are trending. In order for me to compete at the Olympic levels and do the necessary training, I was manually testing with finger sticks 20 times a day,   Stacey Simms  0:55 when Gary was diagnosed in 1999. He was told he'd never swim competitively. Again, we talked about how he got past that and what he's telling families today, and Benny is home my son after a month abroad, I have a little bit of an update on how it went. 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 always so glad to have you here. You know, we aim to educate and inspire about diabetes with a focus on people who use insulin. My son Ben, he was diagnosed 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. That's how you get the podcast. And one of the fun things about going to diabetes conferences is that you don't know who you're going to run into. It turns out that just a few weeks before the postpone to Summer Olympics were to start there was an Olympic gold medal swimmer at the recent friends for life conference. So great to be able to go back in person finally kind of feeling our way through this and hoping that, you know, we'll see what happens for the rest of this year but hoping that we can get back to it. But once I saw that Gary Hall Jr. was speaking to families, attending friends for life for the first time. I knew I had to ask him to be on the show. So he graciously agreed he met me just a few hours later we did this interview in person you will hear me during the interview referred to how far he had to walk and I mean it. This conference center is huge. And I appreciate him basically meeting me at the farthest point from where he was. And you'll also likely hear some background noise or some music. If you are not familiar Gary Hall Jr. represented the United States at swimming in 1996 in 2002 1004, it's really quite a family legacy. His father, his grandfather, and his uncle all competed on the US Olympic swim team. Paul won silver in 96. And then he was diagnosed in 1999. With type one, his doctors told him he would never swim again competitively. But then in 2000 in Sydney, he became the fastest swimmer in the world. He broke his own record in 2004. And by the time he retired from competitive swimming in 2008, he had won 10 Olympic medals, including five gold. In these current Olympics. There is a competitor from the US with type one, Charlotte Drury. She's not a swimmer. She's a trampoline gymnast. And I talked about her during in the news last week, our last episode hoping to have her on the show in the near future. I'm really interested to hear the difference because it's only been what a little bit more than 20 years since Gary Hall Jr. was diagnosed and told no way dropped out of the Olympics, you'll never do it. And Charlotte Drury was diagnosed and three weeks later returned to her full training as she was diagnosed this year, she was diagnosed right before the trials. So it's a completely different world in these 22 years, let's say in between those diagnoses. So I'm really interested to kind of talk to her in the near future hopefully. Alright, so let's get to it. But first Diabetes Connections is brought to you by Gvoke Hypopen. And when you have diabetes and use insulin, low blood sugar can happen when you don't expect it. That's why most of us carry fast acting sugar. And in the case of very low blood sugar, why we carry emergency glucagon there's a new option called Gvoke Hypopen  the first autoinjector to treat very low blood sugar gvoke hypo pen is pre mixed and ready to go with no visible needle. In usability studies. 99% of people were able to give Gvoke correctly 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.com slash risk. Gary, thank you so much for walking the length of the convention center to talk to me today. I appreciate it.   Gary Hall, Jr  4:50 Yeah, I'm getting my steps in today. I feel really good about it. And I'm also having a lot of fun. Awesome. I'm   Stacey Simms  4:56 glad to hear that. You spoke to the first timer. Families this morning people who have are experiencing their first time to friends for life. Why was it important for you to speak to them? What were you talking to them about?   Gary Hall, Jr  5:09 The antiquated expression is shell shocked. Now, I think it's PTSD. But when you go through a diagnosis, it hits your heart, it hits your family members and loved ones really hard. And you have a lot more questions than answers. And desperate is a word that comes to mind when reflecting back on my own diagnosis, what makes this such a great convention, such a great organization, friends for life, and children with diabetes. And everybody that attends, you know, it's that sense of community here that we're not in this alone, that there are others out there living and dealing with this condition in a similar way that understand your struggles. And that's really all we want. In some ways, it's just to be understood, you know, in such an emotional, traumatic time and experience. And so for first timers, many of them are newly diagnosed, or the parent of a newly diagnosed child, it means a lot to me, because I haven't forgotten what it's like, in that short time after a diagnosis and to be able to offer some support and encouragement and hope, hopefully, hope, to those makes me feel really happy.   Stacey Simms  6:34 But when you were diagnosed, there was no one to lead you through it. There is no had been knowing with your experience or the experience you wanted to have. And you've very famously shared, you know, what a difficult time that was and how emotionally low it brought you. I don't want to take you through that whole thing. But I'd be curious to know, where you found inspiration. How did you get through that time when they said sorry, kid, you're done?   Gary Hall, Jr  7:00 Yeah, it took time. It took time, you know, there are stages of grief, and waited my way through that mark. And found, in some ways, fortunate that I was a top level swimmer prior to the diagnosis. Because I had people reaching out to me, this is unusual, that's not the norm. And so I was able to very early connect with jdrf children's Congress, and children with diabetes. I was here in 2005. When this was a new thing.   Stacey Simms  7:40 I'm gonna ask you about that. I heard there with some some swimming some kids. Yeah, it stands in the pool.   Gary Hall, Jr  7:46 You can count on that when it's here at the Coronado Springs Resort. Disneyland world. Yeah, lots of swimming. Lots of smiles. Good memories.   Stacey Simms  7:57 I bet I bet. But I mean, not to dwell on the difficult, but it's wonderful that they reached out to you. Right. And that is, that is an unusual experience. But you still had to find a way to say to yourself, my dream still gonna happen?   Gary Hall, Jr  8:12 Yeah, there was no certainty in that pursuit. I didn't know what was possible. But this is life, right? Like, we don't know what we're capable of, until we put ourselves out there. And I was willing to try and was really fortunate to connect with Dr. Anne Peters and, and has been here in the past and spoken so many people and she's great. She's, I love her. I love hen Peters. She was the inspiration. It only came in the way of Yeah, let's give it a try. You know, is that that was such a departure from these other doctors that I had initially come in contact with that, um, yeah. If you set your mind to something and try to figure it out, you're gonna have some success, eventually. So that's what we've kind of set to work doing. And like I said, there's no certainty that I would be the fastest swimmer in the world one day, but that's what happened.   Stacey Simms  9:20 Yeah. When you look back at that time, and you think about how you manage diabetes Now, what's changed for you?   Gary Hall, Jr  9:29 The game changer in diabetes management was the continuous glucose monitoring device and Dexcom came out with that device just changed with diabetes management, and it was just almost like, how come I I couldn't have had this 20 years earlier? You know, or you know, I guess it wasn't that long when I but 10 years earlier. I rely heavily on the convenience of the sea. gam I mean, being able to see where my levels are trending, in order for me to compete at the Olympic levels and do the necessary training, I was manually testing with finger sticks 20 times a day. And that doesn't even come close to comparing to you know what the Dexcom has to offer? Yeah, that's been the biggest change area. You know, in 2000. I was diagnosed in 99. last century,   Stacey Simms  10:25 turn of the century turn of the century,   Gary Hall, Jr  10:27 you know, the pumps were really just becoming popularized at that time. And I like pumps, a lot of people swear by them and love them. But it was just I never felt connected. That's the first time I've ever used that. Upon I just caught myself. Anyway, I yeah, I just never the attachment. And maybe it was because I was swimming in the water and just wearing a skimpy Speedo or whatever body conscious, I don't know. But I was able to get over that with when the CGM and in the street behind the speedo location.   Stacey Simms  11:05 We get a little personal on this show.   Gary Hall, Jr  11:06 Yeah, so yeah, but the benefits to me were worth a wearable. Yeah, I live with the pump companies were doing but at the time 2000 everybody was, you know, it was parading in the convention halls. You know, the pumpers, you know, is this big movement and game changer, and you know how diabetes managed, but I found after trying all the pump set, you know, I was getting good, you know, range as long as the testing was the key. And as far as long as I was willing to give myself a shot. You know, pen needles are pretty easy to take. So that's just personal preference.   Stacey Simms  11:46 I just want to ask you about the 20 finger sticks a day, because I remember my son went seven years without a CGM. And it was, especially in the pool, this pruney fingers, it's really hard to do finger sticks. Was that an issue for you? I mean, do you have memories of like, oh, not this one. I'll try this finger or I mean, it must have been slipping around on the pool and the wet test strips.   Right back to Gary answering that question. But first, one of the things that makes diabetes management difficult for us that really annoys me and Benny isn't actually the big picture stuff. It's the little tasks all adding up. Are you sick of running into strips? Do you need some direction or encouragement going forward with your diabetes management, with visibility into your trends help you on your wellness journey? The Dario diabetes success plan offers all of that and more. No more waiting in line to the pharmacy. No more searching online for answers. No more wondering about how you're doing with your blood sugar levels, find out more go to my daario.com forward slash diabetes dash connections. Now back to Gary answering my question about what it's like checking your blood sugar while you're swimming.   Gary Hall, Jr  13:00 So yes, drying off properly is very important. There are times where Yeah, there's just a watery blood thing I don't Yeah, it was juggling, you know, and a lot more to carry and a pocket. You know, I like to travel white empty pockets. So now I've got my smartphone and, and a pen. And so I appreciate probably that more than anything because I you know, bulky pockets, slow you down.   Stacey Simms  13:29 And my listeners will definitely want to know, if you have any tips and tricks keeping that Dexcom on in the water. Everybody's got a different method because everybody's skin is different. I'll give you that disclaimer. Any advice or any thing to share?   Gary Hall, Jr  13:41 Yeah, I know. I use duct tape.   Stacey Simms  13:45 I need to just narrate. He looked around almost ashamedly. Yeah, I know.   Gary Hall, Jr  13:53 I'm just hardcore that way. I guess I'm sorry. I kind of like the roughness of it. And so yeah, when I need securing I get that that silver ducted.   Stacey Simms  14:06 I'm almost Sorry, I asked. You're meeting kids here. You're talking to parents. You know, this is a family conference. There are a lot of adults with type one as well. But I remember when my son was first diagnosed, anybody that looked like they were living well, with type one, I would just great. How did you do it? What did you do? You know, what's the key? And I know there's not really an answer for that. But I'm curious what you say, because I'm sure parents have already asked you.   Gary Hall, Jr  14:30 What do you have to do to stay healthy? And?   Stacey Simms  14:34 Well, I think it goes beyond that. I'll change my question. Beyond keeping your blood sugar in control and listening to your mom. Right and doing everything. Yes, always. I'm curious if there's more to it, because for me, I find that my son thrives the best when he is he's allowed to take risks. He knows that we trust him. And even if he messes up, you know, hopefully it's in a safe enough environment. He's 16. Now, just for context, So we're giving him a longer and longer rope. And I think that's important for thriving with diabetes is letting your kids make mistakes, letting yourself make mistakes. I'm curious if anything like that kind of helped you. I mean, you're somebody who had such high goals that had to help you thrive as well,   Gary Hall, Jr  15:16 well, I've got children, my daughter is 15, my son is 13. Now, and they don't have diabetes, knocking on wood, and they're at an age where I remember from my childhood independence as an important thing. And as a parent, you want to protect them in a shelter them, right. And even more, so when your child has diabetes, we have to let them go, they have to leave the nest at some point, and develop that sense of independence. And so that's difficult for a lot of parents here. Especially newly diagnosed, you know, that really have that instinct to protect and shepherd and, and so then there may be some mess ups, you know, and learning curve, and trial and error process, there's air involved, and there certainly was in my learning curve and diabetes management. Eventually, you get through that, and they're able to take some ownership of it. And I think for me, I've always had a fierce sense of independence. And so that was really important for me, not just in my pursuits in the pool, but also in in diabetes management.   Stacey Simms  16:34 Summer Olympics are coming up. What can we look for? Like, can you tell us anything? We should be like watching behind the scenes or stuff we don't know, or, you know, fun stuff about swimming? I mean, you you made such a show of it.   Gary Hall, Jr  16:48 That sport is entertainment. So don't fault me. No, no. I had some fun. That's all I was doing. horsing around, but it for Look out, I went to the Olympic trials for USA Swimming. They were in Omaha, Nebraska just a couple weeks ago, and saw the team qualify. And what an intense meat that is, you know, they take first place and second place, third place goes home, I was able to see some outstanding swims. I'm a fan of the sport. I've been following it closely my entire life and the guy, the next guy, you know, because there's certainly been a lot of merit of, you know, Michael Phelps, his retirement, he's been a pillar of USA Swimming for so long. You know, who's going to replace that pillar. Caleb dressel is the guy. And everybody will know his name after these Olympics. He's really just a phenomenal swimmer and great role model. I expect good things out of him on the women's side. Katie ledecky, she was around in the last Olympics. She is a sweetheart, she's a darling, she's exactly who you want your daughter to grow up to be like, so Team USA is in good hands. There's a lot of swimmers with them, shoulder to shoulder, representing the United States and we can count on them to do a great job and represent us really well.   Stacey Simms  18:10 And then just one last question before I let you go. Kids listening families listening with type one who want to swim, high school level college level, maybe dreaming about the Olympics. Any advice for them? I guess I'll be fishing here a little bit. But feel free to get specific. Obviously, you want them to follow their dreams?   Gary Hall, Jr  18:26 Yeah. Listen, I say it often, you know, you don't have to win an Olympic gold medal to enjoy the benefits of sport. You know that there is social camaraderie, this built in a support system and you're surround yourself with other young ambitious people that have goals and work hard to chase them down. And, you know, this is an exclusive to swimming. Obviously, I'm a little bit biased. I think it's the greatest sport in the world. It is but you know, we'll we'll accept the benefits of other sports in addition to I love sport, I love what it teaches the data. It's overwhelming kids that are involved on us in a sports program on a sports team average, they outperform their classmates by one full grade in the classroom. You know what it does in stress reduction, and overall health benefit is tremendous. You know, if there was a single drug that had the efficacy of exercise and provided the same benefits of exercise, every single doctor in the world would prescribe that. It doesn't have to be swimming doesn't have to be for a gold medal. But go out and have some fun.   Stacey Simms  19:43 Gary, thank you so much for talking to me. You're listening to Diabetes Connections with Stacey Simms. Lots more information about Gary in the show notes at diabetes dad connections.com or wherever you're listening, most podcast players will let you access the notes. But I do put a transcript in now to every episode. And that can get a little bit long. So if you don't like the way it looks in whatever player you're listening to just head on back to Diabetes connections.com and click on the episode homepage. And I'll be honest with you, I don't usually share this kind of stuff, but I kind of wish I prepared a little bit better. I mean, I didn't realize I was talking to Gary until I talked to Gary. Right. I met him there. And he said, Sure, I'll come on. And then we did the interview. And he has so many other things I wish I had asked about he punched a shark. I guess this dude who's in the middle of a shark attack, the shark was attacking his sister, and he punched the shark. I mean, this is a crazy story, his sister's okay. And he's also been very outspoken about doping during the Olympics. I'd like to talk to him again, maybe we'll be able to do an Olympic Roundtable, one of these days with the other athletes who have competed, but he was very gracious to talk to me and to make the schlep all the way down the hallway to where I was, and you're laughing, it probably takes a good 15 minutes to get where I was in the conference center there at the beautiful Coronado Springs Resort at Walt Disney World. That's where they have the friends for life conference every year in July. All right, up next, Benny is home. Many of you know that I haven't really felt like I could breathe for the month that he was overseas. So I'll tell you a little bit about how we handle that. But first Diabetes Connections is brought to you by Dexcom. And when we first started with Dexcom, back in December of 2013, the share and follow apps were not an option. They hadn't come out with the technology yet. So trust me when I say using the share and follow apps makes a big difference. I think it's really important to talk to the person you're following or sharing with get comfortable with how you want everybody to use the system. Even if you're following your young child. These are great conversations to have, what numbers will you text, how long we will need to call that sort of thing. That way the whole system gives everyone real peace of mind. I'll tell you what I absolutely love about Dexcom share, and that's helping Vinnie with any big issues using the data from the whole day and night, not just one moment, internet connectivity is required to access separate Dexcom follow up to learn more, go to Diabetes, Connections comm and click on the Dexcom logo. All right, so Benny is home. As I am taping this episode. He's been home for just two days. Now we grabbed him up from the airport here in Charlotte and hugged him, I did not want to let him go. It was so nice to see him. So just real quick, if you aren't familiar, then he is 16. He's been going to a non diabetes, sleepaway camp for a month since he was nine years old. And it is with this camp, that he just went to Israel. And he was gone for a little bit more than a month. So how did we do it? How did we let him go with a non diabetes crew of people overseas for all that time, I'm going to do an episode hopefully with Benny soon I want to get his take on this. But I'll just give you an overview basically, of what we planned and how it went. So the main thing to know is that Benny has been doing this for a long time when he goes to this camp. As I said, one month since he was nine years old, we do not use share, we don't use Dexcom, I am not a part of his day to day diabetes care. So I think that's the first big thing to know. And also the first big thing that went into really making sure that he knew what he was doing. He's proved time and time again, that he could do this. It's never perfect, I should probably have led with that. We don't expect perfect blood glucose lines and numbers when he's at camp. That's not part of our expectation, which I think helps a lot. And I am used to not really knowing what's going on for an entire month. Now certainly we check in with the medical staff, and especially when he was younger, we would have phone calls. And we did a lot of prep. And we did a lot of prep here. So we made sure that the staff knew what was going on that he had diabetes, that he will be that he will be a little bit more help probably in certain situations that they had to make sure to store things correctly, not just the insulin, but storing all of the extra diabetes supplies. You don't want dex comms and pump and sets. You know, when you're schlepping across the Negev  desert, you really don't want those in your backpack. So where would we keep them that they would stay cool, you know, that kind of thing. We decided to set up several different profiles in his pump, he uses the Tandem x two with control IQ, which was frankly a very big help on this trip. But we set up a few different profiles, the regular profile, a 15%, less insulin profile, any 30% less insulin profile, and we named them that 15% less 30% less, make it really easy for him to adjust as he got there because there were some times when they were incredibly active, you know, lots of hiking, lots of moving around lots of heat. We decided in advance, you know, had a lot of conversations about this that a staff member would follow is Dexcom. I will debrief Benny more about how this actually went. But my understanding is that the counselor who is known for years followed his numbers but only had the urgent low alert on his phone. So you know, he wasn't getting beeps all day long. And that seems to have worked out very well. I also followed I wasn't quite sure that I wanted to like I said, I don't usually follow him when he's away for that month at camp. But we decided in this circumstance, it would be a good idea. But I had to have a plan. So Benny and I talked about what do I do? Right? What am I supposed to do from North Carolina? If he's beeping in Tel Aviv? So we decided that if he was low for a certain amount of time, if he was high for a certain amount of time, I would text Benny. And if I didn't get an answer, then I had a system set up in place where Okay, I would call the counselor who was following him no answer. I would call the counselor and staff who's in Israel, no answer, I would call the staff in New York. And we would go through that I never had a moment during the month where I had to call anybody or text anybody. But Benny, and I only did that, and we'll talk about the episode that we do together. There were a couple of times where he was not low, but it was alerting urgent low for longer than I would have been happy with. So that's why, you know, when he's low for that amount of time, I texted him, he said, it's fine. We resolved it. That's about it. I mean, what other prep did we do? The prep that we've been doing since he was two years old, you know, my philosophy is trying to get him as independent, as confident as I can with diabetes, although I gotta be honest with you, that has come back to bite me because I did not expect him to be this into 16. And I was, frankly, very worried all month, but he did great. He really did. It's a lot to shoulder. It's a lot to shoulder at any age with diabetes, right at any time. But this in particular was a big challenge for him. I'm really proud of him. And I can't wait to hear although if you know, Benny, if you've listened for a long time, I'm also kind of dreading hearing someone. Say, but we'll be honest with you, and we'll share it all. So hopefully, that'll happen in the next month. I'll have him on the show to talk about his trip. But he is home. He did really well. And he's excited to be sleeping in his own bed. Alright, before I let you go, we are traveling a lot in the next couple of weeks, just some family stuff. And I'm going to be at a podcast conference going to Nashville for podcast movement. So I don't think we're going to have any schedule interruptions. I've got it planned out pretty well. But hey, you never know. Please join Diabetes Connections, the group to stay up to date when stuff happens. I post there first, so you will know what's going on. But I think we're smooth sailing in terms of shows. We are talking to the folks from afrezza and I've got an omnipod update lots of information about what's in front of the FDA right now. Man, I hope that stuff gets approved soon, but we shall see. And then we're going to be back to school here. In the end middle of August, middle of August for my daughter goes back to college end of August for Benny and COVID and delta variant permitting. I'm really hoping to get back to some in person activity on the local level on the national level. So fingers crossed, we shall see. thank you as always to my editor John Bukenas from audio editing solutions. Thank you so much for listening. I'll be back in a couple of days with in the news. Join me for the top stories in the diabetes community. Until then, be kind to yourself.   Benny  28:00 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

It's "In the News..." the only LIVE diabetes newscast! Our top stories this week:  Oral meds to prevent T1D move ahead, racial disparity in peds CGM use, what that Dexcom API news means, a new study with teens and Control IQ and a summer olympian talks about her recent T1D diagnosis. Join Stacey live on Facebook each Wednesday at 4:30pm EDT! Check out Stacey's 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 below:   Hello and welcome to Diabetes Connections In the News! I'm Stacey Simms and these are the top diabetes stories and headlines of the past seven days.  As always, I'm going to link up my sources in the Facebook comments – where we are live – and in the show notes at d-c dot com when this airs as a podcast.. so you can read more when you have the time. XX Our top story.. A new oral drug to prevent type 1 is moving along in trials. Right now it's called IMT-002 – and put very simply - it's meant to block a genetic trait that increases the risk for the disease and is seen in a majority of patients. It's a new way to think about treating type 1 – phase two studies could start next year. It's thought that this could help with other auto-immune diseases as well.. the next condition these researchers want to tackle is celiac. https://www.biospace.com/article/releases/im-therapeutics-reports-positive-results-in-safety-tolerability-and-mechanism-of-action-of-phase-1b-trial-of-lead-drug-imt-002-in-type-1-diabetes/ XX Could the global rise in diabetes have an environmental component? In an Advances in Pharmacology article, researchers say routine exposure to chemicals that disrupt our endocrine systems play a role in triggering diabetes. These researchers say "We often attribute patient's disease risk to individual choices, and we don't necessarily think about how systems and environments play into disease risk," They go on to say so-called lifestyle factors like exercise and diet fail to fully account for "the dramatic rise and spread" of diabetes. https://www.ehn.org/environmental-factors-of-diabetes-2653768475/how-endocrine-disruptors-contribute-to-diabetes XX A new study shows Black children less likely to start or continue with a CGM after a type 1 diabetes diagnosis. These researchers at Children's Hospital of Philadelphia or CHOP as it's commonly known, show that a racial-ethnic disparity in CGM use begins within the first of year after diagnosis. White children were more than two and a half times more likely to start CGM compared with Black children and twice as likely to start CGM compared with Hispanic children. There was a disparity even when broken down by types of insurance – commercial or government. These researchers say social determinants including structural racism, are likely playing a role in disparities in care and outcomes https://www.healio.com/news/endocrinology/20210719/black-children-less-likely-to-start-continue-cgm-after-type-1-diabetes-diagnosis XX Very large survey of women shows that half of those with type 1 or type 2 diabetes are not getting pre-pregnancy counseling. This study included more than 100-thousand women. Right now guidelines from many groups including the CDC and American Diabetes Association recommend providers offer women with diabetes health counseling before pregnancy to cut down on the increased maternal and infant risk associated with both conditions. These researchers hope to develop better tools for women & their doctors. https://publichealth.berkeley.edu/news-media/research-highlights/women-with-diabetes-and-hypertension-dont-receive-pre-pregnancy-counseling/ XX Big increase for time in range when kids use hybrid closed loop systems. We've heard about a lot of improvement, but in this study, the percentage of kids and teens with t1d spending at least 70% time in range… more than doubled after 3 months of using Tandem's Control IQ system. This was a study of about 200 kids, median age was 14, and it was a real world study – where the kids went about their lives, not in a clinical setting, and the researchers pulled the data electronically. Interestingly, sleep mode use increased through 6 months, while the exercise mode was used less over time. Kids with an A1C over 9 saw the most improvement. Those with an A1C under 7 didn't see much of a change. https://www.healio.com/news/endocrinology/20210714/more-youths-with-type-1-diabetes-meet-timeinrange-goal-with-hybrid-closedloop-system XX Dexcom gets FDA clearance for real time APIs.. what does that mean? Third party companies like Fitbit or Sugarmate which have long integrated Dexcom data have been doing so on a bit of a delay. Now they can do so in real time. API stands for Application Programming Interface, which is a software intermediary that allows two applications to talk to each other. Dexcom's Partner Web APIs will allow users to view all of their diabetes care data in one place to enable in-the-moment feedback and adjustments, the company said in the announcement.   https://www.mobihealthnews.com/news/dexcom-gets-fda-nod-its-new-api-integration   XX Cool new exhibit at Banting House – recent guests of the podcast and museum celebrating the birthplace of insulin. They're set to open up again this week – the first time since March 2020 – and there's a new computer generated exhibit. It does work outside.. In the square where Dr. Banting's statue stands. Giving visitors a virtual glimpse at the life and work of the man credited for the discovery of insulin. If you haven't visited – it's in Canada – or seen the museum, I highly recommend a spin around the website, we'll link it up. XX Summer Olympics are kicking off and by now you've probably heard that American trampoline gymnast Charlotte Drury was just recently diagnosed. She found out she had type 1 weeks before the 2021 Olympic qualifying trials, she revealed on Instagram last week. she and her coach pressed on and she basically got back into things within three weeks. She posted this photo of herself wearing the Dexcom. Drury is the first American woman to win a gold medal in trampoline at a World Cup That's Diabetes Connections – In the News.  If you like it, share it. And feel free to send me your news tips. Stacey @ diabetes dash connections dot com. Please join me wherever you get podcasts for our next episode -Tuesday –  I'll share my conversation with Gold Medal Olympian Gary Hall Jr – when he was diagnosed in 1999 he was told to give up swimming. He didn't and he talks about why.. and how he overcame what was conventional wisdom for athletes at the time. This week's show is the story of Jack Tierney, diagnosed in 1959 with type 1 he's 81 and he says he's never felt better. Thanks and I'll see you soon

Jack Tierney has lived with type 1 for more than 60 years. Not surprising, he was first misdiagnosed with type 2 and lived with that diagnosis for almost two years. He shares the story of finally getting the right diagnosis, living well with T1D before home blood sugar meters or fast acting insulins and why he just last year switched to a pump. Stacey talks to Jack and his son Jamie. You can watch the video that brought them to our attention here. In Tell Me Something Good – boy it was great to get back out to an actual in person conference. Shout out to not just FFL but to my local Charlotte community as well. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Previous episodes with people who've lived with type 1 for more than 50 years: Marty Drilling Jeanne Martin Richard Vaughn Judith Ball Check out Stacey's 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 below:    Stacey Simms  0:00 Diabetes Connections is brought to you by Dario Health manage your blood glucose levels increase your possibilities by Gvoke Hypopen the first pre mixed auto injector for very low blood sugar and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. This is Diabetes Connections with Stacey Simms. This week Jack Tierney is 81 years old and was diagnosed with diabetes more than 60 years ago. He had classic symptoms but remembers being shocked to hear the news.   Jack Tierney  0:38 And he told me I was a diabetic and I said to him what's that I had never heard the word or knew nothing about it. And he told me what it was generally speaking, and I'm convinced that the doctor probably did not know the difference between type one and type two because this was January of 1960   Stacey Simms  1:00 Jack was mis diagnosed with Type two for almost two years. He shares the story of finally getting the right diagnosis living well with T1Dbefore home blood sugar meters or fast acting insolence and why he just last year, switch to a pump in Tell me something good boy, it was great to get back out to an actual in person diabetes conference, shout out not just to friends for life, but to my local Charlotte community as well. 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. Okay, so glad to have you here we aim to educate and inspire about diabetes with a focus on people who use insulin. My son Benny was diagnosed 14 and a half years ago, just before he turned to my husband lives with type two diabetes. I have diabetes, but I have a background in broadcasting. And that is how you get the podcast. I got an email a couple of weeks ago from Jack Tierney, who you'll hear from today. And he said check out the 12 minute YouTube video that my son and La filmmaker has created for me, it's called an 81 year olds 62 year journey with type 1 diabetes. Well, that caught my attention. I've talked to quite a few people over the years who have lived a very long time with type one, it really is incredible to think about how they made it work without the things that we consider now like the very very basics right home blood sugar meters, and a one c test fast acting insulins, Jack and his son Jamie have a great story. And I will link up that video that started all of this in the show notes you can always go to Diabetes connections.com. If you're listening on a podcast player, you know like apple or Spotify or Pandora, sometimes the show notes are a little wonky. And the links don't work, just head over to the episode homepage. And it also has a transcription. If you follow me on social, you know that I went to the friends for life conference recently the first in person conference for me since March of 2020. I'm going to talk about that after the interview. But I wanted to say a quick Welcome to anybody new who is listening who found me there who I met at that conference, there were so many new people, it was great to be able to say hi and have some hugs and meet your kids. So I'll talk about that a little bit. And I'll get to Jack's story in just a moment. But first Diabetes Connections is brought to you by Dario Health. And, you know, we first noticed Dario a couple of years ago at a conference and very thought being able to turn your smartphone into a meter was pretty amazing. I'm excited to tell you that Dario offers even more now, the Dario diabetes success plan gives you all the supplies and support you need to succeed. You'll get a glucometer that fits in your pocket, unlimited test strips and lancets delivered to your door and a mobile app with a complete view of your data. The plan is tailored for you with coaching when and how you need it and personalized reports based on your activity. Find out more go to my daario.com forward slash diabetes dash connections. Jack and Jamie, thank you so much for joining me. I am so interested to hear this story. Thanks for making time for me today. Oh, you're welcome. We will hear Jack story and I can't wait to hear you in your own words. But Jimmy, let me just start with you. What made you create that video,   Jamie Tierney  4:19 my dad said he was working on some scripts about his thoughts on diabetes and living with it for over 60 years. He wrote a number of different stories about it and wanted to record that on camera. And so we started doing that and we have all seven or eight sorry, eight tapes, I believe, of doing that. But what I was most interested in is his personal story, his life story because once we got started there was there's a lot of things that I didn't know about his story and about about diabetes in general. And so that's what got me interested and then I wanted to follow up with with his doctor and with his with his brother to get multiple sides and also my mom I'm here to get her side of it. It's one of those things that started off as one thing and changed a little bit as we went.   Stacey Simms  5:06 All right. So Jack, you have lived 62 years with type one. Can you talk about your diagnosis? Because not too surprisingly, you weren't diagnosed correctly right away,   Jack Tierney  5:16 right? Yeah. In the first tape that I did with Jamie, I did talk about what happened with me, I actually came down with type one in 1959. At the time, my mother, who was only 43, had a brain tumor, and I was under a lot of stress, and I was attending college. In fact, when I was home with her after she had to have had a tumor removed, I did get the flu, like so many type ones, it just exacerbated or caused type 1 diabetes, because I weighed 100, I'm six foot four at the time, a weighed 150 pounds, I was down to 125 and peeing incessantly, like everyone who gets type one does. And so I returned to college. What happened was, I was just deteriorating so fast. I was in a small town in Indiana attending college. So I went to the local general practitioner, and he did some tests and told me my blood sugar was over 500 and then needed to be 80 to 120. And he told me, I was a diabetic. And I said to him, what's that I had never heard the word or knew nothing about it. He told me what it was generally speaking, and I'm convinced that the doctor probably did not know the difference between type one and type two, because this was January of 1960. And he was a general practitioner in a very small town. But what he did do was consult with the dietician at the college I was attending, and he treated me I now know pretty much like a type two diabetic because he put me on 1000 calorie diet, your I am weighing 125 and surviving on any did give me a pill, I believe it was called diag and Ace, I really survived that way for about 18 months, just living on 1000 calorie diet and and I was in a really rigorous academic program too. But then as my brother indicates on the video, I came home and he was really worried about me. And luckily I had transferred to the University of Dayton and I was, I got in touch with a wonderful Doctor Who put me on insulin shots. And that made all the difference in the world. You know, I did get back to weighing about 150 in about six months, and you know, took the taking shots. In fact, what I say on the video, when I added it all up, I've given myself probably 42,000 shots over the years, by the way, preparing to do the tapes, Jamie because whenever Jamie does film project, he does extensive background for it. And he gave me a book titled breakthrough about the discovery of insulin by Dr. Frederick Banting. And in fact, when I, I'm going to start to cry, because I read that book in two days. Because it just reminded me of how many kids died before Dr. BAMMY who's one of the greatest human beings that ever lived, discovered him. And it just, you know, I just brought back so much to me reading that book. But the man was a absolute saint for all that he did. I'm sorry for crying. But every time I think of that, man, I just think all of us were type ones are eternally grateful to him back, he's got to have one of the highest places and heaven.   Stacey Simms  9:10 It is incredible, you know, as we're marking 100 years of the discovery of insulin to think that someone such as yourself was diagnosed at a time really not that long after, at a time when many doctors and they still mess this up. But you didn't know the differences between the types. I'm curious, you know, I've heard other people talk about being diagnosed in the 40s and 50s. By medical professionals who kind of, you know, gave them really dire diagnosis or dire outcomes or would say, you know, you're really not gonna live that long. Were you I hear the emotion in your voice. Were you told things like that back then? No,   Jack Tierney  9:47 you know, that's, that's very interesting, because I remember Okay, for example, one of the doctors that I know just casually here in San Diego is Dr. Steve Adelman. And he too, is a type one diabetic. And I remember in paper he had written, he mentioned the fact that he was told that that he had he would live no more than 15 years. And he was diagnosed as a young adolescent. So I know that many people who were afflicted with type one word told, for example, one of my doctors is put me in touch with a two or three other type one diabetics here in San Diego who've had it for 60 years. And one of the women that I talked to she's now 70 and she was diagnosed at age 13. And again, the doctors told her that she would live no more than 15 years.   Stacey Simms  10:50 How did you then go forward? I mean, it sounds like you kind of alluded to it, you know, did the shots it wasn't that difficult, you know, again, the weight back but this was at a time before blood sugar meters. This was at a time where I assume if you were checking it wasn't very accurate. What were you doing?   Right back to Jack answering that question. But first Diabetes Connections is brought to you by Gvoke Hypopen . And our endo always told us if you use insulin, you need to have emergency glucagon on hand as well. Low blood sugars are one thing we're usually able to treat those with fast acting glucose tabs or juice. But a very low blood sugar can be very frightening. Which is why I'm so glad there's a different option for emergency glucagon, it's Gvoke Hypopen. Gvoke Hypopen is pre mixed and ready to go with no visible needle, 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.com slash risk. Now back to Jack answering my question about how he stayed healthy.   Jack Tierney  12:06 Well, I'll tell you one of the tapes that I did with Jamie was on exercise, I quickly realized how important exercise was I just felt intuitively that I would utilize insulin more effectively via exercise. And so as I mentioned on the tape, one day when I was 23 years old, I played 50 holes of golf carrying my own bag. And I used to routinely play basketball because I'm six foot four, three to four hours, sometimes even five or six at a time if I had the opportunity away from my academic studies. So I just found that exercise was so important. And you know, I've been as somewhat of an exercise buff all my life. In fact, one reason why I contacted Yahoo and diabetics the connections because on a news release here in San Diego, I saw where Eric Tozer was running eight different marathons on every continent in the US over a short period of time. Yeah. And he's a type one diabetic. So, in fact, on one of the tapes, I say, whenever I get when two people like Eric, I really follow their story, because it's motivational to me to maintain the exercise level that I like to   Stacey Simms  13:37 let me jump over to Jamie for a minute, as you're hearing your dad talk about, you know, playing 50 holes, and golf and basketball. Growing up. Was he super active? Was this a family thing? Did he make you all get involved? Or was this his thing?   Jamie Tierney  13:50 Oh, no, no, we I've been playing golf and my dad, before I can remember, I was about two years old. And, you know, I was thinking because the US Open was fishing yesterday. And he used to wake up at three in the morning and drive down there and get us a place in line to go play and then then come home and wake me up and take me back there. And then we play golf and maybe come back and do yard work stuff like that. So growing up, I never thought it was any different than anybody else's dad probably more probably quite a bit more active than most other dads I knew around.   Stacey Simms  14:25 Was diabetes kind of in the background, then do you remember as a kid, or you know, as a young adult at all? I'm trying to envision what it would be like because now you know with insulin pumps, we see gems, we see it more. But I'm curious, Jamie, from your perspective, what it was like to grow up with a dad with the type plan?   Jamie Tierney  14:42 Well, I don't always see him do the shots. And you know, I don't remember ever asking him what those were about that I just remember. I was near what it was that he had to take medicine he had to do it every single day and had to do with a needle which isn't fun for anybody. I remember a few times, you know when when we would We are playing golf specifically with hot that he bring like a candy bar with him in case he would start feeling a little woozy he would, you know, he would, he would eat something to kind of revive themselves from there was a couple times I remember when it got a little bit scarier than that where he needed, you know, he needed some assistance needed to get back to the clubhouse quickly to get back to normal. So I was always aware of that. But again, you know, I didn't really know that much about the disease itself and how it works. Other than if you've ever looked a little bit off, it needs to get some, some carbohydrates and and quickly,   Stacey Simms  15:36 Jack, I would imagine and I'm just thinking from my own experience, as a parent and as a daughter are our parents generally don't want us taking care of them. And we don't want our kids taking care of us when we become parents. But type 1 diabetes is kind of always there. Were you consciously trying to think, okay, I don't want Jamie to have this responsibility. I've got this, did that kind of stuff go through your mind?   Jack Tierney  15:58 No, you know, I just felt you know, it's an affliction. Everybody has ailments and afflictions. And, you know, once I realize how valuable and importance for my health, taking shots where it just became second nature to me, and I just felt so much better. But I just told my wife last night, since I've been on the T slim X to in last eight months, I've never felt better in my life, and I'm 81 years old. So I just am seeing the value of the pump, you know, and like Dr. McCallum says on the tape, he was a little surprised that I would take to it but you know, I always respect him so much. He just told me that this T slim is really something and I'm just so thankful I took the leap eight months ago and did it because I feel tremendous. Having done I do feel better now that I'm on the pump than I ever did just taking shots.   Stacey Simms  17:11 Now, what led you to do this? It was was it a conversation with your endocrinologist?   Jack Tierney  17:16 Yes. And and just also, he told me that this pump was exceptional in his point of view. In fact, Stacy, I'll say this to you, I just and so long story but I did talk with Dr. Aaron Kowalski today the president of jdrf in New York, and he told me he's using the T slim the Tandem t slim max to also so that made me feel really good. That maybe this is definitely it just reinforced by decision as being a very good one. Well hearing about this from Dr. Kowalski. Well,   Stacey Simms  17:56 I know Dr. Kowalski, but we chose it to and I gotta tell you, I absolutely love it for my son. It's just the software. It's great. So you were already then using a Dexcom CGM. Because if you're listening and not familiar, the Tandem system works with the Dexcom. Right. Are you using that together? And had you been using a CGM for a while?   Jack Tierney  18:16 Yes, in fact, that's a funny story. You're gonna love this story. What happened was about three years ago, I went to see Dr. McCallum and I wanted to get on a continuous glucose monitor. Because, you know, I'd seen it advertised and it just sounded like the cat's meow. So I'm waiting to see him. And there's a young man waiting to see another endocrinologist. And he says, Dr. Tierney, and I said what and what it was, it was a gentleman, a young man that whose first name is Brandon. And I saw Brandon when he was nine years old to help him get ready for a test to get into a highly academic private school here in San Diego. And he at the time, he told me he was a type one diabetic. And so what happened was he was using the Libre and went over all of the advantages to the Libre before I saw Dr. McCallum, so I walked into Dr. McCallum's office, and I said, Well, Dr. McCallum I think I've made a decision on the continuous glucose monitor that I should be using because I one of my former students told me the benefits up Wow, so I went on the Libre. But then, in fact, at the time that I went on the Libre, the Dexcom, six wasn't available, right. And so it just sounded like the best one for me at the time. But then, of course, eight months ago, when I made the decision to go on the T slim. They told me it was worked in concert with the Dexcom six and that's why of course I switch to that saying it's great to   Stacey Simms  19:58 Yeah, it's it's Wonderful to have these choices. You know, I was gonna ask you, right, I was gonna kind of ask you to take us through the process of going from, you know, no home blood sugar meter to kind of you know what it was like in the 80s. And then, you know, the different insolence, but you like rocketed ahead, and now you're on a hybrid closed loop system. So you've right, it's   Jack Tierney  20:20 so sad, you know, there was nothing available. Thinking back, I did a lot of research before I did the eight tapes that Jamie debts. And one of the things that I learned and I had read a little bit about that, because I read a lot about that diabetic compilations and controls study that was done in 1980s and early 1990s, with type ones. And you know, in fact, they abbreviated the study early because it showed that tight control of type one of your blood sugar is imperative. In fact, I think I in my research for those tapes, that study I think, yeah, it was called the DCC, diabetic comm closed stations control trials dcct. And that thing, that thing, I was concluded early, because it showed how important it was. And I think as a result of that the a one C was developed, and also kilmallock. Because before that I was using NPH, insulin from 1961 until the latter part of the 1990s when human log became available, and also, I got my first day one see back in the 1990s. Well, because that wasn't available. Until you know after that monumental study, the dcct. That's when the a one c came about, I believe. And also more synthetic insulins like human lock, right. And that helped me a lot getting on unilock it really good. But I didn't get on that till about I think 1998 1999 thanks to Dr. McCallum   Stacey Simms  22:13 What does he say to you? It's must be really interesting for him to talk to someone. I mean, my guess is that you educate him about many, many things as well. I'm curious. It just sounds like he's really open minded and really a team player with you to to encourage someone who has you know, not but on an insulin pump has lived with type one for more than 60 years. And then to make that change. Do you feel like maybe you're educating him as well? Oh, yeah, I   Jack Tierney  22:41 think it's mutual. Definitely. In fact, what happened was, Jamie said to me in mid March, he said, Dad, I'd like to interview Dr. McCallum. We've done the eight tapes. But like Jamie just said previously, I'd like to interview Dr. McCallum. So I called me and Jamie had to come down here on another job to San Diego from LA. And he wanted to do it on a Friday afternoon. Well, I called Dr. McCallum and he said, You know, I can't do as it's just chaotic once you guys come in Saturday morning, I couldn't believe he invited us in Saturday morning. We were the only one over there. And so I said to him, Well, can I sit in and listen, because Jamie interviewed him for an hour and a half. And I resist taking in his responses to all the questions, because you know, a lot of what he presented I had not heard before. And so it was just a very good education on my part to hear his responses to Jamie's questions. And also all along. He's been very respectful of my what I've learned. I'll give you one good example. And this is good to know, for every type one diabetic, sure, you got to pay attention to your endocrinologist, but also, you've got to pay attention to your experience. I remember when I first got on insulin back in the early 1960s that I was obsessive compulsive about making sure it was refrigerated. I mean, I was Oh, CD on it. I really was well, I'm reading a Life magazine. And this had to be in like 1963 about a gentleman by the name of Franklin, Billy Talbert. And Billy Calvert was one of the greatest tennis players ever. He was diagnosed in 1929. He lived to be 80 years old. In fact, that's one reason why I made the tapes. I said, Well, Billy made it to 80. Maybe my time is coming up. So I better do something that I've been contemplating doing for a while. But in that article back in the 60s, this is what Billy said, I'm playing tennis all over the world. I can't keep my insulin refrigerated all the time. And so I wasn't as I can, you know, you kind of learn by experience what you can do in the like, I mean, sure you take the advice of all of your doctors. But after that I wasn't obsessive compulsive about keeping my insulin refrigerated when I learned what Billy tailrace experience was. And that's what I found with Dr. McCallum he really paid attention to my experiences with this chronic illness. That's great.   Stacey Simms  25:28 Jamie, let me ask you, you know, you are a filmmaker, what do you hope happens with this video, I could ask you why you made it. I kind of have, you know, there's so many reasons why you would do something like this. But I'm curious to know, why did you do it?   Jamie Tierney  25:41 Well, I mean, my dad asked me to maybe not make exactly a film like this. But I just think it's an interesting story. I mean, when I when I got into it, I mean, the thing that kind of hit me the first thing that he survived for almost two years without insulin, yeah, I don't know how that happened, to be honest. And, and I tried to do some research. And I did ask the doctor, how many people have ever made it for that long, I don't think there's too many have forgot about it. He's my dad, but just from a human interest perspective, that someone could survive like that on a small amount of calories and no insulin with basically the pancreas not producing any more insulin at all. So that I feel like it's, it's pretty interesting, just the triumph of the human spirit, I think, and then having lived for, you know, 16 more years after that episode. And but then also, what's interesting to me is just how he's gone through every single phase of treatment. I know the first two treatments were began in the 20s. But it sounds to me like in the 60s, when he first started, it was basically a similar treatment to the 20. So it's pretty much gone through every single medical advance. And I just wonder, again, how many people are out there who are 81, who are getting started on something technologically advanced, like this pump and take into it? I feel like there's an interesting story there, too. I don't know how many people are are in his in his boat with that, too. Yeah. Can I piggyback a little bit? I'm going to tell you something. I haven't told too many people. As we said earlier, Jamie did fill eight scripts. Well, everything led to script number eight. And in script number eight, what happened was from 1992 to 1995, I was asked to be superintendent of the schools in a school district, that was the worst in the state out of 1000. And when that three year period finished, I believe, and maybe I don't think I'm off on this. It became the best school district in the state. And Jamie was getting his master's degree at USC, and screenwriting. And he said to me, dad, someday you have to tell this story. And I thought that was commendable on his part. In fact, he bought me a recorder. And so for a whole year, whenever I was driving, in my new assignment anywhere, which involved a lot of teacher training, I would record my thoughts. And when I finished, I recorded 55 hours of material. And I vowed to write three books. And I have written those three books on my experience there. And that is my ultimate reason for doing these tapes with Jamie helping me because I want to get a little bit of personal notoriety out there in hopes that a reputable publisher will publish my three books, because I think I've got a story. In fact, I told my wife and I just finished watching Downton Abbey because many of our friends thought it was so good. Well, I said to myself, after I watched Downton Abbey, my three books are an American Downton happy because it's a story that in fact, when I was contemplating doing when I started writing the three books of fellow Superintendent friend of mine said, Jack Tierney, he said, You beat me to it. When I retired, I was going to write a Michener light novel titled School District, because what really goes on behind the scenes in a school district has never been taught and what goes on in a border town. The story of what really goes on a border town has not really been told yet. And that is my ultimate person, poor person. I want these books, hopefully a reputable publisher rather than my working on self publishing, and maybe even three movies be made because I think it has the potential for that. And every month cent made will go to be find a cure for type 1 diabetes.   Stacey Simms  29:57 That's great. Well as we start to wrap this up, I'm curious to ask we on this podcast hear from a lot of adults who have been diagnosed with type one, I mean, sure, there's a lot of children as well, this audience is really half and half. And I'm curious, what would you say? What would you say to somebody you know, who was 60? Or 50? You know, who's not six years old? What would you talk about or tell somebody who's diagnosed as an adult?   Jack Tierney  30:21 Well, I probably would say the same thing. That I would say to someone who's diagnosed that like those four young men that I saw, for SAT prep, one of them was diagnosed at age three, the other two were re diagnosed at age seven. And then Brandon, who I mentioned earlier, nine, they have the ability and the courage to take this head on, you know, it is a chronic ailment, but with taking the advice of your endocrinologist and working at it, it is indeed manageable. I'll tell you what one one of the four young men told me when I met him for the first time, we finished the session on SAT prep. And I knew in advance that he was a type one diabetic, he actually had been diagnosed when he was seven. And he was now 16. And I said to him, I said, Well, probably in your lifetime, there will be a cure. And you know what he said to me? You're not going to believe what he said, Stacey, what did he say? He said, I wouldn't take it, huh? Because he had learned how to do it. And he had met this challenge. In fact, when he said that to me, I said, Jamie knows I've said this a lot. I think a lot of young people today, we don't have fixed rites of passage and societies too much anymore, where you did something notable. And the whole community recognized you as a aspiring adult. So young people are picking their own ways to prove to themselves the world and their families that they can stand on their own two feet. So I think that's why that young man made because he had his rite of passage thrust upon him. And he felt that he had successively done it. And so he didn't want to take him away necessarily. Yeah. Anyhow, that's my degree in philosophy. Coming to the fore here on why he responded the way he did, I've heard my dad tell versions of the story, my whole life, but it's, it's nice to have something that you can condense into 11 minutes and hopefully that people can get a sense of him, but also just how you can thrive and have a great life amidst the challenge of this disease. And as he says that, you know, hopefully, this this treatment is, is great, but hopefully there is a there is a cure someday and stories like harrowing stories of what my dad went through it in something. The future,   Stacey Simms  33:04 Jackie, so playing golf.   Jack Tierney  33:05 Oh, yeah. All right. Oh, yeah. I don't play that well, but I love to play. And what's best of all, I love playing with Jamie and his sister. In fact, every time we play, they're a lot better than I am. And they always give me a good tip. And that helps me to play a tad bit better. One of my neatest experiences as a father. In fact, the three of us, three of us always played on Father's Day. We don't now because Emily's in Cape Cod as being a doctor and Jamie's MLA. But whenever we did, when they were in elementary school in high school, it was one of my fondest memories on Father's Day.   Stacey Simms  33:51 Well, thank you so much for sharing your story. Jamie and Jack, I really I can't thank you both.   Jack Tierney  33:57 Give your best to your son, your 16 year old now. Just neat. He's doing so well. And what a champion he is.   Stacey Simms  34:06 Thank you very much. That means so much. And I appreciate you both coming on to share your story. And you know, we can learn so much from it. So thanks, guys. I really appreciate it.   You're listening to Diabetes Connections with Stacey Simms. More information about Jack and Jamie at Diabetes connections.com including the video with lots and lots of photos, Family Photos, if you'd like to take a look at that. I really appreciate them coming on. So much fun to hear that story and really reflect back and I love that you started using an insulin pump. Just last year, I have a friend who was diagnosed with type one in her late 60s and immediately went out and got the technology she wanted. A CGM right away hasn't started using an insulin pump yet she may never and that's okay but just knowing that the option is there. I think it doesn't matter what age, right? It's all about finding what works for you. And if you're interested in learning more about people who have lived a long time with type one, like I said, at the very beginning of the show, I've talked to several people who've lived, you know, 60, or even 75 years with type one, Richard Vaughn comes to mind. But there are a couple of other people who've been on the show before. And I'll try to link that up in the show notes as well and kind of make a little list if you'd like to go back if you're new to the show, and want to hear more from these incredible pioneers in our community, a little bit more about in person connections and things like that. But first Diabetes Connections is brought to you by Dexcom. And you know, a couple of weeks ago, we were watching TV, and I got a Dexcom alert, Benny was upstairs in his room, we were downstairs. And for some reason, it kind of took my brain back to the days when we basically had blood sugar checks on a timer, we would check during the finger stick the same times every day at home and at school, you know, whatever extra we needed to as well. But it's amazing to think about how much our diabetes management has changed with share and follow. I didn't have to stop the show to get up and check on him. I knew what was going on, I could decide whether I wanted to text him or you know, go upstairs and help him out. Using share and follow apps have really helped us talk less about diabetes, which I never thought would happen with a teenager. Trust me, he loves that part too. And that's what's so great about the Dexcom system, I think for the caregiver, or the spouse or the friend, you can help the person with diabetes manage in the way that works for you know, their individual situation. 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. So tell me something good is usually where I share your good news. And hey, send me your stuff, Stacey at Diabetes, Connections calm or I'll post in the Facebook group Diabetes Connections va group, I'd love to hear the good things that are going on for you, you know, this summer, and as we head into August, let me know what's going on. But for me, the Tell me something good this month was friends for life. I didn't even realize how much I needed that until I was there. If you're not familiar, and I know many of you are joining me because you met me at that conference. But if you're not familiar, it is the largest diabetes conference in the country. This year, they made a joke. It's the largest one on the planet because it's like one of the only ones happening on earth this year. Usually it's almost 3000 people meeting up in Walt Disney World at the convention center there. It's gosh, it's so hot in Orlando in July, but it's always so worth it this year. I think it was about a third I want to say maybe 1000 people were there was a smaller event. But it was still fantastic speakers education a chance to meet the industry people touch insulin pumps, talk to vendors, things like that. There's a lot of stuff happening. And for the kids, you know, it's a chance to see and and adults too, it's a chance to see lots of other people wearing the technology that many feel self conscious about. And usually by the end of the week, and I met a family like this a shy seven year old who didn't want to meet anybody and was almost hiding in her hotel room was jumping in the pool by the end of the conference showing off her Dexcom and her insulin pump. So it's about empowering people with diabetes. It's about educating families. It's about support. As I mentioned, last time, we had an episode I was gonna say last week, but it was two weeks ago. I mentioned a new presentation that I was doing reframe your diabetes parent brain. I thought that went really well. I was really thrilled with the crowd. really terrific people. And they did the presentation. I was always afraid of people gonna play along and give me their examples that everybody was great. So if you are interested, I'll do this on zoom. I'll come to your group. Welcome to your parent meetup. It doesn't have to be anything formal. It's really just about taking the terrible things we say to ourselves. I'm failing my child. I'm the worst Mom, I'm not doing as well as everybody else. How could I possibly have forgotten the blah blah blah. And reframing those thoughts to help us not only feel better, this isn't like a woowoo thing although there's nothing wrong with with changing the way you feel. But this is really actionable stuff about seeing how you are actually living so well with diabetes and you're doing a great job and your child is thriving right under your nose when sometimes you think everything is going wrong. So that was really fun. Sometimes it friends for life or new at the at a conference a couple weeks ago. Sometimes there's big announcements about new technology or you know, people will do presentations and show the new stuff. There really isn't anything like that this year. There's a lot of delays because of COVID. As you know, if you listen you know we are waiting for Omnipod five with Horizon, we are waiting for tandems boltless by phone, we are waiting for Dexcom to be submitted to submit g seven to the FDA. So there's a lot of things we're waiting on. But the community is always there. And I really really needed to see those other moms to hang out with everybody and just to breathe that air again. So thank you so much for everybody who came who said Hi, and who's listening. Now. We also had a really, really great meetup in the Charlotte area and I only share this because you can do this where you live, even if you don't know anybody with diabetes, reach out to your local jdrf or post in some of these Facebook groups post in the Diabetes Connections group you never know maybe there's somebody who's local to you and start talking about let's get together. We had a fantastic meetup. It was parents and kids, and it was adults with type one. Our chapter has really gotten on the ball with adults, they have a whole volunteer outreach now for them. And you know, it's so cool to see people of all ages living well with diabetes, and we all help each other right? So I share that not just to say, isn't my chapter great, which it is shout out to my fabulous friend and Sutton, who makes that chapter home. But also just to spur you on to think about meetups in your own area. They're hard to organize, I do them too. And it's sometimes 20 people come sometimes two people come, but it is really worth it to keep putting it out there and keep trying to find parents, kids, adults in your area, we need our diabetes community, you only see your doctor for teeny weeny amounts of time, every couple of months. Diabetes is 24 seven. So reach out, find people post in the Diabetes Connections Facebook group, if you have questions, we can help you I do a whole presentation on making connections. So I can definitely give you tips and tricks, especially as we get closer to school starting about how to find other families in your area. All right before I let you go, if you have listened for this long as you are listening to this episode, if you listen as it goes live, Benny knock on wood should be coming home from Israel today. As I am taping, it's still a couple of days away. But it will have been a month and I should be picking him up at the airport as this episode is airing. I am hoping that after he sleeps and showers, or sleeps for a couple of days, that he will do a debriefing on the show and talk to me about what it was like not just going to Israel with camp for a month. But what it was like doing all the diabetes stuff completely on his own. At this point. I don't really know a lot. I've seen his numbers. And I think I know what's going on. But I really want to hear it from him. So couple of days left, I can do it. Keep breathing. Oh my gosh, this has been so stressful. And I will share more with you all warts and all. I'll share the honest story, but not until he's back and home safe. All right. Thank you so much to my editor John Bukenas from audio editing solutions. Thank you so much for listening in the news every Wednesday live on Facebook at 430. And then we turn that around into a Friday podcast episode. Do not miss out in the news is like six or seven minutes. It's real quick. I'm trying to get it to five minutes, but I can't get it to five minutes. It's only six or seven minutes long. There's just so much good stuff happening and news to bring you from the diabetes community. So join me every Wednesday live for that or listen for the episode here. I will see you back here in just a couple of days. Until then be kind to yourself.   Benny  42:51 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

We are very excited to catch up with the folks from Beta Bionics! Their fully automated bionic pancreas is called the iLet. They are getting closer to submitting to the US FDA and were able to give us an update on some of the most anticipated features. Kate Farnsworth is a consultant for Beta Bionics currently acting as Digital Marketing and Communications Manager. She walks us through what makes the iLet a very different insulin pump, including: a system that only needs the user's weight (no basal rates or carb ratios), software that will learn from the user and make adjustments, how the system charges, waterproof status and much more. All dependent on FDA approval. Kate's daughter was diagnosed at age 8 and we first spoke in July of 2015 about Nightscout.  Past episode with Beta Bionics: Ed Damiano in April 2016 Ed Damiano in May 2017 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 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 below   Stacey Simms  0:00 Diabetes Connections is brought to you by Dario health manage your blood glucose levels increase your possibilities by Gvoke Hypopen 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. This is Diabetes Connections with Stacey Simms. This week, catching up with Beta Bionics . Their fully automated bionic pancreas, called the iLet has some new features not available in existing devices. And that's helped to ease the burden of diabetes in new ways. Kate Farnsworth  0:33 Working for companies like Beta Bionics  give us the opportunity to reach a much wider group of people and really gives us the opportunity because we are a public benefit company to try and engage those people that aren't being engaged currently with the tools that are available.   Stacey Simms  1:02 That's Kate Farnsworth a well known name from the DIY community. Now with Beta Bionics . She'll give us the latest news on the iLet's development and share some personal stories of her family's journey with type one. Also this week, a big anniversary for the show, as well as for some of our listeners. 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, always so glad to have you on, we aim to educate and inspire about diabetes with a focus on people who use insulin, guys, it has been six years of Diabetes Connections this month, work six years I started in June of 2015. It kind of snuck up on me to be honest with you. I had started the show in May of 2015, actually, but it was just audio that I put on my blog. We didn't get accepted into Apple podcasts and all the rest until June. So that's where I'm marking it from. I had been working on it for months and months. And I kind of wish I had started earlier. But hey, I'm thrilled with how it's gone. Almost 400 episodes now, so many of you wonderful listeners who I hear from all the time. Thank you so much for sticking with me. And if you could just do me a favor, the best thing you could do, I'm not doing much to celebrate this anniversary, I'm not doing a big thing on social or anything like that. But if you could do me a favor, just share the show, share this episode, share whatever episode you like, or just share a link to Diabetes connections.com on your social media, you can put it on your own timeline. Better yet share it in the diabetes Facebook group. It really does help get the word out. You can leave a review that's always fun, but sharing the show itself or telling somebody about showing them even to this day, how to listen to a podcast really goes a long way. So will we be here for another six years? I don't know, man. I hope so. I'm not slowing down. I'm really excited about where we're going. And I love talking to people like my guest this week. Alright, let's get into it. My guest is Kate Farnsworth. She's a consultant for Beta Bionics currently acting as Digital Marketing and Communications Manager. Many of you know Kate from the DIY community. Her daughter was diagnosed at age eight, and we actually first spoke she was on the podcast in July of 2015. Just after we got started, we talk then about Nightscout she helped so many people get watchfaces set up back in the day among so many other things that she did. Now she helps run the Facebook loop to group with 10s of 1000s of members. Now the iLet, as many of you know has been one of the most heavily watched and anticipated devices in the diabetes space. First human testing was done in 2008. At Damiano the company founder has kept everybody up to speed over the years he has been very public showing the progress in presentations at conferences, and he's been on the show a couple of times himself, I will pick up those older episodes. for newer listeners. The iLet is meant to be a dual chambered pump. That means it will hold and infuse insulin and glucagon to help achieve better time in range. Just so we're all clear. Putting glucagon into your body isn't like eating sugar or infusing quick acting sugar like glucose or dextrose. Very simply put, injecting glucagon or infusing glucagon stimulates the liver to convert its stored glycogen into glucose which it can then release into the body. The eyelid is being designed with two cartridges and two infusion sets one each for the insulin and glucagon. But the plan right now is to move forward with just the insulin so just one chamber like a quote regular insulin pump for now. I know that was a lot but after Kate and I finished the interview, we realized that a quick description like that and some information about glucagon because I still explain it I still have a lot of people who are newer in the community who don't quite understand. So I really hope that that helped. Okay, a lot more in just a moment but first diabetes These connections is brought to you by Dario health. And we first noticed Dario a couple of years ago at a conference, and Benny thought being able to turn your smartphone into a meter was pretty amazing. I'm excited to tell you that Dario offers even more now, the Dario diabetes success plan gives you all the supplies and support you need to succeed, you'll get a glucometer that fits in your pocket unlimited test strips and lancets delivered to your door and a mobile app with a complete view of your data. The plan is tailored for you with coaching when and how you need it. And personalized reports based on your activity. Find out more, go to my dario.com forward slash Diabetes Connections. Kate, thanks, thank you so much for joining me, Boy, am I excited to talk to you.   I'm so happy to be here. Before we jump in, my listeners know that I promised this year that in 2021, I was gonna be very heavy on technology. There's so much in front of the FDA, there's so much going into pivotal trials and heading to the FDA that I thought it would be so easy to do all of these interviews. But I realized as we got further along that the very timing of all of this makes it very difficult for the companies to actually come on and share a lot of information because you are limited in what you can say and understandably so. So before we even get started. I know you have a disclaimer that you're probably going to bring out a couple of times during the interview. But why don't you go ahead and say that now.   Kate Farnsworth  6:21 Thanks, Stacey. So the iLet bionic pancreas is an investigational device and it's limited by federal or United States law to investigational use is not available for sale   Stacey Simms  6:34 as we go forward. And as you listen, I should also let you know that I've given Kate the opportunity as I did when I talked to Howard look from tide pool or you know anybody else who is in this phase of their device or technology, the opportunity to kind of let me know when I've crossed the line. So I may ask a question that you can't answer, Kate. But um, I think we all we kind of understand where we are. So I appreciate that. All right. Having said that, give us the lay of the land, if you can, where is the iLet? In terms of development, let's go high level as far as we can right now.   Kate Farnsworth  7:07 Okay, so Beta Bionics  is the company behind the iLet. And we're really different company because we're a certified B Corporation and the public benefit corporation. And that means our company is measured by an independent resource based on how our company's operations and business model impacts our workers, our community, our environment and our customers from our supply chain and input materials to our charitable giving an employee benefits. B Corp certification proves our business meet the highest standards of verified performance. For Beta Bionics . That means the people with diabetes and their loved ones have a seat at the table in our decision making. In that context that we're working to bring the commercial version of the iLet to market. There is currently a pivotal clinical trial testing the eyelid and people living with type 1 diabetes ages six enough. This trial is large and involves 17 different clinical trials sites across the United States. results from this clinical trial will potentially support our application to the FDA for regulatory clearance of the insulin configuration of the device in that population. Once the FDA application is filed, FDA review of 510 k market applications typically take about six months, which includes 90 days of FDA review time and time for response to questions that may come up during the review.   Stacey Simms  8:39 My understanding is that the iLet is a device it's we're talking about an insulin pump here. And I guess what I would call an artificial pancreas or hybrid closed loop system, where it communicates with a CGM to help you stay in a certain range. But the island has always been talked about as needing minimal input. In other words, last time I talked to Ed he was talking about you put your weight in. And that's really the only information it needs from the user to get started. Is all of that still the case? Is that what's in these pivotal trials?   Kate Farnsworth  9:09 Yeah, so that was designed to be initialized by weight alone. It doesn't require users to set curry shows or basal rates for instance, insulin sensitivity factors, the system uses your weight as a starting point and then learns quickly what your unique responses are based on CGM values that receives every five minutes. So with that in mind, we hope that once the FDA clears it, the iLet can be an automated insulin delivery device that requires very few inputs from healthcare providers and people with diabetes or caregivers. For us this solution isn't just about the feature is it's about the benefit that it could potentially give people reduced cognitive and emotional burden. You might recall Adam Brown has talked about the 42 factors that impact blood glucose at Ada conference and in his book bright spots and landmine, those of us in the community can definitely relate based on our own experiences. There are a number of diverse factors that pay people with diabetes on a whim, combine that juggling act with up to 180 diabetes related decisions that people with diabetes or their caregivers make each day. And we really do have a cognitive and emotional workload that those living without diabetes don't face. So our hope is that the iLet is cleared may reduce that burden, since it's offering a solution to type 1 diabetes management without the same numerical input as traditional employment therapy.   Stacey Simms  10:43 Can you speak to the idea of just entering weight and like announcing meals, I mean, I think for those of us my son's used an insulin pump since he was two. So we're coming up on, we're coming up on almost 15 years of using an insulin pump. And the idea of interacting with it less is a little bit mind boggling. You're a mom of a person with type one, you have a child with Type One Diabetes, can you just speak to that idea? You've already talked about the burden being lifted a little bit, but is it difficult for people to kind of wrap their brains around and the reaction of when it does work as well as   Kate Farnsworth  11:16 we assume I can't speak about the clinical trial right now or the results that we're getting. But what I can tell you as a mom of a child with diabetes, is that the cognitive and emotional burden that she feels just having to constantly worry about her diabetes is immense. And I think that we even as parents don't fully understand, you know, how much our kids have to think about diabetes, how much it impacts every moment of every day, and interacting with friends or going out or making decisions on whether or not they're going to sleep over at a friend's. And if there was a device that could potentially relieve some of that burden to me, you know, that's huge, that would be amazing for my daughter. So with the eyelid, when you're entering a meal, you would select whether the meal is the usual amount of carbs for you more or less, it's designed not to require you to count the actual number of cartons over time, the system's designed to learn what that means to you personally. So for my daughter, for example, might have a totally different usual meal than your son. So the system is designed to learn and adapt to each individual user. While there's, you know, that's the practical application. There are other considerations for wide the eyelid has been designed that way. There are 1000s of Americans who don't have access to an endocrinologist, we want him to engage them, we want to meet them where they are and help them get closer to their diabetes goals. I feel passionately about improving the lives of people living with diabetes and easing the burden they live with every day. And research has documented racial and ethnic disparities in diabetes treatments and outcomes. Technology uptake, for example, is much higher for white youth than black or Hispanic youth. As a public benefit corporation. Our goal is to get our solutions to as many people as possible. So we're actively exploring how we can reach the underserved populations and hope to be able to provide all people with diabetes, the same level of care,   Stacey Simms  13:33 I want to make a note and come back to that because there's been such a wonderful, I don't know how to say it, I want to make a note and come back to that. Because years ago, we talked about the DIY community, how it was reaching so few people, it was such a great benefit, but really not for a lot of people. And so many of you are passionate and wanted to bring this commercial product out. And now it's being done. So I'm gonna I want to follow up on that in just a little bit if I could, but let's continue to kind of talk about where we are, thank you. But the idea of no carb counting, to me, would be such a relief, because one of the shocking things that happened in my brain was within the first year of Benny being diagnosed, I think he was too he wasn't eating as much food as he does now at 16. But we realized that carb counting was so inexact and such guesswork, because you could try to be as exact as possible at home. But then you would go to a restaurant, and you really had no idea. And as you listen, my husband owned and operated a restaurant for many years. So you can tell somebody, this dish has this many carbs in it. But first of all, restaurants put so much more butter and fat, and seasonings and things in your food because that's what makes it taste so delicious at the restaurant, which affects how it breaks down in your body. But also, one person can make it to the next day even at a fast food restaurant, it's not going to be exactly the same. So what was the thinking behind it? Is it really just to make it easier on people or did the researchers and the founders here also kind of think that carb counting really isn't that exact   Right back to Kate answering that question, but first Diabetes Connections is brought to you by Gvoke Hypopen and you know low blood sugar feels horrible. You can get shaky and sweaty or even feel like you're gonna pass out. There are lots of symptoms and they can't be different for everyone. I'm so glad we have a different option to treat very low blood sugar Gvoke Hypopen. It's the first auto injector to treat very low blood sugar. Gvoke Hypopen is pre mixed and ready to go with no visible needle before Gvoke people needed to go through a lot of steps to get glucagon treatments ready to be used. This made emergency situations even more challenging and stressful. This is so much better. I am grateful we have it on hand, 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.com slash risk. Now back to Kate answering my question about the inexact science of counting carbs.   Kate Farnsworth  16:03 Yeah, carb counting is not very accurate. People are notoriously bad at carb counting, my daughter might be looking at her meal and see 15 carbs, another person with diabetes might count those curves completely differently, it's really helpful to be able to look at your plate and say, you know, this is usual for me, or this is more for me, this breakfast is way more than I would typically eat. So I'm gonna let the system know about that. Rather than counting the exact numbers in that restaurant meal.   Stacey Simms  16:43 I could talk about that for an hour. That to me is so revolutionary Benny the other day, we got these big cookies, which is you know, a real tree. We don't eat a ton of junk food, but we don't eat super low carb either. But there were these giant chocolate chip cookies. And he was higher than usual later. And I just asked him, I'm like, Hey, I'm just curious, because I don't look at everything he eats or talked about every bolus anymore. So what did you think those cookies were? And he said, Oh, I think it was I think I put in 35. I was like, dude, those were like, 65. Easy, right? And he was what I did. He's had diabetes for 14 years. Right? It doesn't mean he's a bad person. He just didn't. He just took a guess.   Kate Farnsworth  17:19 Yeah, exactly. Exactly. We have the same with my daughter. I don't manage her diabetes, you know, as actively as I used to when she was little, but occasionally I'll ask her, you know, how many carbs Did you think were in that, and then we'll compare it to the package. One really big example that we have, we have those flat pretzels, and they're in a big container. And she'll just pour herself a bowl. And, you know, she guesses on how many carbs are in that bowl. But one time we actually put it on the scale and calculated and she was 45 carbs consistently, because she had been doing this for some time. And I know the same thing happens with cereal, for example, once we move past that carrying a scale with us phase, our eyeballs are the judges and they're not very good. So yeah,   Stacey Simms  18:10 I think some people listening might be saying, Well, why don't you carry scales with you anymore? What kind of parents are you, but I got to say I'm not into adding any more diabetes burden, then we need to so I'm thrilled with letting technology replaced my brain on this, you know, control IQ has done a wonderful job for us and really helping and you know, what you're talking about is only going to help as well. So the big question with the iLet has always been about the dual chambered pump. This was a pump that years ago was talked about and I know you're still working toward a dual chambered pump with insulin and with glucagon in it, but my understanding is that what we're talking about today, what the pivotal trials are all about is insulin only. Can you talk a little bit, just kind of give the listeners an update on what we're talking about in terms of the one chambered pump and what you're working toward, with the dual chamber pump.   Kate Farnsworth  19:00 So the iLet's designed with two chambers, one for an insulin cartridge and the other for our glucagon cartridge. Her initial device after an FDA clearance will have the insulin chamber available to users while the glucagon chamber will not be usable. Once the dual hormone configuration has been also cleared through the FDA through a subsequent 510 k application. The glucagon chamber will also be made available to users. Our hope is that it would be the same device just the second chamber would then become available.   Stacey Simms  19:34 I understand you may not be able to answer this. But if and when it becomes dual chamber pump. The hardware as you say would be the same. Is it just a question of software updates or is that looking too far in the future?   Kate Farnsworth  19:47 It is my understanding that it will be a software update. But we definitely are getting ahead of ourselves there. We have to go through the whole FDA and 510 k application for that company.   Stacey Simms  20:00 Got it. Okay. I'll be I'll tread lightly on Be careful on that. Of course, a couple of weeks ago, I talked to the folks at ziggo log, which I'm still not sure I'm saying correctly, which is the glucagon that I believe you all are working with.   Unknown Speaker  20:19 Is that still the case?   Kate Farnsworth  20:20 Yes. Yes. So we are working with Zealand to provide the glucagon that will be used in the clinical trial for the by hormonal device. And they recently got approval for adaptive glucagon for the treatment of severe hypoglycemia. And they're marketing it under the brand name Tagalog. I hope I am saying that.   Unknown Speaker  20:42 I think we're good.   Stacey Simms  20:43 I guess my only question on that, because I know it's a separate company. But it was so many years that we were waiting not just for the eyelid, but we were waiting for that shelf stable glucagon, so we didn't have to emergencies or for low treatment, reconstitute or kind of open that red box or that orange emergency box. So it was a big relief in many ways when the different types of shelf stable glue gun were approved. I mean, there's three options. Now, I know you can't speak in detail about a lot of this. But I got a question from a listener about how this would work. And the question wasn't so much about the mechanisms or the software. I know that's proprietary. But the question was, you know, it's always risky to use glucagon too much, right? It's also why we don't want to have too many lows in a row that your liver has to help out with because you can deplete the glucagon supply. And I'm curious, this listener wants to know, is there any danger of depleting the body's own sources if you're always giving it from an external glucagon, injection or infusion?   Kate Farnsworth  21:49 So we're deeply aware of the risks of severe hypoglycemia until we know more from a pivotal trial, it would be best at that question to an MD with expertise in glucagon storage and depletion. But what I can tell you is that we're partnering with seeland to provide the glucagon that will be used in the clinical trial for our bio hormonal device. As you know, they recently got approval for his ecolog. And we plan to use that same shelf stable ready to use quizzes on with the island in our bio hormonal pivotal trials. It's really important to note though, that the amount of glucagon that will be dispensed in the iLet will be substantially lower than the amount dispensed in the cycle of injection or prefilled pen. That's because the ladders for severe or hypo rescue and the amount the iLet would dispense is intended to be hypoglycemia prevention. So that iLet is designed to micro dose very small amounts of glucagon as needed based on the person with diabetes CGM readings and the speed of their glucose decline. So it's really important for people to know that they wouldn't be getting a rescue dose of glucagon in that scenario. Of course, the use of Desa glucagon with the iLet will need additional FDA approval for Depo glucagon. And the iLet will also need FDA clearance for dispensing deathly glucagon.   Stacey Simms  23:12 I mentioned earlier that the system and you mentioned this as well, is working with a CGM. And my understanding is that this is Dexcom g six.   Kate Farnsworth  23:21 That's correct. The eyelid is designed to work with the Dexcom CGM, but we're open to working with other CGM manufacturers in the future. Because we understand that choice is really important to people living with diabetes.   Stacey Simms  23:36 That's great. Dexcom g seven is moving forward. I assume that as that moves forward, this iLet will move forward with it.   Kate Farnsworth  23:45 I would think that's a fairly safe assumption. Okay, good answer. Can you tell me   Stacey Simms  23:50 any details? Again? I feel like I'm fishing here. But can I can you tell me any details about the pump itself? You know, we've got Omni pod, which has the remote PDM that is used with it. We have Tandem, which has buttons on the pump, and they're hoping to get bolus by phone pretty soon. Is the eyelid buttons on the pump? Is it a phone control? Anything you can tell me about that?   Kate Farnsworth  24:13 Yeah, so everything currently is designed to be done from the iLet itself. It has a touchscreen interface. And the infusion says at launch will be similar to the inside. So people are familiar with john caustic and our team are working on some of the potential mobile solutions for the iLet's. And we hope to have more information about those as we get closer to launch.   Stacey Simms  24:38 I know that you have had a lot of input from the community because I've seen the the posts that you will have put out there asking for help from the community in terms of I guess what is called human factors and things like that. Can you share a little bit about anything that you've learned just anecdotally about what people like and don't like about using an insulin pump, or what you could any kind of feedback that you got along The way that might be of interest.   Kate Farnsworth  25:01 Unfortunately, I can't share that information. I'm sorry. Yeah, I can talk a little bit about the fact that we have a lot of preclinical data that's available on our website. So if anybody is interested in looking at bat, it's Beta Bionics  calm, and I can't comment on the results of our pivotal trial as it's still in progress. We do hope to have those results later this year and look forward to sharing them. Our goal backed by appropriate research, and continuously advancing technology is to create a solution that people with diabetes don't have to spend so much time micromanaging decisions that impact their condition, and that they can spend more time focusing on other things in their lives.   Stacey Simms  25:51 This is another question from a listener. And this is about changing the reservoirs out and I this would be when it is dual chambered. So do you have to change them together? Or can you change out the one that is empty? And I'll add to that, again, knowing I don't know if you can answer that, you know, right now, we are all told to change out an insulin cartridge within three days, do you have to change the glucagon in a period of time as well.   Kate Farnsworth  26:16 So as designed the insulin cartridge use that the iLet can be changed actually independently of the infusion set. So you can change your insulin cartridge, but not your infusion set. And we intend to have prefilled cartridges and user filled cartridges available if FDA clear, as for the glucagon, that's one of the things we hope to uncover during the by hormonal pivotal trial is the duration that people can leave the Deathly the carton cartridge in the device, and how often it needs to be changed.   Stacey Simms  26:52 You I didn't ask about infusion sets, and I'm not a big fan of any of them on the market. I think that's the weak link of pumping. I'm not alone in that assessment. Two questions there. So when it is dual chamber, do you anticipate two infusion lines and two infusion sets? I assume you're not mixing these two together? Right?   Kate Farnsworth  27:13 Yes, we anticipate using two inpatients.   Stacey Simms  27:16 And then the other question is, can you share what you're using is? Is there a new one coming from Beta Bionics  or are you planning to use one that's already on the market?   Kate Farnsworth  27:24 For our pivotal trials, we're using ones that are very similar to in test that are currently available for no medical. And that is what we plan to use that launch.   Stacey Simms  27:38 Couple other just kind of life style questions, I guess about the pump? How is it charged? Is it a battery is it is an external? How do you charge the pump.   Kate Farnsworth  27:48 So the iLets designed for inductive charging like modern mobile phones, so no cords or cables are required to charge it. The batteries designed to typically last about five days on a single charge and a full charge takes about two hours.   Stacey Simms  28:04 So wait, I think that went by too quickly for my brain. Okay, you mean like lay it on a charger? You don't plug it in? Correct? Do I have to get a special charger? Or can you use anything? Like you said a cell phone charger? I mean, no, I don't use one of those, which is why you're hear me stammering around I'm thinking like, do I get one on Amazon? Do you buy that this is easy. These are easily available for regular people.   Kate Farnsworth  28:25 Our hope is to ship you a charger with the device, but that it would also work with another charger of similar design that you might have around your house. Okay,   Stacey Simms  28:38 and is I'm probably said it's so old fashioned to everybody listening. But you know, what are you gonna do? And talk a little bit about the pump? Is it waterproof? Can it get wet? It is designed to be waterproof. Yes. So wait, now I have to ask. So like I can you can swim with it. It's not just waterproof to a certain amount.   Kate Farnsworth  28:57 So you remember those animals bubbling water displays that they used to have when they had their pumps floating in the water. So their devices were certified the same level that the iLet, we hope that the iLet will be certified to as well.   Stacey Simms  29:15 Very cool. Anybody have those old animist displays? You guys could grab those. I think I was at a display once they had fish swimming in the water once.   Kate Farnsworth  29:22 Yeah, exactly. I that's how it was explained to me by one of our engineers was the old venomous, complex the same way and they had the bubbler with the fish in it.   Stacey Simms  29:34 I think I have a photo because you know, I used to work with animals. And I'm pretty sure I spoke at an event where they had these centerpieces at a table and it was a fish tank and the pumps were ended. I'll have to search that up. And that's great. Let me ask you. I'm sure that my listeners will have many more questions about the eyelet. And hopefully we can speak again we'll get more information as it moves forward. But you and I have known each other for a long time in the community as fellow diabetes parents. Do you mind As a couple of questions about how you're doing and your daughter was diagnosed when she was what, eight, nine years old?   Kate Farnsworth  30:05 That's a incident. He was diagnosed when she was eight. And she just turned 18. Wow, she is now an adult. Oh, my   Stacey Simms  30:13 gosh, how is she doing? I mean, we've already talked about her a little bit, but it sounds like me, you have backed off quite a bit of the diabetes parenting, although we never really back   Kate Farnsworth  30:24 off. Yeah, so she's doing great. She's finishing high school, and she has been accepted to university in September, and she will be living in residence. So we are preparing for her moving out of the house in late August. Wow. Oh, my goodness.   Stacey Simms  30:42 I'm curious. Now, I don't want to get too far off the topic here. But I'm curious, did you all as a family do anything special in terms of college prep, I have a plan in mind. I don't know if I'll do it where like Benny's, second half of his senior year of high school, I really just want to leave him alone, completely, like, stop following him, you   Kate Farnsworth  31:01 know, be here if he really needs me. But I don't know, did you do anything like that. So we have been slowly transitioning and backing off as sort of naturally as the year has progressed. So she takes care of all of her diabetes management side changes all of those things without being reminded by me, which is fantastic. I have started transitioning to her ordering supplies. So I've taught her how to, you know, it's just a login to a website, and you click what you need. And they check our insurance is not very complicated. But I have walked her through how to do that, so that she has a bit more comfort with it, we are really worried about overnight, because she currently does not wake up for low blood sugars. So we've been sort of thinking through how we can do that. And over the summer, we will be backing off that and having her finding ways to get her to wake up to her low blood sugar alarms and try and manage those overnight. Because that is my biggest concern about her moving away.   Stacey Simms  32:11 When you and I first spoke, it was the summer of 2015 was the first year of this podcast. And we were talking about nightscout I can probably dig up the pictures, I had this giant setup that I slept to friends for life that I don't use on the road anymore. When we're back on the road, I'm really excited to see people again, but we talked at the time about the nightscout project and about your help to so many people in designing the Pebble watch face, you know helping people set that up. I'm curious as you look back, I mean, a lot of people from the Do It Yourself community, you already mentioned john kostik, and many others are now working in the commercial space to bring we mentioned this towards the beginning to bring what was better technology, better care. That was really only a very, very small percentage of people to the larger community. Could you speak to that for a minute, it's amazing to me to see how far everything has come.   Kate Farnsworth  33:09 I started out with a real passion for helping people living with diabetes and trying to get you know all of the technology to them. And the problem is that we reach a certain wall with the people that we can reach online, we're sort of in this echo chamber of the same people all the time. And what we've discovered is that technology uptake is much higher in certain populations. You know, I recently did a study and we're finding that people who are Caucasian or higher income are much more likely to be using these tools than the people of color and their counterparts. So working for companies like Beta Bionics  give us the opportunity to reach a much wider group of people and really gives us the opportunity because we are a public benefit company to try and engage those people that aren't being engaged currently with the tools that are available.   Stacey Simms  34:13 When you look back at your time in the DIY community. You know what stands out to you. It was such a buzzy busy time between 2013 and 2016, or even 2017. But as commercial offerings have, frankly, gotten better, you know, I know a lot of people still use the DIY stuff, but it seems like there was an energy and there was a really, you know, a time not too long ago were folks like you were I gotta imagine your phone was buzzing all the time with people asking for help. You know, what was   Kate Farnsworth  34:45 all that? Like? Yeah, it was a crazy time. And, you know, to a certain extent, those communities are still really active. The Loop community, which I run has 27,000 people in it, you know, so there's still A lot of activity surrounding these things. But I think as the commercial solutions come around, we're able to provide solutions for so many more people that that sort of aggressive need dies down from a little bit from the DIY community, because a greater number of people without maybe the same technical expertise are able to find solutions with the commercial offering. So I always said, I would keep doing that volunteer job until a commercial offering was able to put me out of business. because ideally, you know, I hope that commercial solutions like that iLet will be able to serve the diabetes community, so that we don't have to look to DIY solutions anymore.   Stacey Simms  35:49 I always hate asking this question, because I know there's probably not going to be an answer at the end of it. But what is the hoped for timeline here? Can you tell us anything about the submission or or things like that?   Kate Farnsworth  36:08 I love the silence. That's okay. I have to ask. Yeah. So as I said, once the clinical trial is completed, then we will submit for FDA regulatory clearance of the insulin only configuration. Once the FDA application is filed, there will be an FDA review of the 510 k market applications, those typically take six months. And then we will have a launch date. Once that has all been completed. This   Stacey Simms  36:38 might be an odd question. But as we start to wrap it up here, when we go to conferences, like friends for life over the last several years, and Ed Damiano speaks about the the product and the process and everything. Anything that has to do with Beta Bionics  and the iLet is so closely watched, it has just become, I guess the way to say this, you guys have a lot of fans out there in the community. I mean, it might be a small portion of the entire diabetes world. But this is a really passionate group of people kind of waiting for this. Do you as you talk to each other? Like, do you feel the pressure of that? Is that exciting to you? I just would imagine and I can't answer this for you. But going to work, there must be amazing every day to know that people are so excited about the product   Kate Farnsworth  37:25 is absolutely amazing. We definitely feel the community spirit and presence and pressure to deliver you know, every day, we talked about the fact that, you know, we want to help the people living with diabetes who have been waiting for us. And we don't want to make them wait any longer than they have to. And you know, the process has taken longer than we hoped it would. So we're definitely committed to the people with diabetes that we're trying to help. And we have the most passionate team working on this, everybody is so committed. And we have so many people who are touched by type 1 diabetes, either living with Type One Diabetes, or parents of children with Type One Diabetes, or children of parents with Type One Diabetes. You know, we're part of the community. We really feel passionately about this. So we cannot wait to have this device ready for those people.   Stacey Simms  38:27 Okay, thank you so much for joining me and for being patient with my questions. I know as I said, you're limited in what you can say. But I cannot tell you how much I appreciate Beta Bionics  making you accessible and coming in to share this. So and thanks for all your hard work. I cannot wait to learn more. I know you can't wait to tell us more. So thanks so much for being here.   Kate Farnsworth  38:46 Thank you so much for having me. I'm really grateful for this opportunity. And I look forward to talking to you again in the future.   Unknown Speaker  38:58 You're listening to Diabetes Connections with Stacey Simms.   Stacey Simms  39:04 More information at Diabetes connections.com. Or, of course in the show notes. You can always go to the homepage though, to get the full notes and the transcription of every episode. And there's a lot there. as Kate alluded to, there are some other studies, there's some more information, and it's all at Beta Bionics . So I will link that up in addition to the interviews we've done in the past with Ed Damiano, and I'm gonna link up the first interview I did with Kate back in 2015. Because looking back, that made me laugh and this has nothing to do with Beta Bionics  or the pumper or technology or it's my technology. So I use very light technology. This is just a little bit of inside baseball now on the podcast when I travel and I'm going to be traveling again to conventions this year, which is so exciting. I have a small kind of a studio in your pocket. It's a zoom h5 recorder and I use a couple of ATR 2100s if you're into that kind of microphone technology. Light stuff. I don't even need to plug it into a computer. The h5 is its own little studio. But when I interviewed Kate and I interviewed a bunch of people at that first friend for life that I went to as a podcaster, I brought my Yeti. The Yeti microphone is a brick. It's not that great a microphone actually that don't get me started. But it's a brick. And it's so, so heavy. And I brought like a mini studio, I had this paneling setup. Oh my gosh, I had so many things to check when I got on the airplane. And then I was schlepping it around the hotel at friends for life, which is not the most compact hotel. It's a lot of walking. So I'll see if I can dig up some pictures. But Kate was very patient with me as was everybody I talked to that day. Just funny how things do change over six years. All right, we've got some Tell me something good coming up with some fantastic anniversaries, not about the podcast, some listeners who are celebrating very long time diversities and are doing great. But first Diabetes Connections is brought to you by Dexcom. And one of the most common questions I get is how to help kids become more independent. You know, those transitional times are pretty tricky. elementary to middle middle to high school. You know what I mean? Using the Dexcom makes a big difference for us. It's not all about share and follow that's helpful. Think about how much easier it is for a middle schooler to just look at their Dexcom rather than do four to five finger sticks at school or for a second grader to just show their care team their number before Jim at one point Benny was up to 10 finger sticks a day and not having to do that makes his management a lot easier for him. It's also a lot easier to spot the trends and use the technology to keep your kids more independence. Find out more at Diabetes connections.com and click on the Dexcom logo.   And tell me something good this week big time big diversities. Terry Lopes is celebrating 50 years of type 1 diabetes. She was diagnosed at the age of nine. And she made a really nice Facebook post where she talks about being grateful to the people in her life who helped her and looked out for her early on parents, siblings, friends, teachers, camp counselors, nurses, doctors, she says and thankful for those who still look out for me and for the technology that helps me have better control and live much more freely. And also makes it so that no one needs to be told they may only live to the age of 40 when diagnosed as a young child. Terry, thank you so much for sharing this. She also posted that her dad turned 90 recently as well. So Happy Birthday to him, my goodness. But it really is hard to imagine. And I know I'm so grateful to know many people who have lived with type one for 40,50, even 60,70 years. I mean, it's amazing that you know, I don't know them personally, but we've been connected online. And they were all told as children as children, that they would not live a long and healthy life. Our kids are not told that anymore. And I'm so grateful for that. Terry, I'm thrilled that you're in the group and thank you so much for sharing that. Yerachamil Altman shared a different kind of diaverary, he posted that he has been using an insulin pump for 40 years. 4-0! he has got to be one of the first people to use an insulin pump. And we've had him on the show. I know he helped design insulin pumps. I mean, my goodness, what a life. And he always posts we're so thankful for this the old technology. So if you're in the Facebook group, Diabetes Connections, the group I'll make sure to repost this. But I mean, the first insulin pump was basically like a syringe taped to what looks like a big pager, and it just stabbed you with the needle and gave you the Insulet I don't know it just it doesn't look like something that would work. It looks like something Benny would have slapped together from spear diabetes parts when he was in second grade. God bless the people who use this and tested everything and made it so like I just said so that our kids and adults diagnosed today can live long and healthy lives. 40 years with an insulin pump, you're off a meal. Thank you for sharing that. And you know, I love sharing the good news. If you've got something Tell me about it. Stacey at Diabetes connections.com or post in the Facebook group. I love to hear it. Before I let you go quick reminder about in the news, my new feature every Wednesday 4:30pm Eastern live on Facebook. I hope you can join me for that I'm working on some different texts. And to see if I can make it look a little bit more TV newsy. That's been really fun. I got a green screen and oh my gosh, I started out in television. And then I went to radio and then I went to podcasting. And now it's like back in TV reporting. It's bonkers. But I'm also as you know, if you're a regular podcast listener, and putting out those in the news episodes every Friday as well so if you miss it live, or you just want to hear the audio, I definitely want you to have options and like doing this a lot. It's been really fun. I'm trying to keep them short. So if you like it or you don't you've got any constructive criticism, any kind of criticism I can take but come on be nice. Please, please please let me know. I also announced on social media that I have taken a new position I am working with the fabulous folks at she podcasts. I'm Selling sponsorships for she podcasts live, which is coming up in October of this year. I'm going to do friends for life in New York in the beginning of October, and then I'm going to shoot podcasts live in the middle of October in Scottsdale, Arizona. It's going to be a busy month. I also have a big birthday in that month. So we're going to be we're looking forward to October, it's going to be great. But if you are at all involved in podcasting, and you're a woman, please check out she podcasts, I'll put a link if you are interested in reaching 1000s of women who podcast You don't have to be a technology company. But if you want to reach women who are movers and shakers, let me know because I can hook you up. That's my new gig. I'm still gonna be doing the podcast of course, and all my other projects. This is perfect because I get to meet some new people and do some fun stuff. But I don't have to give up anything but maybe some sleep. I don't know. I'm gonna get this done. Alright, thank you, as always to my editor John Bukeas from audio editing solutions. Thank you so much for listening six years. Oh my gosh. I'm Stacey Simms. I'll see you back here in just a couple of days. Until then, be kind to yourself.   Benny  46:10 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged   Transcribed by https://otter.ai

Hay noticias que los medios no te quieren contar... Porque son una sarta de boludeces. SARTA: El tamiz de las noticias que se queda con lo más extraño, gracioso, increíble y estúpido de los medios. NUEVA TEMPORADA de tu podcast favorito! Lichi y Palma vuelven a pesar de las pandemias, porque si hay algo que no tiene descanso ni respeta la cuarentena son las noticias que nos gustan a nosotrxs y a ustedes. Con Lichi Ruiz Díaz y Esteban Palma. Seguinos! Estamos en Twitter y en Instagram: @OigaPodcast Podés escuchar todos los episodios de nuestros podcasts en Spotify o en tu plataforma amiga. Entrá a nuestra página y unite a la familia Oiga por menos de lo que sale una birra! www.oiga.home.blog

It's "In the News..." the only LIVE diabetes newscast! Give us five minutes and we'll tell you about: European approval for Medtronic's new no-calibration sensor FDA considers a drug to prevent T1D New info about gestational diabetes A potential type 1 vaccine moves forward Telehealth update (and what's next after COVID) Join Stacey live on Facebook every Wednesday and watch "In the News..." Live! https://www.facebook.com/diabetesconnections Check out Stacey's 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 and links below:    May 26, 2021 FB LIVE: Starting soon slide Hi, and welcome to Diabetes Connections In the News! A short weekly newscast full of the top diabetes stories and headlines of the past week. I’m Stacey Simms & whether you’re joining me live on Facebook or watching or listening after, I’m here to get you up to speed quickly XX In the News is brought to you by Inside the Breakthrough. A new history of science podcast full of “Did You Know Stuff” In The News this week.. XX Bit of breaking technology news today as Medtronic gets European approval for its Guardian 4 sensor. This is their newest sensor which requires no fingersticks for calibration or diabetes treatment decisions. Medtronic says they’ll start integrating this sensor into the 780G pump and InPen offerings in the fall. No word on a timeline for US approval for the Guardian 4 sensor. MedT Guardian 4: https://investorrelations.medtronic.com/news-releases/news-release-details/medtronic-secures-two-ce-mark-approvals-guardian-4-sensor-inpen XX   FDA advisory committee may give more information and feedback on the first treatment to delay or even prevent type 1 diabetes as early as tomorrow. They’ll decide if Teplizumab is safe and effective. This is not full FDA approval, but it’s another step toward releasing what is an IV drug, given as a single 14-day course of infusions. If you’ve heard us about the TrialNet studies on this on the podcast over the last few years.. that’s what most of the evidence is coming from. Their studies showed a relative 59% reduction in risk for developing T1D and a delay of diagnosis of 2 to 3 years. https://www.medpagetoday.com/endocrinology/type1diabetes/92784 XX Another new treatment for type 1 diabetes moves into clinical studies.. this is a vaccine that looks like it prevents the destruction of insulin producing cells in the pancreas. DiabetesMine has an excellent report on this and we’ll link that up here so you can read the whole thing. But the Swedish biotech company Diamyd has been working on this immunotherapy vaccine for two decades, including a study where they injected it into the lymph nodes of the study participants. Their large-scale Phase III trials will start this year in Europe and the US and will include more than 300 children and young adults recently diagnosed with T1D. Diamyd vaccine: https://www.healthline.com/diabetesmine/diamyd-type1-diabetes-vaccine XX A new long term study shows that women diagnosed with gestational diabetes are more prone to type 2 and type 1 diabetes later in life. It’s been known for some time that gestational diabetes is linked to the risk of type 2.. but these researchers say auto-antibody testing should be considered in order to have a better understanding of all the risks In this study, 50% of women who experience gestational diabetes go on to develop type-2 diabetes later in life and almost six percent developed type-1 diabetes. This 23 year long study was presented at the European Congress of Endocrinology   Gestational diabetes increases risk for T2 and T1 https://www.eurekalert.org/pub_releases/2021-05/esoe-als051921.php More info to back up what a lot of patients have been saying for a long time. If an endocrinologist  is negative or belittling, people stop listening to them and even stop going for check ups and prescriptions. University of Florida Diabetes Institute polled their minority communities recently and found that the main challenge is support from their endo. Or lack of support These researchers looked at people who missed two or more endocrinology appointments, have experienced diabetes-related complications in the past year and receive primary care at a federally qualified health center. The study found when people from minority or low-income groups report negative and belittling interactions with their endocrinologist, they stop going to appointments. These researchers say they want to look at implicit bias in care and do something about it.     Endo attitudes: https://www.wcjb.com/2021/05/21/university-of-florida-study-uncovers-equity-disparity-within-type-1-diabetes-community/ Telemedicine – no surprise – skyrocketed for people with type 1. From less than 1% before the COVID-19 pandemic to about 95% in April 2020, according to study data. In March 2020, clinics in the T1D Exchange Quality Improvement Collaborative began attending virtual meetings to share progress and best practices with the shift to telemedicine. Researchers collected the monthly number of type 1 diabetes visits and HbA1c values collected from a subset of 11 pediatric clinics and two adult clinics from December 2019 to August 2020.   The researchers noted the proportion of telemedicine visits varied widely at each clinic. About 62% of clinics performed both video and phone visits. Zoom was the most popular platform, used by 62% of centers. More than 95% of clinics also used CareLink, t:connect, Clarity or Glooko to view diabetes data remotely. Most centers had diabetes educators, registered dietitians and social workers participating in telemedicine. However, only 15% of clinics said a psychologist participated in telemedicine. All clinics provided continuous glucose monitor training through telemedicine and 70% provided insulin pump training.   Telemedicine https://www.healio.com/news/endocrinology/20210521/telemedicine-visits-rapidly-increase-at-type-1-diabetes-clinics-during-covid19-pandemic but first.. quick break – want to tell you about one of our great sponsors who helps make Diabetes Connections possible. Inside the Breakthrough is a podcast that mixes historical wisdom with modern insight – it’s a science show that’s also entertaining. I love it. The latest episode talks about when a belief thought to be settled science turns out to be wrong. And to illustrate that point they talk about the horse poop crisis of New York City. It was real and it resolved in a way no one expected. Listen to Inside the Breakthrough wherever you listen to podcasts..  Can a game – with competition – really help people live a more healthy lifestyle? A one year trial with people with type 2 diabetes tracks steps and game elements such as points and levels. Some also received social support from a family member or friend. A third group just got the tracking device. Everyone in the study lost weight and lowered their A1Cs but those who didn’t play the game took fewer steps and tracked less activity overall. A lot of gamified apps have come and gone in the diabetes space.. these researchers say the competitive aspect may be the key. Game study for T2 https://www.mobihealthnews.com/news/gamification-step-count-leads-more-activity-diabetes-focused-study That’s Diabetes Connections – In the News.  If you like it, share it. And feel free to send me your news tips. Stacey @ diabetes dash connections dot com. Please join me wherever you get podcasts for our next episode -Tuesday – we’re talking to the folks from Banting House, the birthplace of insulin. Thanks and I’ll see you then!

The very first treatment to prevent type 1 diabetes for any length of time is in front of the FDA right now. Teplizumab has been show to prevent the onset of type 1 diabetes in people shown to be at high risk of developing it. Stacey talks to Dr. Henry Anhalt of Provention, the company behind the filing. Dr. Anhalt is a pediatric endocrinologist and has a lot to say about what this would mean to his patients. Listen to our previous episodes on Teplizumab In Innovations, a round table on insulin pricing with Congresswoman Katie Porter. It didn't have her famous white board, but participants pulled no punches. Watch the full panel 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 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 Dario health. Manage your blood glucose levels, increase your possibilities by Gvoke HypoPen, 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 This week, the first treatment to prevent type 1 diabetes for any length of time is in front of the FDA right now. We're going to talk about the clinical stuff. But there's a lot of emotion wrapped up in this development as well.   Dr. Henry Anhalt  0:40 I was trained to make people who have type 1 diabetes feel that they're never doing a good enough job, that they're at risk of developing all these complications. And you know, when you get to the point in your career, you realize that not only did that not help hurt, and then really being in a position to hopefully be able to make a fundamental difference and how that goes down. It's really hard to articulate, I have to say,   Stacey Simms  1:05 That's Dr. Henry Anhalt of Provention, the company behind Teplizumab. He's also a pediatric endocrinologist, we'll talk about Teplizumab what is in front of the FDA and why this treatment is so promising. In innovations. A round table on insulin pricing with Congresswoman Katey Porter didn't have a whiteboard as She's famous for, but pulled no punches. You're gonna want to hear this. 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 always so glad to have you here. As you know, we aim to educate and inspire about diabetes with a focus on people who use insulin. I'm your host, Stacey Simms, my son, Benny 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, but I have a background in broadcasting. And that is how you get the podcast. We are coming up on year six of the show. And I gotta tell you, I don't get I don't get too excited about breakthroughs or treatments anymore, because we've covered a lot of stuff that frankly hasn't panned out the way we had all hoped. But this is a little bit different. Because Teplizumab is a drug that has already been shown to prevent type 1 diabetes for three years. And for some people, they are coming up on four years. What does that mean? How do we know it's preventing it? Why is it so exciting? And you know, could this mean a breakthrough for everyone with type one, there's a lot to unpack here. So we'll get to that in just a little bit. But we've talked about Teplizaumab before with the folks from trial net, I'll link up this previous episodes at Diabetes connections.com. There's always an episode homepage for each and every episode, which more recently will have the transcription. But for every episode has important links and more information for you. quick heads up. If you are listening as this episode goes live tonight, Tuesday, I will be with a JDRF with a couple of chapters. Or maybe it's just one chapter now things have moved around a lot for JDRF. But I'll be with the Nevada, Arizona and New Mexico chapters tonight, talking about the world's worst diabetes mom, we're going to have a fun discussion about the book. And if you are in one of those chapters, you're going to get the paperback for free. If you're not in one of those chapters come along. Anyway, I've got some audio books to give away. It's always just fun to talk to you. I'll be reading from the book but having a discussion as well type one talk, it's different times because of the different states and because of where I am. So it's 530 in Nevada and Arizona, and 630 in New Mexico, it will be 830 here in Charlotte, North Carolina, I may be in my pajamas, but I hope you can join me for that. And again, I'll put a link and I've got that out on my social. I've been talking about that on social media for a couple of days. I've mentioned a couple of times this year that we're focusing on technology. And a lot of that is because 2021 is going to see a lot of FDA approvals, things have been backed up because of COVID. Um, so this year, and next year, I think we're going to see many things kind of bunched up. But some of that technology isn't mechanical, right? It's medical or what we would think of more as biological perhaps. And that's what we're talking about today. But first Diabetes Connections is brought to you by Dario health. And over the years. I find we manage diabetes better when we're thinking less about all the stuff of diabetes tasks. That's what I love partnering with people who take the load off on things like ordering supplies, so I can really just focus on Benny, the Dario diabetes success plan is all about you all the strips and lancets you need delivered to your door one on one coaching so you can meet your milestones, weekly insights into your trends, with suggestions on how to succeed. Get the diabetes management plan that works with you and for you. Darrius published study Demonstrate high impact clinical results, find out more go to my dario.com forward slash diabetes dash connections.   My guest this week is the executive director of medical affairs for Provention Bio. He's also a pediatric endocrinologist and Dr. Henry Anhalt is also very involved with Camp Nejeda. He's on the board there. I believe he was the medical director at one point, but we have spoken to Dr. Anhalt before in that capacity. My cousin goes to camp there he did growing up, I will link back on our episode about camp with Dr. Anhalt because it's a really good one. And especially if you're thinking about diabetes camp, if your local campus happening this summer in person, that's a good one to listen to as well. Provention is a biopharmaceutical company dedicated to autoimmune disease. And they are applying for what's called a biologics license application for to please him up for the delay or prevention of type 1 diabetes in at risk individuals that is in front of the FDA right now. There is a gold date here that the FDA has assigned to them of July 2. So we shall see what happens between now and then. But there's an awful lot to talk about unexplained. Here's my discussion with Dr. Henry Anhalt.Thank you so much for joining me and welcome back to Diabetes Connections, it's good to talk to you again.   Dr. Henry Anhalt  6:21 Likewise, Stacey, it's a delight to be back with you again.   Stacey Simms  6:25 Well, I'm so interested in this news, which you know, it's hard to get excited after all this time for me. But this is exciting news. But let's kind of set the stage. If I could talk to me a little bit to just start off here. My listeners are familiar with T one detect the program that JDRF came on the show and talked about in in late December about a new screening initiative and prevention is the company that is I guess, you know, doing the heavy lifting here and doing the work to screen people. Can you talk a little bit about the importance of this project?   Dr. Henry Anhalt  7:00 Well, Stacy, the first thing I wanted to do is to point out that in addition to the T one detect program, we have the type one tested.com website, which will also give people who are going to that website, additional information about screening, it's important that we take a shift in how it is that we look at type 1 diabetes. And as we all know, mostly everyone's experience. And certainly, that's been the case with my patients as a pediatric endocrinologist, they present and they come to attention when they've been having symptoms, when they're not feeling well, when they are noticed to be losing weight. And a parent says, gee, something's wrong, and they go to a doctor and oftentimes are going from one doctor to another until unfortunately, kids and adults are getting sicker and sicker and then ultimately end up in an ICU setting. That's what we used to think about as type 1 diabetes. But we now know that type 1 diabetes is really in three stages, we know it's an autoimmune disease. But the three stages are really important to highlight, because the first stage is when someone has two antibodies that are directed at the pancreas. And those two antibodies are amongst a number of antibodies. But if you have two or more, you have stage one diabetes, even in the absence of having any symptoms or abnormal blood sugars. And we'll come back to that in just a second. Stage Two is when you have those antibodies or more, and you'll have some abnormal blood sugars, but not high enough to either have symptoms, or for anybody to even recognize. And then stage three is, as I mentioned a moment ago, when typically people have symptoms and they end up sick unfortunately, and seeking medical attention. We won't know whether or not someone is in stage one, stage two or stage three, unless they do things like you just suggested and participate in the T one detect program or have their antibodies tested so that they can identify and understand where they are along that continuum. And so we now classify type 1 diabetes as soon as you have two more antibodies, but even in the absence of having abnormal blood sugar, so it's important because as therapies become more and more available, and we know that there are a whole bunch that are now coming along, some of them are pending approval. So for example, Teplizumab which is before the FDA right now. And we hope that the FDA will look at the body of evidence and the safety and the efficacy. And we currently are targeted to have an approval date in the first week of July. But it's also important to realize that there are lots of other medications that are soon to follow, that may also be of use to people who are along this continuum. for us and for the people that we care about. In the type one community, the ability for a drug like Teplizumab provided that the FDA looks at the data and says, yep, we believe it's safe and effective to prevent people from progressing from stage two to stage three. Without that, we won't know who would be a good candidate for that kind of intervention.   Stacey Simms  10:58 I always get a little confused. And I know that for somebody like me, who's a lay person, it seems like we're early on in the research. But the question I always have about the antibodies is I remember years ago with trial net, and they would say things to us like, well, years ago for me when I was learning about trial that they would explain it like, well, kids usually get tested more often than adults, because things can change with children. If somebody has the antibodies, do they always develop the symptoms of type 1 diabetes? Or do we not know that yet,   Dr. Henry Anhalt  11:28 the uptake of testing or the routine screening for people at risk has not been adopted widely. And that's important to highlight. And that's why the JDRF is in the middle of this educational campaign is because the fact is that for all intents and purposes, our colleagues that pediatric endocrinology adult endocrinologist are not thinking about getting antibodies, and certainly in children who you would expect, are at greatest risk. Those who have a first degree relative with type 1 diabetes, a sibling or a parent where we know that their risk of developing type 1 diabetes is 15 fold greater than the general population that it would be more widely adopted. But that's unfortunately not the case. And in adults, are point people don't think so one of the challenges with adults who ultimately develop type 1 diabetes is that the family practice dogs or the endocrinologists who may be are not involved, likely not to be involved, because they are in seeing people who are adults who develop diabetes until their 50s, or maybe their 40s. And they're not thinking about type 1 diabetes, the greater challenge with adults is around the assumption that if you're in your third decade or fourth decade of life, that you do not have type 1 diabetes, but we know that that's not the case, because people into their 50s and 60s are developing type 1 diabetes and are continuing to make insulin but unquestionably have type 1 diabetes.   Stacey Simms  13:21 I'm curious, when T one detect was announced, a lot of people in the diabetes community thought and I agree with them. It was so interesting, it was such a great idea. Like let's get more screening, let's get more screening. But when I talked to JDRF, they said no, we will we want everybody in the diabetes community. But we want people outside the diabetes community to start thinking about this, what can be done to try to push this message into families that you know, don't think that they have to worry about diabetes? How are you all doing that?   Dr. Henry Anhalt  13:49 Yeah, what I really focus on Stacey is the folks who are at risk, okay. And those are the ones with first degree relatives, because we know we have data from global programs where they're doing population screening, they're screening everybody, not only second and third degree relatives of people who have type one, or even first degree relatives, they're screening entire populations. And that's terrific within the context, at least right now, of research programs that are well funded. But we're facing a battle ahead of us as we get people to adopt. And we get the payers and the payer community to recognize the importance, which is part of the educational effort. However, we really need to focus right now for the hearing now, because that's achievable, attainable, and the therapeutic agents that are either before the agency now or that are coming are the ones that are going to be the most likely to benefit. And that's why I think right now at risk is the most important population to look at. Got it.   Stacey Simms  14:57 Let's talk about what's in front of the FDA. I remember A couple of years ago trying to pronounce Teplizumab, and then getting really I know, but getting really excited as it seemed to, and you please fill us in, but it looked like the research was showing this is preventing that movement, as you said, from stage two to stage three, so people have the antibodies that show that they have type 1 diabetes, but it kept them from progressing to showing symptoms for two years. And then it looked like three years recently, am I getting all that right? Right back to the doctor and hold in just a moment. But first Diabetes Connections is brought to you by Gvoke Hypopen, and almost everyone who takes insulin has experienced a low blood sugar that can be scary. A very low blood sugar is really scary. And that's where Gvoke Hypopen comes in. It's the first auto injector to treat very low blood sugar. Gvoke hypo pain 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 different, 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.com slash risk. Now back to Dr. Anhalt. And I just asked him if I was kind of getting your right that Teplizumab had delayed the onset of type one in people for up to three years.   Dr. Henry Anhalt  16:29 You're getting that spot on Stacey. And I think that here, it's important to stress that how do we know that they're actually having this delay? Are there any markers that we can look at. And C peptide is the key, because for the listeners, it's important to highlight that this molecule or this protein c peptide is a measure of how much function your beta cells have, how much of your actual insulin is being produced. And the studies have shown and the authors concluded that in fact, those treated with Teplizumab had stabilization of their c peptide production, and in some cases actually improved c peptide confirming that the beta cell function is being preserved. And suggesting I may add that beta cell function is being restored. So it wasn't only this delay, but it was a delay that was marked by a direct measurable compound or protein that indicates beta cell health and beta cell function.   Stacey Simms  17:40 When we talk about Teplizumab, what is that? It's I assume it's more than, you know, a pill that you would take once and never have to do again. Is it a treatment? What how do you how do people take it?   Dr. Henry Anhalt  17:50 So Teplizumab and I had a really hard time pronouncing that I started working at Provention Bio in December. And I'm finally getting around to it right. And it wasn't only narrow, actually that I heard about Teplizumab when I was working back in 2008, at a hospital in New Jersey, there were these clinical trials ongoing with tech lism ab. And at the time, I became really familiar and saw what the potential that this drug had. But to answer your question directly Teplizumab is administered by IV infusion over a period, at least in the trials over a period of 14 days as one single infusion. So that's the way that the trial that we're talking about the data that we're discussing, that trial had a 14 day single infusion, so IV infusion every day for 14 days straight. That was the data that we talked about was the outcome of that trial. Ultimately, though, the FDA will make the decision of based on the data that exists, how many days of infusion, etc. Got it.   Stacey Simms  19:14 But to be clear, when we're saying it's three years later, those people that they're measuring three years later had, it's still from those first and only two weeks.   Dr. Henry Anhalt  19:23 That is correct. So people had a two week infusion, and this population was followed out. For quite some time, actually, the recruitment took seven years, but this population has continued and when you have this rolling admission into a trial, it becomes a little bit difficult to to characterize, but suffice it to say based on the appropriate data analysis, that's the conclusion that the authors came to and obviously incredibly encouraged by those results. So with the follow up time, We have nearly a year later, it shows now approximately three years,   Stacey Simms  20:05 I may be jumping to conclusions and correct me if I'm wrong. But I'm sitting here thinking, if my son Benny had gotten something like this at 23 months, and we could have delayed the onset of type 1 diabetes, until he almost went to kindergarten like that, to me, I know that there's more implications down the road, but just the idea that he would be able to communicate a little bit better. With me, maybe he could pronounce diabetes, there would be some other things that we could have some really difficult stages that we could have skipped. And I know that you're looking for a lot more than that going forward. But man, that's so remarkable to think about. And I know everybody listening is thinking in their own families, the milestones that can come in three years, it's really interesting stuff.   Dr. Henry Anhalt  20:49 Stacey, I have to pause when I listen to you tell that story. Because for me, I have only a glimpse of the burden that people living with type one, or parents or caregivers experience, I have a glimpse, because I have the privilege of stepping into the sanctity of a family and being open to hearing these things. But to your point, what is that? What does that mean to a child or to a family that you can have a delay of two years or three years? Or even longer than that? What does that mean? So this ability to do that the data indicating that this can do that can do exactly what you're talking about? It can delay to a time where kids can be more able to communicate signs of hypoglycemia, a kid in college, perhaps, delay until after college, and so on and so forth. So how do you put a measure on what that means for a family? You know, what that means? Two years or three years being insulin independent? How can you describe that to someone who doesn't quote unquote, get it? What that means to a family? So I know, just like you would, from personal experience, what I've heard from my patients and their families, how much that could potentially have meant, and how much that can mean to them going forward?   Stacey Simms  22:31 It really is. It's, I was gonna say, it's fun to think about, I'm not sure that's the right way to say it. Because in my mind, it's kind of fun, because I think about how silly my son was at that age, but it is really encouraging to think about, I'm curious, are there any concerns, side effects, anything that people need to be aware of when it comes to the prism app?   Dr. Henry Anhalt  22:54 So you know, I think that every drug has potential risk and benefit. And we have to be fair and recognize that, however, in the data that's been published, from the trial that we've been discussing the tn 10 study, it was shown that the side effects were manageable, that they were easy to address resolved on their own. And that's consistent with all the other studies that have used Teplizumab. So from our perspective, and looking at the data, we feel that it's appropriate to say, yes, there is always a risk, that the side effects that were seen in any of the trials were expected. And were easily manageable   Stacey Simms  23:48 as we wait to see what the FDA will do. Are you still looking for people to be in studies?  You know, my audience is always very interested in that. Are there more studies that people can take part in?   Dr. Henry Anhalt  24:05 Yeah, so we currently have a study ongoing, it's a multinational study multi site in the US called protect. And this study, as opposed to the data that we've been talking about that showed you can prevent progression from stage two to stage three. This is a study for people who are newly diagnosed between the ages of eight and 17 within the first six weeks, and I would urge people if they have any questions, or they need any information to reach out and Stacey you and I can talk about what the best way to have that information or those queries directed because when we talk to people about going online and looking at clinical trials.gov it becomes As a very, very difficult website to navigate. But suffice it to say that this is a trial where kids between the age of eight and 17, newly diagnosed are given an infusion or placebo of Teplizumab. And they are given another dose, about six months or a year later. Again, this is an infusion. However, it's a 12 day infusion, rather than a 14 day infusion. And there are two infusions over the year. And in that study, were measuring c peptide. And as I mentioned earlier in the podcast, c peptide, is a measure of beta cell function. And so the most important measure for us is beyond hemoglobin A1C how are those beta cells working? How is the residual beta cells producing insulin at this point? And how do they produce insulin after the treatment has given as measured by what we call area under the curve of C peptide production? The amount of C peptide over time, responding to drinking a whole lot of sugar, and seeing where it is that the that the C peptide is produced? I think that that's really an important piece. I also, Stacey, if I may take liberty and talk about Provention Bio for just a moment. Yes, please do. Because it comes back to camp a little bit. And you may wonder, like, what's the connection? When I first started at Provention Bio, we had a town hall. And you know, if 45, 50 people I don't remember. And the CEO, Ashley Palmer was talking about the importance of us understanding the type one community and I was like, okay, you know, that's words, know, sounds good. And I said, Okay, is a company dedicated to type one? Okay, that sounds good. And so I chatted the group, and I said, you know, I'm on the board of Camp Nejeda, most of us live in the tri state area, I'd be more than happy to host you and to have you guys pink benches, and, you know, do all kinds of cleanup the garbage in between sessions. And he said, You know, that's not here. That's part of your job. And I said to myself, I've worked in other companies that have been in the diabetes space, I have never heard a CEO get up and say, this is your job. It was mind blowing. And I knew then, you know, I was in the right place. Right. So with that sort of as a backdrop, we are really committed to type one. The innovation here is, I think, a landmark in the fact that it will be the first disease modifying if we get the approval, which we hope, the first therapeutic intervention in type 1 diabetes, since the development of insulin, and potentially the only one that is going to be disease modifying. But we're not just there. And as we spoke about, were in front of the FDA now with the hope that we'll get approval for the at risk population. But we're also in clinical trials to see the ones who are newly diagnosed. So if unfortunately, they've gone on to stage three or symptomatic, or we're also working on a vaccine for coxsackie virus. And so coxsackie has been thought of as a precipitating agent or, or an infection that could potentially provoke or create an immune response that ends up being adversely affecting the pancreas. And the crazy thing is that as a pediatrician, first we would see coxsackie virus all the time. But you know, I have the good fortune of working in a company with a lot of really smart immunologists and I joke and I say, you know, if I would have known immunology was so interesting, maybe I would have paid more attention in medical school. But the fact is, here's another way that we're looking at type 1 diabetes, and the commitment there to innovation is truly remarkable. And I would be remiss if I didn't have the opportunity to state that on this podcast, because I think that speaks to the motivation and it speaks to the genuine commitment to people and their caregivers living with type one.   Stacey Simms  29:53 You mentioned camp, and as we've mentioned a couple of times here you are a pediatric endocrinologist. So you Between the two of those things. You've seen a lot of families over the years, you have probably had a lot of nervous moms and quiet dads in your office with little kids too, grumpy teenagers and independent young adults. I'm curious when you talk about something like to please him on. And you mentioned, as you said, this could be the first therapy, disease therapy it for type 1 diabetes. I know you don't have type 1 diabetes, but boy, are you part of all of those families? Can you speak a little bit about what that means to you?   Dr. Henry Anhalt  30:31 Well, I often joke with people that, you know, I would be more than happy to do anything, including working in my parents’ lingerie store, then taking care of people with type 1 diabetes, not because I hate type 1 diabetes, I do. But it's because I see what happened, what families go through. So for me, what it means to me. If again, if we get approval, I'll feel like I've I finally was able to do something, you know, when you get to the point in your career, when you're working with families who have type one diabetes, and you come to the honest realization that you can't fix it, you no surgeon can go in there and cut it out. But you can't fix it. And the burden really sits with the family, the grumpy teenagers who didn't ask for this. So we're dealing with the intimacy issues, college issues, you name it, the high school kids who are trying to deal with their all the complex issues of psychosocial adjustment to high school and body image, etc. It's unbelievable. So for me as a treating physician, anything, anything. And it's not only templates, a map, but anything that could make them living with diabetes just a bit easier to lift, a little bit of the burden would be incredibly meaningful to me. And that's sort of how I got into this, I was trained to make people who have type 1 diabetes feel that they're never doing a good enough job, that they're at risk of developing all these complications. And you know, when you get to the point in your career, you realize that not only did that not help it hurt, and then really being in a position to hopefully be able to make a fundamental difference and how that goes down. It's really hard to articulate, I have to say,   Stacey Simms  32:31 Did your parents really own a lingerie store?   Dr. Henry Anhalt  32:33 They did. Olga’s corset and specialty shop two Eastern European immigrants who came here penniless trying to build a life for themselves in the golden land.   Stacey Simms  32:45 Isn't that marvelous?   Dr. Henry Anhalt  32:46 That's wonderful. It sure is. It sure is. Yep. Yep. All they wanted us to see their kids, you know, get an education. And of course, you know, me becoming a doctor. I mean, my dad almost ran up to the podium when I got my diploma. He just couldn't contain himself. So yeah, absolutely.   Stacey Simms  33:05 All right. I think we've got everything and more.   Dr. Henry Anhalt  33:08 Yeah, I mean, I would leave you Stacey with, if nothing else, to really, really get the word out for people to screen for dogs to really hear from their families. You know, why don't you screen, I have another kid that to us. And I think to the whole community, now, there's potentially something that can happen. You mentioned trial net, and trial net has done an amazing job in getting tech lism ab to where it is now. And they've done an amazing job at moving the screening field forward. But it's got to get out of the realm of research alone now because now where they're now where potentially at the threshold of a whole bunch of therapies that we hope will get approved and capitalism AB hopefully, if the FDA is happy with the data, and convinced that the drug is safe and effective, which we have great confidence that they will or others coming right behind. So the screening is so critical, Stacey,   Stacey Simms  34:15 thank you so much for joining me, we will link up all of the information and spread the word as best we can. But thanks for explaining everything and come on back, knock on wood. If everything goes through the FDA, come on back and share what's next.   Dr. Henry Anhalt  34:27 I would be delighted to do that.   Unknown Speaker  34:35 You're listening to Diabetes Connections with Stacey Simms.   Stacey Simms  34:40 More information on everything we talked about at Diabetes connections.com. You can learn more about teplizumab and provention. It's really fascinating stuff. And you know, it's not as easy as you know, one shot and you're done or one pill a day. I mean, it is as he mentioned, a an in hospital procedure, but imagine two weeks of that And then two, three, maybe four years, maybe more of prevention of type one. I mean, what an incredible beginning. I don't get my hopes up often you know me if you've listened for a very long time I I wouldn't say I'm cynical, but I'm certainly not running after every development. But I feel like we've been watching this one for so long, I'm almost ready to put my rose colored glasses on, we'll see, I'll keep you posted on you know what comes out of this, what the FDA decides, and you know, there's going to be a lot more information down the road. Up next in innovations. f It is time to get cynical again, I'm going to be talking to you and bring you some audio about a roundtable on insulin pricing. So stay tuned for that. But first Diabetes Connections is brought to you by Dexcom. And you know, when we first started with Dexcom, back in December of 2013, the share and follow apps were not an option. They hadn't come out with the technology yet. So trust me when I say using share and follow apps makes a big difference. I think it's really important to talk to the person you're following or sharing with, get comfortable with how you want everyone to use the system. And even if you're following your young child, these are great conversations to have at what numbers will you text, how long will you wait to call that sort of thing. That way, the whole system gives everyone real peace of mind. I'll tell you what I absolutely love about Dexcom share, and that is helping Benny with any blood glucose issues using the data from the whole day and night and not just one moment. Internet connectivity is required to access separate Dexcom follow app. To learn more, go to Diabetes connections.com and click on the Dexcom logo.   Last week, a new group or at least new to me called investigate insulin now partnered with the American economic liberties project and held a discussion about the impact of insulin pricing. I'm going to read you the description from their website. “Nearly 7 million Americans suffering from diabetes need insulin to live but a cartel of drug companies who control the production of insulin, Eli Lilly Sanofi and Novo Nordisk have made the lifesaving drug criminally expensive by colluding with each other to hike prices in lockstep over and over and over for years. On March 18, at 12:30pm, the American economic liberties project and the investigate insulin now campaign hosted a discussion focused on the dangerous impacts of the insulin cartel racial inequalities in insulin access, and what Congress and the new Biden administration must do to hold these corporations accountable and address concentration in this critical industry.” And that is the quote from the website. I'm going to link this up, you can watch the entire discussion. It is less than an hour, but it features Congresswoman Katie Porter, who you may recognize from her whiteboard. Many people just know her from that. But she's part of the oversight Subcommittee on economic and consumer policy. And then the remarks here are from people with the American economic liberties project to an international insulin advocates, the executive director of Social Security works. So there's a lot of people talking here I want to bring you one short clip. This is about a minute long. And this is Matt Dinger. He is a patient, as you'll hear, he is an advocate, and he is a board member at T one International. He has just said that he doesn't know anyone who uses insulin, who hasn't rationed it at one time or another. And he sets up His comments here by saying that at one point he had no insurance for just one month he was switching jobs, and he knew that he would have no insurance for a month. And that resulted in him rationing insulin ahead of time. So he would have a stockpile, and then also rationing after he got the job and had the insurance because he knew his deductible would mean he would be paying $1,000 a month for insulin for the first few months.   Matt Dinger  38:51 I'm lucky to be in the position that I'm in. And even so I'm a job loss away from financial ruin. Because the concentration of economic power when it comes to the price of insulin lies almost entirely in the hands of three companies. I am completely beholden to them. And I'm terrified by that every single day. Corporate concentration and monopolistic behavior by the big three insulin manufacturers allow them to set prices as high as possible, with no fear of losing market share. This includes things like shadow pricing, which is increasing the prices in tandem with one another instead of competing to set the lowest price, pay for delay agreements, lawsuits, taking biosimilar insulins off the market, patent games to extend their product exclusivities long past when they would normally expire. As someone who has worked in healthcare for the entirety of my professional life. I understand the price of innovation. And let me tell you leveraging anti-competitive practices in order to give your CEO a pay package of $23.7 million isnt innovative. and businesses that would do that while their consumers are dying aren't companies, they’re cartels,   Stacey Simms  40:01 it's pretty powerful stuff. I'll link it up. If you want to watch it, it is less than an hour. The investigate insulin now campaign is a coalition of a bunch of different organizations. And I think we're going to be hearing a lot more from them, because these are some pretty big names that are backing them. And while there's a lot of hope that the new Biden administration will move on some of these, there really has been no indication from Democrats or Republicans, in my opinion on the federal level that we will see strong action taken. So I'll continue to keep you posted on this one as well. I can't imagine the insulin companies are going to take kindly to being called a cartel. I thought that was some very interesting language. Alright, before I let you go reminder that I will be speaking live to some JDRF folks out west tonight, that's linked up on social media and in this episode, as well. And if you know, if you're listening a couple of days or weeks after this episode airs, I'd love to come to your chapter virtually, or maybe in person down the road. So please reach out we do have an event tab at Diabetes connections.com. And you can always request me to come speak or just you can ping me anywhere, email me directly. I love talking to groups. It's always so much fun. I always learn something as well. In our classic episode this week, we're going to be talking to a Broadway performer Maddie Trumbull, and she has played lead roles and Wicked and Newsies. And we'll check in with her and see how she has been doing this interview was five years ago now. And of course, the last year has been you know, we've seen Broadway completely shut down. So I checked in with her and I'll let you know what she is up to in our classic episode airing in just a couple of days. Thank you, as always to my editor John Bukenas from audio editing solutions. thank you as always for listening. I'm Stacey Simms. I'll see you back here soon. Until then. Be kind to yourself.   Benny  41:57 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

Raising teens with diabetes can be very difficult, but there's a lot parents can do to make it less stressful. This week's guest has advice because she's been there. Moira McCarthy is the author of Raising Teens with Diabetes and she shares how a very tough time with her daughter, Lauren, taught her what these kids really need. The secret? You might think it's better technology or a certain diet or even discipline, but as Moira explains, it's compassion.  Lauren is all grown up now, with a great job and a life far from home. She and Moira have a terrific relationship and she very generously shares her story to help others. This episode originally aired in July of 2015. Book: Raising Teens with Diabetes  Moira's post: Freedom is their secret drug The follow up: When your teen with type 1 becomes an adult   Check out Stacey's 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 inside the breakthrough, a new history of science podcast full of Did you know stuff?   Announcer  0:13 This is Diabetes Connections with Stacey Simms.   Stacey Simms  0:18 Welcome to a classic episode of Diabetes Connections as always glad to have you along, we aim to educate and inspire about type one by sharing stories of connection with a focus on people who use insulin. And with these classic episodes, I am bringing back interviews we did years ago, they are evergreen interviews that can still help people and you can really benefit from hearing these stories. But they are interviews that were done in 2015 and 2016, before the show had found all the listeners that it has now maybe that's you if you are newer, and with more than 350 episodes, you are sure to have missed a few. So this has been a fun way for me to go back and revisit some of the cool guests and great stories that we have shared. You know, it's funny to think about, but when I started the show, I was really concerned with Benny, my son becoming a quote, teen with diabetes. He was 10 when I launched in 2015. And you can hear that 10 year old voice at the end of every show when Benny reads my tagline. It is funny looking back because for us at least Middle School, you know ages 11 to 13 were actually much more difficult for diabetes stuff than the true teen years have been so far. As most of you know Ben, he was diagnosed right before he turned two. And as you'll hear in this episode, and in pretty much every episode from that first year, I'm terrified. I'm trying to figure out a way to make sure bad teen stuff doesn't happen to us and looking back it really makes me smile because what I was actually afraid of shows how much I misunderstood the teen years with type one my guest and now my dear friend Moira McCarthy has probably done more than anybody to educate me about this and she continues to do so to this day. A longtime listeners know more I became a frequent guest we even started an ask the demon segment we are due for another one of those pretty soon. If you're not familiar, Moira’s daughter Lauren was diagnosed with type one at age six. She's all grown up now living a very independent life with a great job in Washington DC and Moira , by the way lives in New England. They're not in the same town. They're hundreds of miles apart. But their path together with diabetes wasn't always smooth. Moira wrote one of the most widely read blog posts about diabetes parenting back in 2010. called freedom is their secret drug. I remember reading that boy. And just last month, she wrote a follow up to it. I will link them both up at the episode homepage at Diabetes connections.com. I am so grateful to Moira  and her whole family really Lauren, their other daughter Leigh, Moira’s  husband, Sean, for being open and honest about not just the good times with type one right not about the easy stuff not about when it was going well and about their community support and all the great things that they've done their accomplishments, being honest about their struggles more his interview from July of 2015 in just a moment for this is one of my first episodes. So I hope it sounds okay, I'm still doing radio stuff like introducing the guest a few times during the interview, you'll hear that but first Diabetes Connections is brought to you by insight the breakthrough a new history of science podcast, its historical wisdom, mixed with modern insight and insight. The breakthrough was created by SciMar. SciMar is a group of Canadian researchers dedicated to changing the way we detect treat and even reverse type two diabetes. 2021, as you know, is the 100 year anniversary of the discovery of insulin. It's arguably the biggest scientific discovery in Canadian history. This series examines that moment and many others through the lens of Canadian researchers trying to find what's next for the fight against diabetes. You can find inside the breakthrough wherever you find this podcast. And you should also know that Diabetes Connections is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.   Moira  McCarthy, welcome to Diabetes Connections. I'm so glad you could join me.   Moira McCarthy  4:16 Oh, it's great to be here.   Stacey Simms  4:17 So much to talk about with you today. We met at a jdrf event in St. Louis last year. After which I read your book. You know, I don't have a team with diabetes   Unknown Speaker  4:28 yet.   Stacey Simms  4:29 It's kind of like looking into a time machine. And if you haven't seen raising teens with diabetes that's got the best cover. There's a teenage girl just rolling her eyes. As we've all seen. I have a teenage daughter but it's my son who has diabetes and he's 10. So more what do we have to look forward to?   Moira McCarthy  4:48 Oh, it's just a snap. You know, agers all they want to do is please their parents. So I like to say we need the walk to cure adolescent. I think the good news Is that it really is temporary. When you're in it, it feels like it's not. But it really is a passing phase. And I think that when I hear like someone like you has read the book already, it makes me really happy. Because my hope is to be proactive and help people be proactive and kind of think ahead of the challenges you're gonna face and ways that you're going to try to work through them with your teenager.   Stacey Simms  5:25 I think there are things that you can do, looking forward, to figure out maybe some things to do now when your kids are younger. But take us back and tell us a little bit if you don't mind about your story and your family's story with diabetes. How old was your daughter when she was diagnosed?   Moira McCarthy  5:41 Sure, Lauren was diagnosed right at the start of kindergarten, right around actually at her sixth birthday. I knew nothing about type 1 diabetes and children before that. Once she was diagnosed, I realized that every single sign and symptom was right in front of my face, but she diagnosed   Stacey Simms  5:59 on her birthday.   Moira McCarthy  6:01 Well, she was diagnosed at her checkup, which was just shortly and wow. Which is very common, you know, yes, people go for checkups, then. So we were I say this with all the arrogance that that shouldn't be attached to it. We were the model patient family for a very long time. Lauren was extremely willing to just do what she had to do. I threw myself into becoming educated. She was actually the first young child in Massachusetts to go on an insulin pump in 1999, which seems crazy now because everybody can. We were progressive. And I really thought that I was the smarter mom who had it all figured out. And I would hear story about parents, with their teenagers and think, Well, I'm glad that's not us. And then I realized that I hadn't raised a teenager yet. And that no matter how hard you work, and how vigilant you are, and how wonderful your child is, the teen years can be extremely challenging and humbling. And so I learned a lot about, you know, the fact that you can't necessarily outsmart all of the challenges of diabetes all the time.   Stacey Simms  7:17 And as a teenager with diabetes, let's talk a little bit about that. Because my understanding is it is not just the attitude, it is the physical as well, right?   Moira McCarthy  7:26 There's a lot going on. It's just so unfair. I mean, think back to when you were a middle school, or an early high school kid, it's just such an awkward, uncomfortable time in your life without something like diabetes on top of it. And that's not just because of social reasons. That's because of hormonal reasons, too. And so you put diabetes on top of it, and you, you know, add to it, that it can make your blood sugar go crazy because of hormones. But you don't want to do what you have to do anyway. So who knows what it is in it. It's just a big old mess. It's a It's a challenging time, I really feel strongly that one of the reasons that I really support better technology is even if all we can do is just get this better technology to kids in their teen years. We're going to make life with diabetes so much better. I now that I've watched my daughter go through it, I totally get it. And I have so much respect for all teens, no matter how much they're struggling. I really do. That's great. And   Stacey Simms  8:27 you and your daughter have been very open about your story. Do you mind if I asked you a little bit more about and I don't want to put it in terms of what went wrong. But what was difficult for her as a teenager? And how is she doing now? Oh, I   Moira McCarthy  8:38 think it's fine to say what went wrong. Um, so what went wrong is is multifold first of all, I mentioned my arrogance, I really, really, really thought that I had it all figured out and that she had it all figured out. I trusted her so much at such a young age and put so much on her that I set her up to fail if that makes sense. Um, she actually came to me once and said you shouldn't trust me so much. And I think I just laughed at her.   Stacey Simms  9:09 You'd be like just trust her to check at school or things like that   Moira McCarthy  9:12 way. Um, you know, the old you yell into the next room, what's your blood sugar and they yell back a number. So what happened with Lauren is she she actually just wrote about this for a sweet life, I believe, where she explained when it all started. And she was at the pool at our beach club and I yelled across the pool, check your blood sugar and she went to get her meter out and just went huh. And waited a minute fiddled with it and yelled, you know, 118 or whatever, she yelled, okay, and I put it into my color coded Excel spreadsheet chart. And that was the beginning of it for her. She realized that she was trying to break free of diabetes. Ironically, she was feeling worse but in a in an adolescent mind that made sense to her. And I was I was letting her because I was burnt out. And it was pretty easy to just, you know, actually literally and metaphorically be in my lounge chair, letting her run the show because I was sick of it, when what she really needed at that time was me to at least check in on her. And by that I mean see things happen from beginning to end, at least once or twice a day instead of just trusting her to go off on her own and report in to me. And that's a funny thing, because she's a trustworthy child. She's honest, she's open. She was honest about everything in her life, except her diabetes and her blood sugar's and so under my nose, under my nose, and on my guard, my daughter went into real life true, not a joke. ICU DK. Wow. And that was when even her doctors were shocked. You know, that was when I knew I had to fix me so that I could help her get through this time.   Stacey Simms  11:09 That's such a hard thing to hear knowing how on top of it, you thought you were in and she was, what happened? How did she do?   Moira McCarthy  11:17 So at first, she dove back into doing everything great, and everything was fine. And then the struggles continued. And what I realized was, I needed to find a new acceptance or a new level of what was acceptable in her diabetes care at this point in her life. Was she scared?   Stacey Simms  11:42 Was she upset? I mean, what was her reaction?   Moira McCarthy  11:44 Well, you know, she said to me, once, someone asked me years later, I'll be honest, I went through anger, I, I wanted to shake her it's really, really frustrating. When you just want your child to feel good, and and, and do what they have to do. But what do I know, I'm not the person who was inside her head as a teen. So a couple years ago, someone said to me, ask Lauren, what the best tool is I can use with my teenager with diabetes, you know, is it is it a CGM, and I should watch everything? Is it a pump? Is it a meter? What is it? So we're driving the car and I asked her, and she thought about it for a while. And she said, I've got it, mom, I know what it is. It's compassion. And I'm like, but she said, you know, that whole time, I was beating myself up more than anyone could ever possibly beat me up. I felt like a failure. I couldn't face that I wasn't doing the right thing. I was letting myself down. I was worried about my health. So pointing any of that up to me was pointless. I already was doing that at a level you could never do. And so that really spoke to me about that makes you think about the struggles teens have that all that was going on in her head. I don't know how she was, you know, she was through all this. She was her student body president. She was homecoming court. She was star, the tennis team with all that going on physically and emotionally. It's pretty remarkable.   Stacey Simms  13:21 And this is a, I guess I can say a bit of an overachieving family. She's now she's now in a good way. And she is now a college graduate has a great job doing very well. How did you get from DK a to that?   Moira McCarthy  13:36 It was a process. I think that I had to realize and parents listening to this whose children are younger, I can't stress enough how you have to start doing this earlier is you have got to stop nagging them. Because when our voices fill their heads, there's no room for their own rational voice. And so it took me a really long time to stop nagging her and in fact, this morning, I kind of sort of wanted to nag her from 500 miles away to hurt work, but you just can't. And what happens when you stop that nagging is their own internal nag kicks in and they will listen to their own internal nag more than they will listen to ours. So I had to let go a little bit. But on the converse, I also had to make sure she was safe. But I had to have a new definition of safe while we went through this time. safe for us was not an A one C of 6.5 safe for us was not a log sheet with tons of checks in it every day safe for us was not now it would be the straight line across the CGM safe was knowing that she was never going to go into DK And all I had to do to make sure of that. And this will be confusing for parents of younger children, because they haven't experienced freedom in teens yet, all I had to do was check in and see her, do a blood check and put insulin into her body, at least one time a day. And if that's all you can manage for a period of time, they're going to be safe. And then you can work through the other things. And what worked for Lauren, she moved to a new endocrinologist, I loved our old endocrinology team, but she made a change. And her new under chronologist is very intuitive. And he treated her as a human being and not labs while working on the labs, if that makes sense. And he was the one who really cut back on what his expectations of her were. And by cutting back on the expectations, she was able to experience success and stop beating herself up as much. And then do more. Does that make sense?   Stacey Simms  16:04 It makes perfect sense. And another piece of advice that I've tried to incorporate that I've heard you talk about is when your child comes home from school, and again, my son is 10. You know, we all want to say first, hey, how was your day? What's your blood sugar? Or, you know, how was your day? What do you do for lunch? And how did you bolus? And I have tried,   Moira McCarthy  16:20 I don't really succeed,   Stacey Simms  16:21 I have tried to stop doing that and say, how was your day? What were your friends like, and then either later on, ask them about it or say, hey, just give me your meter. And then you know, and we don't talk about it as much as we used to, I find that to be pretty helpful.   Moira McCarthy  16:35 It really is I just got off the phone with a mom who reached out to me and asked if she could talk to me on the phone because she has a struggling teen, and she has an older child with diabetes. And she said that that action actually damaged their relationship to the point that she's still trying to rebuild it   Stacey Simms  16:54 by just simply asking about it all the time.   Moira McCarthy  16:56 All the time, the minute he walked in the door after school, it's such a natural thing for us to do as parents, but and I found when I first started working my way past that I was faking it. And that was obvious to my daughter because she said, you know, Mom, I know that you're asking exactly three questions about other things and just counting them until you ask about diabetes. So the answer is, and this sounds wacky, don't ask and what you said in there makes sense. You can look at their meter and get your answers, you know, and then whatever those answers are, you move on from there, don't go backwards, you know, so. But it's really hard because we care so much about this. And I think a way to try to work around it. And I talked about this in the team book is to remember that we're not raising an agency or a blood sugar, we're raising a human being. And their diabetes seems really important to us because it's such a responsibility medically and every other way. But the rest of who they are is just as important for us to nurture too. And if you can try to remember that it can help you pull that in. But it's what parent doesn't have that problem, you know, wanting to say what was your blood sugar. It's just what we do. So   Stacey Simms  18:20 one of the things that you and I have talked about before is this remarkable advancement that's happened in technology. I my son has used a CGM for the last year and a half. He's had a pump since he was two and a half. But using a CGM has really changed the way I look at his blood sugar. And the way it appears throughout the day, and you mentioned a concert I want to talk about is the success is success, a flat line on the Dexcom. And that is something that I have to steal myself against going for because we all want to see those super steady, wonderful numbers. But that's just not how diabetes operates, at least not my kid. And he still does very well. Can you speak a little bit to this, I don't want to call it an obsession, but this it's almost this fear of letting kids kind of go in and out of range. Because at any moment, something terrible could happen when that's really not the case.   Moira McCarthy  19:14 Yeah, so first of all, I want to premise that with if my daughter was newly diagnosed, and I was using these tools, I would absolutely fall into the category of wanting a straight line and worrying every time she went up and down. So I totally get it. Even though I started out this journey in a different time. And before those things, I can totally see how it could happen. But I have this wish and I just said it. I was lucky enough a week or two ago to be at a meeting with all kinds of the CEOs of all the technical diabetes technology companies. I was one of the only patient people you know, I'm a patient parent in the room. And what I said to them is we're developing these amazing tools to solve See more. But we're way behind on tools, ie faster insulins, better infusion sites, things to make things work better on treatment of them. And so parents particularly, and I would think newly diagnosed adult patients, too, are trapped in this period of time now, where they have, they can see everything, but they can't do anything about it. And they think they need to do something about it. So Lauren was diagnosed back in the days of mph and regular when you had a chart of spikes and dips, and you match those throughout the day. In other words, we knew there were going to be three mph spikes and two regular spikes, and then dips along and we matched them. So that helps you understand the ebbs and flows of blood sugars in a person. And I think that parents now who are going right on CGM, with their children are so afraid when that arrow goes up, and when an arrow goes down, that they never fully experienced those ebbs and flows. And the thing about that is, Jeff Hitchcock said it beautifully, we can raise a child with a perfect agency forever, all we have to do is lay them in a hospital bed with an IV of glucose in one arm and an IV of insulin the other arm and check them every 15 minutes and tweak it. But that's not a life. That's not a life. So I look at my daughter, and I look at what she's doing and how she's living in our life. And I look at her success, and she loves her career, and she's in her apartment in Washington, DC and she has a million friends. Well, if I match that with her line across the CGM for the past 18 years, if you only looked at that CGM line, you might be like, Oh, my God, this has been a nightmare. But if you look at her, and frankly, she's perfectly healthy, and everything's fine. I like that side of it. So as far as the fear goes, this breaks my heart. I like to call fear. Now, the newest, most frequent and most frightening and devastating complication there is in type 1 diabetes today. And I think that it is partially because the way we all communicate and are linked with one another, and you see things and hear things like you never did before. And frankly, you don't know the whole story behind everything you're hearing. And also, these tools that are making people think that you know, because your child's blood sugar is going down, if you hadn't done something, they were going to die. And I really, really, really am struggling to help find a way to change that. Because we parents have an obligation to our children to help them live a life that they embrace without fear, diabetes or not. And no matter how many times you say you're not passing that fear on to your child, you're passing that fear on to your child. So it would be nice to change it.   Stacey Simms  23:09 My mother always said that kids take their cues from us. So what we do and what we feel, we may not think we're modeling, but they're getting it, they're picking up on it. Yeah.   Moira McCarthy  23:18 And a lot of it is in language. Like, I don't think you should say, I saved my child's life again last night. Giving your child glucose is not saving their life, any more than feeding them dinner every night and saving their life because they would starve to death. It's a little more urgent. And, and, and yes, it's scary, but lows are lows and you treat them and you move on. And it's all going to be okay. And the same with highs, you know, even my daughter and the decay, thank goodness, she got to a point where she was so sick, actually, her friends intervened and said, you're going to tell your mother what's going on right now. And we're bringing you to tell her and we went right to the hospital. But there are ways to fix things and it's better. I think it's better to have your language just be okay. It's a high, it's a low. It's not good. It's not bad. It is what it is. And that way you're not passing that on to your kids. I camps have a huge problem now that they never had before that children go into diabetes camp are petrified to go to sleep at night because their parents aren't there. That didn't happen before. Wow. Yeah.   Stacey Simms  24:38 My guest is Moira  McCarthy, author, travel writer, speaker, diabetes mom as well. I want to talk to you about the jdrf ride to cure diabetes because my friend, I think you're crazy. You went through Death Valley on this thing. What possessed you? Why do people do this? How far is it?   Moira McCarthy  24:58 105 miles My friend, and not a motorcycle. And it's funny because I actually said the words out loud at jdrf national meetings, you will never get me on a bike and I will never do that ride. But I did. And the reason that I did for me, we were a big walk family, we had a big walk team like you do. We loved walk every year, we were one of the highest fundraising families in the country. And when Lauren went away to college that dissipated, which is quite normal, the culture of walk is getting people together and families and stuff and when your kids go off to college, people move on from that. And so that first year, I felt, I felt a responsibility that all this money that was coming into jdrf wasn't coming in, and that some researcher somewhere wasn't going to be able to do what they needed to do. And I had to find a way. So I thought, well, I'll try this ride thing. So I bought a bike, I hadn't owned a bike in 25 years, I had no idea how much bikes cost, Holy moly. But I started training. And I put the word out and I thought, Oh my gosh, I hope I make the minimum I chose the gold minimum, which would be $4,000 raised and I held my breath and cross my fingers and had a little faith and put the word out to my friends. And not only did I do the ride, but I raised $40,000 my first year. Wow. So what that said to me was a I guess I should have done the ride. My friends probably felt just as guilty about not having a way to support our dream, too. And see, taking that kind of action that requires tons of training and tons of work and tons of effort, on my behalf showed my friends that I respected their donations, and that I understood that after all these years, it was amazing that they would do something so I needed to do something possibly amazing for them. What is it like?   Really, really, really   good experience?   Stacey Simms  27:12 What was it like, though on the bike? I mean, it's just hard. It's not that's not an easy thing. You know, you have to train for a long time. You can't just jump on the bike and pedal away. No,   Moira McCarthy  27:19 the first time I rode, I wrote about seven miles. And I got back and I called my friend Katie Clark, who got me to ride and I'm like, I think I have allergies. And she said, Yeah, you're allergic to cycling more. Love I was and now I can tell you. It's really wonderful. You still have to train and build up. But if someone said to me on any day, do you want to go on a 50 mile bike ride? I could say Sure, sure. And I'm not like an Olympian. You know, I'm, I'm just an average person. And I found that I love being on a bike. So I got something out of it for myself, you know, you don't wear music in your ears when you cycle because it's not safe. And even though if you're with people, you're still in your own space. So it's very meditative. I can think through things. I see the world in a different way. Even my town I cycle by things that I drive by every day, and I'm like, Oh my gosh, that's really pretty. You know, I never noticed that little paths. So I feel like it's been a real gift that said ride day. You have a lot of adrenaline. It's really special because you're riding with all people who care about the same thing you care about. When I get done, the last thing I want to do is ever get on a bike again. But I do maybe not the next day, but   Stacey Simms  28:42 Wednesday, when is this ride?   Moira McCarthy  28:45 I'm doing to this year, August 13 through three states through the Midwest, Wisconsin, Minnesota and Iowa and then Death Valley is October something teen whatever that Saturday is, so I'm doing too.   Stacey Simms  28:59 Yep. Well, hats off to you. That's, you know, maybe I'm the person who will say now you'll never see me on a ride. And then Mike, he'll go to college.   Unknown Speaker  29:07 I'm gonna remind you, Oh,   Stacey Simms  29:10 I love it more. Thank you so much for talking to me today. And again, the book is raising teens with diabetes. And she is you can find more publications, but more writes for many publications. And we'll have links you can find out more and where to catch your columns more. Thanks so much for joining me. Absolutely. Thanks   Moira McCarthy  29:30 for what you do.   Announcer  29:36 You're listening to Diabetes Connections with Stacey Simms.   Stacey Simms  29:42 More information about more of the blog posts I mentioned, you know the one from 2010. And the follow up that was just published last month on health line. I'll put those both at the episode homepage which also has the transcription and it's interesting to me listening back because I don't feel that the teen years quote. You know, our Behind us by any stretch of the imagination, Benny is 16. He just started driving and there's new challenges and with diabetes and kids, you're facing new challenges every year anyway. So I'm still listening to Moira  and calling her up and asking her my questions. But it is remarkable to look back and think how scared I was when what I really needed to be thinking about was less about me, and how can I make this right for Benny? And how can I make sure he doesn't rebel? And you know, and does what he's supposed to do? And instead, look at it through the lens of how can I support him? How can I give him more empathy? How can I give him more compassion? How can I talk to him about the tools that he needs? And it sounds very woowoo Brady Bunch, whatever you want to call it. But I can tell you having these conversations with Benny over the years, even many conversations where he rolls his eyes and doesn't want to talk about it. I mean, he's not he's far from a perfect diabetic is far from a perfect kid. But I feel like all the time I talked to him and told him, you know, we're here for you. It's your decision, we'll support you. It's not about a perfect agency. It's not about this. It's not about that. He listened. He heard us. It's absolutely amazing. And I'll say one more thing about teenagers with type one. I think sometimes it is a bit easier if you're a younger child is the one with diabetes. There's not some weird genetic thing going on there. It's just that once you see and I'll give my example here I have a daughter who is three years older than Benny, but four years older in school, because the way they their birthdays ran, when she entered her teen years, I had this wonderful, nice, rule abiding kid who started forgetting in quotes, forgetting to do homework, slamming doors, yelling at us being unhappy, changing her clothes, changing her hairstyle, doing all the things that normal teens do. But when you're first kid, your older kid is the one with type one, and you're entering those teen years, and you're seeing all those changes. I have a dear friend and this is her situation, the older kid is the one with type one. You don't know if it's diabetes, or teen nonsense, because you haven't been through it before. And I think it's really helpful to understand that the transformation is kind of a strong word. But the wackiness that happens in the teen years isn't all about diabetes. And that helped me an awful lot, because sometimes it's just nonsense. Moira  is definitely the authority on this, we are still feeling our way through the remaining teen years, maybe I'll write a world's worst teen mom in 10 years from now, when I'm looking back, I can tell you everything we did do wrong during this time. But there's lots of good stuff coming up on Diabetes Connections. We're gonna be sharing stories about mutual aid diabetes, have you seen this on social media? Who are these people? What are they trying to do? How can we help? How can we trust that the money that we're using to help in the community is going where it's supposed to go without a big organization behind it? These are some really interesting people. And we're going to talk about the City of Hope. This is a big research facility. They do a lot more than diabetes, but they have some very interesting studies. They talked about their reverse vaccine a couple of weeks ago, and they're going to jump on and give us an update. Thank you, as always to my editor john Kenneth from audio editing solutions. thank you as always for listening. I'm Stacey Simms. I'll see you back here in just a couple of days until then, be kind to yourself.   Benny   33:14 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

Chris Stocker is a well-known voice from the early Diabetes Online Community, launching his blog about life with type 1 diabetes called Life of a Diabetic in 2007. In 2019, he stepped back a bit from the DOC with good reason: his daughter, four years old at the time, had just been diagnosed as well. Now, two years later, Chris is jumping back into the online community via Instagram and a YouTube channel. He talks to Stacey about what it's been like for his family to adjust to their new situation. He also has a great message for any men who live with T1D. In Tell Me Something Good, one of the scientists behind one of the COVID vaccine.. is one of us! And some new books are our for the littlest ones of us.. The Adventures of Captain Lantus Little Shots for Little Tots When I Go Low: A Diabetes Picture Book  Friends for Life information  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 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     Stacey Simms  0:00 Diabetes Connections is brought to you by Dario Health – manage your blood glucose levels increase your possibilities by Gvoke Hypopen, 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 This week a well known voice in the early diabetes online community stepped back for a bit stopping his blog and his brand new podcast when his daughter at age four was diagnosed with type one herself.   Chris Stocker  0:39 Do you want to help me do it? Do you want to help me I you know decorate my infusion sets and things like that. So we shared those common bonds and that's how we looked at it from the day of diagnosis was Hey, you're like daddy now.   Stacey Simms  0:51 It's been two years since Chris Stocker’s  daughter's diagnosis, and he's jumping back into the online community. Chris shares his story as a dad of a child with T1Dwho lives with it himself in Tell me something good. One of the scientists behind one of the COVID vaccines is one of us and some new books for the littlest ones of us. 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. We aim to educate and inspire about diabetes with an emphasis on people who use insulin aim host Stacey Simms, my son Benny was diagnosed with type one right before he turned to more than 14 years ago. My husband lives with type two diabetes. You know, I started blogging just after Benny's diagnosis. And that blog, which I eventually called off the dial led me to the DOC the diabetes online community at that time, and this is 2007. When I started, it was basically blogs and some online chat rooms. And you know, gradually social media exploded and everything changed to what it is now shorter posts, influencers, more podcasts, that sort of thing. The Twitter chat remains DSMA on Wednesdays, if you're not familiar with that, that is a 10 year old now more than 10 year old chat on Twitter, I'll put a link in the show notes, but it's just hashtag DSMA Wednesday evenings at 9pm. Eastern for anybody in the diabetes community we'd like to give it a plug it's not separated by type or if you're a parent or a person with type one. And that's one of the ways that I first remember meeting Chris stocker and it was great to talk to him this week for so many reasons, but it really brought me right back to those early days. You know, when we had diabetes blog we can you know, to feel like we're finding all these really to me amazing, cool people in my computer, which depending on your age, either sounds ridiculous or you know, right on you, you know what I'm talking about. But before we get to Chris, I do want to share a Twitter post that I was tagged in this is self serving, but I just I have to share it. A gentleman named Hugh Stimson retweeted my episode release about Lily and Ypsomed and my conversation with with Mike Mason from Lilly diabetes all about that. And he wrote, “I wish political journalists asked follow up questions, the way Stacey Simms asks health device executives follow up questions.” Whew. Thank you so much for writing that. It's hard to describe what that means to me. And and compliments are always nice. But that right there is why I started the show back in 2015. I would listen to podcasts. And I'd be yelling back at the hosts, I'd be asking my own questions. I'd be like, follow up on that. He didn't ask. You know, look, radio people are interesting. And well, I am really glad to be built like this. It is an odd thing sometimes. But I'm glad it came in handy. I'm glad it helped. And I'm really glad that you feel like I'm doing a service by asking those questions and trying, you know, sometimes we don't get answers, but you got to ask. So thanks again. I really appreciate it. All right, Chris Stocker  in just a moment. But first, Diabetes Connections is brought to you by Dario health. And you know, one of the things that makes diabetes management difficult for us. It just really annoys me and annoys Benny, it isn't actually the big picture stuff. It is all the little tasks adding up, you know, are you sick or running out of strips? Do you need some direction or encouragement going forward with your diabetes management with visibility into your trends help you on your wellness journey? The Dario diabetes success plan offers all of that and more. No more waiting in line at the pharmacy. No more searching online for answers. No more wondering about how you're doing with your blood sugar levels, find out more go to mydario.com forward slash Diabetes Connections. Chris Stocker’s  blog back in the day was called life of a diabetic and he wrote about everything from his diagnosis as a college student in 2009. To Day in the Life stuff to product reviews to what dragged him down and made him mad and what lifted him up. When his oldest daughter was diagnosed just before she turned four. Chris felt like he had to pull back and face this challenge before venturing back online in such a public way. But he never really left the community. And I think dads and men with type one as you listen, there is really great advice here for you in terms of support and asking for help. Chris, welcome to the show. I'm excited to talk to you. I feel like we have talked before, but it's only been on Twitter and Social Media. Thanks for jumping on.   Chris Stocker  5:19 No problem. I'm definitely happy and honored to be a guest here.   Stacey Simms  5:24 Well, you're a podcast pro and a YouTube Pro. So this should be fun. But we do have a lot to talk about. Let's just start at the beginning for you. Because your diagnosis story happened when you were in college. Right? You were 19. Tell us about that.   Chris Stocker  5:35 Yeah. So I was I was a freshman in college, I was playing football at King's College up in Wilkes Barre, and the season was over. And I just was I was working out I was losing a ton of weight. I was drinking a lot of Gatorade and water. So I was urinating quite frequently. And I just thought I was losing weight because I was working out. And then this one night, I didn't have an appetite. I started getting sick all day long. And I ended up in the emergency room with 858 blood sugar.   Stacey Simms  6:05 What year was that? If you don't mind me asking.   Chris Stocker  6:07 That was in 2000. Wow. 2004.   Stacey Simms  6:10 What was the diagnosis process? Like? Did they you as a young adult like that? Did they believe you had type one? Was it an okay, diagnosis?   Chris Stocker  6:17 Yeah, it was. I honestly don't remember too much of it. Because I was kind of in in like a foggy state. My mom has worked at a hospital for almost 40 years. She took me to her hospital. So of course, we got the VIP treatment went right into the ER. And, you know, they took labs, and immediately The doctor came in and was like, You have type 1 diabetes. So there was no real question or debating anything whatsoever. Then I remember seeing the on site endocrinologist, probably I think it was that night. This was probably around 2am. So yeah, there was no discussion ever about whether it was type one or or another type of diabetes.   Stacey Simms  6:56 And what did they start you want? You immediately put on? I think 2004 elantas was around for adults, but not necessarily for kids. Like what what was your beginning entry into diabetes tree?   Chris Stocker  7:07 Yes, my very first night home, I can remember almost exactly the ratios and everything. I was taking 14 units Atlantis at night, the carb ratio was about 51 to 5015 to one. And that was Yeah, I was on lantis. And I think I started on probably either human log or no blog at that time. I can't remember that. But I didn't know anything about pumps or was never even brought up to me at that point in 2004. Either.   Unknown Speaker  7:36 Did you go back to college,   Chris Stocker  7:37 I I was not able to go back to King's College at that time. So I stayed home for a year I went to community college. And then I got this bright, awesome idea that I wanted to go to college away from Pennsylvania. And so I decided to go to Boca Raton, Florida and finish up school at Florida Atlantic University. So not only was I only a year or so maybe a year and a half, after diagnosis, I was then telling my mom that I was going about 1200 miles away to go to college. So it was definitely a rough conversation to have with her for sure.   Stacey Simms  8:15 Okay, well, it is sometime later, let's say right, it's, you know, we know you did pretty well in college, I assume. Can you give us parents the reassurance that you know, you You did? Okay, and that was the right move for you?   Chris Stocker  8:27 Yes, I mean, it definitely forced me to really grow up pretty quickly. I mean, I was 20 by the time I went there, but I was a little bit more mature than a lot of my, you know, my roommates and a lot of my classmates, because I was managing this disease pretty much by myself. I had no family, no friends down there. So it was really it was on me, I was in constant communication with my diabetes educator up here in Pennsylvania. So I was able to communicate via email with them quite often. So you know, there were some times where I had some pretty high blood sugars. I did actually end up at the ER one night, because I was getting my insulin through the school on campus pharmacy, which was not open on the weekends. And I thought that I could go from Saturday afternoon till Monday morning with just about 10 units of insulin which I use in one meal. So I actually ended up in the ER, I had met my girlfriend who's now my wife down there. And this was all new to her too. And she ended up taking me to the hospital and think I was probably up in the five 600 range. And then that was an interesting phone call to my mother as well. Who at that time, then flew down and did the motherly thing and came down and spent a few days down there with me.   Stacey Simms  9:49 I'm wondering though, I mean, my kids, my daughter's in college far away. Then he is a sophomore in high school and we're starting to talk about college and I've told him you know, you can go wherever you want. I'd love for him to stay next year. We're at least in this state, but I doubt that he will. I'm curious looking back What made you want to go so far away? I mean, do you feel I don't wanna put words your mouth I wonder like, did you want to prove something to yourself? Did you just love that school always wanted to go to Florida like why from there's so many great schools in that Pennsylvania northeast corner?   Chris Stocker  10:16 The weather? Yeah. Yeah. So I was playing football. I played football my whole life. I was playing football, I kings, I actually left the football team because I had no energy. I couldn't I didn't want to work out anymore. Later to find out that that was diabetes related. And I just said, You know what, like, I don't wanna play football anymore. I just want to go somewhere that's totally different than than where I grew up. I love Pennsylvania. I'm actually back here now. But I wanted to go somewhere totally different. And I started looking at colleges. I'd always wanted to go to UNC Greensboro. I don't know why, but I always wanted to go there. And I started looking online. And one day I was watching a tennis tournament, and Andy Roddick was my favorite tennis player and it popped up that he lived in Boca Raton. So I went on the internet, looked up colleges in Boca Raton, I found Florida Atlantic and I fell in love with their website. So I always used to joke that I have Andy Roddick to thank for meeting my wife. Even though I've never met Andy Roddick, and Andy Radek has no idea who I am.   Stacey Simms  11:22 Well, you wouldn't be the first to go to college because somebody either lived in that town or went to that town that you admired. But that's a great story. I love it. I want to talk about the diabetes online community, you were a very big part of this. You still are. But there was this time when there were so many bloggers and we were all just finding each other on Twitter. But I at first like to skip ahead in your story to when your daughter was diagnosed. I think that's such a fear of so many people I know who are adults with type one. But it does happen of course and you do deal with it. Do you mind sharing her story too. When was she diagnosed?   Chris Stocker  11:56 She was we're actually coming up on her two years, in about a week and a half year so she was diagnosed on February 12 2019 in the middle of a snowstorm. And that was when we decided to take her to the ER was when we had about eight inches of snow on the ground.   Stacey Simms  12:19 Right back to Chris in just a moment Diabetes Connections is brought to you by g Bo hypo pin. 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. And that's where GMO hypo pen comes in. It's the first auto injector to treat very low blood sugar Jeeva hypo pen is pre mixed and it is ready to go with no visible needle. That means it's easy to use in usability studies, 99% of people were able to give g vote correctly. I'm so glad to have something new, find out more go to Diabetes connections.com and click on the G book logo. g Vox shouldn't be used in patients with pheochromocytoma or insulinoma. Visit chivo glucagon.com slash brisk. Now back to my conversation with Chris about the night his daughter was diagnosed. Had you suspected I mean I, you know I don't wanna get too personal. But   Chris Stocker  13:14 the signs were there. And I feel that I had maybe been living in denial for a little bit. It is something that I had thought about every single day from the day my wife told me she was pregnant, that that what if scenario and it was something that I talked about a little bit, but I didn't talk about it a lot because I felt too vulnerable, I guess. So I shared that because I knew I would not be the only one that had those feelings. But when I would see her, she was potty trained. So she was waking up probably three or four times a night asking for water and having to go to the bathroom. And I really started to see a change in how frequently she was going to the bathroom. And then that kind of was going on for you know, a couple of nights. And then just one night, I just had a gut feeling. And I said well let's pull out my meter. Let's check her so you know, of course, she didn't want that to happen. And you know, I can remember just looking at the meter. The number was in the 250s but I just remember looking at the meter and then just knowing and just knew and just being just crushed. So it was it was something that I had kind of mentally prepared for but it's just one of those things I don't think you're ever prepared. You know you think you might be but it's just you know, it was just a crushing feeling. But then the dad and the type one in me kind of just said hey, it is what it is. We just got to do it. And you know we took it to the hospital. I'm amazed by how she handled the entire thing. It was just unbelievable being in a in an ambulance to go from the ER on hospital to the pediatric unit at another hospital. I mean she loved that still talks about it to this day. Really   Stacey Simms  14:57 what did she do what she did like she was feeling Okay, and she was excited.   Chris Stocker  15:01 Yes. So she didn't really know what was going on exactly our local hospital, which was, you know, a few blocks away, they didn't have a pediatric unit. So it's a system hospital. So they just, you know, put her and my wife in the ambulance and took them to the hospital that had a pediatric unit for her. So she got to watch TV pretty much all day long. She got to play with toys in there. So it was different, you know, getting getting those first round the labs done and putting her into the burrito as they called, it was probably her only bad memory of the entire process. So she definitely still talks about those days, even, you know, she was a month away from turning four. What is the burrito? So sorry, later down on the table to draw labs and freaking out? Yeah, so they kind of, you know, they put like a weighted almost like a weighted blanket over her to kind of strap or in and they just called it a burrito, I guess to make it sound not so terrifying.   Stacey Simms  16:00 How long did you stay in the hospital? And then what did you have to do? I assume you know, your you and your wife are pretty well educated about diabetes. So I don't know that you needed much of that. But it's different when it's your child,   Chris Stocker  16:09 I would assume? Yeah, it's totally different. And we were in the hospital for about two and a half, maybe three days, I do know that they kind of rushed us through the process. Because when we first went there, I basically just said, Hey, listen, I have type one. I know what it's like, you know, I know what to do. But I don't have a child with it. So I know I need to, you know, relearn some things, and things are going to be a little different. But the, you know, the staff there and the whole diabetes team was very helpful. And really, they directed most of the education, most of the conversations towards my wife, which was something that we kind of asked them to do, because I really, you know, my wife had lived with me for 14 years before that. But my diabetes was kind of just my own diabetes, I didn't ask her to take an active part and help managing if she knew if I was low to give me Skittles, she knew if I was high, I needed some more insulin, but she knew that I counted while I was supposed to be counting cards, but she knew the basics, but really, she needed to start, you know, learning. What is basal? And what is this? And what is that? So a lot of that education was geared towards her. And I think it was, you know, very helpful, not just for her, but also for me, as somebody that was living with it for at that time, I guess it was 15 years, then that there was like a refresher course that I that I needed. Because I was in my I was in my my own habits. I'm in my own ways. And it was it was really good to kind of take a step back and relook at how you know, what is diabetes one on one, you know, what is the right way to kind of do some of these things.   Stacey Simms  17:48 I'm picturing that, you know, your daughter has watched you do this, even if you haven't been doing it in front of her the whole time and everything that this is now something that while that's not great, but she can share with her father,   Chris Stocker  17:59 absolutely. 100%. And that's exactly how I looked at it was, how can I make this easier for her and just like a parent with anything, my initial instincts were, what can I do to make this better for my child, and it was just instantly that put on a smile for her show her that my diabetes is not a burden on me, it's not something that I don't like doing. So I made sure that when I had to check my sugar, or she, we were going to check our sugar, I would do mine also. And you know, now we share some of those same things. So it's like, oh, when when I have to change out my CGM, you know, my sensors is, do you want to help me do it? Do you want to help me, you know, decorate my my infusion sets and things like that. So we share those common bonds. And that's how we looked at it from the day of diagnosis, as well as Hey, you're like, Daddy, now you and Daddy, we both have diabetes. And my niece was actually diagnosed about two years before my daughter. So that was a whole whole nother thing of trying to you know, help my brother and my sister in law with with dealing with that diagnosis. So, you know, now she shared that with her cousin as well. So it was kind of something that, you know, with her daddy having in it, her cousin having it that that she was able to not. And also she didn't at that time really even know what it meant to have diabetes. She just she thought it was just cool that now she has daddy. So it was definitely the way that we decided to kind of take is to be able to share that bond with her. And that's what we have in common.   Stacey Simms  19:23 Do you use the same technology as each other?   Chris Stocker  19:25 We do. We do. Now, we did it at the time, but the same CGM and we both use the same insulin pumps,   Stacey Simms  19:32 you don't have to answer this but you know when you say to your your daughter and this is what I think we would all want to say to a newly diagnosed child right? It's not going to be a burden. You can do this it's okay to have diabetes. And I think for me as the adult with my son ignorance was a little bit of bliss, right? You know, you can do this it's gonna be okay and it's not gonna stop you. You can play sports, you know, you can. Now they can fly planes, right? You can you can do what you want to do. But for somebody with type one who's lived with it for as long as you have Do you know that it is a burden? Sometimes you know that it is really hard. And I know this is not something you're gonna take, you're now, you know, almost six year old decided to Hey, by the way, you know, I mean these are conversations from they're much older,   Chris Stocker  20:10 we've had some conversations I mean, as much of a conversation as you can have with an almost six year old about living a life with diabetes. So we really kind of talked about it in Scituate, you know, take today, for example, it's been snowing for almost three days, we were out in the snow. And I can I already know, as soon as we go to that, in that snow, she's going low, it's just 100% guaranteed every single time. So we had to stop playing in the snow. So we could drink juice. And you know, she doesn't want to stop playing. So we try to you know, just let her know that, hey, just because you know, the other kids in the neighborhood happen, you know, they're still out playing and whatnot, we just need to take a little extra precaution steps here and just sit down and have a juice and you know, we frame it that day, they don't get to have a juice right now, right? You're the one having giggles and juice. So you know, but it's just you know, so we use those kind of, it usually comes up during Lowe's, where we may say like, hey, let's let's settle down for a little bit. Let's not run around or play rough right? Now let's just sit down. And, you know, we'll play a play game of checkers or something just sitting on the couch. So we kind of have those conversations with her, like why she has to sometimes stop doing what she's doing, she can get right back into it. But we might need to take 10 1520 minutes here or there to just settle down a little bit, have a little snack or juice or something like that. But I think about how I'm going to have additional conversations with her in the future. And I've gone back and forth, you know, talking in the mirror how I'm going to handle it, it's probably going to be one of those situations where I have a great plan going in, and it's just not going to go anywhere near how I play it.   Stacey Simms  21:50 Um, I do want to ask you a few more questions about your children because you have another child as well. But let's take a couple of minutes and talk about the diabetes online community from a few years back, if you're a longtime listener of the show, you know, we started this in 2015, which was probably the beginning of the end of the like the hybrid if we were to check blogging and that kind of thing. And the whole, you know, I guess what some people would call the Oh g diabetes people, you know, maybe that's when it peaked my non scientific method here. But you were, you know, you were right in there and all of those conversations, and I'd love to know, how did you find the online community? What was your first entry.   Chris Stocker  22:26 So I first started blogging or even finding out about blogs back in 2009, I was working for a, I was interning actually at a diabetes supply company. And they said, Hey, we want to start a blog. So I started to write blogs for the company. And then I was like, Okay, this is I kind of enjoyed this. And then I started finding other type one, blogs. And I thought, you know what, I have so much that I want to say, and I felt that I didn't have anybody to talk to about it. Because I didn't know anybody with diabetes, I went to high school with the kid. But I knew we drink Gatorade at halftime of football games. But that was it, we had water in a Gatorade, that was all I knew about diabetes. So I just started writing things that were in my mind that I think I just wanted to get off my chest, I just started writing about them. And I didn't even care that nobody was reading it, I just wanted a place to be able to just share my thoughts. And it just helped me just help my mind mentally just be able to get it out on to you know, typing on the keyboard and just reading it. So that's kind of how I started. And then I can't remember getting my first comment, I got a comment on a post, it was probably after about six months of writing daily. And so I mean, I can't do the math that fast. I mean, I, I was well into 100 posts before my very first comment, and somebody said, Wow, I was going through this exact same thing. And your feedback here really changed my mindset on it. And I'm going to try this and you know, make changes in my life and whatnot. And I just thought, wow, I just changed somebody's life. Like I just changed how somebody thinks about something simply by me just typing on a computer. And then it just that was kind of that first, like, I'm actually helping other people by just getting out the words that are bothering me. And then it just kind of took off. From there. I just started writing daily and just I started meeting other people. You mentioned previously speaking to people on Twitter and a little bit of Facebook back then, but just meeting a ton of different people online, and just writing and writing and writing and writing and just sharing my story. And it was just, you know, I was never very edited in my blog post. And even my wife would always say, Did you know that you spelled this wrong? Or you said this? Like No, because I type and I wrote the way that I speak and it came out that way and it was just how, you know it was I didn't have a you know, a very like a very edited style. And it just kind of, you know, people kind of just connected with it and it was just Every time I would get a new comment or a new share or something it felt it just felt motivating to know that I was helping people by getting those stories out there.   Stacey Simms  25:08 It is funny. That's one of the reasons why I love podcasting, because there is no editor for my grammar or my spelling. And I have transcripts now. And those are very difficult for me because I usually we clean up the diabetes language because my transcription software doesn't speak diabetes very well. But I'm not correcting the grammar and the spelling from pot. Yeah, it's really, really interesting. And I'm going to link up your your blog if that's okay. Because I think a lot of those older posts in itself, a lot of residents, I mean, I blogged as well. It's starting in 22,007. And I think two people read that blog, but I've kept it up. Well, I just like you I got so much more out of it right. For me, it was perfect for me, I got I got a lot of help, just mental health assistance for writing it almost like a diary. But it has been in the last couple of years, people have found the goalposts and it's helpful because diabetes issues change, but not really, right technology changes things, but not really,   Chris Stocker  26:03 you know, I still get notifications of comments on posts that I wrote back in 2010 2011. And one of the areas and this kind of circles back to my daughter's diagnosis is that I wrote maybe, I think I wrote two posts total about my fears of one day having a child B die, those with diabetes. And to this day, those are still some of my most, you know, most read posts and most commented posts and people to this day still comment or send me emails like, hey, how did you go about this? Or how did you deal with this? And, and it's just, you know, those are things that I wrote, five, six years ago before I even knew I was having a child. And it's still relevant today as well.   Stacey Simms  26:43 Well, you're dipping your toe back into social media with, you know, YouTube videos, you're on Instagram, are you podcasting again,   Chris Stocker  26:49 I, I am not as of now, but I'm not saying that I'm not going to. It's funny, I did start a podcast, and I recorded two episodes. And my daughter was then diagnosed. So I kind of stopped. You know, I   Stacey Simms  27:05 mentioned that when I started this podcast in 2015, it seemed to be kind of like, I don't know, for sure. But from my experience, it was like this high point of activity online for certain a certain group of people. And a lot of those folks have kind of moved on or paused and come back. And, you know, I wonder too, if there isn't just a natural life to some of this old natural burnout to some diabetes stuff. And you've been very open about those kinds of things. Can you share that part?   Chris Stocker  27:31 Yeah, absolutely. So once my daughter was diagnosed, kind of everything just kind of went on Paul's it was this is our focus. Right now, this is everything that we want to focus all of our efforts on that I was actually going back to, I was getting my real estate license at that time, as well. So there was a lot, a lot going on at that time. And once I decided to start getting back into writing, I sat at the computer probably 20 different times to start writing about my daughter being diagnosed. And I was just filled with diabetes just all day long, whether it was I was managing my own diabetes, and my alerts were going off, and then it was time to check my daughter's blood sugar and then give her insulin and do her calculation, then do my calculation. And it was just too much that at the end of the day, or the the start of the day, I just didn't want to, I didn't want to think about diabetes anymore. I didn't want to write about it, I just kind of wanted to manage it. And that was it. And I definitely felt a disconnect from the diabetes community. Because I just kind of just left I just I shut down. And I just didn't want to be involved with anything. I didn't want to see posts, I didn't, I didn't want to read people's posts, I didn't want to watch videos, I didn't want to listen to anything, I just wanted to kind of just deal with that. And and it was just, it was a lot at once. And that's kind of what shut everything down for almost a year and a half. And then I started to write again a little bit, and they kind of came back to me where it was, I can remember the exact moment I was writing a blog post and my low alert went off and within five minutes, my daughter's low alert went off. And then my Omni pod alerted me that I had a low reservoir. And my daughter's went off about 15 minutes later that hers was being changed that night. So we were both having a low both theater pots change that same night. And I think that I actually had to change out my CGM that night as well and it was just a complete overload and I said are stopping again and I can't deal with this I need a mental break from from diabetes and I need to be at my strongest in order to be that you know role model and example to my daughter and I felt that let her see me get frustrated with with an alert or an alarm and and be like oh, I have to change that tonight or hi we have to do this or I'll have to drink a juice. I tried to never let her see that and never let her see that. There may be some frustrations that come with living Diabetes,   Stacey Simms  30:01 I'm hesitating, Chris, because Far be it from me to armchair psychologize anybody, but I want to plant this in your brain. And I agree six years old is not the time to do that. But I hope as she gets older, you do allow her to see some of those frustrations. And again, I'm not your doctor, or psychologist, right? I think if you were my dad,   Unknown Speaker  30:22 I hope this really is not at a place, I'm such a nosy person. Mom, I   Stacey Simms  30:27 become that we're my dad, to share those experiences, you know, when somebody shares the bad as well as the good, it just makes your bed feel not so bad. So when she's like, 10 1112, you know, those are the times when you guys I know, I know, it's in your future that you're going to share all of that, and she's gonna appreciate it so much. But I I agree, because I remember with Benny, you know, at six years old, you're just, you know, it's like, you know, you gotta brush your teeth. So you don't, you know, you don't get carried away. Everything's fun.   Chris Stocker  30:55 Yeah, I mean, it's, you know, it's a struggle at times, just to every three days, when a new pod has to go on, you know, she has to be watching either a cartoon or using the iPad, some some type of distraction. Now, we don't plan on doing that forever. And we've already kind of slowed that down a bit of what we let her do to kind of distract her from it. But I know that that's going to change in the future. And those are definitely, you know, some conversations that I would definitely have with her about the frustrations and stuff. But I think my thought process behind it is that if she sees that I'm getting frustrated of having to put on a new ami pot or put on a new Dexcom that she's going to think that it's so you know that she's going to put up by force who and and it's just something that I know will come one day, but I'm just trying to push it off as far as far   Stacey Simms  31:44 and I think you're very wise, because I will share with you that Danny ran away from insets. He had to bid pump his whole life. And you know, every three days, you're teaching the inset, and we tried everything Chris, we did, you know, numbing cream and ice cubes and rewards and he ran away from them. It was a struggle until about age eight or nine. And then it amazingly got better. And now he does everything himself for the past, I want to say three or four years even. And it's and then some kids start doing everything themselves very early. Right. I think when you're diagnosed tiny the trend that I noticed anecdotally is that it takes them longer just to be completely independent, because that's how they've been taught. So I don't take that iPad away before she's ready. She'll let you know when she's ready.   Unknown Speaker  32:26 You're right,   Stacey Simms  32:27 she will, it'll be fine. And I will tell you one funny story. I don't know if I'll keep this in because I'm talking too much in this interview. But we were laughing the other day because I used to let Benny say what we called potty words when he changed his incident. So right, we put it on and he could be like, oh poop or whatever. And I said to him in the kitchen the other night, he came down to change. And I said do you want to yell some potty words? And we were hysterical of the thought of thinking of my preschooler yelling real curse words, like Could you imagine if you know what he thinks of potty words today, so you can fill in the blank on that.   Chris Stocker  32:58 I like that. I like that idea. Actually, she will probably enjoy.   Stacey Simms  33:03 I think we would all like to yell some potty words when we're doing stuff.   Unknown Speaker  33:06 Absolutely.   Stacey Simms  33:07 Let me ask you about your your second child because your wife was pregnant, which had to be so stressful when your daughter was diagnosed during that time. And you had, as you've said, you'd already been nervous about any of your children being diagnosed. Again, I feel like I'm being very nosy. But What went through your mind at that time.   Chris Stocker  33:25 So initially, I mean, my initial thought was the stress that was going to be put on my wife and her being pregnant at that time, and making sure that she was okay with it, and trying to comfort her as much as possible and try to take away as much of the stress that I could possibly do, you know, from a mother, and, you know, knowing that she was pregnant, we knew there were chances. And it was just a decision and conversations we had throughout our relationship. And before we were married, we're gonna have kids no matter what it's what we want to do, and we're not going to let the thought or the chance of something stop us from doing anything. And that's kind of our, our thought process in life in general. So we knew that we were going to, you know, have wanted to have a second child. And we actually were scheduled to find out whether we were having another daughter or not. On February 13, I think and my daughter was diagnosed on the 12th. So it was actually in the same hospital. My wife left and went, you know, down the hall and oh, my God on the elevator and went like two floors down. And, you know, she did what she had to do there and then so we were you know, planning on having this big celebration to find out if we were you know what we were having and next thing you know, we're we're in the hospital for a totally different reason.   Stacey Simms  34:48 I gotta be honest to Chris, I love talking to dads of kids with type one because we hear so much from moms, right, so many of the bloggers and the writers and podcasters like me Moms. So let me ask you as a dad, now not as just a person with type one, but as a dad of a child of type one. What advice would you give newly diagnosed families, I mean, you're almost you're two years into this. Now you know what worked.   Chris Stocker  35:12 I would say that just being open, especially with you know, your spouse about how you may be feeling about it, I think a lot of times that the reason why we don't hear dads speak out too much is because they want to be the backbone, they want to be the strong one they want to, to not show that they're upset and show their feelings. And for me, I've been open with my wife, me and my wife, we've had conversations, we've cried together about it, we've talked about things that I let her know, my fears that I may have over things about it, it has helped tremendously, because there are times where I just say, like, Hey, listen, I need a break tonight, I can't do this, I've had a bad diabetes day, I'm stressed out by this, I'm just getting upset about it, I need a break. And that open communication has really helped us become an amazing team. And quite honestly, my wife almost entirely manages my daughter's diabetes. At this point, I cannot express like how grateful and like, just proud and I'm amazed by how my wife has taken this on and have she just tackled this head on. And I mean, she's pretty much almost managing my diabetes at this point, telling me how many carbs are in my meals and this and that. So going back to being the dad is that I just think that it's okay to you know, you just have to be okay with having those uncomfortable and vulnerable conversations and, and just know that it's for the better good, like, let your guard down, let it out, it's going to help that you don't have to just be you know, the strong one, you know, every single day in every single situation where it is okay to just let your fears out. And if you need to talk to somebody, talk to somebody find somebody that you know, you may have something in common with and just get it out and talk it out. And it feels so much better. Even having diabetes for 1415 years before she was diagnosed, I reached out to other dads have type one kids that I knew from meeting in the community and had, you know, conversations with them, like, what do I do from here? Like, I know how to manage mine, but like, What do I do? How do I do this? How do I tell her this? How do I explain this, and that helped me tremendously. And that's part of that community feeling and knowing that, you know, for all those years, I was, you know, putting into the community to be able to reach out when I was the one in in need of help. And it was great to have that community there to let me know, like, You got this.   Stacey Simms  37:40 I'm curious, if anything in the last two years with your daughter has surprised you any of your reactions to things or anything that she's done, you know, you were not six years old or four years old, when you were diagnosed, did anything surprise you about her diagnosis or your experiences with it or your reaction?   Chris Stocker  37:57 I am not kind of glued to the Dexcom as much as my wife is. And my wife is with my daughter a lot more during the day than than I am as well. But one thing that my daughter does is she knows that if she's going to be you know, she's playing upstairs in her room, she needs to now take her phone with her or her Dexcom actually with her and she will let us know. I think she was only diagnosed for maybe three or four months, the first time where she said to me, daddy, my knees feel wobbly. And my initial reaction was, first of all, how do you know what the word wobbly means. And second of all, let's get the meter out. And let's check real quick. And I can remember we were in target which another place no matter every time I go in there, it ends up in a low, but we are in target and she said her knees felt wobbly. We checked her she was 41. And I just remember picking her up and sprinting to the front of the store and just finding the first juice I can find and just said just start drinking and I remember her asking about paying for it or something. I'm like drinking it don't you don't have to worry about that. I'll figure that out. Just start drinking. So that was probably a surprising moment to me of her letting me and this was before she had Dexcom. So that was very kind of surprising moment to me that she used the word wobbly and she knew that she fell off. So now she does that quite often now where she she says I feel low. She'll Look at her Dexcom and just randomly I'll just hear her scream out 125 or something. Okay, I guess that's what her number is so low that she she has taken that on as you know, she's kind of proud, not kind of she's extremely proud to have diabetes. You know, she in her classes. She talks tells people that she has diabetes and whatnot. So she definitely surprised me of how proud she is to wear it. That's awesome. That means you guys are doing an awesome job as parents. That's something we actually did kind of talk to her about that she doesn't ever have to be ashamed or, you know, she doesn't have to be scared to tell somebody that she has diabetes. In fact, you know, because my philosophy has always been I want to tell you that I have it because in case something Goes go wrong. I want somebody around me to know   Stacey Simms  40:04 this before I let you go, you have been posting you know more on Instagram and you're really getting back into it. And I noticed you posted a lot about your daughter and her reaction to the virtual friends for life conference. And I, I was part of that. And I gotta tell you, I wasn't sure what to expect me this isn't a commercial for friends for life, even though we love them. But I was stunned at how good it was to connect even virtual with people. You know, we're all stuck at home, we can't get out to meet up. But I loved that conference, did your daughter have fun? There was so much for kids.   Chris Stocker  40:35 She had an amazing time. I mean, she still talks about it almost every day. To this day, she talks about the different events that were going on, she talked about playing bingo with with the guy from Toy Story. She talked about the all the animals that are Parker Ranger that was there. And I mean, she loved it, she loved seeing other kids and hearing other people talk about it. And we were planning on going, you know, this year in 2022 it so it was something that she already knew was going to happen. And you know, the day was over, she was she started crying. She was so sad. She couldn't wait till the next one. And it was just, it was a you know, it was life changing to her because, you know, she had only known me and her cousin that had and a few other people that she had met that had diabetes, but to be opened up to this world of all these other kids that were living with it and we're all sharing their different CGM and their different pumps and seeing a different perspective other than just her life and you know, my life with it was just absolutely amazing for her to experience that even virtually, it was just amazing how smooth it went. And and all the activities that were there for the kids. Yeah,   Stacey Simms  41:50 I mean, I gotta be honest with you, I didn't put a lot of time because I figured, well, you know, I'll do my speech. And I'll watch one or two, the research updates. I was hanging out in the social hallways, you know, with my mom, friends, it was great. I was I thought it was a very well done. And so we'll put a plug in because they've got the march one coming up. And we put a link in the show notes. Is there anything else Chris that you wanted to push people to or to you know, to put all your links to follow or anything that you've got coming up that you wanted me to make sure to mention,   Chris Stocker  42:14 people can follow me on on Instagram, it's just life of a diabetic, it is a newer account, because I am trying to keep it separate it from a personal Instagram account that I had previously. And it's just just to keep things simple and clean. I've just kind of started a new one. And I am putting out weekly YouTube videos now so they can check that out, you know, with the link in the in the show notes, but I just hope that you know, I can continue to help people and share my story and also my daughter's story. And as long as it helps one person, I feel that all the work and effort that goes into it is well worth it. That's awesome.   Stacey Simms  42:51 Well, no doubt you'll be helping other parents and other adults with type one. Chris, I can't thank you enough for coming on. It was so much fun to talk to after connecting online for all these years. I really appreciate it.   Chris Stocker  43:00 Absolutely. I appreciate you having me on.   Unknown Speaker  43:07 You're listening to Diabetes Connections with Stacey Simms.   Stacey Simms  43:13 More information including Chris's YouTube channel and his Instagram and all that good stuff will be in the shownotes. And that is always on the episode homepage as well. So if you're listening in an app and it doesn't show you what you want, just go to Diabetes connections.com and find the episode should be very easy to do. I should let you know he mentioned it went by quickly when he was talking about friends for life. He mentioned the Toy Story guy playing Bingo. what he's talking about there is john Ratzenberger who people might remember as Cliff Klavan from Cheers, but who has been a voice of a character in every Pixar movie, his son lives with type one. And Tom Karlya who's a very big part of friends for life, and also the Diabetes Research Institute. He knows him through his work through the DRI together. So Tom brought john to friends for life this year, which is really, really cool. And as I mentioned, they have another event coming up in March and I will put a link in the show notes on that. Tell me something good 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 there was share. I think we had Dexcom for two years, almost two years before Cher was added as a feature. So you know, we know using Sharon follow makes a big difference. To this day Benny and I set parameters about when I'm going to call him how long to wait, you know, that kind of thing. It really helps us talk and worry about diabetes less. It helps if I need to troubleshoot with him. I love this you can see what's happening over the last 24 hours and not just at one moment in time. The alerts and alarms that we set help us from keeping the highs from getting too high and jump on lows before they're 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. Our first tell me something good story is one I wish I had jumped on myself. But I read about it at diabetes mine and Mike Hoskins always does great work over there. And I had to share it with you. Dr. Drew Weissman at the University of Pennsylvania is one of two key researchers behind the science used to develop the first COVID-19 vaccines. And he lives with type 1 diabetes. He was diagnosed more than 50 years ago, he didn't announce that he had type one, you know what he was in the news for this vaccine. But apparently some eagle-eyed folks by the photo of him getting his own COVID vaccine shot and they saw that he had an insulin pump on and I'm looking at the photo, as I'm telling you this, he's getting the Pfizer vaccine. And you can see it looks like a Medtronic pump on his waist. I will link up the story from diabetes mine, which is a great conversation with him, including photos, and Great job guys getting that done. Maybe we can grab Dr. Weisman and get him on the show. Our other bit of good news comes in the form of more books for very little ones with type 1 diabetes. We've had folks on the show before who are authors of children's books, which I think are a really vital part of young children's care when it comes to type one. I know reading books like this to Benny, and bring these books to preschool and kindergarten and really willing to elementary school helped give us friends a good understanding. And you know, just seeing yourself in a book is a wonderful, wonderful thing. So I just want to mention a couple that are newer out there. The Adventures of Captain Lantus is one that I have seen a lot of this focuses on seven year old Maxs, who has type 1 diabetes, and it's kind of a fantastical adventure, because everyone in beta town has type 1 diabetes. So this is a real fantasy story and very cute stuff. Brandy in our Facebook group in Diabetes Connections, the group published her T1D toddler book, it's called Little shots for little tots. And it is also very cute looking. And one that I think is actually a pretty important one is called when I go low, a type 1 diabetes picture book. This is by ginger Vieira. And Michael Lawson. And we have talked to both of those folks on the show about other books that they have put out there. But this is a book that I wish I'd had when Benny was younger. The other ones are great stories and always fun. But this teaches about when a child is low, what does that feel like? What How do you articulate it? You know, what should you know about it, it's a great way to get young people with diabetes to talk about what low blood sugar feels like, and to help explain to their friends and friends, families and kids at school and that kind of thing. So I will put the links to all of these guys. They're all on Amazon. And I'm sure they all have their own author pages as well. But there are so many great books about diabetes right now, if you've got tips, or you'd like to hear more, I had thought about in the past doing book reviews, but I don't have the time. So if that's something you're interested in, let me know, we could have an ongoing segment or something. I'm gonna be looking for new Tell me something good stories in our community. So please keep an eye out for that. I love to ask in the Facebook group. And you can always give me your good stuff. Before I let you go quick reminder, if you are a podcast person, if you are thinking of starting one, if you have one, I have a podcast course it has nothing to do with diabetes. This is all about podcasting, and learning about podcast sponsorship in an ethical way, in a way that makes sense for small businesses. You know, I'm not Amazon podcasts here, or Wondry, or Spotify. This is about independent podcasters who want to serve their communities and make some money, enough money to cover the costs of the podcast or perhaps make a living at it. So I've launched a new course there's a free webinar coming up, I'll put all the information in the show notes. And if you're just here for diabetes, which of course I think 99% of you are we have another classic episode coming up later this week, we're going to be talking about spare arose. But this isn't any spare a rose, informative interview. This is my very first game show that I did here on Diabetes Connections and it features some very familiar names, some very silly stuff, and a couple of mistakes along the way that we left in. So that should be fun, and that should be out on Thursday. Thank you so much to my editor John Buckenas from audio editing solutions. Thank you so much for listening. Until next time, I'm Stacey Simms. Be kind to yourself.   Benny  49:21 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

What is it like to actually give someone emergency Glucagon? What happens next? This week, Stacey talks to Bonnie O'Neil whose son was diagnosed with T1D at age 5 and is now 24. They had a scary situation while on vacation and out of the country. Everything worked out; Bonnie shares what she learned and what she wants other families to know. Bonnie is the author of a brand new book: Chronic Hope (learn more here). She has a unique family history of diabetes, losing a brother before she was even born and has a older sister who is still thriving today. In Tell Me Something Good this week, a big honor for one of our favorite frequent guests and fun news if your child plays Minecraft. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.   EPISODE TEXT HERE... Check out Stacey's 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 Daria health. Manage your blood glucose levels. Increase your possibilities by Gvoke HypoPen the first premix 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 this week, what is it like, what really happens, when you need to use that emergency glucagon, I talked to a mom who found out while on vacation out of the country,   Bonnie O'Neil  0:37 I was just all I could do to stop my hands from shaking and mix that glucagon and get it in him. So point number one was when you go on vacation, make sure that glucagon doesn't stay in your hotel, keep it on your person you just never know.   Stacey Simms  0:52 Bonnie O'Neil's son was diagnosed at age five and is now 24. She has advice about using and carrying glucagon. She also has a unique story. She'll talk about growing up in the shadow of a family tragedy with diabetes, and how she and her sister have overcome that in tell me something good this week, a big honor for one of my favorite frequent guests. And does your child play Minecraft? Stay tuned. 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 where we aim to educate and inspire about diabetes with a focus on people who use insulin. My son was diagnosed with Type 1 14 years ago, my husband lives with type two diabetes. I do not have diabetes myself, I have a background in broadcasting. And that's how you get the podcast. longtime listeners will know that this show is not really about our experience my family's experience of diabetes week in and week out. I don't share a ton of personal information about Benny, but we do talk about our experiences. And I bring that up because I did a show recently with him to mark 14 years, which was a pretty big milestone. And we've done a couple of shows together over the years. I always say Benny is a big goofball. But you know, he's got good things to say I like to talk to him. I'm very proud of him, even though I give him a hard time. And I got a really nice review that I wanted to share. I don't ask for reviews very often. Maybe I should if you'd like to leave a review, you can send one to me at the email address at Stacey at Diabetes connections.com. You can leave them on whatever podcast app you're listening to. You can drop them in the Facebook group. But this one really was nice. And so I wanted to share it and say thank you to Ruth Ann, who posted it following that 14 year episode where I talked to Benny and she says “I listened to it yesterday and came away feeling understood. I've had type one for almost 45 years diagnosed at age 12. Then he was honest in the way teenagers can be when they don't feel pressured to spin things to make other people happy. I found him incredibly inspiring.” She goes on to write “To me The message was you can be upbeat about life. But don't succumb to pressure to sugarcoat the hard realities of managing type one. I think being real is the healthiest approach to coping with a challenging chronic illness. Please tell him thank you from a grandma in Utah, Ruth.” And I will say thank you to you. That meant the world to me. I agree. I think it's so important to be honest to write that line of diabetes can't stop you from doing the things you want to do. But it will stop you and slow you down sometimes right not to sugarcoat things too much. I really appreciate you taking the time to write that down and share it with me. And of course, I will share it with Benny and Wow, good luck to you. 45 years with type one, you're the inspiration. If you would like to tell us something always happy to get nice messages like this. I'm always happy to take constructive criticism as well. I do have a few people over the years who have yelled at me. But I think I'm pretty easy to find either on social media or via the email address. And you can always go to Diabetes connections.com and get all the contact information there. But Ruth boy you made my day All right, we're gonna talk about using glucagon what that is like, and Bonnie's really interesting story in just a moment. But first Diabetes Connections is brought to you by Dario health. You know, over the years, I find that we manage diabetes better when we're thinking less about all the stuff of diabetes tasks. And that's why I love partnering with people who take the load off on things like ordering supplies, so I can really focus on Benny, the Dario diabetes success plan is all about you all the strips and lancets you need delivered to your door one on one coaching so you can meet your milestones, weekly insights into your trends with suggestions for how to succeed, get the diabetes management plan that works with you and for you. Dario has published Studies demonstrate high impact clinical results, find out more go to my radio.com forward slash Diabetes Connections. My guest this week is here to talk about using glucagon and I think we can all From that, but she has another important story that I don't want to gloss over. Bonnie O'Neil has been part of the diabetes community since before she was even born. bit of a warning, this may be hard to hear Bonnie's older brother died when he was eight, his type one went undiagnosed until it was too late. Now, this was back in the 1960s. But we know that's still gonna happen today. Her older sister was later diagnosed, she survived and is still thriving now. And Bonnie has a new book out. It's called chronic hope. So there's a lot to unpack here, including that very valuable information about her family's experience with glucagon. I found this to be a very valuable and eye opening conversation. And I hope you do too. Bonnie, thank you so much for joining me. Congratulations on your book. And I'm excited to learn all about you. Thanks for jumping on.   Bonnie O'Neil  5:48 Thank you for having me. I'm excited to be here today. Stacey,   Stacey Simms  5:51 tell me about your son. But he's doing now because he was diagnosed as a little kid. And he is all grown up now.   Bonnie O'Neil  5:57 Yes, I've lived all the stages with him. So he was diagnosed as a five year old and he is now 24. So he's living not too far away from me about 15, 20 minutes, which I guess is every T one D mom's dream when their kid grows up that they live independently, but yet, we can still get our eyeballs on them and our arms around them from time to time. So yeah, he's doing great.   Stacey Simms  6:22 You it's funny because being diagnosed, what does that 19 years ago? Isn't that long ago. I mean, my son was diagnosed 14 years ago. But in some ways, it feels like a different world. Do you mind taking us back to that time, if you could tell us the diagnosis story. And I'd love to also talk about what you all started in terms of management.   Bonnie O'Neil  6:41 Sure, yeah, that's actually an interesting story. So I have diabetes in my family. So my brother was unfortunately died in the diagnosis process when he was eight years old. And that was before I was born. And so my parents had me in their 40s, basically to, you know, replace the child that they had lost. And then my sister was diagnosed when she was 16. And I was eight years old. And so I just grew up with it. We grew up with this fear of it being there. So I was always on the lookout for it. And I remember my first pediatrician when I want to have my first child, I said to him, so how do we test for this thing? Because I don't want it to be in in my child. This wasn't Austin. This is my oldest son, Alexander. And, and he's like, oh, Bonnie, you know, it comes on acutely. We can't just run a blood test every every few months, but you'll know it if you ever see it, frequent urination, and intense thirst. And so I was always looking and so the day that I noticed that in my son, Austin, you know, obviously, there's the major panic, but I had grown up through my three pregnancies, I had done the urine testing for gestational diabetes. And so I knew exactly what to do. I went to the pharmacy, I bought a test kit, and I dipped Austin's urine in it, and it turns deep crimson. And so I diagnosed him at home freaking out going to the doctor and saying, they're like, calm down. This is Odile, like it, maybe it's not type 1 diabetes. I'm like, Well, do you know what else it could be? And so we, you know, I bundle up the three kids and we're living in Connecticut at the time, I took them over to the pediatrician. And he didn't have ketones, because we caught it so early. And so their practice was leaning into something that they told me was what Yale was practicing at the time, although I have an endocrinologist friend from Yale, who assures me they never offered, I suggested that, but the thinking was, if your child doesn't have ketones, you don't admit them to the hospital. Hmm. So we went home, we literally went home without so much of the shot of insulin. As you can imagine, I was just freaking out because my brother didn't make it through his diagnosis story. So I was like, you know if you can remember Terms of Endearment and Shirley MacLaine, like shaky over the crib. Yeah, that was me that night, just like leaning over my son and just making sure all night long that he stayed alive anyway, that the pediatrician, the endocrinologist that my pediatrician was able to find for us was one who really didn't work with pedes. The youngest children they saw were really about 15 or 16. So we saw him The following day, and the long acting insulin that he gave him was Lantus.   Stacey Simms  9:37 I was wondering if that was even approved, because I remember was not really 2000 so it was for little guys.   Bonnie O'Neil  9:43 Okay, it was not it was it was not under age 10 and so I don't I didn't know any of that you know, and so, so that was the first there's two things that were very interesting in our in our care different so that was the one and then when we got to CHOP the Children's Hospital. Philadelphia. A week later, I forgot to say all this diagnosis happened exactly one week before we moved house from Philadelphia. Oh   Stacey  10:07 my god,   Bonnie O'Neil  10:08 I never recommend that moving house be part of your diagnosis to be that as it may that was our case. And so when we got to CHOP our the endocrinologist there was actually very keen to see know what would happen to this child being on Lantus at age five, I'm pretty sure that it's going to work out well, I can't prescribe it. But he came to me that way. So I can leave him on his protocol. So that was interesting. And it worked beautifully. So my son never used NPH. And I had friends at that time, who were very familiar with that insulin and just told me how fortunate we were that he never had to be on that. So that was one thing. And the other was, so my sister, the reason I gave you the backstory on my sister was that I grew up in a family of using exchanges, where you counted your you didn't count carbohydrates, but you looked at food, in terms of whether it was fat, or protein, or carbohydrate. And you gave each one an exchange. And so I was used to that world. And I literally was given a counting book that had both on it, it was the exchanges and the carbs. And it was kind of you could do it however you wanted. They were recommending I just use the carbs, but the exchanges were there as well. So that was interesting. Oh, and then there's a third one.   Bonnie O'Neil  11:33 But I remember. So his diagnosis was shortly after the DCCT trial, results came out and talking about intensive insulin therapy and how important that was. And I remember several visits, going in and talking to my CDE and saying, I'd really like Austin to be on that intensive insulin therapy. And she would, she would look at me like I had 12 eyes and like to say something, and I didn't understand what she was saying. And she didn't understand what I was saying. And it was many months later that I realized that Austin was   Stacey Simms  12:11 using Lantus and short acting together. Yes, exactly, was   Bonnie O'Neil  12:14 exactly. So yeah. So I was sort of living in some a couple of old paradigms and had to get with the program pretty quickly. Yeah,   Stacey Simms  12:22 but what a transitional time. Here was that that he was diagnosed,   Bonnie O'Neil  12:26 it was 2002. Yeah. And I'm so thankful I that is it is that so spot on Stacey, because just a few years earlier, and and the story would have been very different. My sister's story is very different. Sure.   Stacey Simms  12:37 And let's talk about your family for a moment. If we could be there's so much information there. You mentioned your brother, gosh, I can't I'm not even sure what to ask. But he died before he was diagnosed or during his diagnosis story. Was   Bonnie O'Neil  12:48 this in the 70s? The 80s Yeah, it was 1962   Bonnie O'Neil  12:57 Yeah, yeah. So my sister was six years old, my my sister Barb, and my sister Johnny, my brother, Johnny was eight. And so it was Christmas week, and my sister had the stomach bug. And a couple of days later, after she got better, my brother started throwing up. And they assumed that he just had the stomach bug as well. And he may have had that, but it clearly he then slipped into decay. And so by the time he got to the hospital, which was actually New Year's Eve, what he was in a coma. And so he passed away three days later, to make the story even more unbelievable. My mother delivered my sister Betsy, just nine days after that.   Stacey Simms  13:43 Oh my gosh. Oh my goodness. Yeah. You know, DKA is I don't have to tell you this. You know, it is the most dangerous time for people with type one and it's amazing to me how now. Gosh, we are you know, more than 50 years after what happened with your family with your brother? Yeah, we are still having something like 30 to 40% of people who are diagnosed with type one diagnosed in DKA, I know you work a lot are you you've written a lot with beyond type one. You know, are you involved in efforts? Do you see the you know the DKA awareness that's something that you you talk about.   Right back to my conversation with Bonnie and we are going to hear her talk about glucagon in just a minute or two. And when you hear her talk about the emergency redbox, please remember, there are more options now and Diabetes Connections is brought to you by one of those 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 Gvoke Hypopen comes in. It's 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. Find out more go to Diabetes connections.com And click on Gvoke logo. Gvoke shouldn't be used in patients with pheochromocytoma or insulinoma, visit Gvoke glucagon.com slash risk. Now back to my conversation with Bonnie and I just asked her about her family's tragic experience with DKA and how that's influenced her with what she does now in the diabetes community.   Bonnie O'Neil  15:22 Yeah, I mean, I do write for beyond type one, and I'm very active with JDRF. I'm on the board of the founding chapter, the greater Delaware Valley chapter. And I know that we're doing a lot of advocacy work around that and, and even just trying to get the shift in titling someone has type 1 diabetes, a JDRF, has done a lot of work around that, and is seeing that that shift so that it's, you know, reframing it, so it's not Oh, they got diabetes, or my son didn't get diabetes on June 19 2002. That was when we discovered that he would be insulin dependent for the rest of his life. He was developing the disease before that. And so we're trying to change that language. I think we're making progress. So that there's there's an understanding that you are, you know, certainly with some of the antibody tests, that testing that is being done now to be able to know that, you know, this person's body is being set up to get the disease, you know, if you have, I think it was three out of the four markers. It's, yeah,   Stacey Simms  16:31 well, and I was gonna ask you about that, about T one detect, we just did a show on that. We did an episode on that a couple of weeks ago. And when you think about something like that a person who has type one in their family, like you had and was so front of mind, I would imagine that you would have taken advantage of that with your kiddos, you know, years and years ago.   Bonnie O'Neil  16:48 Yeah. And, you know, back then, and that was something that I asked my endocrinologist was, so should we do any sort of testing and their response, and I had to agree with it was, well, there wasn't anything that they could offer. Other than Gee, I'm really sorry, it looks like your child is probably going to get type one. So the way I've handled it now, as a mother of two adult children who don't have diabetes, is that decision is yours. If you want to be tested, we can get you tested. If you don't want to, I have to respect your decision.   Stacey Simms  17:25 One of the things I really was looking forward to talking to you about and looking forward as a term I really should not use there. But I was very interested in is you were one of the few people I know who has had to use glucagon on their child, and then wrote about the experience. So I really appreciate you talking about this publicly. It is a fear that so many people have, you know, we have never had to break out that red box. And I'm so thankful for that. Would you share that story with us? You're even at home, right? You're on vacation?   Bonnie O'Neil  17:54 Yeah. And I'd be happy to because you know, it's a it's a story that still brings up a lot of emotion in me, but it does have a happy ending. And there are some good takeaway points for your listeners in terms of preparedness. So yes, I'm happy to share the story. My family went on vacation to Costa Rica. So it was my oldest son's first year in college, Austin, that would have made him a sophomore, I think in high school and my daughter would have been eighth grade. And we realized that all the spring breaks were aligning all three kids were in three different schools. And we're like, Yes, let's go and do something fun. So we plan this, this sort of dream trip, you know, where you're going to be renting, staying in a treehouse. And like, I'd have some time at the seaside all kinds of great stuff. So adventure, but fun. Yeah, so we get there and the very the very next day, I think we got there like late afternoon. So the next day, spent a little time poolside and then decided to go to this restaurant for lunch that was literally like an oasis on the seashore. So like in the sand cluster of trees and this restaurant was in these trees on the sand. And so it's just a walk up the beach, it was probably, I don't know, 20 minutes of a walk. We get up there. My son Austin actually ordered the only sensible meal he ordered a pizza which is cooked my husband and I ordered cbj which is raw and my other two kids ordered some sort of salad again raw and when you're in a developing country, you should go cooked rather than right anyway. So you know it was a big piece of pizza and or you know, personal pizza. And so we give this was before wearing a Dexcom so we have no arrows indicating the dress. In which his blood sugar is going, we just have a blood sugar of somewhere around 250 probably. So we have to give a nice correction dose, I have to give the combo bolus that we were doing for the pizza to accommodate for the, for the fat. So it's gonna be dripping in for a while. And I didn't factor in the walk that he had just had. So right after lunch, he and his brother asked to go into the sea and play. I'm like, Sure, that's fine. So they did about five minutes later, he came back and he said, I feel shaky. So I tested him and he was in the mid 60s. And we ordered him a coke. And he started to drink. And still his blood sugar wasn't going up. Eventually, he drank the whole big bottle of Coke, and still really wasn't going up. And I was getting a little suspicious. And then he said, I don't feel well. I feel nauseous. And then I knew we were in trouble. And your mind just immediately goes to like, the cheese was tainted. The basil on it hadn't been washed and was in was unclean. Something, you know. Yeah. And I knew that he had like, over 10 units of insulin on board. And then the next thing I know he he starts vomiting. And I mean, pardon me, but projectile vomiting. And this is one of those moments when you just snap into too high alert gear. And it's to my son, and my, my oldest son and my husband go back to the hotel, get the glucagon because of course the glucagon was with us. But it wasn't with us.   Unknown Speaker  21:39 Right? It was   Bonnie O'Neil  21:40 in the hotel, helping the pillows in case they had a low but now it was it was tucked away with all the other supplies. And so the two of them ran back along this shoreline. And I knew it would have to be at least 30 minutes before they would get back. Right? Because there and back. And actually my son got back before my husband did because the roads were so rutted and so circuitous, that it just took him forever, it seemed to get back in the car. So all the while I don't speak Spanish, I speak fluent French, I don't speak a lick of Spanish. And all of these people were trying to help me and they didn't speak any English. And they all they could do is bring towels and bags for my son. And you know, I knew that if he drank any more, he was just going to vomit it. So there was no point in trying to give him more to drink. And so we just waited. And I have never seen a sunset so fast in my life. Oh, I don't know if it was where we were located on the Costa Rica coast. I know we were having a late lunch. But anyway, it just started to get dim. And by the time my eldest son got back with the the glucagon and cuts all over his bare feet, it was just all I could do to stop my hands from shaking, and mix that glucagon and get it in hand. So point number one was, when you go on vacation, make sure that glucagon doesn't stay in your hotel, keep it on your person, you just never know. Point number two with practice that injecting or at least mixing up glucagon. Every year, when your glucagon expires before you throw it away. Don't neglect that gift of having the opportunity to practice drawing it up because I was going to ask you,   Unknown Speaker  23:27 did you ever do that?   Bonnie O'Neil  23:28 I did it every year, I never threw one away without mixing it up. Because I knew that if I ever needed it, I wasn't going to be able to stop and read the directions. I just needed to know what to do. Because the only reason you would use it is if you're in an emergency. And in an emergency. We don't think so clearly, or our hands are shaking, you might be thinking but your hands are shaking so much that you just need to go from muscle memory. So eventually my husband got their like gate. So I drew it up. I gave him the glucagon. My husband got there. And we're in the car. And I was just surprised Stacey, his blood sugar didn't come right back up. I expected it would come up to like, I don't know, a perfect 110 would have been nice. You can even give me a question 150 I'd be happy with and if it didn't, it was I don't even know if it hit at oh well. And so I remember being in the dark in the backseat of that car just like trying to get every little whiff of the glucagon out and into him. And, and then I just realized I don't have another glucagon. I brought one. I didn't bring two and he's not in a stable enough place. Like I we need a doctor. So thankfully, this was probably the nicest hotel we had ever stayed at. And and I'm really thankful because they had a doctor on call. So we as soon as we got back to the hotel, we asked the concierge to call for a doctor and he was there. Oh probably within 45 minutes, something like that. What did he do for you? Did he give him more like IV glucose? Yeah, so he unfortunately was this big, you know, had a big headboard, big posters on it, and like a poster board sort of thing. And he just hooked an IV up to him and tied it up to the to the bedpost. And so the following morning, when he came back, Austin had a fever by that point. And he said, You know, I can't rule out that this isn't appendicitis, you have to get an emergency surgery in Costa Rica, this was not what I had in mind. And long story shorter, what ended up happening was he said, You've got to get him down to the Capitol to San Jose, four hours back down the way we had come up, you know, just two days before. So we have to do that, you know, it could have been the fever could have been from the food poisoning, which it was, but he said, you know, we have to be safe, it couldn't be appendicitis or something else. And so that was the longest four hour ride I've ever had in my life.   Stacey Simms  26:02 Yeah, it was not appendicitis, it turns out to just be   Bonnie O'Neil  26:07 a lot it was it was just the food poisoning. And he spent three days in hospital. And there again, you, as a diabetes parent know more about diabetes than emergency room physicians do. And it's important that you know that and that you believe in yourself about that. My son, his freshman year in college had to go to the ER for the stomach bug. And there to the emergency room, physicians relied on me for what I knew about how to take care of his diabetes. And so when we were in Costa Rica, the attending physician gave me her cell phone number, and said, I want you to be in touch with me. If this doesn't come around, if his numbers don't go in the way we want them to, we're going to take the pump off. And we're going to do it our way. But I will give you it was basically I'll give you six more hours, I think this was like on day two or something. Because she was letting me manage his diabetes. Right? And but then she said, You know, we're gonna do it six more hours this way. And let me know how things go. And it did it worked out fine. So here's two more points coming to my mind when you're traveling. Don't just take one glucagon, you might need to use a second one when we were leaving the hospital. Among the other prescriptions that the doctor wrote for me. I said, Could you write me a prescription for glucagon because I use the only one I had. And clearly, my son didn't get a stomach bug. It was food poisoning. So food poisoning could happen again. And I want protection from that. And she looked at me with these beautiful, innocent eyes and said, Bonnie, we haven't had glucagon in this country in over 10 years. Wow. And so just don't imagine that it's going to be available for you. So travel with to glucagon when you travel. The other thing was, when we were in the hospital, the only ketone tests they were doing were blood ketone tests, they weren't doing any urine ketone test. So I had to wait until they would come back. You know, they weren't doing blood tests as frequently as we would expect to be doing our ketone tests. So again, don't just travel with a bottle that has maybe 10 ketone strips in it. I had a nearly new bottle of 50 ketone strips, and I was worried that I was going to run out   Stacey Simms  28:29 going forward. I assume you're filming like to travel? I mean, this was obviously a big trip and a big treat. Did you hesitate about traveling again?   Bonnie O'Neil  28:37 I don't think I'll go to Costa Rica. I'm nothing against Costa Rica. It's just the memories are. They're profound. I do try to pay attention to where there is a hospital, which is an easy enough thing to figure out. We have continued to travel that is for sure. In my book, I talk about another episode that happened after that, where he his insulin pump broke, and we were in France, and he had to get a we had to locate him a pump in a foreign country. So that's another fun story. But no, we've continued to travel, but I think it's just being safe, bringing your supplies with you and an abundance of supplies, checking to know where the hospital is. And I think it's it's just about being comfortable. Making sure that you feel comfortable where you are. Well, you   Stacey Simms  29:32 mentioned your book. Let's talk about that. Sure. Yeah. Oh, congratulations. That's Thank you.   Unknown Speaker  29:39 Thank you very excited.   Stacey Simms  29:40 Yeah. So why'd you call it Chronic Hope? Tell me about where that title comes from?   Bonnie O'Neil  29:44 Okay. Well, you might want to edit this out. I'm not sure so I was I was thinking about how much you know, I loved my my son and the care I give for him. This As a chronic condition and the title chronic love came to my mind. And that actually had been my working title for a little while. And as I was working on my book proposal, I did a little research little Google search on chronic love, and it was a porn site. So I changed the title. And actually, once I came up with the subtitle, chronic hope, is exactly what I'm writing about. We all love our kids, we do in a way that we show our love to them, especially as full time caregivers, that just cannot be disputed. But there's some times when we as the parents just lose our way on the hope journey. Because it's, it's so long and so complicated and can be so unforgiving. And we can be unforgiving of ourselves. The message really is hope for us.   Stacey Simms  30:57 I may have to lead with the chronic love, I think that forget about editing that out. That's pretty funny. Oh, my goodness. But you've had this story and you for a long time. I'm curious what caused you to kind of write it now to release it now?   Bonnie O'Neil  31:14 Yeah, good question. Well, I love to write. That's the first starting point. I've been writing for a number of years and have been honing that craft. And as I was thinking about what the next topic was, that I wanted to write about, it just felt like it needed to be a story that I've been living, something that was really true. And that it wasn't just something I'm going through now, which so many of my blog posts words like, you know, it's that short, quick blog post is almost like an instant word. It's like what you're going through at that moment, and you write, but I felt like I needed to write something where I had come out the other side, and actually had some wisdom to share. And once I sort of landed at that place, it was well, this is what I know better than anything else. And living this story out first with my nuclear family. And then with my family with my children, I just have been steeped in that for so long. I speak for the jdrf education conferences, that type of nation summit, and that one of the earliest ones that I did, I was speaking on the psychosocial impact of T one D on the family. And it was the first time I had delivered the that talk and I was I was sharing about, you know, my nuclear family and then Austin's diagnosis and how that impacted me. And I was just really honest, and, and raw, and I talked about my anger, you know, the disease coming back into my family, and just the challenges with my husband, when the two of us were not on the same page and the fear, I carried my need for control, wanting to control the disease, and all of these things. And as I'm looking up at the group that I was speaking to, like, everybody's dabbing their eyes, and sometimes, like really crying and at the end, one man said to me, So when's your book coming out? And I chuckled and kind of tucked that away. And it later, I think informed me very well as to what I should write about next.   Stacey Simms  33:32 What is your I mean, you have more than one son, and I'm sure they are your children are all featured in the book in their own way. curious what Austin? Right Austin? Is your son with time? Yes. I'm curious what what Austin thinks of this?   Bonnie O'Neil  33:44 Well, Austin is a man of few words that he's not   Unknown Speaker  33:47 going to do. Much.   Bonnie O'Neil  33:51 I made sure that in the advanced copies that I have, that he was, he received the first one. And he very graciously accepted it and then said, Thank you. He has congratulated me a few times and said he was excited. I did ask him before I really started the writing, and was just sort of outlining things. I asked how he felt about it. And he said he was fine. And I did say to him, and it's the Absolute Truth. If there's anyone who looks ugly in the book, it's me. It's never hand because I am raw with how I processed my emotions. Because one of the things I feel like in that for us, parents have a child that lives with such a complicated disorder. 24 seven, we take so little time to attend to how we feel, you know, because it's how can I complain when my child has to go through so much. And so we don't really ever name what it is that we're feeling and give ourselves permission to feel what we're feeling. And so then we can't really attend to it and move along from some of those stuck places and I really feel that the You know, the emotional health of a family begins with that center of the mom and the dad. And we need to get our stuff together so that we can create a healthy family emotionally.   Stacey Simms  35:14 I agree it's so interesting because we, as you know, an initial diagnosis. And though those first few years, we as moms, I think so define ourselves by diabetes, it almost seems like we have it like and you come to a realization that Yeah, do not be do not have diabetes, we do not have our child's experience. But it doesn't make the experience of being a mom of a kid with a chronic condition, any less valid. It's just a different experience. And I think I'm hoping, kind of saying the same thing you are in that once you realize that it's a mom, that it's okay to take care of what you are going through, knowing that's different from what your kid is going through, you kind of name it and take care of it and acknowledge it and talk about how tough it is. And right now until you can do that. It's so difficult. Yeah,   Bonnie O'Neil  35:58 it's a kid. It is. And I'm so glad now that there's such increased talk about soul care, because that at least is putting it into the forefront of everyone's minds now. But I think parents of a child with a chronic illness just really need that permission to say, I too need this soul care. I am going through mourning. This wasn't what I was expecting. I was expecting my child to have the freest life imaginable. And they still do. But especially in those early years, it's a lot, we have to mourn the loss of this perfect health we had envisioned for our child, and we have to deal with the fact that Yeah, we are tired,   Unknown Speaker  36:42 a lot.   Bonnie O'Neil  36:43 And it's okay to say I'm really tired. And I think even under, like coming to terms with the fact that a lot of our friends just aren't going to get it. And there's a loneliness that we carry here as the caregivers of our children. And it's okay, and it's not it's once we begin to name it and look at it and explore it a little bit, and how it's affecting us. That's the beginning of healing and freedom.   Stacey Simms  37:09 And I meant to ask you earlier, and it's okay, if you don't want to talk about this at all, how is your sister doing?   Bonnie O'Neil  37:15 She has struggled in the last few years with some complications. She has had, I believe gastroparesis for, I think it's close to 10 years that I think, went largely undiagnosed, and then has been quite problematic in the last few years. She's begun going actually to my son's retinal specialist for some treatments for her eyes. And her second or third treatment, this most recent one, they found that the retinopathy had had gone away. So I'm very thankful for that. So she just maintains the most positive attitude through shouldering this disease through the longest time, but I can see that it you know, it has taken its toll.   Stacey Simms  38:06 And so in your family, you know, you have two people diagnosed at different times, but still almost, it's hard to describe how different it is. We talked about Lantus And then off air, you and I were talking about control IQ,   Unknown Speaker  38:19 right? No,   Stacey Simms  38:20 just a guess of reflection before we go of the technology and the advances of not only I assume your sister has is using different tools than she did when she was first diagnosed.   Bonnie O'Neil  38:30 She is for sure. And I think that has been a great asset to her. So yeah, she's using now the Omni pod and the Dexcom as well. I am so grateful for the time in which we live and for the medical advancements that Austin has been able to take advantage of. I know one of the my friends through jdrf. She said recently, I am so thankful for all of you parents who came before our family did who paved the way because my daughter her daughter was diagnosed at age two or three. I've never known what you have known. She's had the Dexcom as long almost as long as she's had diabetes. I don't know the sleepless nights that you know, I'm confident now like that each generation or micro generation is going to be able to say that to the ones who came before them that we're going to continue to advance and are the lives of our loved ones are going to continue to get better. And that also just gives me a lot of hope.   Stacey Simms  39:36 That's great. Well, thank you so much for joining me, Bonnie. I really appreciate your time. Best of luck with the book. I'm really excited for you. There's nothing like a book launch. And I hope we could talk again soon.   Bonnie O'Neil  39:47 Thank you so much. This has been such a joy to be with you. Thanks,   Unknown Speaker  39:50 JC   Announcer  39:56 you're listening to Diabetes Connections with Stacey Simms.   Stacey Simms  40:01 Learn more about Bonnie and her book and her story at Diabetes connections.com. In the episode homepage, as always, I put lots of links and info there, you could read an episode transcript, if you prefer to. Some people just like to read rather than listen to that it's fine by me as long as you get the info. In conjunction with this episode, I have a contest on social media. This is on the Facebook page for Diabetes Connections, not in the group this week. This is just on the page. And you can win a copy of her book chronic hope. I also want to point out and I know we had a commercial in there, but I think it's really important especially for newer families to know that there are now options when it comes to using emergency glucagon because since the 60s, we've had the red box or the orange box, which were basically the same thing as you heard Bonnie talked about there mixing it up, and the big needle and all that stuff. There are new options. gfo hypopyon, is one that I spoke about, they are a sponsor of the show, they are a you know premixed ready to go shelf stable glucagon. And it's very easy. It's all in the panel ready, nothing to mix and you don't see that huge needle, it's very different. It looks more like an epi pen or an insulin pen and simple to use. There's also baxi me, which is a nasal spray. And that is also very easy to use, I will link up more information about that. I just think it is enormously important to know that these things exist, knock on wood, knock on my head, knock on anything I can find. We haven't ever had to use emergency gun with Benny in 14 years. But as Bonnie illustrated, you just never know. So it's so important to be prepared. I'm also really interested in the future of this stuff. Because I keep hearing more and more people say that we're gonna be using it not just for Super lows, right? I mean, like me, you were probably told if He's unconscious, you know, if you can't keep anything down, that's when you use it. But now there's a new school of thought about using these in much smaller doses for less severe lows. So I don't have a lot of information on that. So I'm not gonna talk too much more about that. But I think that is very interesting. And something to watch. And certainly glucagon in an insulin pump is something that, you know, companies are working on, most notably the iLet from beta bionics. So, as we say all the time, stay tuned. Tell me something good, a big honor for a wonderful member of our community. And that's about Minecraft to just ahead. But first Diabetes Connections is brought to you by Dexcom. And you know, when Benny was very little, and in the bathtub or in the pool, anytime his hands would get wet. I always noticed his fingertips. You know exactly what I mean. Right? We poked him so much. They were just full of these little pinprick holes. It looks horrible. I mean, you can really see it when he got wet at age 16. I am not inspecting his hands. I rarely see his hands anymore, but his endocrinologist does. And we went for a checkup in early January, his fingertips are normal. It's incredible. We've been using Dexcom for seven years now. And with every iteration, we've done fewer and fewer finger sticks G6 eliminates finger sticks for calibration and diabetes treatment decisions that we used to do 10 finger sticks in the past. It makes me so glad that Dexcom has helped us come so far. It is an incredible tool. 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 or more, go to Diabetes, Connections comm and click on the Dexcom logo.   Over the almost six years of this show, I have been so fortunate to have some guests that really made an impact on me, who I'm really lucky, I think to call friends now, but who I turned to again and again for information. I know I can rely on them. They'll give it to me straight and in a caring way. And one of those people is Dr. Stephen ponder. Many people know him because of his sugar surfing talks and books, but he's a practicing endocrinologist. He's right there in the thick of things in Texas when he can pray and hopefully post COVID runs a fabulous diabetes camp and has lived with type one himself for more than 50 years. He got a really great honor recently, and he says he was stunned to learn that he has been selected for a big honor at the University of Texas Medical branch in Galveston. This is where he went to medical school. And then he stayed there another nine years where he says he became a husband, father, pediatrician and pediatric endocrinologist and the award is the Asheville Smith Distinguished Alumni Award. He will receive that formally in June during the graduation ceremonies at Galveston and the to read his post about this was it was really inspiring he gave a lot of credit to others and he finished by saying never in my wildest dreams did I imagine an honor such as this so congratulations to Dr. Steven ponder for a great award well deserved that's just fantastic. Another Tell me something good comes from Samantha Merwin who is the mom of Logan the elbow bump kid we've talked to them on the show before she is working to roll out a national program about Minecraft. This is a Minecraft t Wendy play project. She says she had a successful pilot and She's working to roll it out nationally, working out a lot of logistics apparently to roll it out for people outside of her home state. So more to come on that. And she's also been working on a project with the college diabetes network along with Cigna. This is a really cool program all about mentorship applications are going to open in February, I will link up the page that is already there for college diabetes network. Basically, it's a program for junior and senior undergraduate students, you got to be current junior or senior, and it pairs you with a Cigna employee who has a similar career interest. So if you want to learn more again, I'll put a link in the show notes. But this was really great. Samantha love the work that you're doing here definitely going to help a lot of people and keep us posted on both of these programs. My son used to love Minecraft he still plays it but man when he was like 12 or 13 that was all they played. It was pretty wild stuff. I don't know what he's moved on to now. Although that's a lie. He his friends are playing Uno. They were screaming and carrying on get the card game Uno. I asked him I was like why are you so loud? Kind of Be quiet. I figured there's like shooting people or doing something crazy. They're playing card games on the computer? I don't know, is there any sign that you're getting older than you don't understand the games your kids are playing. If you have a Tell me something good story, please send it Stacey at Diabetes connections.com or posted in the Facebook group.   Little bit of housekeeping before I let you go, starting next week, I'm going to be doing something different. I'm going to be releasing an additional episode every week. So we'll have the regular interview on Tuesday, the long episode with segments like Tell me something good and innovations and all sorts of stuff. The regular episodes on Tuesdays will continue that way. I'm adding an episode on Thursday. And these are going to be what I'm calling classic episodes. If you're a sharp eared listener, you will know that I dropped in a couple of these last year kind of as a test. They are interviews from several years ago, as I mentioned, we've been doing the podcast for almost six years now. This is Episode 347. So there's probably a couple that you have missed along the way. And what I'm going to do is put context to the interview, you know, kind of catch up with the person let you know what they're doing now, and then replay the interview from several years ago, we have really great stories from a lot of really terrific people that you may have missed. And this way, if you're newer, and you haven't heard it, it's super easy enough to scroll back. I mean, Apple podcasts only shows you 300 episodes Anyway, you don't have to go anywhere. It'll be delivered right to you. And you can catch up with some of the really cool people and stories that I spoke to back in 2015 and 2016. So that starts on Thursday, February 4. Right now I am scheduled to do it for about half the year. We'll see how it goes. And you'll have to let me know what you think. Because after all, the show is here for you. If you don't like it, don't wait half the year. Let me know right away. If you do like it, of course I would love to hear about that as well. Next week, you'll be hearing from Lily I talked to the folks from Ypsomed a couple of weeks ago. Ypsomed and Lily are partnering to bring a new insulin pump to the United States. It's not a new insulin pump elsewhere in the world, but it could be here as early as 2022. We're going to talk about why Lilly decided to pivot and go in this direction. That is next week. And thank you 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  48:29 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

The new big-budget disaster movie Greenland comes out on streaming this week. It starts Gerard Butler as the central character, trying to save his family including his son who lives with type 1. Award winning screenwriter Chris Sparling had never put diabetes into one of his movies, but he knows all about T1D. His wife is Kerri Sparling, writer of the very popular, and now archived, blog SixUntilMe. Stacey & Chris talk about writing something personal into a movie and then handing over control to a different director and producer, as well as what it's like to try to make movies during COVID restrictions. Check out Stacey's book: The World's Worst Diabetes Mom! Kerri Sparling interviews Chris for Children with Diabetes  In innovations –JDRF begins at-home early T1D detection. More on the new JDRF T1Detect program  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 (rough transcript, computer only - check back for proofed version) 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 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 This week, there's a new movie all about a big global disaster and it features a main character with type one. award winning screenwriter Chris Sparling had never put diabetes into one of his movies. And he was a bit concerned about how it would all turn out.   Chris Sparling  0:41 I became so in a way overprotective of getting it right. And it being portrayed right because the last thing I wanted to do was to finally incorporate diabetes into a movie of mine and for it to end up being portrayed wrong.   Stacey Simms  0:55 Many of you already know Chris, sort of his wife Kerri Sparling wrote the very popular blog six until me for almost 15 years. We talk about diabetes in the movie and at home and about the entertainment business during this time of COVID in innovations JDRF begins at home early T1D detection. 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 here. I am your host Stacey Simms and we aim to educate and inspire about diabetes by sharing stories of connection. Something different This week, we're going to talk about Greenland. This is a movie it's releasing in the US on video on demand it stars Gerard Butler and Marina Bakkerin who you probably know from the Deadpool movies. I put the trailer in the Facebook group and Diabetes Connections of the group. But the basic plot is that these are estranged parents, maybe they'll get back together, but they are working on their marriage just as a world ending cosmic disaster happens. And wouldn't you know it, their son has type one diabetes, so diabetes, type one insulin, this all becomes a plot point. Now we've talked about this a lot before so many films and TV shows have gotten diabetes exactly wrong. But Greenland has a big advantage. And that is as you heard in that opening tease, and that screenwriter Chris Sparling, whose wife lives with type one, we will get 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 the arguing with insurance about 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 a 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 prescription 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. My guest this week is an award-winning screenwriter. He is someone that I've never met, but I feel like I kind of know because for many years I and many of you read about him in Kerry Sparling’s blog SixUntilMe. Kerri spent more than 14 years writing about her life with type 1 diabetes which included meeting and marrying Chris, who has been featured in blog posts about kids and family and everything you would expect. Kerri has stepped back from the blog to pursue other projects in her own writing. And Chris has a big movie coming out this week as this episode airs, Greenland, which debuts on American streaming this week. Chris, thank you so much for joining me. Welcome to the show.   Chris Sparling  3:53 Thank you. Thank you for having me.   Stacey Simms  3:55 It's great to have you. I feel it. As I said, I feel like I kind of know you. So I appreciate you kind of taking the leap and coming on not a movie or writing podcast, but a diabetes podcast. So this should be really fun. What made you decide I mean, you've been writing movies for an awfully long time. What made you decide to put diabetes?   Chris Sparling  4:14 You know, it's something I've been wanting to do for a while this movie presented a pretty unique opportunity for me to do it for a couple of reasons. One, the movie is the first of what's called Greenland. And it's about an incoming asteroid that's going to hit Earth or comet, it's going to hit Earth. It's this existential threat that everyone on earth faces. So kind of by nature of that alone, there's a ticking clock built into the movie, right? It's just when this thing's going to hit you're trying to get to the bunkers in Greenland. I tried to get there safely and survive. And so on the macro level there is that that large ticking clock at play, but the movie itself is different than say, deep impact or Armageddon in that it operates more on a personal level than those two movies do. You know it's not a movie checking in with what the government's doing to try to up the asteroid or anything like that, it's really more like the movie, the impossible if anyone listening ever saw that it's a great movie. And it's all to do with seeing it through this one particular family's lens, how they're going to survive this, this Cataclysm. So built into that I wanted to have a more personal, it's a more personal story. And I'd like the idea of having a more personal ticking clock as well. And so the son in the movie has type one. And now that's not to say the only reason why I gave him type one is to say, oh, that'd be a cool narrative device is to add yet another ticking clock. But it also quite honestly, it just, as I said, at the beginning of this long winded answer is that it gave me You know, I've been wanting to do it for a while, you know, Kerri and I have been together for a very long time. So I've seen type one up close and personal for a very long time. And, you know, I think it's kind of, it's somewhat misunderstood, if not even known condition by a lot of people. So it was, you know, I'm kind of hesitant to use the word educate, because I'm not really trying to do that, but maybe just shine a light on it a little bit. And, you know, this was a, an opportunity to do that on a, I guess, a large screen, or one of your house.   Stacey Simms  6:08 But I'm really curious, as you said, This isn't a movie where you're going to take time to actually do a formal education about type one, just as I wouldn't expect a formal education about a comment hitting the earth, and you know, what would happen, but you do have to explain these things. And I'm curious, you know, how do you work that in, you know, I assume we'll see things like injections or a pump or something like that. But was it difficult to kind of write it into the fabric of the story without, you know, Hey, everybody, we're gonna talk about diabetes.   Chris Sparling  6:34 Now, it was, to a certain extent, because, you know, as you will know, it's diabetes, you know, it's sometimes can fly a bit under the radar. You know, I recently, it was kind of bizarre to do it. But it's fun, I did it, I did an interview with Kerri. And so we were talking like you and I are talking now. And as I told her, then, and I don't always know when she's low, I don't always know when she's high, you know, things are beeping and everything else. And sometimes she takes on a certain characteristics, when that's going on. And I do know, or if I see you're sweeping a bunch of juice or whatever, but like, but sometimes I just don't know. And so to kind of to represent that on screen is difficult, because if you try to go too far in one direction, or the other, it may start to feel very false and forced, and almost cartoonish. And I say 100%, didn't want to do that. But if you go too subtle with it, which diabetes can sometimes be a rather subtle condition, you know, at times, and, you know, if you do that, then it just, it doesn't register for the audience at all. So to kind of dramatize that, what I did was I had the boy, the young boy in the in the movie, let's take one, I gave him a pump. And, you know, to kind of develop a shorthand with the audience, right out of the gate, there's a scene early on in the movie, where Gerard Butler who started in the movie, he's seeing that basically, he's been away, he, his wife had marital problems, and he's kind of they're trying to work it out, he and his wife now and he's coming back, he hasn't seen his son in a little while. And you see, there's a nice tender scene between him and his son, where he notices the pump, the insulin pump, and he says, you know, you know, basically, there's something to the effect of I do like that better than the shots. And you know, just kind of getting it across to the audience, someone who may not be as familiar with it as you are. Or I might be what's like, oh, okay, I get, you know, I can understand that you're certain things, I have a certain amount of knowledge about diabetes. So yeah, it's not, it's small things like that along the way, I've no doubt there will still be things that some people watching, it won't fully kind of hook on to, and they won't fully get. But at the same time, I think there might be elements of it that people watching might be like, Oh, I had no idea. I had no idea that having diabetes would require something like that. Or even to say, the immediacy and the importance of insulin, it kind of where I spoke earlier about this massive macro level existential threat that they're facing. But they still have to get to these bunkers in Greenland, if they're going to survive. And there becomes a situation where this boy get he needs his insulin, because he gets separated from it. And it's like, well, yeah, the large scale goal here remains, but if we don't get you there safely, and again, I mean, just maybe telling maybe to a certain degree, informing the audience who might not know that insulin is not just something like, again, you take it whenever you don't know, I don't know what some people might think, like, you just take it once in a while you take it as you feel like it or I don't know, whatever the misconception might be,   Stacey Simms  9:09 that we eat a cupcake, you need your insulin, right? (laughs)   Chris Sparling  9:12 Yeah, yeah. I think if nothing else, maybe it'll open, not open people's eyes. That's actually wrong, especially maybe just kind of illuminate the topic a bit for some people.   Stacey Simms  9:19 You know, again, I said at the beginning, I'll probably say a few times. I know very little about the industry, the movie industry and and what it takes to write a movie and produce and get, but I would imagine that and you've done projects before, where you've been involved in every step, right, you've written and then you've produced it, or you've been more involved. But with this, you you wrote it as my understanding, and what happens after you kind of hand off your baby because the director can change things, right. The actors have to change things. I guess I'll ask it both ways. First about the diabetes. Did they get it right the way you had hoped? And then we can talk about the movie?   Chris Sparling  9:53 Yeah, well, I mean, yeah, I mean, first, even before diabetes, yes, that always happens. I mean, I've directed movies, I produce movies, all of which have been ones that I've written. So, you know, in those instances, I have obviously quite a bit of control over what the final movies gonna look like in this instance, having just written it. In other movies I've only written, you know, there's always an understanding that when you hand it off, essentially, you know, your depends on the project, quite honestly. I mean, sometimes just as the screenwriter, I am still very much involved with the production because the director or the producer probably see the value of having the person conceived it but but with this, I was involved but not see, like, on a day to day level, that's for sure. Look for the diabetes of it all. You know, I was happy with it. And I was, there were a couple days when I was on set. And, you know, there was I just happened to be there. One of the days they're shooting a scene in in the grocery store and use the sons, they're shopping with his dad, and he's like, Hey, can I get some juice in the dad's like, yeah, sure, go get some. And I remember talking to the directors like Rick, listen, he's like, I was like, you know, my wife generally doesn't drink juice for fun. I'm not I mean, again, I know. She perfectly well, I should be no problem. She could if she wanted to just you know, but I was just I became so in a way over protective of getting it right. And it being portrayed, right, because the last thing I wanted to do was to finally incorporate diabetes into a move your mind and for it to end up being portrayed wrong. But in talking with Rick, he was like, No, no, it's cool. You know, I guess he was, meanwhile, he had his friend on speed dial who was the parent of a child of type one. He's like, No, no, I talked to them. I've consulted with them over and over again. And they said they get no, they let their child have juice if they want it and everything else I was like, and like, on an intellectual level, it made perfect sense to me. But I was I mean, I was kind of like waiting that we hold on a second rate bumps, you know, so to fully answer the question, I think the director, the producer was I think they did a really good job. I think people watching the movie and will it be 100%? Right? I don't know. I mean, people might see it and say, Hey, I don't know if I agree with that. Or not. But everyone's situation in their approach is different. But I could say if you kind of widen the aperture a bit and take a look at it, I think people are gonna I think it does it handles it accurately. For the most part.   Stacey Simms  12:02 I would have been like Gatorade zero, and then he can get a juice box for later.   Chris Sparling  12:08 Yeah, I mean, that's I'm saying like, everyone's situation is different. Right?   Stacey Simms  12:11 So let's talk about movies for a little bit. Was this your dream job? Was this something you always wanted to do?   Right back to Chris in just a moment. But first Diabetes Connections is brought to you by Dexcom. And you know, I've talked about this before, but it's still striking to me when Benny was a little, you know, you give your kid a bath almost every single day or he goes swimming all summer long. And I always noticed his fingertips, you know, they were poked so much, that they were full of these little holes up and they just looked really awful. Especially when they got wet. It was almost 16 I'm not looking at his hands very much anymore. But man, when we go to the endocrinologist and Dr. V looks at his fingertips, they are normal. We've been using the Dexcom for so long. Now it was seven years. And with every new iteration, we have 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 the 10 finger six a day we used to do chasing my toddler around, it 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 G six do not match your 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. Now back to Chris and he's talking about whether this is still his dream job. Does he still love working in the movies?   Chris Sparling  13:38 Yeah, 100% I mean, I started like eons ago, I started as an actor. And I lived in Los Angeles for several years doing that. And while I liked that, and sure, it would have been great to have ultimately done that it just wasn't really it's a really, really tough racket, trying to be doing the struggling actor thing. You know, it's fine when you're really young doing it. But at a certain point, you just feel like, wow, I have like no agency, I've almost no control over my future. You know, it's just really, really tough. So I just kind of felt I needed a little more control over my career. And so yeah, so to be involved in this industry in any capacity was was always my goal.   Stacey Simms  14:16 How does it work these days? I mean, people will say, well, you can write from anywhere. But I've got to imagine that the whole industry, if not moving slower, shut down. I mean, 2020 it's been a mess for everybody. But from a filmmaking standpoint, how did this even get done? When was I guess we'll talk about Greenland, but in general, like, how are things getting made right now?   Chris Sparling  14:36 I mean, yeah, Greenland was all written, shot well before the pandemic, but at the same time post production, it got shut down for a while in post production. So it didn't get completed, completed until in the midst of the pandemic, you know, and then as far as the release of it, yeah, I mean, it's supposed to be in theaters two or three different times, then take a push back and push back. But separate from that, you know, as 2020 is going on. I've actually had two other movies shoot during the pandemic, I just had one that wrapped two days ago in Albuquerque. And so for me personally, it's been a, you know, again, I mentioned earlier, but I can't complain people have like real, you know, things there, especially during 2020 people have had really awful things that they've kind of faced, I'm not certainly gonna, I'm not going to complain about having a movie pushback or not being able to visit set because of COVID. But yeah, I mean, it's been a bit of a bummer. That's, you know, I'm still human, like, it was a bit of a bummer to, to have two movies that, you know, I wrote and produced, and I was basically producing from, you know, one was an Ontario as a movie called Lakewood that I did with Naomi Watts. And then a movie that I just did born in Albuquerque that wrapped two days ago. And it's like, I was watching real feed, like real time feeds from the camera, in my house, in my home office. And my situation of you know, being very protective in particular carry, you know, having type one, and so we are, we're very, very locked down here and the COVID of it all. And so me going to set me being on set just wasn't really an option for me. So   Stacey Simms  15:58 that's interesting, though, I had no idea that you know, things, I guess a few we've seen TV shows, we've seen things being filmed a little bit here and there. But it didn't occur to me that full scale production or partial scale production, because you were in your house looking at things was going on. I don't even know what to ask, are they putting their masks on until they like jump in front of the camera? Is it locked down? Is it just a free for all? Because?   Chris Sparling  16:18 No, no, definitely not? No, it's it is I mean, I really wish, you know, for other industries that are still out there, and people are working, you know, maybe it's just not feasible, but the film industry to its credit, and television industry, they really have some great protocols in place. I mean, it's their zones that I like, I'm not going to get into like all the like, they were really, really strict measures. Because again, I mean, there are a lot of unions involved to this screen actors, guild writers, Guild, Directors Guild Producers Guild, so they're very protective of their membership for, you know, in the first place. And there's regular testing and everything else. And again, that's a luxury not I mean, not a lot of people have that. And then it depends on the size of the production. I mean, if you're talking about a big, let's say, Marvel movie, I mean, you could, in that instance, they're going to probably create a massive bubble, wherever and like they rent out an entire hotel, or like they do a Mission Impossible, where they literally rented out an entire cruise ship. And just everyone lived on the cruise ship off the coast of Norway while they were shooting there. So like, I mean, that that wasn't   Unknown Speaker  17:16 like that. But that makes sense. If you can afford Yeah, but   Chris Sparling  17:18 if you can afford it, yeah, I mean, it's budget plays a big role. But it's really, really difficult as it should be. Because it's there are people at risk. And yeah, the actors in particular, because, you know, when you're rolling the cameras, you can't have masks on anymore. So you have to be really, really strict and in how you go about your productions.   Stacey Simms  17:36 What do you think is going to happen with entertainment? In the next few years, I was having this conversation with a friend in terms of are we going to see COVID and people in masks and kind of that real life reflection in the next couple of years in sitcoms, where people are trying to reflect back to us what we've been through this year? Or do you think we just need a couple of years away from it? Before we can start seeing?   Chris Sparling  17:57 It's interesting, I've had that exact conversation with a lot of people, where is it going to be in stories? Is it going to be that you pretend COVID just never happened? Or do you incorporate it, even if it's not just like a major part of your story, it's just an element of life that everyone is familiar with it. So it's not if you just mentioned all they get someone gets sick during COVID, a couple years ago, you just off handed say it and there's no explanation because everyone in the world is going to know what that is. So it's either, you know, in I'm of the mind where, when we're out of this, I want to be out like I don't I don't want to look back on this and try to make it I certainly don't want to make it part of other people or right now. It's you see people trying to make pandemic movies and everything else. And I'm like, I want no part of that. I want no part of that at all. And that's fine. I'm not judging them for maybe wanting to I'm just saying for myself. Yeah, I'm hopefully looking to the future here and want to get past this and move on.   Stacey Simms  18:51 I'm with you. I think we'll know for sure if like a rom com next Christmas makes money and they're able to do like a meet cute with COVID. emasculate that takes off, then we'll know but I don't think it's going to.   Chris Sparling  19:03 Yeah, and I know like I my wife watches this is awesome. You know, I I saw a couple times where they're wearing masks on the show sort of there now, and that's fine. I mean, I'm not judging it. I'm just saying for myself,   Stacey Simms  19:15 I would but I'm with you. I want to be entertained right now. I'm not maybe as we get past it, we can reflect for but I could be meant, you know, it'll be interesting to see because there are different opinions about it for sure. Looking back to Greenland, I wanted to ask you, why did you give diabetes to the kid in the movie, and not the wife character? Was there? Was there a thought process there?   Chris Sparling  19:38 It's tough to say I mean, don't really recall. I mean, probably wrote this movie by now maybe four years ago, years ago. I don't know. If I decided at this moment. I'm going to make a movie and give a character in a family that type of diabetes would I make? I don't know. I mean, maybe, maybe again, just kind of speaking to this. Again, I'm hesitancy an opportunity to make some seemed like I was on a crusade and it wasn't I'm not on it at all. But like, I think there are a lot of people I'm gonna be frank, I don't think a lot of people know that kids can get diabetes. I just don't think that they, I think a lot of people, I think when they just hear the term diabetes, I think they mean type, they just assume it means type two, they don't even think that there is a type one or type two, they just think there was diabetes, and to maybe see a child, the 78 year old child with diabetes, maybe that kind of will at least, I don't know, in a waste stop some, someone long enough to say, Well, wait a minute, I never knew that. Little kids can have diabetes. For example,   Stacey Simms  20:35 I mentioned in the intro this interview that, you know, I kind of knew of you knew you a little bit from Kerry's blog, my son said he was 14 years ago. So she'd been writing the blog for a while when he was diagnosed and was one of the first things I found and like many people, because very, very popular blog, you know, I read everything she wrote, I feel like I knew so much about Kerri. And it was a huge help to me, even though I have a son. And it was something my spouse who has type one, what was that like for you? Was that like a different world kind of like, okay, Kerry's writing her blog, but you were mentioned it we knew about your family we do about things that are going on? I'm curious what your perspective on six and told me is,   Chris Sparling  21:11 I mean, I've always tried to be as supportive as I could with everything that she's doing in the community and elsewhere and on the blog. Yeah, that was no different. I think it speaks more to just how the internet itself has changed. Overall, we're, I mean, she started blogging when people didn't even, like, I want to say she was one of maybe two or three bloggers who were blogging about diabetes at the time. And this was, you know, that's at a time when the internet, like blogs were pretty new, and people weren't generally sharing, they weren't comfortable sharing personal information online, so much. And nowadays, that's all the internet is. And so like, so it's kind of a different space. And it was, it was a much more. You know, it wasn't it wasn't the juggernaut it is now I don't mean her blog, I mean, just like any kind of blog, or social media account, or anything else like that. So her writing personal details about, say, our relationship, and then our, you know, our marriage, and then our then our daughter at first, it just seemed we were okay with it for a while. And then just again, speaking for us, this is no comment on anyone else who might be doing this now, currently, but it's just for us, we just kind of decided that, you know, just wanted to be a little more closed off with the personal stuff in that way. So that's why if you go back, I'm sure in her blog, maybe when you started. I mean, there was a I remember a lot of stuff we she would talk about the stuff she and I were doing is kind of like a young couple going into New York City and hanging out. And, you know, so because it was kind of it was just kind of fun, and had almost like, you know, almost had like an early Facebook field where you just felt like, Hey, I'm writing this to my friends and family. Right? You know, as opposed to, you know, you write this stuff, and then all of a sudden, it's just, it's fodder for anyone to comment on or anything, I don't know. And it just became, I don't know, if it's a conscious decision or not, it just became more of like a Yeah, just to kind of pull back a little bit in that way on her on her blog and stuff.   Stacey Simms  22:57 Yeah, for me, it was almost like a teachable thing in terms of not just diabetes and learning about what an adult perspective was, but really did help me a lot gain perspective. And even when my son was two, it was also a really good kind of template almost in terms of sharing, because it did educate a lot of us along the way. Because that was before Facebook and social media. Really, I know, you're probably not gonna think about Facebook in college, and that was it. But I mean, for you know, in 2006 when I think she started as a five there was no social media really so right. It was a really good lesson in protecting your privacy, especially as it went on. But you know, it's it's a different world. People can't share enough some people. So isn't Greenland has been released, I believe in Europe and some other parts of the world because that's, I've seen it in some of the parenting Facebook groups. People have been chit chatting over it. Yeah. I asked if anybody had any questions for you. And most people just said, I loved it. But it scared me or like, Oh, my gosh, I didn't want to think about those kinds of things. But I did get a great comment from Sarah, who said, Stacy, can you tell Chris how much my nine year old son and I appreciate it? how accurate it was? Yeah, she has a question for you. She wants to know how difficult it was for you emotionally, to write something like this with so much personal experience from this disease that you've said it's been about four years, or maybe more since you actually wrote the script. But seeing as this really is something scary in terms of end of the world, and like a lot of parents I have like, Oh my gosh, if he's stranded or you know, it's even just like, it could be forgetting his diabetes back at the movies. It doesn't have to be a comet hitting the earth or plane crashes. Terrible. Yeah, we're all scared. Did you get emotional kind of writing this and thinking about carry? Yeah,   Chris Sparling  24:38 I mean, it's emotional. Now even watching again. For that reason. I think it's it. There's another and this is kind of what I was driving at with incorporating diabetes, where again, I didn't want it to seem like just some plot device. Like you said, it doesn't have to be a comet hitting the earth. It doesn't have to be a pandemic that we're all dealing with. But those things there's no Another whole layer for people living with diabetes or any chronic condition for that matter, any medical condition for that matter, it's it there is an another ongoing in a way unrelenting element to your life into the life of the people who care about you. You know, and that's, I think what I wanted to really portray is that it's like, again, even though these people are selected, and that's, you know, not giving away much they are among the very, very few people selected to go to these bunkers in Greenland. You know, someone made the joke recently, it's like, you know, Gerard Butler has saved the president so many times, it's only it's only fair that he's selected. But anyway, so they were and it's like, okay, that's, that's great. But like, that doesn't nothing changes it for at least as of current standards of medicine, nothing changes, the fact that this kid still needs his insulin, and it was emotional in that way. Because we've been there, you know, we've been in those instances, and I'm sure so many people listening have where sometimes stuff can get scary. You know, I talked about the subtlety of it before. And sometimes things can go from subtle or zero to 60 pretty fast. And that by itself, those moments are emotional when they're happening. And so to kind of to try to incorporate them into even something fake. I mean, you try your best to just make it feel real and realistic and kind of pour yourself into it as much as you can. So yeah, it's, it was a you know, so yes, sir.   Stacey Simms  26:19 I promise I will not get too nosy. And ask you lots of personal questions about Kerri. But I am curious, I don't talk to a lot of partners, spouses of partners and spouses of people with type 1 diabetes. And that's a different experience than being a parent or being a person with type one. I'm not gonna ask you to make a grand statement, you know, what have you learned? or What advice do you have? But I am curious, when you met Kerri. And this is a long time ago, as you said, I'm, I don't know if you can remember. What did you think about diabetes at the time? Were you really worried about dating and then getting very serious with someone who had something like this? Do you remember?   Chris Sparling  26:55 Yeah, I do. I had a very limited, very limited exposure to type one, only because a good buddy of mine, he had been for a little while dating a girl with type one, prior to me meeting Kerri. And the standout thing was that she was low one time, and she threw a pumpkin at him. So like, that was my introduction to type 1 diabetes, that sometimes when you're low, like you can kind of like your behavior can be you know, not like, I don't know, something you come out of here, we'd like you to depending and, and she just happened to get like, very aggressive for some reason that that is, and I was like, Wow, so that was a completely rough and probably ill informed introduction to diabetes. And then I met Kerri. And, you know, thankfully, she never threw a pumpkin at me. But But yeah, I mean, it's so I learned it a lot from just being with her and being around her and see how she manages the disease. But I mean, this, the thing is that I met her God, I mean, she must have had it for about 18 years, 15 years, some anywhere from 15 to 1819, whatever it was, before I met her, so she was very accustomed, you know, to dealing with this as an adult, because naturally got as a child, and then I should say, naturally, she got it as a child. So naturally, her mom and her dad, were helping her as a child, but then she, I met her as an adult. So she has several years of managing this disease on her own. And so it was kind of like I had to, you know, again, this is just specific to my relationship with Gary, I'm not trying to map this onto how other people do their thing. But like, I learned the boundaries in a way of like, what is the best way for me to be helpful in these situations. And even something simple, like I learned very early into this day, know that if carry is low, you have an instinct, when someone's not feeling well, for any reason. You're like, Oh, just sit down, sit out, you know, if you're feeling if you're feeling dizzy, whatever, she's the opposite. And then this is just her. She's the opposite. She doesn't want to she doesn't want to sit down. Because sitting down in a way, mentally allows it to settle in more for her. She, you know, she can't fully explain what she's saying. She's, like, I can't resist it, if I'm accepting it. And that, you know, again, it's not some woowoo thing. It just for her. That's it. So, like little things like that. Over the years, I've kind of and then bigger things over the years that I've come to say, all right, well, this is my role in this, I guess.   Stacey Simms  29:07 Getting back to screenwriting for just a moment. You know, there's a lot of I think a lot of people think that any job in the movies is super glamorous. And it's not as difficult as it is screenwriting has to be so difficult to me to think about. Because you're you're pretty much by yourself writing. But I'm curious. Do you have any advice? I mean, for anybody listening who would love to do what you were doing?   Chris Sparling  29:29 Yeah. Um, read screenplays. It's the best education you could possibly get. I mean, there are entire screenwriting programs. You could go spend a couple $100,000 on right now. And I'm not taking away the value of that but at the same time, I would put it right up there with just reading the screenplay a week.   Stacey Simms  29:46 How do you get a screenplay? Pardon my ignorance?   Chris Sparling  29:48 No, it's fine. I mean, just go online. Just Just go to Google and type movie screenplays and I'm sure like the vast majority of movies you've seen in like are you can read screenplays for   Stacey Simms  29:58 Is it still fun for you?   Chris Sparling  30:01 Yes, I this, I've been doing this for, like professionally for over 10 years now it's been my, my job. You know, just like anything else, things start to get a little old. I think for the next 10 years, I think I look forward more to writing and directing more as opposed to just writing. You know, I've directed a couple movies so far, but I want to do more of that I think in the next 10 years will say, yeah, I mean, I still love it. I love what I do. I feel very fortunate that I, you know, I tried for a very long time to break into this industry. And so like, I never lose sight of that. Yeah, I mean, there's certainly days that you just, it's just not happening. You're just trying and you're like, wow, I'm really awful at this. And so no, and, and other days, you're kind of like, Yeah, maybe. I think it's interesting, during, in the COVID of it all, like I've been, I remember, especially, you know, early early on in it, where everyone was on lockdown, and everyone's like, Oh, you must be getting so much done, you must be in so much writing done having all this time. And I was like, I can nothing done. I'm like, I can't get my head in the game at all. And that went on for a while, like creatively, I just couldn't get there. I guess, understandably, given the circumstance. But over time I was. It's gotten easier. I think more than anything. Now. It's just a time thing i'm sure Kerri would agree with this is that because of how we're doing things with, you know, with with us and our kids being you know, home from school, and that's just how we're doing it. It's just, there's a lot of us being here and having to having to kind of shuffle responsibilities back and forth. And so, you know, the amount of time I actually have, and that she has to take it worked on is that's pretty valuable commodity these days.   Stacey Simms  31:36 Yeah, no doubt. So before I let you go, is there anything that you can share with us that you're working on now, in terms of writing or things that haven't started yet?   Unknown Speaker  31:45 Yeah.   Chris Sparling  31:49 You can tell I, you know, I have a long gestating project. Basically, it's an adaptation of Stephen King's the talisman. I don't know if that one's ever going to happen, quite honestly. It's just I mean, it's something that it's it's Steven, not the name drop, but it's a Steven Spielberg project that he has been trying to do for like 35 years, there have been like, I don't know how many iterations of it that just just kind of come together, then he changes his mind or it doesn't happen. And then he moves on and then tries again, and like 510 years later, so who knows if that this one will follow that same trajectory. But that's one that I've been working on for a while, and then and a couple other projects. And then I'm just I just started a new script of my own. So in other words, not like a writing a script or adapting a script for somebody else. Right. You know, it's one that I'm hoping is going to be my next directing project. So,   Stacey Simms  32:34 so yeah. Okay, so we will look for greenlit, I will put all the information in the show notes where people can find it. Anything that we should look for that might be like a diabetes community, in thing I mean, now I have to look for the juice in the grocery store.   Chris Sparling  32:47 Yeah, there's that scene. I mean, there's the pump scene. You know, there's the scene where, um, there's a lot of them. It's not like it doesn't it's not like some small facet of the movie. I mean, it's so   Stacey Simms  32:56 cool. The mom isn't trying to read six until me like the panel there's no like   Chris Sparling  33:01 easter egg thrown in. Right? Um, you know, it's interesting though, because the the LED with this there's Kari asked me this question when choosing interpretive me which again, which is kind of bizarre. She was like, Why? Why does she's even curious. In the movie, the boys wearing an old like Medtronic pump in? She's like, why that old pump? Why not like a more modern pump even more modern Medtronic, but I don't know, I mean, quite honestly, I mean, it's probably the props department that chose that one. And the director approved it. And then they're also clearance issues where you can't just use a product, right? You'd have to get approval from the company. And so I could find out, I'm sure, but still, what I do wonder, and I might have done the same thing had I directed movie is that old model is older model PUMPS LOOK more medical, they look like medical devices where a lot of the more you know, more modern pumps will say they look sleek, they look like cell phones, they look like you know, and so I think for an audience, if the if part of the effort here is to kind of maybe shine a light on this on this condition, this disease, you certainly don't want them to be confused, where they see something like well, what is that? I don't know, it's a phone or what is that? That and, and I think, you know, that's, I don't know what that is. I don't know if that's a fun fact, I don't know how you classify.   Stacey Simms  34:15 Now, that's exactly what I meant that sorry. When because when we look at the screen now we're all gonna be thinking like, wait a minute, because I know my audience, they're gonna pause it, they're gonna look at it, they're gonna zoom in if they can, and you know what pump is that? And that's, that's a really good reason why?   Chris Sparling  34:30 I don't think it's a fun fact, because I don't know if that's the right way. Right? It's like a fun speculation. There you go.   Stacey Simms  34:37 You know, we're bonkers that way we'd like to know. So we'll see what happens. Chris, thank you so much for joining me and you know, for for speculating and for sharing so much of your time. I really appreciate it. Oh, thank you.   Unknown Speaker  34:54 You're listening to Diabetes Connections with Stacey Simms.   Stacey Simms  35:00 For more information about the movie, the trailer where you can watch it, all of that at the episode homepage at Diabetes connections.com, wherever you are listening, if you're listening on a podcast app, you can always come back to the homepage and find out all of the info. Not every app has a great way to see the show notes. You know, we're on Pandora and Spotify and apple and everyone's just slightly different. So I like to keep it at home base. We also have transcriptions for every episode this year. And we're starting to go back and add them for every episode. So I'm very excited about that. I will also link up the carry and Chris interview that he mentioned, because Kerri scooped me she got the interview first. It was really fun. I interviewed my husband before for this show, and it's a little bit of a weird feeling. But it was a lot of fun to watch them and I recommend that especially if you're a big fan like I am of six until me and of Kerri. Up next we're going to talk about this new at home test kit from jdrf. First Diabetes Connections is brought to you by Jeevan hypo pin, 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 evoko pen comes in. It's the first auto injector to treat very low blood sugar gvl caple 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 g vo correctly. I'm so glad to have something new, find out more go to Diabetes connections.com and click on the G Volk logo g book shouldn't be used in patients with pheochromocytoma or insulinoma. Visit chivo glucagon.com slash risk.   In innovations this week, where we talk about the latest and greatest in the technology sectors and new stuff in our community, I want to tell you about jdrf new T one detect this just came out last week as you're listening to this episode, if you're listening to it when it first airs, and T one detect is jdrf snoo screening education and awareness program. So basically, it's screening you for type 1 diabetes auto antibodies, I'm going to read a little bit from the jdrf website. They say until now t Wendy symptoms and a diagnosis often come out of the blue. Today, families can use testing to detect t Wendy early so they can plan and prepare with one blood test anyone at any age can find out before symptoms even occur. If they are at risk for developing to end, the test is easy, simple and can help save lives. So this sounds great. This sounds a lot like trial net, who we've talked to before, my understanding is that it's different. It's not quite the extensive test. And by that I mean, it looks like a different test, it's a finger prick, and you send the blood samples back to the lab. And then you get your results back. And they say you get next steps as to what they mean and what to do. So I'm hoping that that also means counseling of I haven't seen anything about that yet. Because, you know, that's the only that's one thing about doing these tests, any health tests by mail, right, you want to get the results. And then you want to have somebody sitting next to you telling you what you do with those results. So you're not feeling alone. You know what, if you have these antibodies, you don't know what they mean, you know what I mean? When you click through the website, it actually takes you to enable bio sciences, T one D auto antibody testing, and that's from whom you actually order the kit, you make an account with the company, you can check through your options on privacy, you can decide if you want to make your results available to jdrf. You can say Do I want bio sciences to have my personal health information, there's a lot you can do here. The tests are not free is my understanding. But I didn't see anything about cost anywhere on the website. However, I didn't get far enough through it to actually order the tests. And what's interesting here is that T one detect will be available to people whether or not they have a family member who has type one diabetes, and that's different from most of the other screenings, including trial net. So a lot of questions here. I have reached out to jdrf they have said that they're you know more than willing to come on. So now it's just a question of scheduling. So I'll be putting in the Facebook group Diabetes Connections of the group when we are ready to go with that, and I will certainly solicit your questions and we will get them answered. My biggest question is, why make this separate? jdrf I believe already helps fund trialnet. So why now fund something different when trauma needs money? So I'm going to find out I'm sure we'll learn much more. I am definitely in favor of more research and more testing because boy, if we could test everybody for type one, we could learn so much more about possible prevention and treatment and all that good stuff. So don't misunderstand my questions here for doubter cynicism. I'm just really curious about this new program and of course, we will find out more programming note for the rest of the year. I'll be honest, I'm not really sure we have about two weeks left to go for 2020 and I do have the shows planned out. We're going to do wait wait, don't poke me the Game Show that I aired at friends for life. If you didn't go to that winter conference, you'll be able to hear the show and you'll actually be able to watch it, I'll put it on YouTube the same time the podcast goes live. That's always a lot of fun. And then I have another panel that we taped earlier this year about the type one and type two community with some familiar faces to many of you. And that will be the last episode of 2020. However, as I've said before, there's always some interesting stuff at the end of the year. And if we're able to jump in with some more breaking news, or something really interesting, comes up, you know, it's not like I'm traveling This year, we're all sitting around on zoom. So we will bring you you know, any breaking news that happens in our community, and I basically just reserve the right to throw a new show in here or there. But we are almost done. Holy cow this year, and not much for reflection. I'm not quite sure that I'll do a lot on 2020 I think I need to get a little further away from it and further toward Good Stuff and Being with you all the view more in person before I can really properly reflect but I gotta tell you, I am glad to see 2021 on the horizon. thank you as always to my editor jump you can. It'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.   Benny  41:18 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All rounds avenged   Transcribed by https://otter.ai

 Meet Leo Brown from this season of The Amazing Race! He lives with diabetes, but his story isn’t a typical one. Leo was born with congenital hyperinsulinism, where the body makes too much insulin, and had almost his entire pancreas removed. Leo will share his unique story and tell us about running the race with his girlfriend, Alana. Learn more about congenital hyperinsulinism In Tell Me Something Good, babies! Weddings! And a football first for someone who’s been kicking t1d every day for a long time. 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  0:23 This is Diabetes Connections with Stacey Simms.   Stacey Simms  0:28 This week, meet Leo Brown, a contestant on this season of The Amazing Race who lives with diabetes. Now on the show, he's racing around the world with his girlfriend, Alana, but they had what could have been their biggest setback before the race even got started.   Leo Brown  0:42 I think I was actually on the flight to LA at the start line. When I realized I had left all my insulin at home. There was one thing I didn't remember it was in the fridge. It was lined up like little soldiers.   Stacey Simms  0:57 Oh my gosh. Well, Leo's story is not a typical diabetes one. He was born with congenital hyperinsulinism, where the body makes too much insulin and had almost his entire pancreas removed. He developed diabetes at age 19. And he'll share his unique story and tell us about the race In tell me something good babies, weddings, and a football first for someone who's been kicking T one D every day for a long time. 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 love The Amazing Race. I started watching when I was pregnant with my daughter Lea. And that was 19 years ago, I realized that talking to Leo and doing this episode Oh my gosh. Anyway, welcome. We aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed almost 14 years ago, when he was a toddler. I have a background in broadcasting and that is how you get the podcast. It has been two years since the last version of The Amazing Race aired and I really have been excited to see it come back. It's just great to see people traveling again. As soon as the first episode of the season aired in mid October, my eagle eyed diabetes friends started posting photos of Leo at one point he's playing the steel drums and you can clearly see the Dexcom on his stomach. I like many of you jumped to the conclusion that he lives with type one. But it turns out his diabetes story as I've already teased a bit is very unique. And we'll talk about that with him 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'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 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. My guest this week is Leo Brown from Season 32 of The Amazing Race. His partner on the race is Alana Folsom, they have been dating for less than a year when the show started. And they're now married. So we don't know how they did on the show. But that's a great outcome already. Leo and I recorded this interview over zoom and there is a video version which I've put on the YouTube channel. And that's just Diabetes Connections over on YouTube. But there's two things you need to know as you listen, the audio is a bit sketchy here and there, Leo and Alana upgraded their Wi Fi during the interview. Literally during the interview, she called and got the Wi Fi upgraded we stopped and started a bit before that happened. I took all of that stuff out. But you can hear some stuff here and there. And if you see the video, you will see the shirt that I am referring to as we start out here. But if you're only going to listen, I promise you will get the gist. Leo, thank you so much for being here. I appreciate you spending some time with me tonight.   Leo Brown  4:23 Thanks for having me excited to have a chat.   Stacey Simms  4:26 All right. Well, first of all, I have to ask you about your shirt. Because I saw that hashtag on Twitter that you guys were using. What is beloved lovers? I wanted   Unknown Speaker  4:35 to hear you say it first.   Stacey Simms  4:37 Wait, let me do my radio voice! Tell me about – beloved lovers.   Leo Brown  4:41 Oh, absolutely. So Alana I got married over a month ago. And we have a Ketubah which is a Jewish wedding contract. And in a traditional Ketubah it says you know the man this and that husband this wife that right and We wanted our Ketubah to be egalitarian. And we didn't really see a need to indicate our gender. But that's not really what what relationship is about. And so we talked to our Rabbi who's extremely, you know, open minded and accommodating. And he came up with some text that is egalitarian. And the translation from Hebrew to English was beloved lover, and really like that. And so in the in the wedding, which we live streamed, because we couldn't invite most of the people we wanted to, because the COVID, he explained that and there was a live chat on the YouTube live stream that was happening, everyone was like, beloved lover, and then they started writing hashtag beloved lovers. And then I think somehow that got picked up by some news source that like follows Amazing Race, or it was like doing some promo about Amazing Race. And so when they were introducing the teams, and it was just this little this article that got that was going around, they said, Will and James dating Hung, and Chee married Leo and Alana lovers. And so our cast has all had already kind of decided since our wedding because they had all called into the wedding that we were having, like beloved lovers. And so we went with that. And this is our beloved lovers shirt on the back and says Leon & Alana, and a little globe, that is where beloved lovers came from our relationship and our wedding.   Stacey Simms  6:25 So okay, my husband and I have been married for 21 years. I'm making a note for our when we renew our vows for our tuba, maybe at 25. Oh, yeah, back and change the language   Leo Brown  6:35 as a couple that had to severely downsize our wedding. We are strong believers in renewing vows, or just having another wedding whenever you feel. Stacey Simms Well, you know, weird way you kind of put the honeymoon first with The Amazing Race. So let's talk about that. Because you both were I mean, I didn't know if I could ask you about your relationship, just because you're never sure on the show. I've seen I've watched the show for years and people are dating that they break up before the race even ends. Or maybe they stay together. Well, obviously, this had a really happy ending. But take us back to the beginning. When did you all decide to sign up for the race? You were just dating? Leo Brown Yep. So we met on Tinder in January of the year of the race. And then on our second date, I think we were watching The Amazing Race with my roommates at the time because they were fans and a lot. I was a fan and I hadn't seen an episode or two. And that was the first time when it was my roommates who said you better be great on the race. And I thought yeah, sure, I think we could be and, you know, nothing else really came of it. And then six months later, Ilana and I moved in together, I think it was our second night of living together when we had it. All right, let's make this video. Let's send it in. Let's see what happens. And that was in July. And then a couple weeks later, we got a call from casting. And then over the course of the summer and fall that we went to LA a couple times. And then the start line was our 10 month anniversary. So that was a that was a really fast and an incredible progression that we weren't expecting,   Stacey Simms  8:11 we will return to the Amazing Race to your relationship to your reading lots of questions there. But tell me about your experience with diabetes. Very unique. What happened? Tell us your story. Sure. So I   Leo Brown  8:23 can start long before I knew I had diabetes. Because I wasn't diagnosed with diabetes till I was 19. As an infant, though, I was diagnosed with congenital hyperinsulinism, which I always explain as kind of like the opposite of diabetes, instead of making not enough insulin, I made way too much. So it's a rare genetic condition that you're born with and usually presents at birth. And it's an emergency, once you're born, you have low low low blood sugars. And one of the biggest challenges is that doctors who delivered you and you know, like neonatal care doctors might not have ever heard of congenital hyperinsulinism. And to make matters worse, infants sometimes have low blood sugars, as like a natural and okay thing. And so many parents, including my own then are told initially some version of Oh, that's nothing really to worry about. And the story you hear time and time again from these congenital hyperinsulinism parents is I knew something was off like I'm not a medical professional, but my child needs help. And in my case, will that eventually led was to subtotal pancreatectomy ease. And so the first one was when I was six weeks old, and that was like 95% of my pancreas was removed a big scar across my stomach from that. And then when I was six months old, much of remained was also removed in a second subtotal pancreatectomy and after that, by the time I could remember, basically, I have like very early memories of my blood sugar being tested because my blood sugar was of interest at that point, everyone needed to know what it was and why it was okay. And for the first couple years, my parents had to do a lot to help manage that. And lots of doctors involved and try different drugs and eventually figured out something that could sort of stabilize my blood sugar and help me start to live a normal life. And by the time I could remember, I pretty much did live a normal life. You know, I went to kindergarten like any kid, I had a scar, I had a second scar from a feeding tube that was called my second belly button, because I have an outie. But then there was this any nearby. And as life went on, I felt very much like a normal kid who had this, you know, this complicated beginning, but I thought that was all kind of behind me.   Stacey Simms  10:56 But let me ask you before you go on, and I'm sure your parents have shared with you what actually happens when when a child is born with low blood sugar? Like you said, it's not as though something they're not often looking for that kind of thing. And it's extremely dangerous. Do they just are they poking your fingers when you're an infant? Or the you know what happened? Yeah,   Leo Brown  11:15 my parents may remember, even better memories than I do. But I know that you test a baby's blood sugar at, you know, most hospitals, good hospitals when they're born. So I mean, I think that tests This was 30 years ago. So longer, or like longer land sets, but generally a lot has remained the same in in that you test a baby's blood sugar. And if it's low, if you're lucky, someone says, Yeah, could be serious. It could be totally fine. But I think they had a lot of experience testing their tiny baby's blood sugar.   Stacey Simms  11:54 Did you go I guess my question is, did you go home? And then have these emergencies where you had to be re, you know, brought back your parents didn't know what's going on? Or did they know before they even left the hospital?   Right back to Leo, answering that question and explaining more about congenital hyperinsulinism. 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 a wonderful thing about share and follow as a caregiver or parent, spouse, whatever, 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 app required, Learn more at Diabetes connections.com and click on the Dexcom logo. Now back to Leo, who by the way, has a great Dexcom story later on in the interview. Oh my goodness. But here, we are talking about his parent’s early days of his very scary diagnosis.   Leo Brown  13:04 I believe my parents didn't have a clear diagnosis before I was discharged at the very beginning. And then within weeks, if not days, I was brought back, you know, they said he's having, you know, he had a seizure. He's not getting better, like this low blood sugar thing is, is here to say and I I'm again, my parents would have a lot more to say. But at some point, they were equipped with a blood sugar testing kit to you know, check me regularly at home. But I think that within those first couple of days and weeks, they quickly discerned that something was off. My parents used to have this box and at some point I said I need the box because once in a while I need to be able to explain to people not in an interview, but in a doctor's office what exactly happened. But yeah, it you know, it from what I know congenital hyperinsulinism and other stories I've heard from other parents, honestly, that I can tell you as much about that as my own early early story. The prevailing pattern is that the parents are told that the low blood sugar is not something they need to really worry about, because babies have that sometimes. And right, a large part of what the community and an organization I'm working with congenital hyperinsulinism International is trying to help medical community understand is you need a checklist saying this could be congenital hyperinsulinism. Obviously research for early diagnosis, treatment, but early diagnosis is in some ways more important because if people aren't looking for it, then it is a you know, it's a very rapid escalation. As you can imagine. It's just like if you were getting injections of insulin that you didn't ask for.   Stacey Simms  14:54 Yeah, scary stuff. Yeah. So you have these operations. You're growing up just fine. But you have been told your family's been told that you will eventually most likely develop type one diabetes or something that's very similar.   Leo Brown  15:06 Actually, that didn't become what people were told until more recently, this, I think, has to do with better research and sort of documentation about the progression of the disease also, as early treatments have become more effective, and there's still a long way to go there. I'm you know, most people don't get to go to kindergarten like I did without some sort of special needs. Or even just like having a continuous glucose monitor, right? You might not be I mentioned special needs, because like, as soon as your blood sugars are low, you could have that could affect your brain in some way. But also, even if you don't have that consequence of the low blood sugars, you might still have a lot of trouble controlling your blood sugar's early in life or throughout your life. And so the fact that I didn't have any of that, from nursery school, kindergarten and on through the beginning of college is sort of unusual. But to your question, my parents were not told that I would get diabetes, part of the reason, I think is because my pancreas was making so much insulin, there was a thought that removing just the right amount would lead to me being just fine. Or, you know, you might not remove enough like, I might still have low blood sugars, like there was no assumption that I would have diabetes, although my understanding is more recently, that's become more of a an assumption that like you do this type of operation. And then no one knows when, but eventually you will have diabetes,   Stacey Simms  16:38 or and now I have one more dumb question or the surgery for we move on. I know, everybody wants to know about you, and the Dexcom and The Amazing Race, right. But I'm so curious, we think about the pancreas, and I think most people in the diabetes community understands that it's not dead, you know, it didn't stop doing everything it's supposed to do. But we don't think about it as doing anything much more than producing insulin, you have like this much of a pancreas left, and you have been living this happy, healthy life, even though we're gonna talk about your diagnosis. Are people generally surprised when they hear that it's, it's more of an education for you to do? Because I gotta tell you, when you told me that, I thought that's not at all what I felt what happened?   Leo Brown  17:13 Yeah, I wish I could read the logs of my pancreas to tell you exactly what it's doing and what it's failing to do, like if you were trying to debug it. And, you know, there's not an easy way of getting in there. And and finding that information. I mean, you really would have to, you know, I engage any doctors I encounter and try to get those kinds of answers out of them. Like, what is it that my pancreas is not doing? Like, I know, it produces all sorts of hormones, other than insulin, I don't have the background to even ask the right questions, right. But all I can say is that with a little bit of pancreas, you can get a little bit of function. And I guess enough such that I don't I'm not diagnosed with anything other than diabetes. But it is a great question. And there's not a ton of patients to do this research on. Nor is it something that you'd want to interfere with someone's life to do research on, like, you were to poke around in there, like you could cause a problem. So on some level, you kind of just keep an eye on it. But one thing I do quickly want to add is that my parents and I, after I was diagnosed with diabetes, we were really kind of kicking ourselves like, doesn't it make sense? You took my pancreas out? Why didn't anyone mentioned that? This could just it seems like common sense. I mean, not I'd never thought about diabetes before. But my parents had certainly thought a lot about blood sugar. And they were like, course, like diabetes?   Stacey Simms  18:43 Nah, I gotta say, in everybody's defense, I think I would just be very happy that my baby who was going super low, all of a sudden, they figured out was wrong. They fixed it. You went to kindergarten, if the doctors aren't telling you why we're going to   Leo Brown  18:57 we think, clear. And you know, we weren't testing my blood sugar after I was, you know, in first or second grade, like and, and there's no indication that there was any need to at that time, no symptoms. Yeah.   Stacey Simms  19:10 So what happened? Did you go to college and start having issues or did it come suddenly. So   Leo Brown  19:14 I went to college, I look back and I wonder when the symptoms really began. But by the time I was diagnosed, I was working. I was with summer after my freshman year, I was working at like a family run vegetable farm in the Berkshires in Western Mass where I was in college. And I thought I was you know, I'm a pretty fit person. I'm not a college athlete. And I was with a couple of college athletes on on this farm. And so that was what made me kind of doubt that will maybe I'm not cut out for this. But long story short, I couldn't really make it through the day. There was a moment I remember where I was trying to get into the pickup truck that we were driving around, and I could get in but I had to like I would just like go put my hands on the wheel and just use my arms to just like, drag myself into the pickup truck. And that was odd. I'm not used to having that much trouble with something that seems simple. Why wasn't I using my legs? Right? I probably was, but it was I wasn't using my body the way I normally would. And then I also, again, no surprise to the community, I had to pee all the time. These guys I was working with were thinking like, what's wrong with Leo, like, all he does is go to the bathroom. And he's not very good at any of this manual labor. And I was starting to think maybe I just am sickly. I'm just someone who is not as fit and capable as I thought I was. You know, I'm not one of these college athletes. So who knows. So I went home for a couple weeks, I said it was a vacation, you know, I'd kind of plan to take two weeks off at some point in the summer anyway, I was at my girlfriend's house at the time hanging out with her and her family, just in the living room, really low key, like someone was watching TV, someone's reading the newspaper, we might have been playing board game, and I was just lying on the floor, basically, I would only get up to go to the kitchen and get like a tall glass of milk. And I think I went through an entire gallon of milk. And then I you know, I was like super comfortable in this environment. So I wasn't pretending to feel any better than I was. But I also wasn't, I wasn't unhappy. I just had no energy. I was like, I was completely down for the count. And her mom is a scientist. And she said, You're not well, and you should go to the doctor, you should go home and go to the doctor. And I did and they tested my blood sugar. And it was 650. And so that was you know, right away, they put me on insulin. And skipping forward a bit. I went back to the farm Two weeks later. And they were astonished by like, I'd gained 20 pounds back. I had an I could do stuff. Do you remember how different you felt? Once I was on insulin right away? I had, yeah, like 10 times the energy, things felt easy, I think is the biggest thing. Like I wasn't unhappy. I just was confused by why I couldn't do what the type of thing that I thought I would be able to do. And again, I'm not. I don't think of myself as physically fit first and foremost. So in the back of my mind, I was always thinking maybe I'm not as fit as I thought I was versus an athlete, student or professional, who would sort of automatically know my performance is going down like something's wrong. I didn't think that.   Stacey Simms  22:33 All right, well, that's a fun way to start talking about the amazing race. Because I have been watching this show for I realized recently 19 years. And I've always thought, oh, that'd be so fun to do. And then I remember each season, why would never succeed, because the athletic ability you need just to survive and run from place to place is unbelievable. So I have lots of questions from listeners. I have lots of my own questions about the race. But the really the biggest one we get is, you know, how do you manage diabetes in a situation like that with travel and running? So if we can ask, we all saw you with the Dexcom while you're playing his steel drums and episode one that got everybody's attention and diabetes,   Leo Brown  23:12 even I didn't notice that in the clip.   Stacey Simms  23:15 Do you do if you don't mind it? Again, this is kind of personal. Do you take insulin pens? Do you use a pump anything like that? Yeah,   Leo Brown  23:21 I've tried different things over the years. And again, because my diabetes isn't type one or type two, it's hard to sort of draw comparisons. But the number one thing I do to manage my diabetes is through diet. So I eat a very low carb diet. And that is something I've always tried to do as much as I can have over the years. And at times that's enabled me actually to get off of insulin. However, there are so many variables. And on the race, I was not on regular insulin prior to the race, but I brought insulin on the race and had to use it in particular, because I would encounter food situations that I would not have chosen. And I also just didn't know what I was going to encounter. And that was also why I had the Dexcom, which I had. Well, I shouldn't say that's why I had the Dexcom. I've been using the Dexcom for some time. And that is also part of what has enabled me to kind of use insulin as I need it more recently, just to provide a little bit of context. When I was diagnosed, I did use Lantus and homologue, kind of a traditional prescription of insulin, as I discovered that I could use less insulin, if I ate fewer carbs, I over time would sort of rebalance my insulin with my diet. There are times that I wasn't using the insulin that I should have been. And I would sort of tell myself that I didn't need it. And if I didn't test my blood sugar, then I couldn't prove that I needed it. And then more recently, since the race and I'm not sure if this is you know an age thing or like an age pancreas thing, I have found that it's sort of floating higher Even with like, when I'm sure I'm, and legitimately, perfectly executing a low carb diet, and it's higher than I would have, you know, not high like 121 3140. Like, I wouldn't see the numbers like that if I had everything else controlled, and yet, somehow I do. But then if I start running more frequently, it kind of goes back down. So there's all these variables. And for the race, when there's so much that I can't control, I knew the Dexcom would be a CGM in general would be crucial. And having insulin available would be crucial. So I didn't want to go with an omni pod, because I got a couple of infections, actually, from the site, not saying that Omnipod, but just in general, like, I don't have a ton of body fat. And so like, I think there was just the wrong spot. And that can happen with any device. But for the race, I really want to do avoid that kind of thing. That's the sort of thing that could have actually put me out of the race, you know, if I had like a real infection, and so what I ended up bringing on the race was syringes, like old fashioned syringes with a vial of human slug. And the reason I went that route, actually, is because oh, no, I actually think that was just all I had at the time, because I had the syringes around for the token like a true diabetic. Yeah, I had the syringes and they were around from the Omnipod. And then I have to include this, which I had forgotten about, but we were at the hotel ready to go, you know, we're not sure when this starts going to be. And I think I was actually on the flight to LA at the start line. When I realized I had left all my insulin at home. There's one thing I didn't remember, it was in the fridge, it was lined up like little soldiers. So there was a whole production of gold, having someone having a production assistant go to Walgreens, like paying out of pocket, months later figuring out reimbursement. So that was it was a major part of preparing for the race.   Stacey Simms  27:05 Okay, I have to tell you, I have so many friends with so many stories of forgetting insulin and for getting supplies you have just made our day. So thank you for acknowledging that you're human. Oh, yeah, that's crazy. Oh, you went over here. So the other question was, this question kind of comes from the food? I thought I knew the answer this after all the years, but I wasn't sure. How do they feed you on the race? We see the crazy food contests. What are you eating day to day? And then the question was, how did you manage that?   Leo Brown  27:31 Yep. So I only ate in between legs. Mainly because I didn't want the distraction the production, the possible possibility of a higher low blood sugar during legs. Now keep in mind, I was not using a basal insulin at this point. And so I didn't really need to worry about my blood sugar floating low unless I had a short acting insulin in my system. And with the adrenaline happening during the race, I did not feel the need to be eating. And then in between legs, teams stay in a hotel, the race provides food. I'm being a little careful, because we're not supposed to talk too much about behind the scenes stuff. But what I'll say is that, you know, the food I would ask for I would eat what I could have it. And if I needed more, I would ask for more. That brings me to the topic of what I generally which is if you gave me a slice of pizza, I would eat only the top. In fact, that's a business idea that one of the other teams and I the blondes and I want to start pizza tops. I know we haven't made any progress on that. But like pizza tops, very delicious. Sometimes you can even find someone who's lactose intolerant, and you split the slice of pizza horizontally. So that's the kind of food strategy or trick I would use. There was food available to all the teams and sometimes I would have to ask for a little bit more to make sure that I can eat enough. Okay,   Stacey Simms  28:57 I am a Jewish mother. You were not super hungry during the race. I mean, again, I know we can't we have to be very careful. We don't know how far you got. We know you've got through episode one. But I'm thinking even an episode when you were swimming. You were running around or playing the drums. It's a long day. We don't have to eat a whole lot of adrenaline.   Leo Brown  29:16 And I you know, I always had a bar. I always had sugar tablets with me. So I should point that out. But you know, your heart's racing. You're competitive. Your adrenaline's high. And on that note, you're probably going to ask me about this. My blood sugar went high from that. Yeah, right. So like my blood sugar shoots up when I play coed softball in a league, you know, that I pay to be here. Right? Like it's not a competitive situation. But like, you know, The pitcher winds up. I'm at third base and like my heart's racing, and then I look at my Dexcom later and my but the first time this started happening, I was so confused. I know. I didn't eat anything like and yeah, so that happened a ton during the race to the point where I didn't Security actually said the security staff was who was really tasked with sort of keeping an eye on me from a medical perspective. And they, they would say, like, you can't let your blood sugar get that high. And I would say, well, like, Yeah. Like, what? Also what do you want me to do take insulin? Like, I don't think you want that. It'll go back down pretty quickly when I calm down, but right now, yeah, like, I've always found it's not worth trying to treat the adrenaline highs, because then I don't really under like, I can't do the same calculation around eating something like, How high is it gonna go? How excited was I? Like, how long will it last? Honestly, I've thought about trying to control that sort of thing through mindfulness, or meditation and sort of just like slowing down my adrenaline in general, although I don't want to change who I am as a person and you know, being hated about things. So that's a trade off, I guess.   Stacey Simms  30:55 Yeah, I think adrenaline highs from sports is just something that most people with diabetes that I know learn to figure out and kind of work around and not dose for, as I said, because you it's it's so tricky tolerate, um, time zones came up, too. But since you're not dosing basal insulin, that's not really a question, right? I mean, time zones, I assumed would affect you, but not really in the same way as someone was dancing that way. What   Leo Brown  31:17 Yeah, I didn't go space all during the race. And I think time zones affected all of us in an odd way. But, you know, we weren't sleeping in 24 hour cycles, we were sleeping during breaks between the legs, and the legs were not, you know, they didn't start when the sun came up, and when the sun went down, so yeah, I don't know. I mean, I think if I had been dosing basal, I would have had to just, you know, set a timer and decide that's when the next day began.   Stacey Simms  31:46 All right, any tricks and tips to keep your Dexcom on? Did it stay on in the water? Did it stay on with the sweat? And the reason the whole thing? That was what I was thinking about?   Leo Brown  31:54 Yeah, incredibly, it did. Since the race, I've gotten more experience with using the Dexcom and have started to use three M tape. And at this point, I just put it on preemptively. And aggressively. So it's like all over the site. I was, I think, kind of lucky during the race, the biggest issue I had with a Dexcom. And this gives you some insight into like the level of excitement and my state of mind was, at one point, we were on an airplane, and I was checking my blood sugar on, I actually was using, not my phone, but the little device that it comes with, because we didn't have our phones. So I was fiddling around with this device. And my mind's racing a mile a minute, right, like probably the entire race. I mean, to like, say, exit out of the part of the app that I'm in. And I decommission the sensor. Oh, no. Unlike the I was installing the sensor, no, I installed the sensor. And then I said the sensor is over right. Now, it is not possible to reverse that. And I was so distraught. And olana pointed out at that moment, that I had brought four sensors for 30 days, because I brought an extra and that was when I used the extra. At that point. I didn't have an extra. But at least I had that one. That was like, I don't know if there was a moment in the race when I was more horrified then when I installed Dexcom and then immediately decommissioned it.   Stacey Simms  33:32 Oh my gosh, yeah. I think a lot of us have done that. You guys were very early in your relationship, as you said. Very brave thing to do. exciting thing to do. Did you have fun? I mean, you're married.   Leo Brown  33:44 Yeah, we had a lot of fun on the race. It was also I will say a very stressful experience in general. You know, our first time on TV, you know, we really wanted to keep racing. You might have noticed in the first episode, we were on the second flight, we were in 10th place at a certain point, the oil drums were huge and hard to handle. The fish numbers challenge was horrible. Try remembering for numbers and the numbers were okay. But the colors. The problem with the colors is that what are you reading the fish nose to tail left to right, like you flip it over upside down? Right? It's sort of like you can reverse the fish in all different directions. And we were just like, really, things were not getting any easier. And then the skill drum challenge Fortunately, I felt pretty comfortable with so that was Trinidad and Tobago, and we had a blast, but we also had a lot of anxiety. You know, as far as our relationship, I think we kind of knew what we were getting into, in a way. I mean, I suppose it was more intense in many ways than you could have imagined. But we knew we wanted to do this big adventure like we knew it was a once in a lifetime opportunity. We wanted to travel we wanted to get to know each other. We wanted to get away from our jobs like It was a no brainer. And I think that our relationship from day one has always been that we want to do things together, and not like shy away from experiences. And we're just both wanting the same thing out of life in so many ways. And so it would have been against our nature to hesitate to do this thing together.   Stacey Simms  35:20 So this was taped in 2018. This is pre COVID. But this is a long time ago. How hard is it been? I mean, I don't know exactly when it wrapped up, or if you know, when it ramped up production. But how hard has it been for you guys to sit on this for all this time? You can't say anything?   Leo Brown  35:35 Yeah, it's been a big secret. And it's been a huge relief to share. We were able to share with close family, initially, MBAs, everything we couldn't share with work, we couldn't share with friends, we couldn't share it, my friend who was house sitting for us. And we have been able to stay in touch with the cast. We're really close with the rest of the cast. The fact that it took so long to air is I think part of that, like we've had a chance to see each other go through stages of life together. A couple of them were at our wedding, everyone else was live streamed into the wedding. So having the cast as sort of a support system through this has been really huge. It's just a Yeah, it's a huge relief to be able to share that. That's unbelievable. And I have to say, just watching the first episode, and I haven't watched the show in a few years. And now I'm back in I'm very excited. Good. But it was a joy. Great season. Well, I'm glad to hear it. But I gotta tell you, it was a joy to see travel. It was exciting to see the world again. escapist is voyeuristic. Yeah, it's, it's what we need right now. Of course, being able to see myself through those things is a trip and feel so great. But also, you know, just being able to see people interacting, like we used to, I'm sure there's going to be some airplane footage. The first episode was notably absent airplane footage, which I think everyone was sort of would you know, that's what you want to see right now is like everyone like squeezing onto a plane. But there will be some of that the carnival in Trinidad. Imagine, you know that today? You want to see that back to the way it was, when it can be. But yeah, I do think it's the perfect show to be airing at this time, unlike Big Brother, where you're locked in a house. And it's kind of the same as you know, you get everyone tested, and then you can be in the house. But the race is obviously the opposite. And we are we're all hoping they'll be able to you know, keep running it again soon. You know,   Stacey Simms  37:39 I I would like to know, and I, again, I've watched the show for 19 years, you know, what's the crew? Like? What's it like traveling with those other people that we never see?   Leo Brown  37:48 Yeah, first of all, the crew is many in number. And they're an integral part of the experience. They are supportive. They're excited to be there. They do incredible physical things with you know, 50 pounds of equipment, trying to keep up with us. We're trying to go as fast as we can. And then they're, you know, jogging alongside us. They haven't a job that is would have been hard to imagine. I mean, now I've kind of seen them do it. But you know, they travel around the world. A lot of them work on other shows. Some of them have been doing the race since the beginning. And now we follow a bunch of them on Instagram, and they all post great photos of their non office jobs. Like to them   Stacey Simms  38:28 you've got the goats, right, and you're running to the mat. Where are they? They're behind you. They're in front of you. They're trying not to get trampled by goats. I mean, it's got to be an incredible skill on their part to   Leo Brown  38:37 Yeah, so also keep in mind that there's equipment like drones that they can deploy. So generally speaking, 90% of the footage, I would think is from a person carrying a gigantic camera, just running around. But if you think about like the water challenges, actually, I think they've had cameras on boats, you know, I probably shouldn't get too into that. You'd probably just do drones. Yeah, sometimes it's   Stacey Simms  39:06 drones. And what's Phil like, Phil is nice. Don't tell me if Phil isn’t nice.   Leo Brown  39:10 No, feels great. Phil is just like he is on the show. Except if anything quicker wittier than you might expect, like none of it's scripted. As far as I know. He's really fun, really warm, and he wants us to do our best. You know, one thing I did want to ask before I let you go, I found you on Twitter because someone in the diabetes community was talking directly to you and saying, Hey, we watched the show. My daughter just got to Jack's calm and saw you with yours on TV and it made our night. You are while of unusual case in the diabetes community. You are in the community now. And I'm curious what that's like for you. When you see people reacting so positively and so excited to see you on the show. I was definitely surprised that people picked up on it right away. You know, I didn't see the Dexcom in the episode. And it's an incredible feeling to have that be an inspiration for people. And I know how I felt when I was first diagnosed with diabetes. And I didn't know what I would be able to do, it took me some time to realize that I wasn't going to get a break from it. And to kind of there's the diagnosis, which was a relief, actually, because then I could do things that I wanted to be doing and thought I could be doing, I just, you know, they told me, I just have to do this and that, and then I can live my life. And then it was probably a couple months later, where it sort of hit me that, you know, I wouldn't be able to go back to the way it was before. And I remember my sister who's a couple years older, she was watching this happen. And I was a freshman in college, I just finished up freshman year of college. And I had to I realized, and especially because I was making such an effort to manage with diet, I realized like, I wouldn't be eating birthday cake, I wouldn't be eating a hot dog button. And the way she saw it was that I had to grow up really fast, because I have a sweet tooth. Like I love candy. And I don't eat cake. I mean, I eat dark, dark chocolate, but I don't eat candy. And oh, what I'm about to go make for myself after this interview is a hot chocolate, which is made of half and half and cocoa powder, no sugar, and I mix it together and I heat it up in a saucepan. And it gets like to be to me indistinguishable from like a chocolate syrup that I want to drink. But it's got no sugar. So I recommend that. Anyhow, I'm on a tangent. It's really exciting to me to be able to hopefully, give people who were in my shoes. I think the person who commented that was her daughter's first couple days with Dexcom. So I remember what that was like. And on one hand being really hopeful that I had a solution for myself. But on the other hand, accepting that, you know, there were real compromises. The solution was not one that I was always going to love. But for the race, those are solutions that helped me run the race. Yeah.   Stacey Simms  42:13 Well, I can't thank you enough for jumping on so quickly for sharing your story. And for being so open about everything. And thanks for hanging through the technical stuff, too. I appreciate.   Leo Brown  42:24 I think we got a lot I got us a Wi Fi upgrade in the course of this interview. So she's she's busy. Behind the Scenes love it.   Stacey Simms  42:32 Yeah, I appreciate you doing that so much. So look, we'll check in. We'll see how it goes. And maybe we'll follow up. But thanks again for spending so much time with me. Okay,   Leo Brown  42:42 thanks a lot, Stacey.   Announcer  42:49 You're listening to Diabetes Connections with Stacey Simms.   Stacey Simms  42:55 More information on the foundation that Leo talked about. I will also link up stuff on hyperinsulinism. If you'd like to learn more, all of that at Diabetes connections.com. Click on the episode homepage where there is also a transcription and I'll put a link into the amazing race because they've got some cute behind the scenes videos each week. And oh my gosh, I hope they win. You know as we're taping this, the second episode hasn't even aired yet. So I don't know if they've made it to the third episode. And but you know how this works. You've been with me with other contestants. We've had people from the Titan games and from the baking shows the Food Network kids baking show, American Ninja Warrior, you know, the Christmas light. We've had people from all different reality shows and you never know but it's always great to talk to them and just making it to the show is a pretty incredible achievement way. I hope they went Tell me something good coming up in just a moment. But first diabetes Connections is brought to you by Gvoke Hypo Penn 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. And that's where GMO hypo pen comes in. It's 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 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 Gvoke logo Gvoke should not be used in patients with pheochromocytoma or insulinoma visit Jeeva glucagon.com slash risk.   Tell me something good. This peak is full of weddings and babies and celebrations. Congratulations to so many people in the community who took a big step this month. Rob Howe got married in early October so congratulations to Rob and to Erica. Rob is the founder of diabetics doing things the host of that podcast and and so much more. It is Rob that he's my Instagram guru, but I'm so bad at Instagram. I once I think I once was it Rob I once called him through Facebook messaging or Instagram messaging, I don't even know. I don't know how I did it. He was so polite. He was so nice. I felt like I was 75 years old. It was, it was not great. But congratulations to rob and Erica, who had a beautiful backyard wedding, you know, as we have to do these days, we wish them many years of health and happiness. Congratulations to Patrick Mertes, who had a baby with his beautiful wife, Patrick is one half of the team that made up 50 and 50. And these two guys who decided to go around the country last year, and climb the highest peak in all 50 states and try to do that in 50 days. And Patrick completed it Michael, his partner had an injury, halfway through and completed it. But later on, they did something else recently called race along the trace, which was three states. And 460 miles, it looks like a bike ride. He called it the last hurrah before fatherhood. So we'll we'll catch up with him and talk about that. But Patrick is also the director of the diabetes camp where my son goes every summer. So we are excited to see how a camp guy tackles fatherhood, I'm sure he's gonna do an amazing job because he's corralled all those kids for all those years. And finally, congratulations to Ken Rodenheiser, who also had a baby in October. He's a pediatric CDE in Philadelphia, and I think it's at the hospital where he himself was diagnosed years ago. But he has been a very big part of the children with diabetes organization and the friends for life conference. I believe he leads the tween program there, Ken and I have gone back and forth for years about getting him on the show. And we will work it out very soon. But I just wanted to highlight him in this segment and say congratulations to him and his wife and their babies name is Elliot, this adorable little girl. And I just realized as I'm reading this, I didn't put two and two together. But my next Tell me something good is also an Elliott. But this is Elliott Fry. He is the former kicker and all time leading scorer for the University of South Carolina, he lives with type one. And earlier this month, he kicked his first field goal in the NFL for the Atlanta Falcons in the Carolinas. Elliott is very well known for working with kids for being really out front with JDRF. And just being you know, out there as a great role model and example of somebody who plays sports and plays them at the highest level with type one. So it was really exciting to see him get that very first field goal in the NFL. And that's Tell me something good. Do you have something for me send it my way, Stacey at Diabetes connections.com. You can also post in the Facebook group, you don't have to have a baby or get married. It can be as easy as your son or daughter did their first sight change, without crying and running away oh my goodness, that used to be such an ordeal with Benny, anything that feels momentous anything you want to celebrate with the diabetes community, I would really love to know about you can go ahead and tell me something good.   It's hard to believe that it's going to be November in a couple of days. And I know we're all stressed out about the election and the possible aftermath. But it's also diabetes Awareness Month. And I don't know how that's gonna get any play this year with everything else that's going on in the world. But I'm gonna try and I always say diabetes Awareness Month is for the non diabetes community. I mean, we're aware every day of the year, this is our chance to educate. So I have a few things in mind to try to get the word out in other media. And I won't be talking so much about that here. But I'll share if anything exciting happens. But I am going to be doing two different things. If you're on Instagram, I will be having a contest I'm probably gonna start that the second week of November because I want to get past this election to that's just going to be a fun giveaway, to celebrate each other to be part of diabetes awareness. It's going to be fun and easy. I have some great companies lined up already that want to donate stuff and give it to you. I mean, you work hard all year round. Let's celebrate a little bit. And we have a big episode milestone, the numbers I'm so excited to share this with you. The second one is going to be on Facebook only. So we're going to have an Instagram only and a Facebook only. And the Facebook is going to be a little bit more work on your part. But the prize is going to be bigger, that one's going to be a cash prize. So I will keep you posted. The best way to keep track is to be in the Facebook group. Or to subscribe to the newsletter. If you're not already subscribed to go to Diabetes connections.com the cute little please sign up should pop up. But if it doesn't just scroll all the way to the bottom and you can sign up for the newsletter right there. So two contests coming up. I want to make it easy for you. I think it's gonna be fun. We just need a little brightness around here. And I hope I can provide some of that. All right thank you to my editor John Bukenas from audio editing solutions. thank you as always for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.   Benny  49:46 Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

Halloween can be a challenge for many families touched by diabetes, but just imagine beng diagnosed ON Halloween. That's what happened to Kelly Kunik in 1977. In this "Classic" episode from 2017, Kelly shares her story, her family's unique experience with diabetes, and what led her to beginning her blog, Diabetesaliciousness, in 2007.  Check out Stacey's new book: The World's Worst Diabetes Mom! Join the Diabetes Connections Facebook Group! Listen to our "Ask The D-Moms" episode with advice for parents about Halloween. 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, read reviews and get your copy today at Amazon or at Diabetes connections.com.   Announcer  0:24 This is Diabetes Connections with Stacey Simms.   Stacey Simms  0:30 Welcome to what I'm calling a classic episode of Diabetes Connections. This interview originally aired Halloween week of 2017. But it's a really good one. And we have a lot of new listeners and a lot of people who might discover it now for the first time. So if that's you, Hi, I'm your host, Stacey Simms and my son was diagnosed with type one almost 14 years ago as a toddler. And Halloween this year is going to look very different just like everything else in 2020. But I hope you find a way to celebrate Halloween that is safe, that feels good to your family. And as always doesn't let diabetes get in the way. If you have questions about Halloween, if you are newer diagnosed family or you just are confused, you want to try something new this year. We did a great ask the D moms episode about that. And I will link that up in this episode homepage, you just go over to Diabetes connections.com. And when you see this episode, click on it and it will have a transcript and it will have links and one of those links will be over to that ask the D mom episode where me and my friend and wonderful author McCarthy give advice. We get questions all the time and we answer them the best we can we did a whole episode about Halloween. My guest for this episode is all about Halloween. Now. Not only was she diagnosed on Halloween, but she loves the holiday you're going to hear her family. I mean, they do it up big and they always have Kelly Kunis was diagnosed with type one in 1977, 43 years ago. And yes, you really was diagnosed on Halloween. She is a diabetes advocate mythbuster consultant, writer and speaker, Kelly launched her very funny and insightful blog diabetes deliciousness in 2007 with that goal of busting diabetes myths and spreading validation through humor and ownership and advocacy. She is also a daughter, sister, cousin, niece and and to people living with type one and type two diabetes. That incredible family experience really gives her a unique perspective. So here is my interview with Kelly Kunic on the eve of her 40th diversity with type 1 diabetes. Kelly, thanks for joining me, you're one of the things I get a lot in parenting groups that I'm in is you know, what do I do about Halloween? And so we're gonna be talking about that this week. But I thought it would be really fun. And so just a good excuse to talk to you. To find out more about being diagnosed on Halloween. I shouldn't have said it'll be fun. It's always fun to talk to you, Kelly. But that's not fun at all. Thanks for coming on with me.   Kelly Kunik  3:11 Well, thank you for having and thank you for doing what you do. And I think Halloween is an excellent topic.   Stacey Simms  3:18 Yeah. Tell us your story. You were diagnosed. And I can't believe as we're talking here. You're kind of on 40 years for your diagnosis.   Kelly Kunik  3:25 Yes. Yes, I am. And that's crazy. And I can't believe it. And I just as shocked as you are. But yes, it will be 40 years with, you know, celebrating my type 1 diabetes diagnosis on Halloween. And it was interesting. And what I remember a lot of it, tell us, I just remember a lot of whispering that week with my parents and my siblings. You know, I have siblings who, who also have type one. And my dad had type one. And, you know, Halloween every year was a pretty big deal in our house. And it was up to my siblings to come up with my Halloween costume. or help me come up with it. Because there were so many of us. And I couldn't get them to commit. And I remember coming home from school one day, and my sister Debbie, who had diabetes and who had passed away from diabetes met me at the door. And she asked me if I was thirsty. And I was of course, and she gave me a tab. And I download it. And then she asked me if I wanted another one, which of course I did. And I download it. And then she asked me if I wanted another one.   Stacey Simms  4:44 And we're talking about tab the diet soda because just to be clear, right? I mean, right?   Kelly Kunik  4:49 That right tab the diet soda and I drank the third one and then of course I had to go to the bathroom. And she said well drinking I'm not going to let you go to the bathroom, unless you pee on this test tape, which was a way back in the late 70s to test what your sugar was. And I was smart enough to know that that wasn't a good thing. Because there was test tape in all of our bathrooms, because of my two sisters with type one and my father, and I looked at my sister and I told her I didn't have to go to the bathroom. Oh, geez. And I was a pretty stubborn little girl. And I refused to go to the bathroom for like an hour. And I was dying at that point. Like I literally was doubled over in pain, but I knew that something was up and that if I peed on that test tape, something was going to happen that I didn't want. And I finally you know, I did I like I said, I would do it. And it turned to color it shouldn't have. And there were lots of whispers. And I remember my parents being on the phone with CHOP children's hospitals, Pennsylvania that night. And it was the night before Halloween. And I don't really remember a lot. But I remember the next morning we got up very early. And we drove to Philadelphia to CHOP. And I remember waiting in the registration office to register because as a patient because we'd never been to chat before. And then the physical exam. And I remember them hooking me up with an insulin drip. And I was trying to make my parents laugh. So I called it the Alaskan pipeline. Like luck bomb. It's the laughter pipeline. Look at me, I have my own Alaskan pipeline. But I really wanted to go out trick or treating. I wanted to go out and costumes, you can talk of all these different costumes I could wear and I love Halloween. Not just because the candy. I love dressing up in costumes. That was kind of my thing. As a kid. I was always dressing up in costumes, like if I could have gone to school in a cape. But back in the 70s it wasn't really acceptable. I was constantly dressing up in costumes. And I tried to convince a nurse who was dressed like a clown, that the results were inconclusive. Again, I watched a lot of television   Stacey Simms  7:25 you're waiting to hear. You're eight years old. You're trying to tell that the medical professionals around Yeah, because maybe it's not, you know?   Kelly Kunik  7:32 Well, I I used to watch Quincy, on answer Carol Burnett. Yes. And so I was I was just like, repeat everything that Quincy would say, I'd like to think the tests are inconclusive. And he just let me go out trick or treating. I promise you, I won't eat any candy. And my parents will bring me back tomorrow. But I have all these costumes lined up. And she looked at me and she said, Oh, honey, the tests are inconclusive. You have diabetes. And no one had said that. I said, Oh, okay. I guess I have diabetes, like okay. And I didn't really think that's when I started not to like clown so much. Yeah, and I remember them telling me that I could go trick or treating in the hospital. They could provide me with a costume, which was subpar. There was no way I was walking around in this costume. They had no creativity behind them at all. And then I could only get dietetic candy. And I was like, nope, no, thank you not doing that. I know what that is because of my sisters. There's no way I know, your stomach. You know that? What does to your teeth? I'm not doing it. And so I stayed in and watch TV, you know, and kind of waited till my parents left to lose it a little bit because they didn't want them to get upset. I could tell that they were upset and I didn't want them to get any more upset.   Stacey Simms  8:55 Tell you so much to talk about that you've said already here. But it strikes me now you've said a couple of times that you're trying not to upset your parents. You know, I mean, you were eight years old at the time, your perspective is different. It's your dad has had type one. You had other people in your family, sisters, other people in your extended family. Why was it so important to do you remember, it's just amazing how we try to protect the people around us. They didn't mean protecting you did you're though, you know you were the little kid.   Kelly Kunik  9:21 I think I knew from a very early age. I was one of six children. It was not necessarily a common household. You know, the six kids there were two parents. There were various extended family grandmothers great uncle's living with us, which was wonderful. It was a great way to grow up, but I knew the diabetes. I didn't know exactly what it was. But I grew up with it, if that makes any sense. And I knew there was a stress level involved with it. Even though I didn't understand it. I knew that some of my siblings and my dad would take needles at the table. Before they ate, I knew that our bathrooms were sort of set up like a lab with test tubes, and things like that, because they didn't test blood sugar back, then they tested urine. And your insulin was very, very precious, and a bit expensive. And I just knew that I like to make people laugh when they were stressed. And I think when you're the youngest child diabetes or not, that's kind of the thing. Just sort of become the comic. Because everybody's watching what you do. You're the youngest, baby. Oh, isn't that cute? She's so funny. You know, and I knew I couldn't articulate it. And I couldn't explain it. But I knew that it was big for my parents, this diagnosis or whatever was going on, because I couldn't even articulate it like I am now. But I knew that I knew they were sad. And they were trying to act like they weren't. You know what I mean? And I knew that for a fact. So I was trying to make it easier for them. And look, kids are smart. They just are, and they see, and they handle things in certain ways. And, you know, when you see your dad who's, you know, trying to keep it together, you want to make it easy for him. Especially when it has to do with you.   Stacey Simms  11:24 It just, it's amazing to me that and you're right kids know, they are much smarter than I think we give them credit for and even Benny at two was trying to make me feel better. You know, it's as hard to see your parent be upset. And that's it. You know, a kid wants to fix that most of the time. So even he do and that's what it is. Yeah.   Unknown Speaker  11:42 So So what happens on a Halloween,   Kelly Kunik  11:44 I stayed in and watch TV. I mean, I, I wasn't going to go out trick or treating in the hospitals. I had to have diet like guy they called it dietetic candy when I was throwing up. It's what it was called. And it was disgusting. And it caused a lot of gastrointestinal distress. And they had something like a jolly rancher type of dietetic candy that would make your teeth stick together. For like, five minutes, while it melted in your mouth, you could not separate your jaw. And I'm not kidding. It's God's truth. And it just wasn't worth it to me. I had tried this stuff, because my sisters would get it in their Easter baskets, or, you know, family friends would bring it over for them. And it was disgusting. And you know, when you're little, you don't know the difference. And you're like, oh, Chocolate, right? And it really did cause a lot of problems. And I knew that. Like, I mean, you learned it very young. Yeah, I didn't even have diabetes learned it is not good stuff. So I was like, I'm not a I don't have my costume choices with me. I'm not wearing these drugstore. Like I have a closet full of homemade patterns that are very good. And I'm not chick retreating. And working so hard for this disgusting candy. Most of it   Stacey Simms  13:10 was it was Halloween. Was Halloween ruined for you or the following year? Don't you dig out one of those costumes if I wake up?   Kelly Kunik  13:19 Oh God, I went to I never missed a Halloween growing up. The rule was like every other kid, I will give that credit to my parents. I never missed the Halloween. I went out with my pillowcase. Because that helped more. And we trigger treated for hours. I would eat some candy while I was trick or treating because we were walking like three miles. And then I came home, went to the living room, dump the pillowcase on the floor. Did the division like all the kids do? Candy? Like they like candy. They don't like candy. They would consider trading money. Because people would throw in nickels and quarters, boxes of raisins, which immediately hit the trash. And my mom would say, yeah, it's I mean, it was like any other thing. My mom would say, okay, what's the candy you wouldn't keep? And she would keep it. And we would figure it out like when I could have it. And then in a week or two, somehow that Halloween candy would disappear. Sometimes my mother would hide it after a few weeks in the top of her closet, or on top of the china cabinet, which kind of dipped in so you couldn't see what was laying on top she would put it or those cabinets on top of the refrigerator that holds nothing and are really hard to get to. But after a few weeks, just slowly disappear. And she'd say your your siblings ate it. Daddy must have gotten into it. You know my mother was a Chocoholic. I mean, but we always had fun. I always went out with my friends. And I give my parents a lot of I remember going to like Halloween party. somewhere maybe in fourth grade, I don't remember. But there was a cake. I think my mom even brought it. I think my mom bought a cake was ghosts on it was a big deal. And the ghosts were made out of icing. That was toothpicks. And I remember like, I won't want to go, but they didn't see I couldn't. And that was really smart of them. They didn't make it a bad day. They made it a fun day. It was a fun day. Halloween fun. They kept it that way.   Stacey Simms  15:28 Just wonderful. And it's just so great to hear. Did you have a favorite costume over all those years?   Kelly Kunik  15:33 Except that oh my god, are you kidding me? I was a gypsy, which was actually my mother's mother's costume from a Gilbert and Sullivan. Oh, she was an orator in England. So I had this beautiful like corseted top, that all the girls were in my family. And we I was Gypsy and I had a scarf and a big skirt. I was tigerlily for like two years in a row three years in a row. Maybe because I was obsessed to Tiger Lily did not like Wendy Darling. I could not relate. I thought Wendy Darling was a whiner. He thought Tiger Lily was a badass. And she kind of looked like me a little bit long, dark braids. And I have long dark braids. But she's who I related to. And I was her for two, maybe three years. I was a jack in the box. One year I won an award for that. most creative con. So yeah, I mean, I love Halloween. I don't. I think it's a great I still think it's a great holiday. So I don't know. Yeah. And I don't like when people and I understand why they say it. I shouldn't say I don't like but I always tell people to mine their words, when it comes to diabetes. Like Don't let your kids know that you're dreading it. Because it really is a fun hot day. But it's great not to be you for a night. You know what I mean? diabetes or not? Like it's going to be a challenge. But today they give away much more prize related gifts today than they ever did when I was growing up. And look, we are black that we can count carbs today. Nothing is off limit. Well, let's   Stacey Simms  17:12 talk about that. Let's go on. Let's just you know, we'll get on the soapbox for a minute because Kelly people who know you sure you have opinions. opinions are welcome. I have a radio friend who says agreement is not required. So let's let's just talk about it. You can say whatever you want here. Because as a parent of a kid with type one. Halloween is is scary and is your oh my gosh, everything's got to change. It says how do I do this? And then I have actually found if I could talk about me for a minute. The hardest part for Halloween for us has always been my well meaning neighbors, because I have a daughter who's three years older than Benny. And since the time they were very little we did Halloween just like you guys did. We get all the candy we put most of it away even without diabetes, you're gonna throw half that candy away or give it to the truth is the dentist or whatever. So my neighbor's bless their hearts. You know, those first couple years, they would say here's a Hershey bar for Lea. And here's a sugar free hard candy for Benny, you know, like, Oh, right. And I'm not letting my two year old eat a hard candy anyway,   Unknown Speaker  18:13 but Right, right.   Stacey Simms  18:15 Yeah. And some of them did have little prizes. I mean, I have one neighbor who always has a little toy for him. Like, you know, Penny toys is so cute and so nice. And I never said to people, you know, at the door on Halloween. No, thank you. We're not taking that sugar free candy. But you know, maybe a couple weeks later, when you're seeing them at the grocery store elsewhere, you can kind of work it into the conversation. But I always tell parents just go and like you said, you're walking so much half the time that they go low when they're out there, right.   Kelly Kunik  18:44 Yeah, I mean, like when I said I walked three miles at night, my hometown was only a mile long. Again, like, not really big, but we walked so much and for so many hours that my parents encouraged me to have that Chocolate bar because they knew I really needed it and I wasn't you know, when I was little to treat a low we would eat an orange. My mom didn't even bother cutting and wrapping an orange in tin foil. She said no, she's going to have she's gonna have a Reese's Peanut Butter Cup and she's walking around because she's gonna need it. But like you I still get asked you know, can you eat this Is this okay? And I always tell people like there's not too much I can eat I don't eat liver. They won't eat liver. So   Stacey Simms  19:28 not even with not even Chopped liver. No,   Kelly Kunik  19:32 no, I don't like it and you know, I know that I probably should like it because I run a little bit on the anemic side. I have my whole life but I can't stand liver. But yeah, I'm like the only thing I can't eat is liver. You know everything else is Game on. Oh, and like you said like diabetes or not divide the candy up and somehow it disappears the next few weeks because nobody functioning pancreas or not eating all of that candy. Just Can't nobody can adult child a child with diabetes, don't diabetes, anybody, people, it's just too much sugar. But, you know, I'm sure you talk to your neighbors and tell them something similar because I don't know, it's really great to have people thinking and looking out for your kids. But sometimes what they're trying to do like, for me, personally, I think there's a lot of damage with the sugar alcohol, like gastrointestinal is not damaged. But   Unknown Speaker  20:31 that's what I always trusting. So   Stacey Simms  20:34 I want to try to tell other parents Look, the way I handle it is just, you know, you don't say don't do this, you say, please do that, you know, you say, oh, wasn't Halloween fun? Hey, you know, we're trying something new this year, or maybe a couple of weeks before, you know, my doctor says, even if your doctor never says, you know, my doctor says that it'll be really fun and easier for Benny, if he just gets all the regular candy. And then we figure it out at home. Because right, sugar alcohols aren't good for him, or, you know, it's just better to have the real stuff. And but thanks so much. So just nothing special. And we'll see it in a couple of weeks of Halloween. And that way, nobody feels bad. You're not saying you know, hey, you bought us that candy, and we never ate it. And it made him poop for three days, you know, we're never not doing that.   Kelly Kunik  21:13 You know what it's expensive to that's the thing like here, people are really looking out for you. And right, and your child and spending more money than they should for very little bit of candy. Because, you know, a sugar free Chocolate bar or whatever. And it's expensive. So   Stacey Simms  21:34 I'm thinking here, we're talking about trick or treating, which I put all the costumes and everything. But it's been 40 years, if you don't mind me asking you to reflect on that a little bit. Something has diabetes never change. I imagine some things have changed quite a bit. You know, your bathroom probably doesn't look like a laboratory with those test tubes. Are you doing any reflection with the shear?   Kelly Kunik  21:54 You know, I am. So much has been going on in our world lately. Like I was gonna, I really wanted to do it up right for my 40th. And so much has happened over the summer and in the fall around our world with the elements and things like that last night I yesterday, I was working all day at a fundraiser for Puerto Rico, that I haven't really gotten it together to have this huge celebration I wanted to have. And five years ago when it was my 35th I was smack dab in the middle of Hurricane Sandy. Oh, right. Where I was where I lived was hit very hard from Sandy. So again, everything sort of went to the wayside. So I think I'm gonna do something for the year, as far as reflecting, because it's not just going to be about the day, a year of reflection, and bringing it into the 41st. year. I mean, quite, quite honestly, when I was little, I didn't necessarily think a person could live 40 years with diabetes, you know what I mean? Like, but I don't think as a child, you don't think that far? Know what I mean? You're just very immediate in the now for the most part, because that's what childhood is. It's the now. Yeah, I mean, I look back and I, I can't believe it. You know, I can't believe it's been four years, I can't believe all the changes, I can't believe I started with this journey with people who aren't here anymore. And my family, that makes me sad. But I try and live and be positive for them. So that's good. I mean, I just want it to be a good year. And I want it to be a great life. And, you know, we take the good and the bad, right? vinegar with the sweet. So there are days I get annoyed with it. Don't get me wrong, but I really try and focus on the positive because if I, if I let it bring me down every day, then what kind of life is that? You know, any mean? Any it's not going anywhere? So I like to say some days I'm in charge other days, diabetes in charge, like, some days we're both kind of like co executives of Kelly Punic Tony beam. Yeah, you know, there are days where I'm the CEO, and there are days when diabetes is nipping its heels and trying at my, you know, like, No, I want to be in charge. But I try and work with it as much as I can. You know what I mean? Because I don't want to hate it. There are moments when I dislike it intensely. But I don't want to hate myself. I can open up any magazine, and that tells me I'm not tall enough. Not skinny enough. Not busty enough. That's really easy. You know if he hated my diabetes, and I would be hating me, and I don't need that. I'm awesome.   Stacey Simms  24:53 You are awesome. But I have to ask you before we wrap up here, tell me about your blog, because I'm good. I always mess it up. Diabetesaliciousness. So where does that come from? And I love it.   Kelly Kunik  25:06 Okay, first of all, I'm such a dork. It was supposed to be called diet. I was supposed to be called diabetes-licious. Now when I started blogging, which will be 10 years in November, Oh, great. Go figure that one out. I had no idea what blogging was. Okay? None. It just looked like a Word file. And I could do a Word file. I couldn't create a website. That makes any sense. Oh, yeah. And blogger was essentially a fancy word file, right? He could upload pictures too. And there was always this thing I'd say, Oh, so diabetes-alicious. Like if I went surfing, and I got out of the water, and my blood sugar was like 125. So I can go to low diabetes-alicious. Or if I went out to dinner, and I had a big dessert, or maybe it was dinner in an Italian restaurant, which is always a bit of a challenge for me, pasta wise. And I checked my blood sugar a couple hours later, and it was like 170 like, Oh, that's fabulous. I nailed it. So it was always kind of a goal. Diabetes-alicious is always a goal to achieve was always just hitting the norm in my life, doing my normal everyday things, but celebrating it, you know, again, if I eat a pasta dinner, and two hours later, I was 175. That's pretty. That's like Nirvana. You know what I mean? Oh, yeah, totally Nirvana. It was diabetes. Delicious. And so I started to fill out the blog information that I wanted to do. And at the end, right before I hit Enter, I put the n e s s so made it diabetesaliciousness. I changed it. Because let's make it more difficult to say and pronounced. Why not? Again, I had no idea what I was doing. The only blog I'd ever read was Perez Hilton. And I didn't even know it was blog. I thought it was a gossip website.   Stacey Simms  27:02 And it's hard to imagine, right? But in 2007 we weren't even on Facebook. I mean, you know, it was so different.   Kelly Kunik  27:11 It was so different and I had now I can't change it. And I even change it on the business cards I had printed up I actually put Diabetes-alicious people are like what so if Diabetes-alicious never like diabetes, delicious. ness. Or you could just say Diabetes-alicious. I mean, I know it's a bitch to spell. It's my own fault. But it was 2007. I didn't know what I was doing. the interwebs was a new and exciting place. I didn't know there was a diabetes online community. Seriously. I had no clue.   Stacey Simms  27:46 Why did you start that? What made you jump in?   Kelly Kunik  27:49 You know, I had last a long term relationship. And I'd love to career. And I believe it or not, I wanted to sell insulin pumps, right? Because I really felt like my I had been pumping since 2002. I come from a family of sales reps, and performers, to basically like there's no doctors or lawyers in my family. We're all like salesman, performers, for teachers. And I was always the example that doctors would use, like, you got to meet this patient. She's doing really well. My doctors would have me talk to teens. And parents would stop me when they would see my insulin pump at the drugstore and haven't talked to her children. And I thought I really felt like insulin pumping changed my life. And I thought, well, I want to sell these things. And I sent my resumes out and nobody would talk to me. Nobody. And I had a marketing background and a writing background. I worked for several local newspapers and magazines, and I was a writer. And someone had mentioned blogging, or personal journaling. And I thought, oh, okay, hmm. And then of course, there was the whole like, a celebrity said they wean themselves off insulin and I got really mad at that particular celebrity. And I started this blog and then didn't know what I was doing. And I ended up calling this celebrities publicist in the LA in New York often, and I think I frightened the gatekeepers so much at both offices that the publicist ended up calling me back. And we played phone tag, and I ended up speaking with the publicist and saying, look, I think so and so was misdiagnosed. And this Oscar award winning person can be misdiagnosed how many other people can be misdiagnosed, and I really do think that's the case. But I was also upset because I knew of several young women with diabetes Lamia, whose parents had mentioned And this particular celebrity, as someone to aspire to. She has type one diabetes and look how great she's doing. And when I tell you I used to have parents come out of the woodwork and still do to talk with about their children to me. I mentioned that to the to that publicist, I said, Look, I don't know if you're aware of this thing called by Alenia. And it's very dangerous. And it's detrimental health, mostly it's women, young girls, and women with Type One Diabetes. But, you know, I know that young boys and men are awesome. And anybody can have it, you know what I mean? And so there has to be a better way to articulate that. And I really think if she came out with a statement, and again, I'm not blaming this particular celebrity, I think that's on the onus of the publicist. And she just wouldn't budge. And it got me so angry. And I think that was my first blog post. And I didn't know what I was doing. I just used it as a writing exercise every day on a subject that I knew intimately. And nobody read it. Except my friends. And I can tell you, the first person to leave a comment was Bernard, Errol. And that was like two and a half months after I started blogging, and I didn't know that this community existed. And when I found it was pretty life changing. So I'm very lucky. You know, but I had no idea what I was doing. I certainly wouldn't have made such a crazy name.   Unknown Speaker  31:40 Right now.   Kelly Kunik  31:43 Like, I had no idea. I just knew it was this great outlet for me to get all my feelings out. And I didn't even realize how badly I needed that until I started doing it. Yeah, we should I learned so much.   Stacey Simms  31:59 Oh, of course. Yeah, let's circle back to Halloween. Because there's so much we can talk about in Kelly, I'll have to have you back on. But let's circle back to Halloween. Because, you know, we're talking about food and food issues, and everybody has food issues anyway. And then if you have diabetes, it's a more food issues on top of food issues. So if you're talking to people who want to trick or treat or parents of kids, and they're worried about this holiday, any any last advice here on just kind of keeping it fun. And making it as normal as it can be?   Kelly Kunik  32:30 for Halloween is a great holiday. It's really fun. It's an imaginative holiday roll with the imagination part of it. If you have more than one child, the rules apply for all you know what I mean? You can have a little candy while we're trickers reading, you can have a CHOPolate bar, whatever I know, a lot of you know, we have our check stations, right? Check our blood sugar's if you're on a deck, it's a little easier, right? On the Dexcom. So that makes it a little easier, and really enjoy the moment and don't dread it. And if you're going to dread it, don't dread it in front of your kid. Especially your kids with diabetes. Like Don't do that to them. Because they can't necessarily differentiate that you're dreading the diabetes aspect of it, and they're gonna internalize it and take it personally. Does that make sense? Oh, yeah. It's just like, it's like, children don't understand when you're upset at the number on the meter screen. They think you're upset at them. Okay, so what happens? You find ways to change the number. I did. And, you know, I went and check my blood sugar with one hand, the number would be lower. You know what I mean? Like their kids can't tell the difference. Whether they're 10 or five, they can't tell the difference. You're mad or you're upset. I should say you're upset at the number on the screen. They think you're upset at them. They are diabetes. I mean, I do. They're dying. Yeah. And I think it's, yeah, and it's, it's so important for parents to know, at least I think it is that you got to put your game face. You can say, I'm going to be up checking all night. This is crazy. Don't say it in front of your kid. Don't say it in front of your kids. Just do it. Just do it. Like, honestly, that's not fair. And I know, parents, they go through a lot with this disease. I saw what my parents went through and they didn't have the technology nor did they have this supportive community. I don't know how they survived. But you got to keep your game face on. You got to make it fun. You have to make it fun. And just do what you have to do and that your kids take part in it. Hey, look, could you do me a favor? Could you check your blood sugar? Like, let them participate? What's the carb on that? Do we know the carb? Here? It's on my phone, look up my list, like something like that. You know what I mean? where, you know, kids like to help? You know, they have to know this stuff, too.   Stacey Simms  35:16 Oh yeah, we're on. So what do you do for Halloween? Do you still get dressed up? Do you   Kelly Kunik  35:21 know? I did last year I wanted to Abby from NCIS was really fun. Great costume. I've done that a couple years ago, cuz it's just so much fun to wear. I don't know what I'm doing this year. And again, because I've been so focused on what's been going on in our world and healthcare and things like that. And hurricanes. I haven't had a chance to focus. You know, I'm hoping I can get together with friends, at least. And then we kick off into world diabetes day. And it's a really big whirlwind for me, I hope to do something fun this year. And I haven't been thinking about it. Because there's been so much leading up to this where I'm living like I said, it's the five year anniversary of Sandy's on the 26th I want to say, and they're still part of my town where like, people are trying to get back in their houses their homes. Yeah, so the past few years, it's been a little bit. My focus has been split. Which is good, because it's not all about me, even though it totally should be.   Stacey Simms  36:28 Well, well, let me make it about you. Because we're airing this show. As we're talking here, a little louder. This, but we're airing the show on your 14th die aversary. So from all of my listeners, to you, yeah, we're sending you a gift now we're congratulations. Thank you so much. Well, I'm gonna put this all over social media. And at least we can give you a big Halloween. Congratulations and way to go and everything else because it should not go unnoticed. I just think you're wonderful. Kelly, you do so much good for our community. Your is so much fun to talk to. I hope   Kelly Kunik  37:02 you have a great Halloween. I hope you did, too. And thank you so much. I will go have a glass of Prosecco for sure. And I will toast it your way. And I will tell you what in the DSC because honestly, I can say it's the best medicine and I am so grateful to be part of it. And you do such a phenomenal job. It's just so fun. And voc is amazing. And I really feel like sometimes when nobody else gets it, I just know that I can turn to my community. And you guys get it. And I don't even have to utter the D word. to just be like, Hey, guys, I need your vibes and I get it. So I appreciate it so much. And I love everyone and I love what you do. So keep up the great work. And hopefully we can all have a little celebration together soon. Thank you for doing this show though. I think it's gonna be wonderful and help a lot of people and as all your shows do, and Iraq.   Announcer  38:09 You're listening to Diabetes Connections with Stacey Simms.   Stacey Simms  38:15 If you haven't read Kelly's blog, now you have to right go head over to Diabetes connections.com. I will link up diabetes maliciousness in the show notes. And I'm just so happy to bring Kelly and her story to a new audience a couple of years later. So we'll see what the reaction is to these classic episodes. I'd like to start releasing them doing things like this regularly in the new year. So let me know. Have you heard all 330 plus episodes of Diabetes Connections? Or have you joined us more recently, and you're looking to catch up by you know, having something like this come right to you. Because that's what's nice about these classic episodes, you don't have to search for them, they will come right to wherever you listen, whatever podcast app, they'll come up as new. And I think that'll really give some new life to these episodes that I love and are so dear to me. And our newer listeners haven't had a chance to hear. So I'd love to hear from you. Let me know what you think. Our regular episode is coming up on Tuesday. We drop episodes generally once a week on Tuesday, with bonus episodes here and there. And I am talking to Leo brown from The Amazing Race. You may have spotted his Dexcom and the episode that aired that very first episode of The Amazing Race. There was a racer, he took a shirt off there was his Dexcom and the diabetes community lit up so I was able to get in touch with him. We had a great conversation, and that is coming up on Tuesday. Thank you 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 on Tuesday. Until then, be kind to yourself.   Unknown Speaker  39:56 Diabetes Connections is a production of Stacey Simms media. All rights reserved all Wrong 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

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

Dao and Mitch are joined in the Sad Party dungeon by future celebrity chef and gigantic monster Brad Curry for a Herald Sun quiz! This one is from January 19th, 2019. Sad Party for more info! Apple user? iPad or iPhone? Click here for the Steve Jobs-friendly version! http://bit.ly/sp031itunes

Learn how you can help those hit by Hurricane Harvey. Stacey talks to Anne Imber who's working with Dr. Stephen Ponder, Kelley Champ Crumpler and many others to help coordinate the local effort. Anne shares what it's like right now in Houston, what they need and how to get it there. Team 1 Texas Diabetes Relief is made of local diabetes community members. Anne also recommends you consider donating to the "big guns" of ADA, JDRF & Insulin for Life, which are working together to get supplies to the area. Beyond Type 1 is also putting out great information. See links/info below for all groups.  Team 1 Texas Diabetes Disaster Relief Needed: Gift cards to Target, Walmart, CVS, Walgreen, etc Send to: Brazos Valley Endocrinology 4508 Mills Park Circle Suite 500 College Station, TX 77845 ATT: Kelly Champ Beyond Type 1 Love & Help for Texas Insulin For Life / ADA / JDRF  ------ Get our App and listen to Diabetes Connections wherever you go! Click here for iPhone Click here for Android   Sign up for our newsletter here As always, thanks for listening!!  

Introduction: In the USA we celebrate Independence Day on the 4th of July.  For us, this represents liberty and freedom.  The Bible teaches of a different kind of liberty, Christian liberty. We will discuss that.  Christian Liberty is different. Get comfortable. Music Credit Andrew Payne Statio: Guided relaxation Lectio: 11 And that is what some of you were. But you were washed, you were sanctified, you were justified in the name of the Lord Jesus Christ and by the Spirit of our God.12 “I have the right to do anything,” you say—but not everything is beneficial. “I have the right to do anything”—but I will not be mastered by anything. 13 You say, “Food for the stomach and the stomach for food, and God will destroy them both.” The body, however, is not meant for sexual immorality but for the Lord, and the Lord for the body. Meditatio: The Corinthians really struggled in many ways.  Paul’s letter to them included many different corrections about sexual immorality, and various contentions as well.  Among them was a form of spiritual covetousness. The argued and had ongoing drama.This was so pronounced that Roman Christians wrote a letter correcting the saints at Corinth in an apocryphal epistle known as 1 Clement.  These Corinthians were confused on how to fully live the Gospel.  Paul taught that. As Christians we consider the Law to have been fulfilled in Jesus Christ.  At times we can be tempted to think that this means that we can do whatever we want as long as we have faith in Jesus.  As Paul says in Romans 6:1 “What shall we say, then? Shall we go on sinning so that grace may increase?”  His answer to this is “by no means” or “God forbid.”  There are times when we may argue “I have the right to do anything” as if there is no sin.  The transition from the way in which this was taught in the law versus the way it is taught in the New Testament was important.  It changed from a set of prescribed rules to a set of prescribed principles. Instead of very direct do’s and don't's we are given higher principles upon which to guide our action.  What is harder to live? Is it easier to live the higher law?  I would argue that this requires greater spiritual maturity to live the higher principle based system.  Yet we don’t do it alone.  God will help.  He guides us through his Holy Spirit.  The challenge is that we have to be listening to gain the full benefit of this. As we yield to God’s Spirit, He will guide us to take action that will draw us nearer to him and cause us to change in meaningful ways.  We can be sanctified through His Spirit. Oratio: Prayer as indicated by the spirit. Contemplatio: Sit in contemplative silence in the spirit of God. Operatio: Visualize the change indicated to you through this scripture and share the message. Conclusion: Subscribe to the RSS by putting the following URL into your podcasting app. christianmeditationpodcast.com/rss If your podcast app requires the full feed URL then try this one. http://www.christianmeditationpodcast.com/rss iPhone: Click here for information to learn how to subscribe via the iPhone app. Android: Click here for a recommendation on a podcast app Each app will be slightly different on how to subscribe.  On podcast addict you click the plus icon on the top of the app.  Then click on the RSS button which is the second button down on the right after you click on the plus button.  Then input the URL information from above.