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A Generation X stroke survivor explores rehab, recovery, the frontiers of neuroscience, and one-handed banana peeling.

Bill Monroe

    • Jan 17, 2022 LATEST EPISODE
    • every other week NEW EPISODES
    • 42m AVG DURATION
    • 152 EPISODES

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    Latest episodes from Strokecast

    Jaz vs. The Red Dragon: A Stroke Story

    Play Episode Listen Later Jan 17, 2022 76:00

    Jasmine Loh was enjoying a pleasant lunch at work when the aneurysms hidden in her brain suddenly burst. Her world went blank briefly while the stroke settled into this thirty-something's head. A few minutes later, she reconnected with reality and went back to work to continue validating the performance of semiconductor fabrication equipment. That was in 2014. She left her job in semiconductor manufacturing due to her stroke, wrote a book, taught herself email marketing, and now does digital services for friends and clients In 2021 I met Jaz  through Clubhouse.  She co-hosts an online support group there from her home in Singapore. I enjoyed hearing Jaz's perspective on her stroke story, her dreams in the early days, and her experience of nearly "crossing over." You can experience all that, too, in this conversation with Jasmine Loh. (If you don't see the audio player below, visit   Click here for a machine-generated transcript About Jasmine Loh Want to know about me? I am... - a brain aneurysm stroke survivor and a cancer survivor from Singapore

    Learning to Speak at 34

    Play Episode Listen Later Jan 3, 2022 64:28

    Aphasia really sucks. It's a common stroke results where the survivor loses their ability to speak. They may por may not lose the ability to read, writer, or understand what people are saying. What they keep is the ability to think, create, have ideas, thoughts, emotions, and the entire rich interior life we all have. They just lose the ability to communicate that to others. You know how frustrating it is when you can't come up with the word you want, but it's right on the tip of your tongue? Now imagine it's like that for every word, from "catamaran" to "the." Ryan acquired aphasia after his stroke and has been rebuilding his vocabulary word by word. This week Ryan and his wife Anna join us to share their story and talk about their new series of books to help adults learn or relearn to speak. They make a great team. (If you don't see the player below, visit   Click here for a machine-generated transcript About Anna and Ryan Teal Aphasia Readers was created by husband-and-wife team, Ryan and Anna Teal. Prior to Ryan's stroke, he was an intelligence analyst, and Anna has an extensive background in marketing. Ryan had a massive stroke at the age of thirty-four, which left him with aphasia and apraxia. Throughout his recovery, the repetitive practice of reading out aloud seemed to be a tried-and-true form of speech therapy practice with promising results. However, the only books available to practice on a simple level were children's books. As an adult, reading these types of books felt a little demeaning. Although Ryan and Anna had many good laughs reading aloud about “a trip to grandma's house,” they quickly realized a need for simple, short readers with adult-themed content to support those in the aphasia community. After more than a year in the making and extensive collaboration with the renowned Mary A. Rackham Institute University Center for Language and Literacy and input from top neurological teams, they finally wrote their first book of Aphasia Readers for adults. Their ultimate hope is to provide accessible and affordable supplementary speech practice tools for others in the aphasia community to help pave the way for a successful recovery. Eagle Syndrome Eagle Syndrome caused Ryan's stroke. It' a fascinating condition. Sometimes it's caused by tonsillectomy or throat trauma. Sometimes, the cause is less clear. Basically the Styloid bone below the ear grows way bigger than it should. When it does that. Bad things can happen. It can cause throat and mouth pain. It can directly impact or squeeze nerves in the face or neck and cause pain that way. Or in Ryan's case, the bones ca press against the carotid arteries (two of the four blood vessels that supply the brain) eventually blocking them off and severing the supply of blood. When blood flow to the brain or part of the brain gets blocked, that causes an ischemic stroke. You can read more about Eagle Syndrome here: Aphasia Readers The Aphasia reader series of books is designed to help adults with aphasia learn to speak again. Anna and Ryan worked with the University of Michigan to validate the product. The Aphasia Reader addresses the problem of needing simple books for adults to practice reading that aren't kids books. There is already a lot of infantilization that happens to adults when the go into the hospital or become disabled. Reading books about playing with toys or visiting a long deceased grandmother can feel insulting and further grind away at the self-esteem of an adult who finds themselves unable to speak, walk, or feed themselves. The Aphasia Readers are a skill building alternative. Level 1 came out in 2021. You can find it here on Amazon* or from Levels 2 and 3 will be available sometime in 2022. Hack of the Week Ryan and Anna shared two hacks. Ryan uses Otter.AI or the Google recorder app on his phone to follow conversations. They do voice-to-text conversion so you can get live captions of the conversation you are part of in real time. This is technology that has come a long way in recent years. By both listening and reading a conversation at the same time, Ryan can more easily process what's being said, especially if the topic changes. It's similar to watching TV with the closed captions on. I do that because it just makes things easier to follow. It means I'm less distracted by other things and I'm less likely to get lost while watching a program. The dialog and the captions reinforce one another. (Special note: In my professional life I work as a contract trainer for Microsoft teaching journalists how to use Microsoft 365) This technology is also available in a lot of online tools. Microsoft Teams includes closed captioning at no charge so you can turn it on and follow along with the speakers in real time. A presenter in PowerPoint can also enable captions (and translation) for their slides as the speak. At the top of this article there is a link to a transcript of the episode. I create that using this technology. I upload the episode to the web in Microsoft Word and a few minutes later I have a transcript. If you'd like to learn more about that process, you can check out these 5, 90-second videos I created for Microsoft: The second hack they shared was the Fridge Functional Phrases. These are seasonal or event based lists of words or phrases someone with aphasia can practice. And Anna and Ryan put them on the refrigerator door. Every trip to the fridge becomes a chance to sneak a little speech therapy in. You can find a bunch of their lists at this link or use the idea to make your own. Links (If you don't see the list of links below click Where do we go from here? Visit to learn more about Anna and Ryan's work Share this episode by giving people the link Subscribe to the Strokecast email newsletter at Don't get best…get better

    Finding Forward after Stroke

    Play Episode Listen Later Dec 13, 2021 70:37

    Jeffrey Morse went into surgery to repair an aneurysm. There was a 75% chance he wouldn't survive. Fortunately, he did wake up, but when he did, he discovered he was paralyzed from the neck down. Complications from the surgery that saved his life cause a spinal cord stroke that mean everything would change. And then, after a lot of hard work, Jeffrey defied all the odds and walked out of the hospital. One thing that jumps out at me from this interview is how much Jeffrey's career as a pilot informed his mindset and recovery -- perhaps more than he realizes. You can hear the conversation in the player below or by clicking this link.   Click here for a machine-generated transcript. About Jeffrey A Morse At 49 years old, Air Force reservist, flight instructor, and scuba diver Jeffrey Morse found himself lying in a hospital bed, paralyzed from the neck down after suffering both an aneurism and a stroke. Doctors told him that he would likely never walk again, but Jeffrey wasn't the type to give up. With incredible inner strength, determination, and faith, Morse defied all odds against him. He set a goal that he would walk out of the hospital in six weeks when he was set to be released. And to the astonishment of his medical team, he did just that! He continues to live with disabilities such as the use of his right arm--in fact, he wrote this entire book FINDING FORWARD: You Have the Will Within* with one hand. Still, Finding Forward encourages positive thinking and forward movement. With piercing honesty, Morse takes the reader through many of the challenges that he had to face through both therapy and every day life. He discusses the fears, the continuous claustrophobia, guilt from the burden he felt that he was putting on his loved ones... he shows how he dealt with these arising challenges and learned to overcome them. There is always a path forward, and as Jeffrey Morse says, we need to help each other find forward together. His mindset was liberating, and in many ways it saved his life. The Pilot of his Recovery Jeffrey served as a pilot in the military and in private life -- flying into and out of combat areas. As he went into surgery, he knew he might not survive. He had spent his life living his life. By the time surgery came around he had already had to confront his mortality and the possibility that he might not come back from work. While that can happen to any of us, it's not something most of us spend time thinking about. It's part of the reason many of us were unprepared for stroke. Jeffrey also talks about what to do when you encounter trouble in the air: Never stop flying the airplane. As a pilot your job is to keep that plane flying until you want to put it down. For those of us not driving aircraft, it means figure out your most important task -- for example, to live -- and focus on doing that job. Live and move in the direction to keep living. Keep flying the airplane that is you, no matter what. It's your only option. Jeffrey also described his process in various parts of the conversation in terms of steps he would take. He broke things down into their constituent parts and then executed them in order. Checklists are an important part of flying. You go through the list every time for every step. When an emergency comes up, one of the first things a pilot will do (while the other pilot continues to fly the plane) is pull up an emergency checklist to govern their actions. Checklist are not limited to airplanes of course. NASA uses them. Accountants use them. Logistics teams use them. The ER uses them when they call a stroke code. Checklists are an important part of everyday life and a great tool to use in our recovery. With pilots it is such an ingrained habit and procedure that using checklists not only tells them what to do. It informs how they think about what they do. And that logical and determined thought process can get us through some very stressful times. Finally, Jeffrey talked about the importance of communication with air traffic controllers around the world. The default language for all air travel is English, but that's not enough to ensure clear communication when thousands of lives are at risk. First, even among native US English speakers, there are miscommunications over words and pronunciations. For example, in college, I, a native New Yorker, was pair with Angie, a native Texan, for a game of Pictionary. We ended up in a bit of a conflict because she disagreed when I said that "saw" and "sore" were pronounced the same. She insisted they were pronounced differently. Now, expand the challenges beyond the US an when speaking English with folks from England, we can still have language based communication challenges. Simple words like "pants" mean different things in the two countries. And that's to say nothing of the rest of the world where English is not someone's first language. Aviation English makes strict use of vocabulary that is standardized across dialects around the planet to enable pilots to communicate key facts, questions, answers, and instructions with other pilots and controllers to reduce the likelihood of mistakes. We see this in the medical field, too. There is very specific language. Outside the medical context, its fine to say, "My arm is not straightening today. In the medical field we might say, "I'm experiencing high tone in my bicep." Neither is wrong; just like "sore" and "saw" are pronounced the same. One is just more precise than the other. That precision can make difference between treating an arm for tone and spasticity in an overactive bicep, or simply pursuing exercises to break down accumulated fascia. Jeffrey talked about learning and using the language of the doctors and therapists. Doing so makes communication clearer and faster which can result in better treatment and quicker relief. And these are just some of the ways that a lifetime in aviation has informed Jeffrey's thought process. It would not surprise me to learn there are many more. Fascia and the Fuzz Speech Jeffrey gets a lot of relief from neuro-muscular massage. This technique breaks up the fascia that naturally forms on and between muscles. As it builds up, it makes it harder to move. It's why our muscles feel stiff when we first get out of bed or if an injury keeps us immobilized for a time. Massage, Tai Chi, Yoga, aerobics, and really any extensive movement can help break it down and help us move with less resistance. The video, "The Fuzz Speech," is a fascinating exploration of fascia. It's the one Jeremy talked about in our conversation. You can watch The Fuzz Speech here. The Writing Process To hold and read a book that someone has written and published it kind of amazing. Those incredibly thin documents, with ink and pigments spread throughout them in precise patterns, are piled on top of each other and combined transmit a deeply personal story from one person to another. And how does this magical artifact come into being? What complex steps do authors have to take? Again and again they tell me you just have to write. You can listen to other conversations I've had with authors at and you hear that theme keeps coming up, expressed slightly differently. In Jeffrey's case, he says it comes down to simply butt-in-seat time. You've got to carve out the time and then dedicate that time to just making it happen. If you don't feel you have the skills to create a polished manuscript, that's okay. A ghost writer, like Bonnie, can help with that part. But it's still your story and your feelings that you need to get on the page. And to do that, you just have to consistently take the time and do it. Hack of the Week Carry a flashlight with you. This is even more important this time of year in the northern hemisphere when it gets darker earlier and stays darker later. You need to be able to see where you are going, and many of us need to be able to see our feet while walking. You don't want to trip over something in the dark and have another injury. A flashlight doesn't need to be a big thing. It can be a small thing. There are plenty of designs that will fit on a key chain or in a small pocket. You can even find options for connecting them to your cane. Before my stroke, whenever I travelled I kept a small "tactical" flashlight in my pocket. It was bright, had a strobe function, and was easy to hold in one hand. It was great when power would go out in a hotel, I would try to find things in an unfamiliar rental car, or an airplane would have a power glitch. I also found it helpful to have the extra light when I plug cables in.  You can often get free ones as branded give aways from all sorts of organizations, if you don't have one. Your doctor's office may even have some spares laying around printed with the name of whatever drug the pharmacy reps are promoting on any given day. Or you can order one to fit your particular needs. Obviously, flashlights are not hard to find. Here are a few I found on Amazon that look interesting: OLIGHT I1R 2 Eos 150 Lumens EDC Flashlight Powered by a Single Built-in Rechargeable Li-ion Battery, Tiny Rechargeable Keychain Light USB Charging Cable Included* This one is cheap, fits on a keychain, and you can easily recharge it from a computer or many phone chargers. Streamlight 66122 Stylus Pro 100-Lumen Penlight* This is slimmer and longer. It will be more at home in a short or coat pocket or a purse or bag. The classic pen light can be unobtrusive when you don't need it. Some folks with dexterity challenges may find it harder to hold with an affected hand. Fenix PD36R 1600 Lumen Type-C USB Rechargeable EDC Tactical Flashlight* This type definitely gets more spendy. It may be overkill for most purposes, but it is super bright and durable. It's practical, the strobe may make you feel safer since it may temporarily blind someone who may cause you harm, and…and…Ok. It's kind of an expensive toy. But look how cool! LightBaum- Adjustable LED Flashlight for Crutches, Canes, & Walkers* This is interesting. It's a flashlight you can mount on a cane or other mobility device. You don't have to hold it and can use it to directly illuminate your path in the dark. PS ZAP Cane 1,000,000 Volts W/CASE* Finally, if it's legal for you to purchase one and possess one in your jurisdiction, this may be an option if you need a weapon of some sort. The cane has a built-in flashlight, sure, but it can also shock someone with a million volts. Links (If you don't see the table of links below, visit Where do we go from here? Connect with Jeffrey on Facebook and check out his website at Share this episode with someone you know by giving them the link Http:// Sign up for the monthly Strokecast email news letter at http://Strokecast/com/News Don't get best…get better

    Surfer, Author, and Survivor Blake Hill's Journey

    Play Episode Listen Later Nov 23, 2021 62:14

    Click here for a machine-generated transcript. Blake Hill is an over achiever with an easy going attitude. Talking to him, you get the sense of a calm guy going with the flow, but underneath, he is paddling like crazy to get to the next big wave. After surviving a stroke, the turbulence in his life continued to increase, to the point where he was biking up a mountain in Canada and knew it was time to write Westfalia. We explore the events leading up to his mainly auto-biographical novel in this episode. To listen to episode, click the player above or click this link. About Blake Hill Blake is often thought of as a quiet person. Put a strong cup of good coffee in him and he becomes a chatter box. Although quiet on the surface his brain is always engaged and bounces from thought to thought. If you ask him his greatest accomplishment in life. It would be his role as Dad. Blake has two amazing children. He has spent countless hours flying on airplanes and traveling the world with his pro-surfer son. They have chased waves from California to Europe, Mexico, Indonesia, Japan, Australia and countless other destinations. He's the proud dad of a daughter who's strong and independent with a passion for dance. Blake's professional life began in the movie business doing lighting for movies and TV shows. During this time period he would balance working on set with cultivating his passion for writing. His day would typically begin at 3am. He honed his craft for writing screenplays while also working on the set of movies. Over the years he amassed a collection of ten screenplays and a children's book along with having his poetry published many times. Once his children were born he chose to quit the movie business and focus on his kids. This was truly an amazing time in his life and a true gift from the universe. He is truly grateful to have had so much time with his children while they were growing up. There's an adventurous spirit that lives within his soul. He's been riding motorcycles since he could walk. He's raced motocross, hare n' hounds and spent days riding across the Mojave Desert and camping under the stars. His rides across the USA have taken him through blizzards, tornadoes, and across the Arctic circle. His passion for life was dimmed one day when he encountered a stroke. It was as if a light switch had been turned off. This experience was beyond humbling and fueled his passion for living even more. He's not only physically strong but he's mentally fit. The stroke tested his will and mental fortitude. He kept the event private with only a few friends knowing about his mental capacity. He was challenged by the everlasting question of; how are you feeling? His focus was on healing and getting his memory back. He didn't want the constant reminder of what had happened. His physical self is truly one hundred percent. His mental self is challenged occasionally with loss of memory. He is extremely grateful to be where he is today on a physical, emotional and spiritual level. Blake's typical day begins at 4am with an awesome cup of coffee, splashed with cream while spending some quiet time with his two dogs. He works out with free weights, resistance bands, hikes with his dogs and tries to surf every day. He believes that keeping active mentally and physically is the key to happiness. He's 55 years old and with each and every wave he surfs, he strives to ride the next one better than the last. He truly feels blessed for his amazing life. You can find Westphalia at Amazon* or wherever you find your books. Writing Practice Blake's method of writing combines old school and new. He starts with a distraction-free environment. To keep himself in the mindset of writing every time, he listens to the same music -- Jackson Browne's Solo Acoustic Volumes 1 and Volume 2.* He also does all his drafts on yellow legal pads. These habitual behaviors help ease the brain into writing mode.  It's another way of leveraging the power of neuroplasticity -- the nerves that fire together, wire together. By reinforcing these patterns repeatedly, it makes it easier to write in the future. Then, he takes his handwritten drafts and types them up. As he types them in to the computer, he's doing a first editing pass. Visualization Blake talks about the importance of visualization. He describes how athletes learn to enhance their performance by visualizing that performance. In their mind they go through the movements, activities, and successful results. The idea is that parts of he brain can't distinguish between actually doing a thing and visualizing doing a thing. You get extra practice.  Last year, Peter Levine, author of Stronger After Stroke, talked about the same thing. Peter talked about it from thew scientific/medical perspective. According to studies with FMRI machines, when you watch someone walk or run, you activate the same part of the brain that lights up when you actually walk or run. Imagining the activity gives you similar results to doing the activity. The best parts of visualization is that it's free and completely harmless. There is no downside and there is a significant upside. So when you have a few moments or hours as you try to get back a limb or control your jaw, take some time to imagine yourself doing it again and again. To learn more, listen to my interview with Peter G Levine in this episode. Hack of the Week Blake talked about his strategy for dealing with the massive life changes after a stroke. Accept where you are. You can start to fix a situation or otherwise address it. Process it. Spend some time with the situation and feel your feelings about it. Ignoring your feelings isn't going to help. Forgive yourself for your feelings. If your feelings are counterproductive, that's okay. Forgive yourself for feeling that way. Then you can work on the situation or reality that you are in. Visualize where you want to be. Leverage the power of your brain to engage your natural neuroplasticity. Figure out how you want your life to look, and visualize your life that way and your abilities that way. Do it again and again. Use your mantra. A preferred phrase or mantra can help you center yourself and bring your mind back to focusing on your priorities and where you want to be. Links Helpful resources for more information. (If you don't see the links below, visit Where do you want to go from here? Learn more about Blake and his work at and connect with him on Instagram @ByBlakeHill Share this episode with someone you know by giving them the link Subscribe to the free Strokecast email Newsletter at Don't get best…get better

    100% with Stroke Survivor and Porn Star Misha Montana

    Play Episode Listen Later Nov 4, 2021 80:00

      Click here for a machine-generated transcript   Misha Montana puts 100% into everything that she does. From her prodigious and impressive collection of tattoos, to her work ethic, to her unconventional career choices, to now her commitment to raise awareness of the challenges of post stroke life. Misha joined the stroke club this past spring when her COVID-19 infection spawned a blood clot that slipped through her PFO and lodged in her brain at the age of 31. Despite memory and energy level challenges, along with lingering hemiparesis, she quickly returned to work, determined to not let her stroke stop her. About Misha Misha Montana is an adult film star/Director and the Chief Brand Officer and Production Manager for AltErotic. Misha lives in Reno, NV and Los Angeles and cares for her special needs son. In her off time Misha is a cyclist and bodybuilding enthusiast with interest and education in political science and psychology. Misha suffered a stroke on April 14th, 2021 and had heart surgery to repair a PFO shortly after. Misha is an advocate for stroke awareness and is extremely passionate about the cause. What is a PFO? A PFO, or Patent foramen ovale, is a hole inside the heart. Roughly 25% - 33% of people have a PFO, including me. The heart has 4 chambers -- two on the right and two on the left. When blood comes into the heart, it enters on the right side. From the right side of the heart it goes to the lungs to dump carbon dioxide and pick up oxygen for the rest of the body. From the lungs, it goes to the left side of the heart. Along the way, blood clots that accumulate in the system naturally get filtered out. The left side of the heart sends this now oxygen rich blood to the brain, toes, and everything in between. At least that's how it's supposed to work after birth. Before birth, while we are still building organs and body parts in the uterus, there is no oxygen for us to breathe. There's no air. We instead get all of our oxygen nutrients, and other stuff through the umbilical cord attached to our mothers system. Since there's no air, there's no reason for blood to go from the right side of the heart to the lungs. It goes straight from right side to left side through the PFO - the hole between the right and left. That hole is supposed to close on its own shortly after birth when we start breathing air. For most people it does. For up to a third of people it does not. As we get older, that hole may or may not cause a problem, depending on how big it is and how prone we are to developing blood clots. It allows unfiltered, unoxygenated blood to bypass the lungs and go straight to the left side of the heart and on to the rest of the body. When a blood clot sneaks through the PFO, bad things can happen. That's how Misha had her stroke. A clot formed as a result of her COVID-19 infection, slipped through her PFO, and lodged in her brain. She has since had her PFO surgically closed. It's a fairly simple procedure, as internal heart surgery goes. Other folks on this show have also had PFO related strokes, including Christine Lee in the pre-COVID times. My PFO did not cause my stroke. Mine was due mainly to high blood pressure. As part of the stroke protocol at the hospital though, they did find the PFO. A follow-up exam afterwards, which involved an ultrasound device put down my throat (thankfully with some awesome sedation) confirmed it was there, but likely too small to cause a problem. They decided to leave it alone. But now I have a ready excuse for why I was never an endurance athlete. Driving After Stroke Misha talked about driving herself to the hospital. Jo Ann Glim did the same thing when she had her stroke. Both will tell you now not to do that. It's a bad idea. Of course, I don't blame them. At the time our brains are dying, we are not making the best, most informed decisions. But what about after stroke? In the US, driving requirements are set at the state level. Whether you can legally drive after stroke depends on where you live. In most states, if you have had a seizure, you can't drive until it's been at least 6 months after your last seizure. For other brain injuries, it's more varied. I'm told that a stroke will suspend your license in California. In Washington state, where I live, the state does not suspend thew license of a stroke survivor. The day after my stroke, legally I could drive. That would have been a terrible idea because at that point it simply would have been dangerous. Driving after a stroke is something to discuss with your doctor and occupational therapist. The decision will depend on whether you can get in and out of d a vehicle safely and operate the controls safely and competently. It will depend on you vision and visual/auditory processing, cognitive abilities, emotional stability and more. There is a lot to consider. They may refer you to a driving therapist -- someone who specifically trains people with disabilities and brain injuries to drive. They may teach you new skills, or they may simple provide a comprehensive assessment of your ability to drive safely. I started driving again about 10 weeks after my stroke. I had an assessment with a driving instructor, which included an in person interview and a road test. After riding with me as I navigated the ridiculously tight parking garage in my building and the small, dense roads of my neighborhood, he signed off on me driving and sent the recommendation to my physiatrist. It cost me roughly $500 and that was not covered by insurance. I did get two modifications to my car. I added a spinner to the steering wheel so I could manage it with one hand, and I added a turn signal extension so I could use my right hand for that, too. Oh, and I got my disabled parking license plates! Driving is a major step in living a new life and having the freedom to get stuff done, especially if walking or public transit are more challenging after stroke. It's also an inherently risky activity with life and death consequences that ought not be taken lightly. Choose wisely. Adult Entertainment Industry As far as I know, Misha is the first professional adult entertainer that I have had an extended conversation with. Given the scale of the industry, I imagine I have had extended chats with other current or former professionals in the field, but given the stigma it wasn't something that came up. (Though there was that woman on a Northwest flight who struck up a conversation and when I asked her field of work said, "I provide miscellaneous personal services," and then quickly changed the subject.) What I really liked was how Misha describes the community and her colleagues. Talented, hard-working, kind and compassionate people just living their lives in an unconventional field and dealing with societal stigma. Often condemned and criticized for their choices by the very people consuming their content. I don't have strong opinions on it. As long as all involved are consenting adults that's really what matters. Misha's work in porn is the proverbial elephant in the room here so I can't very well not comment on it. Yet I don't want to make it the whole focus of the conversation, because that would disregard my guest's individualism. And I must restrain my inner thirteen year old from making silly awkward jokes. So despite opining for six (now seven) paragraphs (and making it about me), the best thing for me to do here is listen to what folks have to say about their experiences. Hack of the Week Misha talks about the importance of her planner for keeping track of appointments and other reminders. After stroke or brain injury that impacts executive function, we can't just keep all this stuff in our heads. Even without brain injury, it's probably not a good idea to keep it in our heads. The logistics of life take space and energy in our brains. Using a planner - digital or paper can make a big difference in effectively managing our lives. The other thing it can do is provide a place to write or to journal. There's value in getting our thoughts out of our heads and onto a list or into a paragraph. I find things will rattle around in my skull until I can record them elsewhere. Even if it's a stressful thing or a worry, getting it down somewhere actually reduces my stress because at one level, "it's been dealt with." Paper and pen are one way to do it. Typing on a keyboard or tapping on a phone screen are another. Voice memos or selfie videos are another. Find a way to journal or record your thoughts that is compatible with any deficits you have and that works for your comfort level Links Where do we go from here? Connect with Misha on Instagram or on her other platforms where you can find Misha's adult content Share this episode with someone you know by giving them the link Subscribe to the Strokecast email newsletter at Don't get best…get better  

    Texan, Stroke Survivor, Writer, Hiker, and One-handed Guitar Player shares his Story

    Play Episode Listen Later Oct 23, 2021 72:50

      Click here for a machine-generated transcript   The name "Avrel" means either "Elven King" or "Wild Boar" depending on who you ask. Fortunately, while Avrel Seale is not boring, this multi-book author and stroke survivor is the guest on Strokecast this week. Our discussion of course covers Avrel's story, but we also get into a discussion about the nature of Generation X and how all this discussion of generations came to be. Avrel also has some great insights into the writing process. His latest book is "With One Hand Tied Behind my Brain"*, so after you listen to our chat, pick up a copy from your favorite book store. (For the full content, audio, and video in this story, visit About Avrel From Avrel Seale has authored 10 books, including memoir, humor, philosophy, history, religion, and unsolved mystery. He lives in Austin, Texas, with his wife, Kirstin, and three sons. In 2018 at age 50, Seale had a major hemorrhagic stroke that left him partially disabled. His story of survival and adaptation, With One Hand Tied Behind My Brain: A Memoir of Life After Stroke*, was published by TCU Press in 2020. His one-handed guitar playing was featured on NPR's All Things Considered. In 2017, his memoir Monster Hike: A 100-Mile Inquiry Into the Sasquatch Mystery* was published by Anomalist Books to positive reviews. Wendy Garrett of KCMO Talk Radio in Kansas City called it “fascinating and compelling.” Nick Redfern called it “highly entertaining … a witty, amusing, and adventurous saga.” Andrew W. Griffin wrote, “There is something Walden-ish about Monster Hike that I did not anticipate when I first picked it up … as much about ourselves and our place in nature as it is about ‘monsters.' ” And Loren Coleman named it one of the 10 Best Cryptozoology Books of 2017. Dude: A Generation X Memoir* was included in the Austin American-Statesman's “Best Books of 2008.” Staggering: Life and Death on the Texas Frontier at Staggers Point (2014) chronicles the arrival of Seale's ancestors in Texas in the 1820s and 1830s and the tumultuous events and brutal conditions of the pioneering years. Seale often writes and speaks about the Baha'i Faith. In addition to numerous articles about the religion, his books The Hull, the Sail, and the Rudder (2006)*, True Freedom and the Wisdom of Virtue (2007)*, and The Tree – A Spiritual Proposition (2008)* deal extensively with Baha'i concepts. Though predominantly a nonfiction author, he has written two novellas — the afterlife comedy The Grand Merengue* and The Secret of Suranesh*, which he originally wrote and co-produced as an independent feature film. His latest book, Nuts: Down the Nueces River With One Stroke, is awaiting publication. Seale grew up in McAllen, Texas, the son of writer Jan Seale, the 2012 Texas Poet Laureate, and composer and conductor Carl Seale. Earning a bachelor's of science in radio-TV-film from The University of Texas at Austin in 1989, he returned to the Rio Grande Valley, where he started his writing career as a reporter and a columnist for the McAllen daily newspaper, The Monitor. In 1992, he returned to Austin and served 16 years as editor of the UT alumni magazine, The Alcalde. From 2011-2015 he served as speechwriter for the president of The University of Texas. Since 2015, he has been a writer and editor in the university's news, marketing, and development offices. Subject Matter Expertise: Stroke Baha'i Theology 19th century East-Central Texas History Crypto-hominology (sasquatch/bigfoot) Persuasive Writing The University of Texas at Austin Homunculus The core principle of neuroplasticity is the cells that fire together, wire together. The more you do a thing, the more connections will form in your brain to do that thing again. More connections mean more real estate gets taken up in the brain for that task. A professional basketball player will have a lot more neural connections dedicated to free throws than I will. I might have two. And one of those is dedicated to spelling it. The metaphor of the homunculus is helpful in understanding how this impacts brain injuries. The homunculus is a representation of the brain and various parts of the body. The more you use a part of the body, the more neurons it takes up in the brain. For example, the hands and tongue take up more space in the than the elbow and pinkie toe. The more time and energy you dedicate to something, the more space in your brain is dedicated to that task. For example, a homunculus of my brain would likely show a much larger segment dedicated to speaking than to throwing a baseball. One way I think about how this applies to survivors (and I may be stretching the homunculus analogy) is that a skill from the prestroke days that a survivor was an expert at may come back before a skill one had limited experience with simply because despite the damage there were simply more nerves dedicated to it. As you continue to work on a skill post stroke, a larger portion of the brain will be dedicated to it. More nerves, dendrites, and synapses will become involved. This is neuroplasticity at work. Writing Plan Avrel writes books, writes speeches,  and writes lots of other stuff, too. He also teaches writing. Avrel's recommendation for anyone wanting to write a book is to make sure you have something to say. A typical non-fiction book is going to be somewhere between 60,000 and 120,000 words. To give you an idea of what that means, a typical episode of this show is 10,000-14,000 words. To find out if you have something to say, Avrel suggests writing a long essay about your experience -- about 8,000 words. If you can't get 8,000 words from your experience, maybe you don't know what you want to say, yet. That could change in the future, or you may find another platform for your story. And once you do get to 8,000 words, you have a thing that you can shop around to magazines or to flesh out further and turn into a book. That long form document becomes the foundation that you can build the rest of your narrative on. To learn more about writing a memoir, also check out my conversation with Christine H. Lee at Guitar Playing Back in episode 22, I spoke with Craig Martin from Craig was a British professional guitar player working at clubs and restaurants in Spain when he had his stroke. It took one of his arms and he had to learn to use it again to get back to his beloved guitar playing.  And then it happened again. Today, he plays guitar and sings. He posts some amazing videos on OnlineBusker.Net and uses them to raise money for stroke organizations around the world. You can hear that conversation at The reason I mention that is Avrel is also a guitarist -- a one-handed guitarist. You can hear some of his playing at the end of the episode or check out this video: You can see more of Avrel's guitar playing on his YouTube channel. If you play guitar, I'm sure you'll be fascinated by his tutorials, too. Caffeinated Comics William Shatner released a new album and went to space. So that was my cue to join Jon Clarke on the Caffeinated Comics podcast to talk about it. Jon and I are long-time Star Trek fans and I've been fascinated by Shatner for years. In the beginning it was because of the combination of absurd projects he'd done combined with his reported arrogance and poor treatment of other Star Trek cast members. As we've all matured and I've read his memoirs and listed to his music and watched his talk show, I became fascinated in a different way. His latest album is called simply "Bill" and explores themes of depression, loneliness, guilt, connection, death, love, and horses. Some folks experiencing their own mental health challenges may find it triggering, but it's a fascinating piece of art. You can get the CD here* or find it in the streaming service of your choice. To listen to the conversation Jon and I have, click here, search for Caffeinated Comics in your favorite podcast app, or just click play below. Hack of the Week Avrel's hack is all about playing the guitar. He's able to make the notes and chords by using hammer on and pull off techniques on the fret board. This works well on an electric guitar. You can see more of Avrel's guitar playing on his YouTube channel. He doesn't just play most of the songs. He also takes the time to demonstrate how he does it and teaches his hammer on technique. On some tracks, Avrel also uses a digital looing device to expand his playing further. Links Where do we go from here? Check out Avrel's website to learn more about his varied interests Share this episode with someone you know by giving them the link Subscribe to the free Strokecast email newsletter at Don't get best…get better.  

    Stroke in Antarctica in a Novel

    Play Episode Listen Later Oct 7, 2021 69:51

      (If you don't see the audio player above, visit Click here for a machine generated transcript   I don't see many novels that deal with stroke and aphasia. Memoirs, sure, but not novels. That's one of the things that makes Jon McGregor's novel, Lean Fall Stand,* interesting. That, pls the fact that Jon himself is not a stroke survivor. He's someone who has taken an interest in our community an endeavored to learn more. Jon's novel follows the story of Robert, a research scientist in Antarctica. Robert gets caught in a storm , suffers a stroke, and acquires aphasia. The novel chronicles Robert and his wife's adventures as they enter and then adjust to living in stroke world. Jon and I talk about the book, Jon's research, his adventure in Antarctica, writing beyond an author's personal experience, and more. About Jon McGregor Jon McGregor is the winner of the International IMPAC Dublin Literary Award, the Costa Book Award, the Betty Trask Prize, the Somerset Maugham Award, and the American Academy of Arts and Letters E. M. Forster Award, and has been long-listed three times for the Man Booker Prize, most recently for his novel, Reservoir 13. His latest novel, Lean Fall Stand*, is out from Catapult in September 2021. He is professor of creative writing at the University of Nottingham, England, where he edits The Letters Page, a literary journal in letters. Jon's Resources Jon talks a lot about the research he did to understand the experience of stroke and aphasia. He met with therapists. He talked with survivors. He attended support groups. The Stroke Stories podcast is another resource he used to learn about Aphasia and stroke from a survivor's perspective. It's a show that tells stories more as news type pieces rather than in a traditional podcast interview. You can find it in popular podcast apps. A couple years ago, I was lucky enough to be a guest on the show. You can listen to that episode here: Stroke Stories Episode 50 - Bill Monroe The Aphasia Access Conversations podcast is another one Jon found helpful. It's a show focusing on the education, experience, and thoughts of speech therapists who work with folks who have aphasia. For more stroke related podcasts, visit Jon also learned from Sara Scott's YouTube channel. Sarah survived a stroke at age 18, about 12 years ago. Since then she has posted videos recognizing various strokeaversaries. You can watch her progress in dealing with aphasia over the decade and see her recovery over the years. Sarah Scott 10 years living with Aphasia (If you don't see the embedded video, visit Edwyn Collins is a Scottish musician who made it onto the worldwide charts in the 80s with his post-punk band Orange Juice. He survived a stroke with aphasia in 2005. Jon drew inspiration from the documentary of Edwyn's story, "The Possibilities are Endless" The Possibilities Are Endless (Official Trailer) (If you don't see the embedded video, visit Jon also learned from the Stroke Odyssey production from Rosetta life: SO Trailer 7 (If you don't see the embedded video, visit Artists' Residencies Artist residencies are a fascinating thing. In the one Jon talked about, he applied to go to Antarctica. He would be provided transportation, lodging, and access to the work of research scientists. In return, he would, eventually, make a thing. In Seattle a couple years ago, the city offered space in a draw bridge that an artist could have for months to make a thing inspired by the space. The variety of residencies available to artists is kind of amazing. It's an interesting intersection of public relations, marketing, public art, patronage, and other elements. If you feel a desire to create but want space, education, or inspiration, it may be worth exploring the idea of residencies. Writing About Marginalized Communities We discussed the idea of writing about marginalized communities in this interview, specifically about disabled people or people with disabilities.   A lot of the same concerns apply when writing about folks of a different race, gender identity, sexual orientation, religion, cultural background, etc. When you write a character who is of a different group, especially if the character is part of a historically marginalized group, the writer has a special obligation to get it right -- to make sure they can write about the character and the character's experiences with honesty, accuracy, and individuality, without reducing them to a series of stereo types. I've read parts of Lean Fall Stand* (Jon's team sent me a copy) and so far, his portrayal seems good. Of course, my experience with aphasia is all second hand. I'd encourage you to check it out and share your thoughts. Become a better writer Jon is a long time novelist and a professor of creative writing. You might expect him to have advanced models and techniques for becoming a better writer and telling better stories. But what is Jon's advice? Read more. Write more. It's that simple. Sure you need to read deliberately and think about the choices a writer makes in the pieces you read. To get better at walking, we need to walk more. To get better at moving our fingers we have to move our fingers more. To get better at speaking, we have to speak more. To get better at writing, we have to write more. More reading and more writing. Hmm. I can get behind that. Hack of the Week Jon talked with as bunch of folks with aphasia and cited two things they did that were helpful. First, the used their phones and tablets to help communicate. It wasn't just about typing out messages or using special apps, though. It was about using other tools for communication. For example, telling the story of travelling to a city by using the maps app. It was about thinking of different ways to share the story without strictly telling the story. Second, a lot of the folks Jon spoke with carried a card that explained they have aphasia and explains what aphasia is. There are still millions of people out in the world who have never heard of aphasia and folks with aphasia still have to deal with them. A simple card can make a big difference. Links (If you don't see the list of links below, try visiting Where do we go from here? Follow Jon on Instagram and Twitter. Take a look at Lean Fall Stand on Amazon* Share this episode with the book or writing lover in your life by giving them the link Subscribe to the Strokecast newsletter at Don't get best…get better.

    London Cop and Stroke Survivor Becomes a Fantasy Author

    Play Episode Listen Later Sep 27, 2021 60:44

    Click here for a machine generated transcript James Horton was a young police officer in London. He was 27 and felt invincible. His partner (personal one, not police one) was about to give birth to their first child. Naturally, that's the time a life of high blood pressure caught up with him and he experienced a hemorrhagic stroke. In this week's conversation, we James and I talk about that experience, how policing in London compares to policing in the US, how his stroke impacted his life and career, and how he came to write his fantasy novels in the Blue Swords series.* You can listen to our conversation in the player above or in your favorite podcast app. If you don't see the player, visit the full article at About James From James' Amazon Author page: James Horton left his hometown in rural Lincolnshire to join the police service in London at the age of nineteen. Serving as a police officer in several units, James has had his eyes opened to the highs and lows that comes with serving as a constable. Suffering a stroke at the age of twenty-seven, James turned to historic action novels to help settle his mind and aid his recovery. After his recovery, James decided to start writing his own novel, combining a career in the police and his passion of medieval stories. His first book, BLUE SWORDS, the first of The Crimes and Crests Saga has been based on true events, merged with a historic twist. Author profits for Blue Swords, books 1&2* will be donated to the Stroke Association UK. James would love to hear from his readers and can be contacted via his author page. High Blood Pressure High Blood Pressure is a major cause of stroke. It caused James' stroke. It caused my stroke. It caused the stroke of many of my guests. It's easy to check because home blood pressure monitors are pretty cheap. Many people don't check, though. And many never know they even have high blood pressure until it's too late. And that's because it doesn't hurt. Generally, high blood pressure causes no pain or outward symptoms while it's slowly destroying our blood vessels, as surely as the surging Colorado River destroyed the rocks in the Arizona dessert to carve the Grand Canyon. That's a beautiful thing to look at in the ground. It's not so beautiful when it's happening in our bodies. I only found out about mine when I started getting massive nose bleeds at random. By that point, the damage that would lead to my stroke had already been done. The American Heart Association recommends we work to keep our blood pressure below 120/80 (I'm currently right there - YAY!) I spoke about how it causes damage in much greater detail with Dr. Nirav H. Shah in episode 47. You can listen to that episode here: (If you don't see the player, visit Here are 3 blood Pressure Monitors available on Amazon. Really, there are dozens or hundreds of options. I have no experience with these three directly, but they're a good place to start your shopping. HoMedics Automatic Blood Pressure Monitor, Wrist* Blood Pressure Monitor Upper Arm, Mebak Automatic Digital BP Machine Cuffs for Home Use* OMRON Silver Blood Pressure Monitor, Upper Arm Cuff* Johnny Cash -- Hurt James talked about his experience listening to Johnny Cash's Hurt. (If you don't see the video, Stroke Recovery Time Frame There are still doctors and others who will tell a stroke survivor they have 6 months or 12 months of recovery and what they have at that point is all they'll ever get back James doctor told him he had just 12 weeks to recover. This is NONSENSE. As long as you live, you can still recover and regain function. Even years down the road survivors continue to recover. At four years post-stroke, I'm still getting finger control back. Recovery will be fastest in the early days, sure, but it continues to be possible with hard work for years and decades after stroke. Don't let anyone put an artificial cap on your recovery. Hack of the Week James talked about two things that help him with anxiety and depression. First, get exercise. Even if it's just a little bot. Get some exercise. Get moving as best you can. It helps with health, but more importantly it helps with clearing your head. Secondly, and in an oddly related way, is to try writing. That could be by hand, by keyboard, by voice, whatever. Writing is a powerful tool for not only enhancing your communication but also for helping you get stuff out of your head and calm your mind. So take a few minutes to exercise your body and to exercise your pen. Links (If you don't see any links, click here.) Where do we go from here? Connect with James through his Facebook page here. Buy James' Blue Swords novels on Amazon here. Subscribe to the Strokecast newsletter for monthly updates here. Don't get best…get better.

    Stroke Leaves a Woman "Trapped Within"

    Play Episode Listen Later Sep 12, 2021 63:49

      Click here for a machine-generated transcript.   Jo Ann Glim and her husband were enjoying the semi-retired lifestyle in their new, Florida home. They enjoyed day trips, volunteer activities, and other adventures. Jo Ann was starting a new temp gig at the Tropicana offices, and they were making all sorts of plans for the coming years .A blood vessel deep in Jo Ann's brain had other plans. It ruptured and damaged her Thalamus on her first day at a new temp job. Jo Ann would spend two weeks basically unconscious. With lots of work, determination, a a great team, she dove into her recovery. Twenty four years later, she joins us to talk about her journey, her writing, the risks of being a problem solver, and the things that helped along the way. Her book, Trapped Within: A True Story of Survival, Recovery, Love, and Hope* is available on Amazon. About Jo Ann Glim Jo Ann Glim was born in Chicago, Illinois to a military family and raised in Anacortes, Washington in the far reaches of the Pacific Northwest in a three-generational household. Even though the family was poor, she never knew it.  Poverty taught her life skills: self-sufficiency, creativity, and saving for a rainy day. Her childhood home was filled with love. Tragedy struck when she was fourteen and her mother passed away. Within three weeks, her grandparents were relocated to a nursing home in Illinois and she was taken in by her mother's sister. Everything she had known to be home was gone. ​After she finished school, Glim's career followed three paths: MEDIA - (as a disc jockey/copywriter) WSDM-FM Chicago, KMPX-FM San Francisco, and KIKI-AM Hawaii; and continued in COMMUNICATIONS - a forty-year freelance portfolio with credits including an award-winning column in fourteen northern Illinois newspapers; one-liners for nationally known comedians; monthly articles for Manatee County Florida's Chamber of Commerce Current magazine, to name a few. She took courses in BUSINESS MANAGEMENT - at a local college and after moving to the suburbs, began working for Kelly Services. Sixteen years later, she retired as an on-site Human Resources Manager responsible for the temporary needs of a Fortune 500 company. ​ She now lives in Florida with her husband, Bill, and their Scottish Terrier, Lucy. Her passions are writing, photography, and travel. She loves Chicago pizza, and is happiest travelling with her hubby, playing handbells, or on hiking trails with her camera and dog. Book Jo Ann sent me a copy of her book before we talked.  The book, Trapped Within: A True Story of Survival, Recovery, Love, and Hope*, chronicles her stroke and rehab experience. She gets deeper into her relationships with doctors, therapists, and her therapy roommate and shares fears, frustrations, and lessons learned along the way. Jo Ann writes with a crisp style that's easy to read. Her chapters are short. If you can read only a few pages without a nap, it's a nice choice. Or you can just read chunks of  it at one go. You can find Trapped Within on Amazon in paper or eBook versions. Check it out at* "Trapped Within": Book Trailer Elizabeth Kubler-Ross and the 5 Stages of Grief Kubler-Ross wrote about grieving and death.  Recovering from stroke is similar, except instead of grieving over the loss of another person, we are grieving for the loss of our prior selves. Getting through that process takes time, but it also helps us adapt to the new life we have after stroke. The 5 stages of grief are: Denial Anger Bargaining Depression Acceptance. If you're struggling with moving on with your life a neuropsychologist or other counselor can help you navigate this path. Hack of the Week Lainie Ishbia from Trend-Able, who I spoke with in Episode 136 suggests that if you struggle with fastening buttons on a shirt, you can get around that. Just sew (or have someone else sew) the shirt closed at the buttons and turn it into a pull over. That way, you can still wear those stylish button down shirts without spending hours dealing with fussy closures single-handedly. Another option for those shirts, if you're not ready to get them sewn up, is to get a button puller*. This is an inexpensive device that makes it easier to fasten buttons with one hand. I use mine most when I'm trying to put my dress shirts on a hanger. Either way, you now have 2 fewer reasons to not wear that nice shirt. Links Where do we go from here? Check out Jo Ann's website at And read more about her book at* Share this conversation with a friend by giving them the link Subscribe to the free monthly Strokecast Newsletter to stay up to date on episodes and community news Don't get best…get better

    From Locked in to Pageant Queen

    Play Episode Listen Later Sep 2, 2021 90:27

      Click here for a machine-generated transcript.   At 30 years old, social worker Jeri Ward was incredibly busy. Perhaps too busy. Having a stroke was the not even on her radar. But then again, is it ever? Multiple hospital visits and a failed thrombectomy later, she found herself completely paralyzed and unable to speak for months in a hospital bed. Scared, bored, and frustrated she would go on to recover, win the title of Mrs. Ohio International, and partner with the American Heart Association to raise awareness of stroke in the general population. Jeri spoke to me for over an hour in the days leading up to the Mrs. International. About Jeri Ward Jeri Ward lives and works in Ohio. She built a busy career as a social worker, Autism specialist, and volunteer. Jeri was always on the go, with one project after another. In the midst of that hectic schedule she nourished her passion of pageant life and lived it for decades. In 2018, Jeri was crowned Mrs. Ohio America. Later that year, Jeri barely survived a massive ischemic stroke. She was locked inside her own body in an ICU bed for months. Gradually, she recovered her speech and movement. And she rededicated herself to the cause of stroke awareness and advocacy. In 2021, Jeri returned to pageant life, winning the title of Mrs. Ohio International with a new platform of raising stroke awareness and advocating for survivors both at home and around the world. She started the Lemonade Project to help folks learn and practice appropriate self-care. Jeri currently works at the American Heart Association as a Development Director. Mrs. International Pageant A  lot of folks have preconceived notions about pageant winners, and often those notions are not true. Jeri is the fourth pageant winner I've had the pleasure meeting. Marsha Scmid was a guest on the show a couple years back after winning the title of Ms. Wheelchair USA. It was a stroke caused by a chiropractor that her eligible for that pageant. Ina previous job, I had the pleasure of working with Hilary Billings, a former Miss Nevada. I interviewed Hilary for my other podcast, 2-Minute Talk Tips. You can hear that conversation here. And I went to college with a woman who would go on to become Miss Montana. They have all been some of the smartest, hardest working people I know. Really incredible individuals. The Mrs. International pageant, as Jeri describes it, puts a premium on contestants' platforms, a I don't mean their shoes. This was a great match for Jeri who has turned her stroke into a cause -- to take every opportunity she can to help with stroke education and advocate for survivors. Jeri did an amazing job at the finals, coming in in third place. She chronicled her journey on Instagram Ohio Legislation Jeri channeled her career experience, her stroke advocacy work, and the drive she uses in pageant life to help the Ohio State legislature pass SB21, which updates protocols for EMS. The short version is that this law will require ambulances to take stroke patients to an appropriate hospital, rather than the closest hospital. As we know, time lost is brain lost, and moving folks from hospital to hospital costs time, money, and long-term disability This legislation will help change that in Ohio. Hack of the week Explain things to people simply. Jeri talks about the headphones she wears due to her sensory processing challenges. She'll mention briefly why she wears them in meetings at work. Disclosing and talking about disabilities is a challenging subject. Outside of our doctors, no one is entitled to know our medical history. Even then, there are limits. There are lots of very good reasons for minimizing disclosure given how wide-spread ableism is in this world. At the same time, there's something to be said for acknowledging the elephant in the room. The elephant is metaphor in this case. Imagine you are having a conversation with a few people at somebody's home. You are not circus or zoo folks. Then an elephant walks into the room and just sits there. And no one says anything. How can anyone focus on the main thrust of the conversation? A fraking elephant just walked into the room! In order for conversation to continue, someone needs to say something about the elephant. Pretending it's not there isn't going to work. Once the owner/roommate of the elephant says, "Oh, that's just Bob. He's cool. So, anyway…" You may still have a lot of questions about Bob, but you can put those aside from now and get back to a productive conversation. When folks mention "the elephant in the room," they are talking about something that is big, unexpected, and that folks might want to ignore, but can't. Acknowledging the elephant lets us get back on track. Sometimes, all we need to do is acknowledge our elephants. When Jeri puts in her earphones in a business meeting, is that an elephant worth acknowledging? Often, yes. Should it be? Probably not. But someone who isn't familiar with sensory processing challenges may be speaking, see someone put on headphones and assume they are being blatantly rude and ignoring them in an aggressive manner. By telling people what you need, such as when Jeri mentions why she uses them without going into detail, it lets the meeting get back on track without someone taking offense. On another note, this is why it's important, if you're comfortable doing so, to share your story. To normalize disability and the tools we use to make our world more accessible. Canes and headphones and rollators and splints and service dogs may be elephants today, but they don't have to be in the future. Links Where do we go from here? Follow Jeri on Instagram at  MrsOhioIntl2021 Share this episode with someone you know by giving them the link Subscribe to the free, monthly Strokecast newsletter at Don't get best…get better

    Brain Remapping After Stroke

    Play Episode Listen Later Aug 23, 2021 53:34

      Click here for a machine-generated transcript.   After a stroke, do nearby nerve cells take over the function of dead nerve cells as folks regain function? That's what we would expect, but new research from Dr. William Zeiger suggests that is not the case. After giving very specific strokes to mice, they used advanced imaging techniques to understand just what was happening in those little mouse brains. It was not what they expected. We talk about that research, brain remapping after stroke, the importance of constraint induced therapy, and more in this episode. Bio Dr. Zeiger is a physician scientist in the Department of Neurology at UCLA. Clinically, Dr. Zeiger works as a neurologist specializing in movement disorders, particularly Parkinson disease and atypical parkinsonian disorders. Dr. Zeiger also runs a neuroscience research lab focused on investigating cortical circuit dysfunction in neurological disorders.   The Study You can read the paper Dr. Zeiger and his team produced here: You can read an article about the study here. It's how I learned about the research and is a little more accessible: Basically, researchers gave mice strokes in a specific part of the brain to stop a single whisker from working. They use a technology called 2-Photon Microscopy to examine the brains of these mice. They wanted to see if other nerves would simple take on responsibility for that whisker. That did not happen. Then they removed all the other whiskers from the mice. Once they did that, mice began recovering function in that remaining, stroke affected whisker. Essentially, it was a form on Constraint Induced Therapy for the mice. This gives us some interesting information about neuroplasticity. It's hard to extrapolate to humans, but it does point toward the needs for ongoing research into just what is happening during brain recovery. The Neuro Nerds The Neuro Nerds is one of my favorite podcasts. Host Joe Borges was a guest on this show back in episode 65. This week, I was Joe's guest on The Neuro Nerds. We talked stroke stories, nerd stuff, Doctor Who, podcasting, the brain injury community, and much more. You can listen in your favorite podcast app or right here by pressing play. Hack of the Week One of the biggest risks for stroke survivors and Parkinson's Disease patients is falls. Falling is of course even more likely at night because it's dark and we're tired. And many of those late night falls happen during late night trips to the bathroom. If you're a fall risk, one solution is a bedside commode or a urinal jug (sorry that doesn't help you, ladies). It may not be pretty or something you want in your bedroom, but if it means you don't fall and pick up another brain injury or other injury, it's probably worth it. Links Where do we go from here? Check out ZeigerLabs to learn more about the research Dr. Zeiger and his team are doing. Share this episode with someone you know by giving them the link Subscribe to the free monthly Strokecast email newsletter at Don't get best…get better

    Can you treat depression with Tai Chi?

    Play Episode Listen Later Aug 10, 2021 45:58

    Click here for a machine generated transcript Recent research shows that doing Tai Chi after a stroke may reduce depression. We talk with the author of the study in this episode. It's a nice complement to our previous episode where we talked about the nature of Post Stroke Depression. Depression is an insidious illness that undermines recovery, healing, relationships and the joy we could find in life. Traditional treatments may include talk therapy and/or medication. There are also a host of new treatments being studied. And there's a bunch of snake oil or scam treatments out there, too. Plus there's a whole bunch of stuff in between. Dr. Ruth Taylor-Piliae has been working in the stroke field and with Tai Chi for a long time. Her research is a promising starting point for exploring the potential of ancient Tai Chi practices to treat Post Stroke Depression. Bio From the University of Arizona College of Nursing Dr. Ruth Taylor-Piliae is an Associate Professor in the College of Nursing at the University of Arizona. The goal of her research is to increase physical activity among older adults with heart disease and stroke through the implementation of innovative interventions such as Tai Chi, to improve physical functioning, reduce fall rates and improve quality of life. Dr. Taylor-Piliae received her B.S.N. from California State University Fresno, her M.N. from the Chinese University of Hong Kong, and her Ph.D. from the University of California San Francisco. She completed a 2-year post-doctoral fellowship in cardiovascular epidemiology and prevention at Stanford University. Dr. Taylor-Piliae has received funding as a principal investigator from the American Heart Association/American Stroke Association, Hospital Authority of Hong Kong, National Institute of Health, and the Robert Wood Johnson Foundation. She reviews for professional journals and has had over 70 peer-reviewed manuscripts published in top-tiered journals both within nursing and inter-professional journals. She is highly cited for her work (citations>3600, h-index=30, i10-index=54). For more details, see Should you do Tai Chi? Maybe. Ask your doctor. Before engaging in any new exercise program or treatment, ask your doctor to make sure you can do it safely. I am not a doctor. I say it all the time. I'm just a marketing guy who knows way more about neurology and neuroplasticity than any marketing should know. That said, let's run Tai Chi through my snake oil filter. Is Tai Chi safe? For the most part, yes. Of course if you have balance or movement challenges, an adaptive for may be more appropriate. Take steps to make sure you don't fall. Falling is probably the biggest risk, but it should be an easy one to mitigate, Is it expensive? Generally, it's probably not that costly. It's not going to cost you tens of thousands of dollars. With some searching, you can find free or low cost options. Will it interfere with traditional therapies? It doesn't have to. If you have the time and energy, you can do Tai Chi in addition to PT, OT, Speech, or Mental Health therapy. If you decide to do Tai Chi as part of your recovery, this random guy on the internet suggests to do it in addition to, rather than instead of regular therapy. Will it actually help your recovery? Maybe. As Ruth and I discussed, her research shows it does reduce Post Stroke Depression. Granted, it's a small study. There are a lot of things survivors are encouraged to do to help recovery. Move. Exercise. Practice patterns. Learn stuff. Connect with other people. Find things you enjoy doing and do them. Those are just a few, but Tai Chi does support those. Final analysis Especially if you enjoy doing Tai Chi and your doctor says its safe, then go for it. There appears to be a potential benefit and no significant downside. That's a win by my math. Paralympic Games The 2020 Paralympic Games will take place in Tokyo between August 24th and September 5. You can learn more about the games from the main site here. You can also learn more about the US team of 200+ athletes here. Check out their stories. Try to catch some of the games on TV or online. These are athletes who are competing with disabilities and showing what can be possible. Perhaps there's a sport you would like to become more involved in. These athletes may show you a way. Check out the athletes' stories and follow your favorites on social media. What an you learn from them that you can apply to your own life? And maybe there's not a life-changing takeaway other than, "That was awesome!" And you know what? That's okay, too. Hack of the Week You don't need specialized grippers for jars and containers. Simple rubber band can make handling things with weak hands much simpler. They're cheap and come in a variety of sizes. Here's a listing on Amazon.* Links Where do we go from here? Read about Dr. Ruth Taylor-Piliae's work here. Share this episode with someone you know by giving them the link Subscribe to the free, monthly Strokecast newsletter at Don't get best…get better

    Ep 137 - Get the Arm Back with Vagus Nerve Stimulation

    Play Episode Listen Later Aug 3, 2021 51:20

    Click here for a machine generated transcript A lot of the attention in stroke research is paid to the acute phase. How can we treat a stroke in the ER? What can we do so it doesn't get worse? How can we prevent strokes from happening? What can we do in inpatient rehab to help folks get better? Those are all important things,  and the stunning innovations happening around us are amazing, newsworthy, and truly impacting people's lives in a meaningful way. But there's not as much attention given to chronic stroke. Sure, there's some. There are people working really hard to help stroke survivors recover even years after stroke. But not as much makes it into the news. That's one reason I was interested in Dr. Jesse Dawson's work at the University of Glasgow. The recently published a study in the Lancet about using Vagus Nerve Stimulation to drive recovery in patients years after stroke. And their procedure looks promising. Bio Dr. Jesse Dawson is a Professor of Stroke Medicine and Consultant Physician in the Queen Elizabeth University Hospital. His research portfolio includes prevention and rehabilitation clinical trials in stroke survivors. His main interest is in improving the long-term outcome after stroke. Dr. Dawson holds a BHF/Stroke Association programme grant, HTA NIHR funding and NIH funding and runs a large outcomes adjudication system for multi-national stroke trials. He is the NHS Research Scotland lead for stroke research and sits on the editorial board of Stroke. Dr. Dawson is currently researching the role of xanthine oxidase inhibition as a novel preventative treatment after stroke. This is the focus of a UK wide clinical trial, funded by a programme grant from the BHF/Stroke Association. He is also studying novel treatments for upper limb weakness after stroke, including vagus nerve stimulation and robotic therapy. These studies included a large NIHR funded study, funding from Chest Heart Stroke Scotland and a collaboration with industry.  Dr. Dawson is the Medical Outcomes Manager for the endpoint committee of the large NIH funded CLEAR III trial, the NIH funded MISTIE III study, the European Union FP-7 funded EuroHYP study and the international SITSOPEN collaboration. This involves review of all trial endpoints and co-ordination of the endpoint adjudication process for these large phase III studies. He supervises several PhD and MD students, including students with competitive government and charitable funded fellowships. He co-directs a large MSc programme in Clinical Pharmacology and is Director of the Vertical Theme for Clinical Pharmacology and Therapeutics for the MBChB programme. He is a regular MRCP PACES examiner and external higher degree examiner for several UK univeristies. The Research This is a fascinating study because even though they are stimulating the Vagus nerve, they are not actually treating it. Instead they are using it as a messenger to the brain to say, "Wake up! It's time to learn something." Essentially, it's trying to get the brains attention so traditional Occupational and Physical Therapy can work. And it seems to be working. It will be interesting to see if in future studies they can get similar results with Speech Therapy. The other important take away here is that this work with chronic stroke survivors -- folks who had strokes years ago -- even in the control group. Granted the experimental group that got the Vagus Nerve Stimulation got better results. The point is, though, that intense physical and occupational therapy gets results even years after as stroke, demonstrating once again that the 6 or 12 month caps on recovery are complete and utter nonsense. Hack of the Week Pick a small thing to focus on. Perhaps it's a small task. Or part of a small task. Or maybe it's a new goal you haven't done before but it seems within reach. Do that. Focus on that. Achieve that. The look for more small challenges. Lots of wins on small challenges adds up to big success in the long run. Links Where do we go from here? Lear more about this study here. Share this episode with someone you know by giving them the link Subscribe to the free, monthly Strokecast newsletter at Don't get best…get better.

    Understanding Post Stroke Depression

    Play Episode Listen Later Aug 2, 2021 48:06

      Click here for a macine generated transcript   Surviving a stroke is not the end of a medical issue. It's the start of a new journey, with new challenges. Major depression is often one of those challenges. It interferes with recovery, rehab, adjusting to a new life, and maintaining relationships. In short, it's big problem. And it's pretty common. According to new research by Dr. Laura Stein from the Icahn School of medicine, depression after stroke is twice as likely to occur as depression after heart attack. There's something unique about stroke that leads to depression. On top of that, if a person lived with Generalized Anxiety Disorder before stroke, they are 1.7 x as likely to experience Major Depression after stroke. In this conversation, Dr. Laura Stein talk about her research and what survivors, caregivers, and medical practitioners need to know. Bio Laura K. Stein, MD, MPH is an Assistant Professor of Neurology at the Icahn School of Medicine at Mount Sinai and attending physician at the Mount Sinai and Mount Sinai Queens Stroke Centers. She is board certified in Neurology and Vascular Neurology by the American Board of Psychiatry and Neurology. Dr. Stein received a BA from Amherst College and her MD and MPH from the Icahn School of Medicine at Mount Sinai. She completed her internship, neurology residency, and vascular neurology fellowship at Mount Sinai.  Dr. Stein's interests are in stroke clinical care, stroke outcomes research, and medical education. She is the Neurology Residency Associate Program Director and precepts first year medical students in the Art and Science of Medicine preclinical skills course. Dr. Stein received the Department of Neurology Resident Class of 2020 Award of Appreciation for Dedication & Commitment Towards Excellence in Mentorship and 2020 Institute for Medical Education Excellence in Teaching Award.  The Research Dr. Stein's research was part of the American Stroke Association's virtual International Stroke Conference. You can read the paper here. You can read the article where I first encountered her work here. The approach of looking at depression after heart attack vs looking at depression after stroke is an interesting one. It's a nice way of controlling for other potential causes. The research looked at Medicare recipients, Medicare is a US government health insurance program, generally for folks 65 and older. It lets researchers draw from a rich collection of data. There are two significant tradeoffs, of course. First, it's restricted to the US so there's no international representation in the study. Obviously, depending on the research question in particular, that may or may not be an issue. Second, it's restricted to folks 65 and older. Can we say that the results of this study apply to younger stroke survivors? Maybe? Probably? We don't know. And this study was not designed to answer that question. I'd say it does get us closer, though, and it opens up an opportunity to do further research that asks different but related questions. That's what good studies do. The answer specific question with solid evidence and clear analysis. And the result can introduce new questions for researchers to explore in different studies. In the meantime, it's likely safe to say, that regardless of age, stroke survivors are probably more likely to experience depression, and the community needs to be vigilant for the signs of depression and seek treatment accordingly. Symptoms of Major Depression Diagnosing depression involves identifying symptoms from a couple lists. To "earn" a depression diagnosis, a patient needs 5 symptoms from list 1 and all 4 from list 2. They are: List 1 (Pick 5 or more) Depressed Mood (most days) Loss of Interest or pleasure Weight loss or gain Insomnia or hypersomnia (nearly every day) Psychomotor agitation or limitation Fatigue (nearly every day) Feelings worthless or experiencing inappropriate guilt Decreased concentration (nearly everyday) Thoughts of death or suicide List 2 (All 4) Symptoms cause significant distress or social/professional impairment Symptoms not attributable to a substance or medical condition Symptoms not explained by another disorder No history of manic episodes You can read more details about the symptoms here. You can probably see one of the issues. Many of those symptoms may be directly attributed to the disabilities and brain damage of the stroke without it being Major Depression. That's why it's important to work with a medical professional to tease them apart. Symptoms of Generalized Anxiety Disorder Generalized Anxiety Disorder is about more than feeling nervous. It's more complicated and severe. The National Institute of Mental Health describes it this way: People with generalized anxiety disorder (GAD) display excessive anxiety or worry, most days for at least 6 months, about a number of things such as personal health, work, social interactions, and everyday routine life circumstances. The fear and anxiety can cause significant problems in areas of their life, such as social interactions, school, and work. Generalized anxiety disorder symptoms include: Feeling restless, wound-up, or on-edge Being easily fatigued Having difficulty concentrating; mind going blank Being irritable Having muscle tension Difficulty controlling feelings of worry Having sleep problems, such as difficulty falling or staying asleep, restlessness, or unsatisfying sleep You can read more about the condition here. Neuropsychology While most psychologists and psychiatrists can help stroke survivors and others with depression and other conditions, there is a specialty that may be even more helpful -- neuropsychology. A while back, I talked with Dr. Karen Sullivan from I Care For Your Brain. She wrote the "Interactive Stroke Recovery Guide."*  You can listen to that conversation or learn more at A neuropsychologist has additional, specialized training to work specifically with folks who have brain injuries. They dive deep into the details of the injury to provide the best customized treatment plan, leveraging expertise that generalists don't have. They work with folks with a wide array of functionality and challenges. FLAME vs FOCUS As long as we are talking about depression, we should also talk about antidepressants a little -- specifically SSRIs and how the relate to stroke. In 2011, the FLAME study was published in the Lancet. In short, it demonstrated that stroke survivors who took Prozac (Fluoxetine) experienced stronger motor recovery. Many hospitals saw those results and began putting more stroke survivors on Prozac because, well, why not? If the patient tolerates it well, and it can help folks work better, it's probably a good idea. And if it reduces or prevent post stroke depression (or other depression) that's a solid win. I talked with Dr. Nirav Shah about this back in November of 2018. You can listen to that episode here. That's how I started on an SSRI in my stay. They originally tried Prozac with me, but I had a not great reaction to it. It apparently gave me an anxiety attack. So we quickly stopped that (thank you, Xanax, I think). We talked about it some more and tried again with a different SSRI -- Lexapro (Escitalopram) because I had tolerated it well during a tough time some years earlier. Cheap, no negative side effects, and potentially helpful is win. A month after my interview with Nirav, and a year and a half after my stroke, the FOCUS study came out, attempting to duplicate the results of the FLAME study on a bigger scale. It failed. The scientific consensus now is that SSRIs do not help with motor recovery. They do still help with depression. The hospital no longer recommends SSRIs as part of the motor recovery protocol. So what does that mean for folks like me? I asked my doctor last year if that meant I should stop taking them. We talked about it and she explained I could certainly stop if I wanted to. "But, dude -- it's 2020." And she had a valid point. (Okay, maybe I paraphrased that) And that's why Escitalopram still has a place in my pill organizer. As always, everyone's stroke and circumstances will vary, so talk to your doctor before making any changes to your medication. Hack of the Week Get a dog. A dog can be helpful after stroke, whether it's a service dog or simply a companion animal. When you have a dog, you have a responsibility to take care of it. You have to feed it, walk it, groom it, and give it cuddles. Sometimes that may be reason enough to get out of bed and get moving for the day. Links Where do we go from here? If you think there's a chance you might be experiencing depression, talk to your medical team Share this episode with someone you know with the link Subscribe to the free, monthly Strokecast email newsletter at Don't get best…get better.

    Ep 137 - Get the Arm Back with Vagus Nerve Stimulation

    Play Episode Listen Later Jul 15, 2021 51:20

    A lot of the attention in stroke research is paid to the acute phase. How can we treat a stroke in the ER? What can we do so it doesn't get worse? How can we prevent strokes from happening? What can we do in inpatient rehab to help folks get better? Those are all important things,  and the stunning innovations happening around us are amazing, newsworthy, and truly impacting people's lives in a meaningful way. But there's not as much attention given to chronic stroke. Sure, there's some. There are people working really hard to help stroke survivors recover even years after stroke. But not as much makes it into the news. That's one reason I was interested in Dr. Jesse Dawson's work at the University of Glasgow. The recently published a study in the Lancet about using Vagus Nerve Stimulation to drive recovery in patients years after stroke. And their procedure looks promising. Bio Dr. Jesse Dawson is a Professor of Stroke Medicine and Consultant Physician in the Queen Elizabeth University Hospital. His research portfolio includes prevention and rehabilitation clinical trials in stroke survivors. His main interest is in improving the long-term outcome after stroke. Dr. Dawson holds a BHF/Stroke Association programme grant, HTA NIHR funding and NIH funding and runs a large outcomes adjudication system for multi-national stroke trials. He is the NHS Research Scotland lead for stroke research and sits on the editorial board of Stroke. Dr. Dawson is currently researching the role of xanthine oxidase inhibition as a novel preventative treatment after stroke. This is the focus of a UK wide clinical trial, funded by a programme grant from the BHF/Stroke Association. He is also studying novel treatments for upper limb weakness after stroke, including vagus nerve stimulation and robotic therapy. These studies included a large NIHR funded study, funding from Chest Heart Stroke Scotland and a collaboration with industry.  Dr. Dawson is the Medical Outcomes Manager for the endpoint committee of the large NIH funded CLEAR III trial, the NIH funded MISTIE III study, the European Union FP-7 funded EuroHYP study and the international SITSOPEN collaboration. This involves review of all trial endpoints and co-ordination of the endpoint adjudication process for these large phase III studies. He supervises several PhD and MD students, including students with competitive government and charitable funded fellowships. He co-directs a large MSc programme in Clinical Pharmacology and is Director of the Vertical Theme for Clinical Pharmacology and Therapeutics for the MBChB programme. He is a regular MRCP PACES examiner and external higher degree examiner for several UK univeristies. The Research This is a fascinating study because even though they are stimulating the Vagus nerve, they are not actually treating it. Instead they are using it as a messenger to the brain to say, “Wake up! It's time to learn something.” Essentially, it's trying to get the brains attention so traditional Occupational and Physical Therapy can work. And it seems to be working. It will be interesting to see if in future studies they can get similar results with Speech Therapy. The other important take away here is that this work with chronic stroke survivors — folks who had strokes years ago — even in the control group. Granted the experimental group that got the Vagus Nerve Stimulation got better results. The point is, though, that intense physical and occupational therapy gets results even years after as stroke, demonstrating once again that the 6 or 12 month caps on recovery are complete and utter nonsense. Hack of the Week Pick a small thing to focus on. Perhaps it's a small task. Or part of a small task. Or maybe it's a new goal you haven't done before but it seems within reach. Do that. Focus on that. Achieve that. The look for more small challenges. Lots of wins on small challenges adds up to big success in the long run. Links Dr. Jesse Dawson at the University of Glasgow Dr. Dawson on Google Scholar Dr. Dawson on Neuro News Vagus nerve stimulation paired with rehabilitation for upper limb motor function after ischaemic stroke Where do we go from here? Lear more about this study here. Share this episode with someone you know by giving them the link Subscribe to the free, monthly Strokecast newsletter at Don't get best…get better. Strokecast is the stroke podcast where a Gen X stroke survivor explores rehab, recovery, the frontiers of neuroscience and one-handed banana peeling by helping stroke survivors, caregivers, medical providers and stroke industry affiliates connect and share their stories. *Affiliate links

    Ep 136 -- AFO Shoes Don't have to be Ugly

    Play Episode Listen Later Jul 6, 2021 51:09

      Click here for a machine-generated transcript   AFOs (Ankle-Foot Orthotics) offer many stroke survivors freedom by letting us safely walk. They lift our affected feet as we take our steps so our toes don't drag on the ground and trip us. They give us the mobility that foot drop threatens to take. But they're not usually very attractive. And finding shoes that work with them is a challenge because they need to be bigger and wider so we can squeeze a weak foot and brace into the show. A common question I hear from survivors is, "Where can I get shoes that aren't so ugly?" Well, I don't always have great answers to that, but Lainie Ishbia does. Laine runs the Trend-Able blog and is one half of the emBRACE IT podcast. She's an expert on finding and making accessible fashion, and she joins us this week to share her story. Bio Lainie Ishbia is a blogger and podcaster helping people with invisible and visible disabilities look good and feel good. Her website at offers tips and strategies for literally and metaphorically  balancing fashion and physical needs. She develops tips for find accessible clothing options. If you can't find it, she offers tips on modifying clothes to make them work. Lainie lives with Charcot-Marie-Tooth disease. It's a hereditary, degenerative nerve condition that today impacts her hands and feet. She began wearing AFOs on each foot at age 30 and mourned the loss of sleek heels at the time. Since then, she's turned around her perspective, leveraged skills acquired through a career in social work and now helps folks with disabilities live their best lives with confidence, self esteem, and passion. You can find more details of Lainie's story here. Disability and Lifestyle Living with disability (visible or not) is a lifestyle. It shapes what we wear, the careers we pursue if able, and the social activities we pursue. And we learn so much along the way. I often say I now know way more about neurology and neuroplasticity than any marketing guy should ever know. And now I know the foot bed in a shoe may be removal. And I know there is a thing in a shoe called a foot bed. Lainie's fashion blog goes well beyond just the particulars of clothing and includes tips and strategies on how to navigate the world, like 5 Cocktail Survival Tips for Unsteady Girls or A Girlfriend's Guide to Dating with an Invisible Disability. Disability Pride Month July is Disability Pride Month. I'm a little fuzzy on the origins and scope of the celebration, but my understanding is it started in 2015 in New York City to recognize the importance of the Americans with Disabilities Act. How ought we celebrate it in 2021? It will depend largely on your personal comfort level. Don't let anyone tell you you're doing it wrong. The first thing is to recognize, accept, and believe with all your heart (original, mechanical, acquired from someone else, etc.) that there is no shame in being disabled. Say it out loud if you can. There is no shame in disability. We are people with lives to live. Sure, those lives may be different from the lives of the temporarily abled, but they are no less valuable. Second, you can celebrate disability pride by simply being visible. By being a part of the world, participating in it and taking up space in it just like any temporarily-abled person. Don't let people pretend we don't exist. Don't hide from people just because our presence makes them uncomfortable. Third, when someone talks about diversity and inclusion, make sure they are talking about disability in that, too. A diverse organization with no disabled people is not a diverse organization. Fourth, share your story with folks. You don't have to share it with the world in a podcast, blog or YouTube channel if you don't want to. But you can share it with people in your community and family.  The woman who hosted the graduation party Lainie talked about in our interview (probably) wasn't trying to keep disabled people from having a good time at the party. It's likely the challenges Lainie faced never even occurred to her. The more we tell our stories, the more people will think about accessibility. That's just a few ideas to consider. Ultimately, you can celebrate in the manner that feels most comfortable to you. If that means you walk, roll, or hobble down the street in a parade or protest, great. If it means all you can do is remind yourself there is no shame in disability, that's great, too. Disabled is not a bad word. There is no shame in it. Have a fantastic Disability Pride Month! Hack of the Week. Lainie suggests picking up (no pun intended) mini-lint-rollers, like these.* These have sticky sheets used for getting lint or pet hair off your clothes. If you struggle with manual dexterity, though, they can also be great for picking up change at a store counter. They can also be a nice solution when that pill box spills on the floor and Plaxix and Lisinopril go everywhere! "But, Bill, why wouldn't I just pick things up with my unaffected hand?" There are a few reasons. First, a toned or spastic hand can probably still hold a lint roller, and if you have some shoulder control, you can move it. One of the most important tools in recovery is to use your affected limb as much as possible in practical way. Just because it's no longer fully connected to your brain is no reason not to make it work. Second, especially when I need to get something on the floor, I often need to use my unaffected arm to balance or stabilize myself. If I get in an awkward position and my unaffected hand is busy, it's much more difficult to not fall. Everything in life can be therapy! Links Where do we go from here? Check out the Trend-Able website here and the emBRACE It podcast in your favorite podcast app. The first issue of the Strokecast Newsletter goes out this week. If you haven't already signed up you can do so at Share this episode with an Occupational Therapist or someone else you care about by giving them the link Don't get best…get better.

    Ep 135 - Your Pet Brain

    Play Episode Listen Later Jun 19, 2021 60:19

      Click here for a machine-generated transcript   "Your Pet Brain" is a big adorable, plush brain with giant eyes for those of us who could use a spare one. And my girlfriend wanted one. We could both use some extra neurons. As her birthday approached I decided to order one. Brain shipped in his box (yes, I'm already anthropomorphizing and gendering him). Cathy went downstairs to take care of something and the saw the distinctive box. She felt a wave of mild envy, and thought, "Aww, someone else got a brain."  Then she took a closer look at the box and saw my name on it. She scooped it up, brought it up stairs and giddily shuffled through our apartment to show me. She was thrilled! I briefly toyed with the idea of making her wait another day until her birthday, but that seemed unfair since the box made it clear what it was.  And I think brain appreciated it too, because the box wasn't super comfortable. This week's conversation is wide ranging. While it all starts with how a delightful, big, plush brain can help and empower folks with physical brain damage or psychological it conditions It goes deeper than that. We talk about the importance of play, emotional education, the nature of the brain, the mind and soul, and outsourced manufacturing strategies. Ultimately, it's about how to human. Anyway, our pet brain is now named Brian and I'm delighted by that combination of wordplay and mundanaity. He's sitting on the couch next to my desk as I type this thinking brainy thoughts and snacking on smart food. Bio Artist, adventurer, neuro-hobbyist and Humanity's #1 fan, Engagement Art Producer Aydika James creates things that make the world a better place. (She also makes a killer cocktail.) With global projects ranging from The Kodiak Queen to, to wacky ride-able “art cars”, to private legacy sculptures that tell the story of someone's life, Aydika is fascinated by how art, play and “edu-tainment” can be used to unite crowds around a shared experience that stimulates widespread change. A firm believer that any vision can be achieved when we keep asking the question, “How do you paint with people?”... Her wish is to see a world where each person is supported in seeing, being and celebrating their own unique gifts, so we may astound ourselves with how profoundly beautiful we can make this planet, and our experience on it together. Miles the Traveling Penguin Years ago, I had a job that involved travelling 80-12 nights a year across the US. I did really enjoy it. My most frequent travelling companions was Miles, the traveling penguin. He maintained a blog of his travel photos for many years. He was beginning to switch to Instagram just before COVID-19 closed everything. You can see his old adventures here. Fluffy Photo Shoot I mentioned the JoCo Cruise while talking with Aydika. This is the fluffy friends group photo from March 2020. It's all in my Head One of the themes I come back to time and again is the idea that there is nothing wrong with my arm, and there is nothing wrong with my leg, It's literally all in my head. And it is. Because that's where my injury happened. That's where the damage is  -- right near the middle cerebral artery on the right side. When most folks say, "It's all in your head!" they're saying it derisively. They're saying there's nothing wrong and that you're just thinking wrong. They're saying it's not real. “Tell me one last thing,” said Harry. “Is this real? Or has this been happening inside my head?” Dumbledore beamed at him, and his voice sounded loud and strong in Harry's ears even though the bright mist was descending again, obscuring his figure. “Of course it is happening inside your head, Harry, but why on earth should that mean that it is not real?” Harry Potter and the Deathly Hallows The things that happen in our head are our reality. They're the only reality we have. The real world is just light waves/particles, sound waves disturbing the air, and pressure on our skin that sends signals to our brain. Our brain is where that raw data gets turned into our reality. It's where those raw impulses become our experience of the world. It's where we assign meaning to the waves, particles, and impulses. As stroke survivors, we know this better than most folks. Mental health, physical health, and spiritual health have fuzzy lines between them, at best. In reality, they are much closer to being the same thing than many folks realize. How we move in the world is all dependent on how our brains process all that incoming data and compares it to the meaning it assigned to previous rounds of incoming data. It is a simultaneously scary and empowering thought. Hack of the Week Find something funny everyday. That doesn't mean you have to tell jokes or be funny. Look around you in your home, in your work, in your social media, in your hospital room, wherever you are, Just try to find one thing that can make you smile, chuckle, or laugh every day, Because when you can laugh, you can learn. Our world can seem absurd at times because it is. Acknowledge that. If you can find one funny thing a day, that can help tremendously. Links Where do we go from here? To learn more about Brain, visit Share and discuss this episode with a friend by giving them the link The Strokecast newsletter launches in July. Subscribe for free at Don't get best…get better. Brian the brain relaxes with a snack

    Ep 134 - Sex Disparities in Stroke Research

    Play Episode Listen Later Jun 12, 2021 46:47

      Click here for a machine generated transcript We know that fast treatment is critical to surviving a stroke and reducing long-term disability. We know that there are a lot of studies that look at treatments that work and don't work. We know that the results of those studies will inform ER procedures and major spending projects at hospitals around the world. We know that men and women are biologically identical and that treatment for one sex will be just as effective on the other sex, right? RIGHT?! Okay. Maybe we don't know that because it's not true. So how do sex differences impact the efficacy or safety of stroke treatments? Well, we don't really know that, either. Because it turns out women are underrepresented in acute stroke research studies by 6 - 20 percentage point. Brent Strong and Julia Pudar published a meta-analysis of more than 100 stroke research studies this spring. And they published in in JAMA Neurology, which is really impressive, especially since they are still students. Bent and I talk about this research and why it matters in this week's episode. Bio Brent Strong is a recent graduate of Michigan State University where he earned a Bachelor of Science in physiology. As an undergraduate, he collaborated with Dr. Mathew Reeves to study issues in stroke medicine such as biases in clinical trials, sex disparities in treatment, and post-stroke depression. Brent will be attending graduate school in statistics at the University of Glasgow in the fall, where he hopes to continue his research on stroke. Hack of the Week The pump bottles that Kristen and Ruth recommended for shampoo and other bath products are great, but they're not the only solution. amzn_assoc_tracking_id = "currentlybill-20"; amzn_assoc_ad_mode = "manual"; amzn_assoc_ad_type = "smart"; amzn_assoc_marketplace = "amazon"; amzn_assoc_region = "US"; amzn_assoc_design = "enhanced_links"; amzn_assoc_asins = "B00B8XWI7G"; amzn_assoc_placement = "adunit"; amzn_assoc_linkid = "023f705ed65208debe4d79a043d45dde"; //* If you're using a shower chair in the shower, you can place a nonfunctioning limb on your lap and then apply your shampoo to that arm. Then put down the bottle, and scoop up the bath substances with your un affected arm. If you're further along in your recovery and standing up, hopefully you have some arm use back. Now you can do the same thing, but instead of putting your arm on your lap (since you don't have a lap while standing), bend your arm to get your forearm slightly horizontal. Or let the tone and spasticity do it for you. Then pour the shampoo on your forearm, put down the bottle, and scoop it to elsewhere on your body. It's a great way to get clean and get some bonus exercise in. Like Minded I'm thrilled to announce a new sponsor this week -- the Like Minded program by Jane Connely. Like Minded is a membership program that offers online classes, workshops and support groups for stroke survivors. There's an impressive list of presenters in the community, including Physical Therapists, Occupational Therapists, Speech Language Pathologists, Fitness Experts and Survivors. Many of the instructors have been guests in the Strokecast. You can find those interviews here. Membership in Like Minded includes a subscription to NeuroFitVR. This program uses Virtual Reality to help stroke survivors experiencing cognitive challenges. Membership costs just $45 a month and you can save 20% off on your first month when you use the promo code Strokecast. You can learn more and sign up if you so choose here: Links Where do we go from here? Check out the study here Subscribe to the Free Strokecast email newsletter launching in July at Share this episode in a text message or elsewhere with the link Don't get best…get better

    Ep 133 - 4th Strokeaversary

    Play Episode Listen Later Jun 5, 2021 21:26

      Click here for a Machine Generated Transcript   It's been 4 years since my stroke. It feels like 4 months. It's a good time to reflect on the experience. The most important piece is that I'm still recovering. Within the past 6 months I've gotten more independent finger control back. That may not seem like much, but the key point is that recovery can continue for years.  Anyone who says recovery stops at 6 or 12 months is spewing nonsense. Celebration I choose to recognize this date. Maybe next year I should arrange a full party. It's not a celebration of having a stroke, though. It's a celebration of surviving a stroke. It's a celebration of that new birthday. That day could have gone so much worse than it did. I'm grateful to still be here, alive and kicking (if off balance). Life is short. I may have only another 200 years to live, and I've got a lot of stuff to do in that time. My partner has a harder time with it. She describes that day as the worst in her life. Her experience was very different and traumatizing in a different way. See it's one thing to face your own mortality. It's another to face your partner's mortality. She had a lot more to stress about and worry about on that day than I did. All I needed to do was lay there, not  dies, and visualize tine spaceships in my veins shooting laser beams at the clot. So I temper my enthusiasm because it's not fair to make her relive that while I come out positive about my new direction. Still, it is important to commemorate it. But everyone will have a different reaction to their own or a loved one's Strokeaversary. It was still a good day to reveal my tattoo to the world. You can see pictures and read all about that at Going Forward I've got a bunch of plans I'm working on for the next year I want to write a book (making some progress there) I'm launching the Strokecast newsletter in July I plan to start PT again this summer I want start doing more talks and presentations to share lessons from stroke and the power of yet …and there's probably a dozen more things on my list, too. But I'll get there because I'm still here. Hack of the Week Use larger plates or bowls to carry things from the microwave. A lot of food containers, TV dinners, chicken pot pies, and craptacular pizza that comes from the microwave comes in flimsy containers. They're meant to be carried with two hands or the collapse under their own weight. To solve the problem, I just stick that whole container on a plate to carry it somewhere. I can then safely manage it with one hand. With soup or cereal, I'll often put that bowl into a larger bowl to also make it easier to handle with less sloshing. It means there are a couple more dishes to do, but that easier than getting microwave chicken masala out of the carpet Where do we go from here? Visit to see my tattoo and read the story. Subscribe to the free Strokecast email newsletter at Share this episode with someone you know by giving them the link Don't get best…get better.

    Ep 132 - AHORA with Dr. Remle Crowe

    Play Episode Listen Later May 27, 2021 63:27

      Click here for a machine generated transcript. BEFAST is the pneumonic device English speakers can use to recognize most strokes. Balance, Eyes, Face, Arms, Speech, Time to call an ambulance. But what if you speak Spanish instead of English? BE FAST doesn't directly translate well. So how can you recognize a stroke? PhD Research Scientist and EMS expert Dr. Remle Crowe and two of her colleagues worked on this problem over the past year. They came up with the Spanish pneumonic AHORA. Ahora translates to Now which captures the same urgency. In this episode we talk about the evolution of the pneumonic, the ethnic disparities in stroke in the US, the EMS system in Mexico, and how we can use data to improve patient outcomes. Oh, and tacos. Tacos are very important. Bio Dr. Remle Crowe is an expert in EMS research and quality improvement. From truck clutches to clinical care, she has shown how research and improvement science work to solve problems across fields. Prior to earning a PhD in Epidemiology, her EMS career began with the Red Cross in Mexico City as a volunteer EMT. She has authored numerous peer-reviewed publications related to prehospital care and the EMS workforce. Now, as a research scientist with ESO, Dr. Crowe routinely uses EMS data to improve community health and safety. AHORA Means Now Here is the stroke warning pneumonic device in Spanish. Download it and share it far and wide. Let's look at a translation. And, of course, here is the BE FAST messaging for English speakers. Both sets of symptoms look for the same thing. The AHORA messaging includes legs and headaches. The BE FAST messaging specifically calls out calling an ambulance. Regardless, the more people that can recognize a stroke as it is happening, the better off we will all be. Ethnic Differences in Stroke Among the data we talked about was ethnic differences in stroke. For one thing, Hispanic folks who have a stroke are more likely to have a hemorrhagic stroke than non-Hispanic Caucasians. This is a big deal, because, while hemorrhagic strokes aren't as common in general as ischemic strokes, they are more likely to be fatal, and they may result in more severe deficits and disabilities. Additionally, Hispanic folks are more likely to have strokes at a younger age than non-Hispanic Caucasian folks. African Americans are also seeing higher stroke rates than Caucasians. As we talk through the data though, the key thing is that these differences are not biologically based. They're societally based. That means it's a problem that can be solved. It's just not easy. Additionally, it also turns out that when COVID-19 lock downs began happening EMS transport rates also declined more among non-white patients than it did for white folks. Jauja Cocina Mexicana on YouTube Remle talked about her favorite YouTube channel for Mexican food. You can  check that out here: Hack of the Week I have probably 10 or more hoodies in my wardrobe that I rotate through. By hoodie, I mean a zip-up sweatshirt with 2 pockets and, well, a hood. I didn't wear them nearly as often in the pre-stroke days, but now I find them super helpful. For a stroke survivor, hoodies offer these advantages. Playing/practicing with using the zipper is good exercise for an affected hand. The extra pockets are great even just around the home since I can't really access the pants pockets on my affected side. When my affected arm is tired or I just need to take some weight off my shoulder I can stick it in my pocket. When I want to take a quick nap, I can just pull the hood up over my head. It will block some light and tell (some) people to leave me alone. I suppose someone struggling with overstimulation would also benefit from cutting off some of the outside world be deploying a hood. I find them to be simple, practical solutions to make life a little easier. Links Where do we go from here? Download and share the AHORA and BE FAST Graphics Subscribe to the upcoming Strokecast newsletter at Share this episode on social media or with others by giving them the link Don't get best…get better

    Ep 131 - Zebras, Treatments, and Aging

    Play Episode Listen Later May 21, 2021 35:39

      Click here for a machine-generated transcript After I published last week's episode, I realized I had more to say. Thus, we have this week's episode. Zebras "When you hear hoof beats, think horses, not zebras." This is a phrase I've seen used to describe making a diagnosis of a medical condition. Consider the most common condition first; it's probably not the exotic one. And that's a great approach that provide excellent medical care -- most of the time. In my conversation with Rachel from BraEasy last week, it almost led to her daughter's death. Her daughter began having seizures at 8-years old. The medical team diagnosed it as an anxiety condition, and referred her to counsellors. They thought horses. Rachel recognized that wasn't right and kept digging. Finally, she insisted on a physical exam and brain imaging revealed a potentially fatal tumor. She saw the zebra. The point is, we need to listen to our medical professionals because generally they are right. But not always. We still have to advocate for ourselves, even though a brain injury makes that harder. We have to educate ourselves, ask questions, learn more, and then ask more questions to make sure we get the best out come for our health that we can. You can hear Rachel tell her story here. Treatments and the Internet Model, Influencer, and Disability Advocate Alex Dacy has been dealing with a bunch of backlash online lately. Alex is Wheelchair_Rapunzel on Instagram. She's a wheelchair user who lives with Spinal Muscular Atrophy, a degenerative condition that impacts the motor neurons. That means her limbs don't work well, she's struggled with swallowing, breathing, and other things. She's does a nice job of telling her story so I'd encourage you to check out her Instagram to learn more. She recently started a new treatment with a medication called Risdiplam, or, as Alex calls it, "Twerk Juice." She's been getting some great results and has been sharing her journey online. And people have been giving her crap for it. And not just because she's a woman on the internet. People purporting to be part of the SMA community are claiming she's empowering ableds to criticize disabled people, that she's giving people false hope, etc. Again, you can check out her story directly. It's got me thinking more about what it means to recover from stroke. A lot of times we can see improvements in our conditions with enough work, the right attitude, and time. Stroke is an interesting neurological injury because unlike many others, it doesn't have to get worse over time. Stroke is not degenerative. So what does that mean to our identities as members of the disabled community? Aging In April, I technically turned 50. Well, that's what the calendar says. I've decided to continue to be 35, though. But there is still value in acknowledging what the calendar says. At 50, that means 80 is as close as 20. And 20 feels like it was just about 5 years ago. Each year feels faster, and I imagine the next 30 years will feel even faster than the past 30 years have. That's kind of mind-boggling. It also feels like life up to this point has been about growing up and preparing to start an adult life. I guess I should think about actually starting thatat some point. After all, according to the calendar, I've live probable a little less than a quarter of my life now. Hack of the Week A rolling laundry cart* is a surprisingly useful tool. i was a little skeptical when The GF ordered one for our apartment, but I've learned to trust her judgement on this things (seriously, how did I live so many years without a hot water maker?). Early on after stroke, I still used a cane and AFO indoors. My arm was in a sling. Moving the laundry bucket from the bedroom to the washing machine meant kicking it down the hall and trying not to fall in the process. It turns out that's just silly. So we got a rolling cart like the ones you use in a laundromat. It's got a nice poll that makes it easy to grab, and it's got wheels that make it easy to drag around. Super simple and highly recommended, especially if you don't need stairs to access the laundry. amzn_assoc_tracking_id = "currentlybill-20"; amzn_assoc_ad_mode = "manual"; amzn_assoc_ad_type = "smart"; amzn_assoc_marketplace = "amazon"; amzn_assoc_region = "US"; amzn_assoc_design = "enhanced_links"; amzn_assoc_asins = "B0056Z1ERW"; amzn_assoc_placement = "adunit"; amzn_assoc_linkid = "7e824a11e97a9e5701499b55b09c2067"; // Links Where do we go from here? Subscribe to the new Strokecast newsletter launching this summer at If you missed it, go back and listen to my conversation with Rachel about her daughter's stroke and the one-handed bra at Follow Alex's story on Instagram at Don't get best…get better.

    Ep 130 -- Bra Easy and the One-Handed Bra

    Play Episode Listen Later May 14, 2021 52:04

      To read a machine-generated transcript, click here. Let's talk about bras! Specifically, dealing with bras one-handed! Don't worry. In this episode I don't opine on exactly what you put where to get the thing on. Instead, I talk with Rachel Whittaker, the Australian entrepreneur who turned a terrible situation into BraEasy -- The company in position to help bra wearers around the world. She tells us about her then 9-year old daughter stroke and how that led her to a bra the wearer could put on and take off easily with one hand Bio I am passionate about being a voice for people with a disability. After my daughter had a stroke during brain surgery to remove a brain tumor, I became very aware of the struggle that women have every day trying to put on a bra. So I invented an easier bra that can be put on with one hand.  We called it BraEasy.  I am the inventor and CEO of BraEasy Pty Ltd based in Melbourne Australia. How to Use It Here Jamie demonstrates how she puts on and removes the Bra Easy bra. Models Bra Easy uses several models on their website, and most are not professional models. Because reflecting the customer base does not require professional models. Bra wearers of course come in all shapes, sizes, ages, colors, and limb configurations. So should the folks modeling the product. If you're interested in joining the models featured on the site and Bra Easy's social media, reach out to Links Where do We Go From Here? Shop for a Bra at Model for Bra Easy if you are so inclined by emailing Subscribe to the free Strokecast newsletter launching this summer by visiting Don't get best…get better

    Ep 129 -- Take a Deep Dive with Motus Nova CEO David Wu

    Play Episode Listen Later May 7, 2021 55:51

      Click here for a machine-generated transcript using Microsoft Word on the Web. The Motus Hand and Motus Foot from Motus Nova ("New Movement") are air-powered, robotic exoskeletons for in home therapy after a brain injury. Ella Sofia introduced me to the team a couple months ago, and they are now a sponsor of the Strokecast. I wanted to learn more about the product and the company so this week I talk with Motus Nova CEO David Wu. Bio Veteran entrepreneur with over a decade's worth of experience in tech startups focused on healthcare. Recipient of the 2020 Emory Entrepreneur of the Year award in Technology and 2019 Georgia's Most Innovative Tech Startup.  Does it make sense? When considering any therapeutic device, you need tp start with 2 questions: Is it safe? Does it work? Usually the first one is the easier one to answer. In the case of the Motus Hand and Motus Food, the US Food and Drug administration has approved them as class one devices. That means they are safe and effective, so we're off to a great start. You can go deeper, though, and look at the studies done at multiple hospitals and care centers. Here are some examples: Those studies can be helpful to share with your OT, PT, or physiatrist if you decide to ask your medical team (and it's always a good idea to ask your medical team). The other element I encourage folks to consider is the cost in time and dollars to get the benefit. Any treatment you pursue should be in addition to traditional therapies. Or it should take place when you are not already in outpatient therapy. And that's one advantage of the Motus solutions -- you don't need to replace your existing therapist with these devices. The main problem with outpatient therapy is that we don't get enough of it. Time and again, experts come on the show and explain we need to get thousands of reps in. Rewiring the brain is a brute force practice. We have to do the exercises and motions again and again and again to get better. You just can't achieve the scale required in a traditional outpatient therapy model. That makes the Motus devices a much needed supplement to regular therapy. That also means spending an hour a day on it while you listen to podcasts or watch TV is worth the time for most folks. Now we can consider the financial cost. The rental model incentivizes the patient to do the work, get better, and then return the unit. At roughly $99/ week, that will make sense to a lot of folks. Maybe not for others today, but for many it is an affordable safe, and effective solution for stroke recovery. Regression We talk about making progress through rehab a lot, but we don't often talk about the opposite -- regression. David told the story of a veteran who was making good progress in rehab and actually was able to get around with a walker until he went home. Once we go home, we get less therapy. And other things come up so we put off doing home exercises. Before we know it, we've missed a day. And then a week. And then is a month. We never decided to stop. We just...stopped When that happens, we get in danger of learned non-use. Or at least of progress goin backwards. Recovery isn't done or finished until the day we die. We have to keep doing the work. And the more work we do, the better our chances of recovery. Hack of the week The more our mind spins with thoughts, ideas, anxieties, embarrassing memories from 8th grade, and random TV theme songs ("Thhhhheeeeeee ship set ground on the shore of this…") the harder it can be to focus on recovery. Or even on a good night's sleep or a productive afternoon. Meditation is a powerful way to get control of our thoughts and brains again. It can help quiet the noise that burns energy and distracts us from what's important. In Carmen De La Paz's bonus hack this week, she explains that meditation isn't about a guru or a chant. It's about a straight forward element of focus. That means you can meditate while working on a thing, Or sweeping a floor. Or breathing. The key is to simply focus on one thing and let everything else pass from your mind. Links Where do we go from here? To see if the Motus Hand or Motus Food is right for you, visit Subscribe to the free Strokecast Newsletter at Find me on Instagram at Don't get best…get better

    Ep 128 -- Gratitude, Meditation, and Power Tools with Carmen De La Paz

    Play Episode Listen Later Apr 29, 2021 66:40

      Click here for a machine-generated transcript. This week, I spoke with Carmen De La Paz. Carmen is an Emmy-nominated TV personality. She spent years appearing on HGTV and the Oprah Winfrey network. She's a carpenter, an artist, a bilingual host, a singer, an actor, a musician, a dancer and more. Carmen is also a stroke survivor who's story involves a helicopter ride, waking up to the last rites, multiple hospital infections (including sepsis and staph), and encephalitis. And today she is back to working with power tools, creating art, supporting the community of Waukesha, WI, and figuring out her next app. And Carmen is an absolute delight to speak with as she shares her story. Bio From Carmen's website: Carmen De La Paz, Designer, Carpenter, DIY expert and TV personality, inspires people worldwide through television projects and her recently established YouTube channel, featuring videos in both English and Spanish. A “hands on designer” and accomplished craftsperson, Carmen does all of her own work, handling power tools, to create with wood, metal and glass. She is also owner of De La Paz Designs, an interior/exterior design studio specializing in creating designs focusing on decorative finishes and custom made furniture for interior/exterior residential and commercial spaces. Voted one of the top 200 most knowledgeable people in the construction industry in the United States by, Carmen brings the female perspective on home improvement, power tools, design and “do-it-yourself" to the television screen and the internet in both Spanish and English through a variety of projects. Appearing as Co-Host and Carpenter in two Emmy Nominated seasons of the make-over show, "Home Made Simple" on the Oprah Winfrey Network. Often recognized for her work on HGTV - Carmen’s carpentry and design skills were featured on six seasons of HGTV’s highly rated makeover series Hammer Heads which garnered Imagen Award Nominations for Best Reality Show. In addition to many other shows on HGTV, Carmen appeared as one of HGTV’s celebrity carpenters on a season of highly-rated HGTV’s Design Star and was a judge on Mike Holme's All American Handy Man Competition. Additionally, Carmen currently can be seen as the host in multiple seasons of the PG&E webisode series, Energy House Calls, which was nominated for an Imagen Award for Best Web Series, Reality or International. Continuing to share her expertise and craftsmanship, Carmen appeared on George to The Rescue, filmed simultaneously in English for air on NBC and in Spanish for air on Telemundo. Carmen has gained a strong international Spanish language following from her four years on FOX International’s Spanish language channel, FOXLIFE, with several shows airing in 17 countries including the US, Canada, South America, Mexico and the Caribbean. While at FOX Carmen was creator, producer and host of 40 episodes of her own show, Be Handy con Carmen. Additionally, Carmen hosted 40 episodes of the DIY show, Hágalo Fácil, for FOX LIFE,and was featured in 80 Episodes of Talkshow Hola Martin and 3 seasons of the highly rated Spanish language talk show, Tu Vida Más Simple. Carmen’s other TV credits include: HGTV’s, Showdown I & II – where she was featured, for two seasons, as the only female carpenter to compete in the show; NBC’s Today Show – Weekend Edition; HGTV’s – 250K Challenge; HGTV – 25 Worst Landscaping Mistakes; HGTV – 25 Worst Renovation Mistakes; HGTV – Home for the Holidays; DISCOVERY Español – Mientras No Estates & Ideas Para La Casa; WE Network – Holiday Home Invasion, Children's Show Paloozaville as Co-Host to John Lithgow and host on FOX Television’s children’s show The DJ KAT Show. Carmen served as brand ambassador and spokesperson respectively for 3M and the ScotchBlue brand for four years. During her time, she produced content and hosted several how-to videos for ScotchBlue, represented 3M at several industry conferences including Hispanicize 2015, and represented ScotchBlue in a variety of media efforts including Satellite Radio and TV Media Tours, magazine and print Contributions, as well as public events all over the country. Born in San Juan, Puerto Rico and raised in Wisconsin, Carmen is an alumna of Syracuse University and has a BFA in Music Theatre. She also studied Broadcast Journalism though the UCLA Certificate program. Carmen is a musician, plays nine instruments and has an amazing vocal style. Carmen's Demo Reel See Carmen in action here: Gratitude A recurring theme from many survivors is gratitude. Many of us, while we don't recommend the stroke experience, feel a sense of gratitude for the life we have now. I'm one of them. Carmen talks about how grateful she is for her life today. Neuro Nerd Joe Borges expressed that sentiment, too. As did Kristen Aguirre and Vince Holland among others. I get that not everyone will feel that way. Sometimes the particular deficits we are left with make that harder. And some people don't make it. We may be grateful because we realize things could have been so much worse. But many times stroke makes us reassess our life. It suddenly interrupts normal life. Everything has to stop, whether we want it to or not. And that interruption isn't just about a week off. It can be months or years. And that interruption is a time to stop and rethink what we are doing. That's interruption can be something we are grateful for. It makes us stop and make decisions about how we want to live our lives going forward. While I might like to see all my deficits go away tomorrow, I wouldn't want to not have had this experience. It's made me who I am today. And it's brought amazing people into my life. But again, I don't recommended having a stroke. While Carmen and I and others had to be forced into this shift, if you haven't had a stroke, you can still take a break and rethink your priorities to make sure they really are bringing value into your life. And take some time to put together your own gratitude practice to recognize the things that bring value to your life. Waukesha, WI Waukesha, WI is Carmen's home town. With a population of roughly 70,000 people, it's just outside Milwaukee, and a couple hours away from Chicago. And the town has really embraced Carmen. She's working on civic projects, and the love she has for the community really comes through in our conversation. Art and Stroke Carmen talks about the change to her art since her stroke. Her description sounds more disciplined and focused that before. Before her stroke, she described her art as embodying the idea of catharsis -- a building and building until it bursts through. Since her stroke, it seems less chaotic. More refined, focused, and discipline. Here's an article about the interview Carmen did just before her stroke. In addition to the changes brought on by our disabilities, stroke can affect us in other ways. I find my writing to be more focused now. But the example that really jumps out at me is the conversation I had with Seth Shearer a couple years back. You can listen to that conversation at Seth is a Seattle artist. After his stroke, his art changed dramatically. The change was so dramatic it felt like a different person painted it. Seth began to paint under his middle name of Ian because of the difference. The things we want to say and how we want to say them are influenced not just by the outside world, but by how we perceive the outside world. Our senses provide raw data, but our brains create meaning from that data. And when our brains change, the way they create that meaning also changes. Our ability to then express that meaning is impacted by how our brains can use our bodies, by how we can focus on a thing, and by the volume of mental resources we can bring to bear on bear on the project. And that can be a beautiful thing. Aneurysm Basics An aneurysm is an often misunderstood medical condition. The general public thinks it's when the brain just starts bleeding catastrophically. And that's close, but not quite right. In reality an aneurysm is a weak spot or bubble in the side of a blood vessel or at a spot where the blood vessels divide. As long as the aneurysm doesn't break, leak, or get too big, you can go your whole life with an aneurysm and never know it. Millions of people walk around with aneurysms in their brains and will never know. Carmen's aneurysms manifested for 10 years as migraines. That bulge in the wall of a vessel can cause problems and press against stuff it shouldn't. Remember, there's not a lot of extra space inside our skulls. They're pretty well packed. Unfortunately many folks don't get the scan that can show the aneurysm. You can't treat an aneurysm if you don't know it exists. If you do learn it exists, there are some amazing surgical procedures to treat it. Or if it's minor enough neurologists may suggest leaving it alone But sometimes they are weak enough that they break. And when they rupture and send blood coursing directly into the brain, the results are catastrophic. Many hemorrhagic strokes are caused by ruptured aneurysms and folks who survive are quite lucky. Motus Nova Motus Nova is a sponsor this week. I just started using the Motus Hand device. It's an air-powered, computer-controlled, robotic exoskeleton for my affected hand. It's a therapy tool, rather than an adaptive tool. One thing I really like about it is the way it collects data and scores my performance on its video games. It's sometimes hard to see the gains we make in therapy over time because they happen slowly. But the reports and data make it much easier to see improvements over time. I also learned after my first session that I have much less wrist extension than I thought. So now I know one more thing to specifically target. If you'd like to see if the Motus Hand or Motus Foot can help with your recovery, visit and use the code Strokecast for 10% off your first month. Hack of the Week Clamps are an essential tool in woodworking. They give the carpenter and extra, super stable hand. You know who else can use an extra, super stable hand? Stroke survivors with limb weakness! A simple clamp is something you can use to hold a thing in place. Maybe that's a piece of timber. Maybe it's a cutting board. Maybe it's a piece of paper you're trying to sign. The variety of clamps available is mind boggling. The right one depends on what you want to do. You can find a bunch of different options on Amazon here.* Here's one in particular that seems one-hand friendly. I may need to pick up a few myself.* And of course, I'm still have a warm feeling for the traditional C-Clamps of my youth. You can find those here.* Explore some different options. And the next time you try something and think, "This would be a lot easier with two (or three or four) hands," make a mental note to look for a clamping solution. Links Where do we go from here? Visit Carmen's store and learn more Carmen's work at CarmenDeLaPaz.Com The free Strokecast newsletter launches this summer. Sign up for the monthly newsletter at Follow or subscribe to the Strokecast in your favorite podcast app so you never miss an episode Don't get best…get better. *Affiliate links

    Ep 127 -- One Fine Day Everything Changes

    Play Episode Listen Later Apr 16, 2021 53:58

      Click here for a machine generated transcript One Fine Day everything changes. Nothing will be the same. Sometimes that's a good thing. Sometimes it's not. And sometimes we won't know for years. Sameer Bhide was living the American dream. He grew up in India, Came to the US for college, graduated with his Masters Degree, got his green card, and too a great job in IT consulting. By the time he was 47, he was married with kids and living in a great home in the suburbs of Washington, DC with a sports car. And then a genetic abnormality reared its ugly head inside of his head. He had a hemorrhagic stroke. Over the next couple years, he would lose his job, go through a divorce, and move out of the amazing house. But Sameer continued to work on his recovery. He travelled to India to supplement a western stye recovery with eastern techniques. He chronicles his experiences in the book One Fine Day. And he shares his story in this episode of the Strokecast Bio From Sameer's website: On January 31st, 2017, at the age of 47, Sameer suffered an extremely rare catastrophic hemorrhagic stroke in his cerebellum, underwent two brain surgeries, and spent a month in a medically induced coma. Not just his life-changing debilitating illness, later on, he had to quit working, and on top of that, he also went through a divorce. He is extremely grateful and thankful to the Universe that he survived and he promises the Universe that he is going to make the most of the fact that he is alive.  Sameer is on a unique journey of life, a journey complete with excellent highs and heart-wrenching lows. He is a true fighter, excellent writer and a motivational speaker and thus, written an inspirational book titled “One Fine Day” a unique story of resilience and hope in facing the new normal. It is a transformative memoir about his illness and experiences dealing with adversity and how he came back from the brink of hopelessness/death with the help of a diverse community of friends, caregivers, colleagues and other people around him in his adopted country (USA) and his country of birth (India) besides his family. Sameer’s mission starting with his book is to help and guide people worldwide on how one can prepare for and embrace their new normal whatever it is for them with positivity, grace and gratitude. Writing Process I find the process survivors go through to write their books fascinating. In part that's because I've started work on mine. But it's also interesting because people choose different ways to work around their disabilities. Writing a book requires energy, a willingness to revisit some of the most painful and frightening moments we've lived through, access to language, an ability to type or handwrite, and wherewithal to bring it to market. None of those come easy after stroke. Sameer worked with a ghost writer for his book. This gave him a few advantages. For one, he could work in bursts. He didn't have to sit down for hours. This way he could work around things like neurofatigue or the discomfort that can come from typing a lot. He would share his story with the ghostwriter who would write the story out. Then Sameer could make revisions. They could go back and forth to tell Sameer's story in Sameer's voice. Sameer also leveraged his work experience in crafting a product plan. E jokes about it, but it makes a lot of sense. Even if we can't work in our pre-stroke profession, we can often still find a way to leverage those skills and experiences in post stroke life. When a lot of people see a stroke survivor, the see a person with disabilities. What they don't see is the IT project manager, the lawyer, the judge, the assembly line worker, the retail manager, the author, the actor, the pilot, the broadcaster, etc. Yet we are those things and more. And in the projects we pursue after stroke, we can often leverage those skills. We bring a treasure trove of experiences to post-stroke life. Sure, some of them may be harder to access now, but they are still there. It's up to us to figure out how to use and find new applications for those skills. Disability in India On Twitter, elsewhere in social media, and in conversations with disabled people in the US, you'll see discussion about lack of accessibility, and the challenges of that. And we absolutely should talk about it. The Americans with Disabilities Act is 30 years old and its ridiculous so many people still have to fight for the accessibility and accommodation that Federal law "guarantees" to us. As Sameer points out, the situation is worse in India. You simply won't see the level of accommodation and accessibility that you see in the US. Sameer grew up in India, the came to the US, then became disabled, then went to India, giving him a deep perspective on the issue. It mirrors the limited observations I shared about my week there a couple years ago. Accessibility is a growth area around the world with different challenges in different places. And being "better" is not the same as being "good. Hack Jugaad of the Week Sameer talked about the importance of  meditation and mindfulness in his recovery. Between added stress and the experience of over sensitivity to environmental stimulation, our minds can be exhausting spaces. It makes it hard to focus on recovery, and an overly exhausted mind may not be optimized for the neuroplasticity needed for recovery. There are two key tools the popular Headspace app and video chat meditation centers with his guide in southern India. There are lots of software solutions and YouTube channels that can help you with your own meditation and mindfulness needs. When I was receiving outpatient care one such session was even covered by my insurance at the time. Explore your options or ask your care team for their recommendations if you feel meditation or mindfulness can help you. Motus Nova I'd also like to take a moment and welcome new sponsor Motus Nova to the Strokecast. You'll be hearing from them in a couple week. Motus Nova makes devices to help stroke survivors with our at home rehab. For example, the Motus hand is a robotic exoskeleton that help you use your hand to play games and do exercises. It’s similar to the way my PTs and OTs used to manipulate my affected limbs in therapy sessions. It’s designed to make it easier to get in the thousands of repetitions we need to ensure a strong recovery. If you'd like to learn more or find out if the Motus Nova devices can help your recovery, visit to complete a free online assessment. And use the Promo code "Strokecast" to save 10% on your firs month. Special thanks to Strokecast guest Ella Sophia for introducing us. Links Where do we go from here? Check out Sameer's book, One Fine Day on Amazon* or wherever you get your books. The Strokecast newsletter launches this summer so signup today at Don't get best…get better *Affiliate link. I may receive compensation if you make a purchase through the link.

    Ep 126 - Kitchen Tips for Stroke Survivors

    Play Episode Listen Later Apr 8, 2021 33:42

      Click here for a machine-generated transcript. I'm excited to announce the new Strokecast Newsletter. This free, monthly  email newsletter will launch this summer. You can sign up at It will include synopses of recent events, stroke community news, updates from previous guests and more. So signup for free at 11 Kitchen Tips for Stroke Survivors The core of this week's episode is Kitchen Trips for Stroke Survivors. I talk about them in a lot more detail in the episode, but here is the list. Mise en  place Prepare all your ingredients and tools before you start cooking. You'll be less stressed and rushed. You'll be less likely to make a mistake, and you'll be less likely to forget a key ingredient. Slow is smooth. Smooth is fast. Take your time while doing your tasks. Focus on getting them done right, rather than getting them done quickly. If you can keep it smooth, you'll be surprised at how much time you ultimately save by not being sloppy and having to fix mistakes. Let it fall Don't try to catch a falling knife. It's a good way to seriously injure yourself. When something starts to fall, you may find yourself panicking as you try to stop it and dropping something else. Instead, just let it fall and deal with the aftermath. Use big coffee mugs as small mixing bowls Giant coffee mugs are great little mixing bowls. My affected arm and hand are full of tone, but if I can get my fingers in the handle, the tone will hold the mug in place so I can use my unaffected hand to beat an egg or mix tuna salad. Dycem Get a roll of Dycem ( (affiliate link)). This plasticy, rubbery, non-adhesive stuff is great for keeping bowls, cutting boards, and containers of yogurt in place so they don't slide around as you use them. Your OT probably had a bunch and you can find it on Amazon. When it stops sticking, just was with soap and water and it's good as new. Sharpen your knives Dull knives are dangerous knives. They're difficult to use. And the way we (or at least I) use knives post stroke makes them duller, faster. So get them professionally sharpened. Hot water maker Get a stand-alone hot water maker. They're a super simple way to always have hot or boiling water safely available. I drink so much more tea sing The GF and I got one. Stand off-center while doing dishes We center ourselves at the sink to make it convenient to use both hands. If only one hand works why do we continue to do that? Center your unaffected arm with the sink to reduce reaching, strain, and splashing. Checklist Use a checklist to make sure you don't forget a step. The more complex a meal, the more high-stim the environment, the more helpful the checklist will be. Let the beepers beep Just because an alert goes off doesn't mean you have to drop everything and attend to it. Your appliances work for you, not the other way around Be safe More important than anything else is that you be safe. Don't take unecesary risks, even if that means you have to abandon meal prep halfway though. Worst case, there';s always delivery and take out. Links Where do we go from here Subscribe to the Strokecast newsletter at Share your favorite kitchen tips with Stay safe in the kitchen and make yummy things Don't get best…get better

    Ep 125 -- The Spooniepreneur Life

    Play Episode Listen Later Apr 1, 2021 39:00

      Click here for a machine-generated English transcript A stroke is a forced opportunity to reevaluate our personal and professional lives. Maybe we don't think we can do our previous jobs as well. Or maybe others make that decision for us. Regardless, is now a good time to go into business yourself? Maybe. Of course, being an entrepreneur always has its challenges. Pursuing business ownership with stroke related disabilities or Chronic illness poses some additional challenges. And some opportunities Nicole Neer is a Spooniepreneur -- a business owner and coach living with multiple chronic illnesses. She helps other spoonies -- like stroke survivors navigate and thrive in the entrepreneurial world. We talk all about it in this episode. Bio Nicole Neer is the founder and CEO of Bloom Admin Services, a full-service virtual support agency providing online business management, podcast editing, and virtual assistance for online businesses. Because of her experience of being an entrepreneur living with Fibromyalgia, Bipolar Disorder, Anxiety, Sleep Apnea, and Irritable Bowel Syndrome, Nicole is passionate about helping those living with chronic illnesses to build resilient businesses that cope with whatever life throws their way. She's also the host of the Spooniepreneur podcast, a show that highlights what it's like to be an intentional entrepreneur who makes the most of the time and energy you have. 6 Tips for Disabled Business People 1. Decide what it will be. What do you want to do with your business? It helps a lot if you are passionate about it, but you also need to consider the market. What role do you want this business to play in your life? Is your focus to get rich or just make a little extra pocket change? Or is it somewhere in between? I would also add that if you are on disability or Medicaid in the US, or other social support programs around the world, be aware of how working on your business could impact your continued eligibility for those programs. 2. Build business plan with non-revenue goals. Instead of focusing on bringing in $500 or $5,000 this month, focus instead on the targets that will support the revenue. Maybe that's a certain number of Instagram followers or widgets made or Etsy store visits. Concrete, behavior oriented goals may be easier to visualize and focus on achieving 3. Map out your day to accommodate fatigue and naps. If you deal with neurofatigue, plan for it. You're making your own hours and customer commitments. Fatigue planning, nap schedules, medical appointments, and home therapy are just as few things that impact our ability, energy level, and availability. You can and ought to build your business around these things 4. Plan how to handle bad days. Sometime we have great, high-energy days. Sometimes we do not. On a good day, develop a plan for the bad days. Is that reallocating work? Is it getting someone to help you? Is it sub-contracting? Does it mean just delaying stuff? There are lots of ways to prepare for them. The important thing is that you do prepare 5. Be honest in advance. Sometimes planning is not enough, and things do slip. Be honest about it. If you're not going to make a deadline, let the key parties know. Don't try to hide it. Managing expectations is the key to happy customers. 6. Over communicate. This is related to number 5. People don't like negative surprises from their vendors. They like it even less when they find out you knew a week before you told them. Over communicating -- and doing so with integrity -- helps to set the appropriate expectations and reduce unpleasant surprises. What do you mean by "Spoonie?" Spoonies take their name from the Spoon Theory, first articulated by  Christine Miserandino. You can read her essay here. Basically, it's a way of explaining energy levels folks living with chronic illness or disabilities have. Christine came up with the analogy while trying to explain to her friend what it was like going through a day with Lupus and how every decision we make affects other decisions later in that day. You start the day with a certain amount of spoons, and everything from getting out of bed, to cooking breakfast, to getting dressed costs a certain number of spoons. When you're out of spoons, you're done for the day. I'd encourage you to read Christine's essay. Many disabled and chronically ill folks have embraced the analogy and call themselves spoonies. Personally, I find it useful to explain why just because I can do something, it doesn't mean I should. For example, I CAN walk around outside without my cane, but it comes with a 2X spoon penalty. And personally, I'd rather save those spoons for something more important. Hack of the Week Post-it or Sticky notes are great, but they can clutter up a space. And your important reminders have a way of falling to the floor when you need them. Trello is a digital alternative. It's a website where you can manage digital sticky notes. These cards live in columns on a virtual wall and can have all sorts of different information on them. You can move them around from one column to another, change the order and more. It's a great project management system, tool for organizing procedures, or just a way to stay on top of the various things you need to do. Plus it's a nice way to reduce the chance that something will slip our minds. Links Where do we go from here? Check out the Spooniepreneur Podcast here or wherever you listen to podcasts. You can learn more about Nicole's services at Bloom Administrative Services. Follow or subscribe to the Strokecast for free in your favorite podcast app so you never miss an episode. Don't get best…get better.

    Ep 124 - A Lesson in A Lesson in Swimming

    Play Episode Listen Later Mar 12, 2021 61:53

    Click here for a machine generated transcript. One thing you learn as a stroke survivor is that things change. Plans change. Your world changes in an instant. In that respect, I think many of us had an advantage when COVID-19 broke the planet. We'd been through it before. Many of us had already been at home for weeks, months, or years. Michael Shutt's world turned upside down when he experienced a series of three strokes. He was told he would never act again, but wouldn't let that stop him. So he wrote a solo performer show to share his story, connect other members of the stroke community with the theater and with each other. And to get back on stage. He assembled a team to make this thing a reality. He performed a workshop version of the play to find out what works and what doesn't. Michael and his team were getting ready to launch the show for real. And then COVID hit Los Angeles. Over the past year, they pivoted. They got a grant, and now "A Lesson in Swimming" is an audio drama you can listen to hear. In this week's episode, I talk with Michael about his journey. We also get deeper into the media to better understand the nature of these media. Bio From Michael's website: Each year, roughly 800,000 Americans experience a stroke. In 2015, actor, director, and longtime Moving Arts’ company member Michael Shutt survived three. ​Michael then spent almost three years writing scores of short stories about his experience before teaming up with director and dramaturg Diana Wyenn to take his powerful and unexpectedly hilarious story to the stage. In 2020, they were scheduled to open the world premiere of A LESSON IN SWIMMING at Bootleg Theater in Los Angeles when the coronavirus pandemic hit. It soon became clear that their plans had to get pushed…or they could adapt. A Lesson in Swimming Trailer Here's a taste of the story Michael tells. University of Washington Medical Centers Support Group The UW hospital network in the Seattle area is now offering monthly virtual stroke support group meetings. The best thing is that you don't need to be in the Seattle area to attend. It's all online. Each meeting takes place on the second Tuesday of the month through Zoom.  If you're interested in attending, you can click this link to learn more. Hack of the Week USB rechargeable bicycle lights are a great way to  decorate a cane or other mobility aid -- especially if you are going out after dark. They're fun, easy to use, and can make things safer for you by making it easier for other folks or drivers to spot you. You can find a bunch of different ones on Amazon. This version is a good place to start (Affiliate link). Links Where do we do from here? Listen to "A Lesson in Swimming" and follow Michael on Instagram. Follow or subscribe to the Strokecast for free on your favorite podcast app so you never miss an episode. Don't get best…get better.

    Ep 123 -- Feldenkrais Movement with Nancy Haller

    Play Episode Listen Later Feb 28, 2021 30:12

      Click here for a machine generated transcript by Microsoft Word on the Web. Feldenkrais movement is a method of retaining the brain by using small, deliberate manipulations of the joints. Practitioners use it to treat everything from stroke-related disabilities to Post Traumatic Stress Syndrome (PTSS) and more. It's something I read about in my early days of learning about neuroplasticity, but not something I pursued. I still wanted to learn more, so I invited Nancy Haller from the President of the Feldenkrais Guild to talk about the therapy. Bio Nancy Haller is a teacher, speaker, and writer with a private practice in the Seattle area. She continually works toward BrainEase using the Feldenkrais Method®. She has authored works on Foreign Accent Syndrome and the Feldenkrais Interactive Movement Chapter included in the Integrated Pain Management Text book. Nancy brings her own personal story of recovering from brain injury to teaching others to find pathways to BrainEase in daily life. Whether you are experiencing a brain injury, brain fog, feeling brain tired or you have someone you work with or love that is struggling with brain issues. This book is available on Amazon in both paperback and kindle forms Science Feldenkrais doesn't seem to be part of most mainstream treatment programs, though some may recommend it. So what does the science say? Researchers Susan Hiller and Anthea Worley from the University of South Australia completed a meta analysis of the available literature in 2015 and came to this conclusion: There is further promising evidence that the [Feldenkrais Method] may be effective for a varied population interested in improving functions such as balance. Careful monitoring of individual impact is required given the varied evidence at a group level and the relatively poor quality of studies to date. Susan Hiller and Anthea Worley That's definitely encouraging. And it makes sense. The Feldenkrais Method involves sometimes imperceptible movement. In the early days of my recovery, I could feel muscles start to come back online before I could actually make them move. Maybe I was activating just one of the hundreds or thousands of individual fibers that make up a leg muscle. Recognizing that reinforces to the brain that something good is happening here. This route appears to work so let's put more resources there. In some respects, the Feldenkrais Method seems aligned with that, Should you try it? Maybe. As with anything, check with your doctor and medical team first. It seems unlikely to cause any harm and if your doctor concurs, check it out. There are a lot of free resources out there and you'll find some of those in the links below. So you can try it out without paying anything. It can take some energy, but you don't have to do it for hours on end. It shouldn't interfere with more traditional therapy. So it likely has some benefit based on the studies, and lots of folks have significant benefits. It makes sense. It's unlikely to cause harm. It doesn't have to cost a lot of money or time to get started. If it appeals to you, based on this analysis, I'd say go for it. Oh, and here's an article in the New York Times that talks about Feldenkrais Method and other movement therapies. Moshe Feldenkrais Feldenkrais himself had an impressive life. As a teenager, he emigrated from Belarus to Palestine as WWI was ending. He walked there. He studied judo and jujitsu. In Paris, he studied electronics and physics. He escaped to England as the Nazis were rolling into Paris. He conducted anti-submarine research in Scotland and taught Judo to British sailors. He would go on to write 9 books, direct the Isreali Army's Department of Electronics, and eventually come to the US where he taught folks the his now eponymous method. You can read more about him and his works in Mark Reese's Feldenkrais Bio on the Feldenkrais Guild's website here: Hack of the Week Accept that you have a brain injury. There's a stigma associated with brain damage, but if you've survived a stroke, then, by definition, you have a brain injury. In my brain, there is a chunk of scar tissue that used to be live, functioning brain cells. Once you acknowledge and accept you have this brain damage, it means you don't have to spend energy denying it. Accepting that can be liberating. It's easier to remember that there's nothing wrong with an affected arm or leg. The problem is all in your head, literally. And that's what you need to treat. Acknowledging the reality doesn't mean giving up on getting better. Instead, it gives you a starting place that you can build from. Links Where do we go from here Check out Nancy's Book on Amazon (aff link) and visit her website to learn more about the Feldenkrais. Check out to learn more about the method. Subscribe to Strokecast in you favorite podcast app so you never miss an episode Don't get best…get better.

    Ep 122 -- After a Stroke at 22 Mimi Hayes Chose Comedy

    Play Episode Listen Later Feb 4, 2021 79:30

    (Transcript pending) Mimi Hayes is a bucket of sunshine. Mimi and I have been in each other's zone of awareness for sometime and we finally connected to record a conversation. Mimi is a stand-up comedian, author, former high school teacher, young stroke survivor, and is the only person know who walked around Scotland wearing a giant foam brain with Band-Aid on it. In this episode we talk about the powerful words from an OT, the importance of writing authentically, the nature of burn out, and why everyone should have a fake attorney on retainer. Bio

    Ep 121 - High Intensity Gait Training with Meghan Larson

    Play Episode Listen Later Jan 28, 2021 55:35

    Click here for a transcript generated by Microsoft Word on the Web. High Intensity Gait Training is a new research-based approach to Physical Therapy. Rather than focusing on the details of walking, it focuses more on the volume of steps — even if they’re not the cleanest steps.  It’s not just the steps, though. It’s also about getting the heart rate up safely. This therapy drives heart rates up to 65-85% of the max. And you know what? It works. Patients who go through this therapy walk faster. They walk further. Their sit-to-stand performance is better. It turns out the intensity primes the brain for the neuroplastic changes that work with the repetitions we need to do to acquire or re-acquire skills like walking. You can read one of the studies here. This week we learn about High Intensity Gait Training from Dr. Meghan Larson, PT, DPT, NCS. Not only is Meghan specially trained in this therapy, she is also the woman who taught me to walk at age 46. She was my inpatient PT back in 2017. And she continues to be an utter delight. Bio Dr. Meghan Larson, PT, DPT, NCS is a board certified Neurological Clinical Specialist Physical Therapist who completed her doctoral work at Columbia University and undergraduate degree at Gonzaga University. Currently, Meghan is a staff Physical Therapist at Swedish Medical Center Cherry Hill Campus in the Acute Rehabilitation Unit. She has previous experience in Neuro ICU, Neuro Telemetry, Long Term Acute Care and outpatient orthopedics therapy. Currently areas of interest and specialty are Stoke Rehabilitation, Vestibular Rehab, gait training and balance re-training. Meghan lives with her husband, two kids and dog in Seattle, WA. She enjoys cooking, running, hiking, traveling and spending time with her growing family. Education Doctorate Degree- Columbia University Undergraduate Degree- Gonzaga University Board Certification- Neurological Clinical Specialist Work Experience Current- Staff Physical Therapist at Swedish Medical Center- Cherry Hill Campus in the Acute Rehabilitation Past- Highline Medical Center- Regional Hospital Lead Therapist and Physiotherapy Associates Staff Physical Therapist Two Things Successful Patients Do Meghan works with a lot of patients. Some are more successful than others. What drives that difference? Meghan sees two things that the successful patients do First, they trust the process and the therapists. The therapists spend years studying this stuff. They push us. And sometimes we develop an intense dislike of them because they are pushing us so hard. But the thing I, most of them know what they are doing. They’re pushing us because pushing us works. So trust the therapists and the work they are making us do. The second thing successful folks do is they are kind to themselves. That doesn’t mean treating therapy as a vacation or not trying hard. It means trying and working and when failing, not beating themselves up. This stuff is hard. We are going to fail. That’s how we know we are trying. But thinking of ourselves as failures or getting angry with ourselves or engaging in negative self talk doesn’t help. We have to forgive ourselves for the things we can’t do — yet. Would you talk to another survivor the way you talk to yourself? Would you call someone the names that you call yourself? If not, then don’t treat yourself that badly either. Be kind to yourself.   Caffeinated Comics A couple weeks ago, I joined visited the Caffeinated Comics. We talked about the insurrection at the US Capitol and a lot about Star Trek. We also talked about Voice Over Artist Tom Kane who recently survived a stroke and now lives with aphasia. You can learn more about and listen to the episode here.   Hack of the Week If there is something you want to do after stroke, let your therapist know. If something gave you joy before your stroke, talk about it and dive into the resources available to help with it. Whether it’s a hobby, skill, or other passion, ask your therapists about it. They can help tune your therapy in that direction. They also just know stuff. They may be familiar with gear or techniques that can help. If you’re no longer in therapy, they may still be able to help. So shoot them a quick email. There’s help out there. Sometimes you just need to ask. Give it a shot. And here’s the thing — they want to hear from you even after you’ve finished therapy with them. Especially when they worked with you in the early days after your stroke. They saw you at the very early stages, and they are thrilled to see the progress you’ve made after a month, 6 months, a year, or more.   Links eghan (Fuchs) Larson, PT, DPT, NCS Academy of Neurological Physical Therapy Intensity Matters Campaign BORG Scale Shirley Ryan Ability Lab High Intensity Interval Training in Chronic Stroke (HIT) Variable Intensive Early Walking Poststroke (VIEWS): A Randomized Controlled Trial Importance of specificity, amount, and intensity of locomotor training to improve ambulatory function in patients poststroke Clinical Practice Guideline to Improve Locomotor Function Following Chronic Stroke, Incomplete Spinal Cord Injury, and Brain Injury Emilee Mason on Strokecast Other Swedish team members on Strokecast Bill on Caffeinated Comics   Where do we go from here? To learn more about, or connect with Meghan, find her on LinkedIn here. Do you know a PT, physiatrist, or survivor who you think would be interested in High Intensity Gait Training? Share this episode with them by giving them the link Let your therapists know how you’re doing. Don’t get best…get better. Strokecast is the stroke podcast where a Gen X stroke survivor explores rehab, recovery, the frontiers of neuroscience and one-handed banana peeling by helping stroke survivors, caregivers, medical providers and stroke industry affiliates connect and share their stories.    

    Ep 120 -- How COVID-19 Causes Stroke with Dr. Jason Hinman

    Play Episode Listen Later Jan 21, 2021 46:25

      Click here for a machine-generated transcript. We know that COVID-19 causes stroke in many cases. You can recover from the disease and then still have a stroke caused by the virus. Sometimes the only way you find out you have a COVID-19 infection is that you go to the hospital with a stroke and they tell you. In the US, about 1500 strokes a week are caused by COVID-19. But why is this happening? We're starting to get some answer about how COVID-19 causes stroke thanks to the work of Dr. Jason Hinman and his colleagues at the University of California Los Angeles (UCLA). In this episode Jason and I talk about his research and the relationship between Stroke and COVID-19. Bio Jason Hinman, M.D., Ph.D. - Dr. Hinman is Assistant Professor of Neurology at the David Geffen School of Medicine and Interim Director of the Stroke Program at the West Los Angeles VA Medical Center. Dr. Hinman received his MD/PhD degrees from Boston University School of Medicine. He completed adult neurology residency training at Ronald Reagan UCLA Medical Center with fellowship training in vascular neurology and stroke rehabilitation also at UCLA. His NIH-funded research laboratory focuses on the molecular pathways at the interface of stroke and Alzheimer's dementia using basic and translational models of stroke and cerebrovascular disease.  The Model The technology Jason, Dr. Naoki Kaneko,  and their colleagues use is fascinating. They've taken scans (MRIs, CT scans, Angiograms, etc.) of patients' brains and used those scans to build a physical, 3-D model of the networks of veins and arteries in the brain. This allows them to see just how blood flows and where it struggles. It also means neurosurgeons who may be planning to fix a patient's aneurysms with a stent or coil could practice on an actual model before going into the patient's brain. With Jason's research, they line the fake vessels in their model with human epithelial cells. These cells are the same ones that line our real blood vessels. As a result, they were able to observe the way the virus interacts with the blood vessels. Then they learn how that interaction can lead to clots and other blood vessel damage, which, in turn, causes a stroke. Here's a link to the study: And here's a link to the press release about the study: https:/ The Solution If you've survived a COVID-19 infection, how can you reduce your chances of having a stroke? Right now, the best research says to eat right, exercise, hydrate, and get good sleep. In other words, do the things the medical establishment has been telling us to do for years. There's no magic solution. We just have to do the hard work of doing the right thing. Which, of course, is also how you reduce your chances of having a stroke even if you haven't had COVID. I know. It sucks. But at least it's cheap. BEFAST More people are having stroke due to COVID-19. Younger people are having strokes. Many of these strokes can be treated and result in minimal disability if the person gets to the right hospital quickly enough. So make sure everyone you know can recognize a stroke. Teach them to BEFAST. Sudden loss or change in Balance, Eyesight, Facial droop, Arm control, Speech or language means that it is Time to call an ambulance. The Important Takeaway Don't catch COVID-19. The impacts are long lasting. Even if you survive (and most people will) it still damages your blood vessels, your heart, your kidneys, your lungs, and more. If you survive, the Grim Reaper gets another bite at that apple through COVID inspired stroke and other conditions. Mask up when you go outside. The mask isn't to protect you. It's to protect anyone else that you see and their families. The fact is there is no way to know for sure if you are infected right now. You could be. I could be. Since symptoms may not show up for a couple weeks, we can't know. Mask up so you don't kill someone or give them a stroke. Minimize social contact. When you do have that contact, keep your distance. Avoid crowded indoor spaces. If you see someone without a mask, stay away from them. If they get offended, so what? Let them. Afterall they're the ones trying to infect and kill you. Take advantage of delivery and curbside pickup. Work from home if you can. Not everyone has those options. Respect people who do have to go out to work by respecting rules intended to reduce transmission. Many of us don't have to stay locked up 24-7 for months on end. We can go out on occasion, but we have to be responsible about it. Hack of the Week It's winter, my Dysport (Botox alternative) is wearing off, and we've had a stressful start to 2021. All that adds up to my tone and spasticity getting stronger and tighter. When I want to undo that fist I make by default, I could just forcefully  open my fingers, but that just encourages more resistance. What's for effective is to bend my wrist down (flexion) in the direction the wrist tone want to go anyway. When you bend your wrist down, that naturally encourages your fingers to open up. The reason for that is that the finger extensors -- the muscles that open your fingers run from your forearm over the top of your wrist and the back of your hand. Bending your wrist down causes them to pull on your fingers, opening your fist. Give it a try. Links Where do we go from here? Visit the Strokecast Gift Guide for stroke books and other stroke-related item at Follow Dr. Hinman on Twitter at @HinmanLabUCLA Consider donating to the American Heart Association to support research like Dr. Hinman's into the causes, prevention, and treatment of stroke Share this episode with a friend, colleague or relative by giving them the link Don't get best…get better

    Ep 119 -- Stem Cells and Thrombectomy with Dr. Dileep Yavagal

    Play Episode Listen Later Jan 14, 2021 45:12

      Click here for a machine generated transcript. Mission Thrombectomy 2020+ is an initiative to double the number of mechanical thrombectomies around the world. This initiative, driven by Dr. Dileep Yavagal, aims to help more stroke survivors, communities, and economies in the developed and developing world by reduces the level of disability cause by stroke. We talk about that initiative this week, but first we get an update on Stem Cells. Dr. Yavagal was a guest on Strokecast back in episode 42. We talked his work in stem cell research to treat acute stroke patients. The work was promising but still experimental. It still is. Dileep gives us an update on the progress and research protocols involving the treatment. The bottom line is there is NO approved stem cell therapy in the US today. Research has not sufficiently demonstrated safety and effectiveness. But they're working on it. The only stem cell therapy available for stroke is experimental in research studies. If you choose to participate in those studies, great! Research studies provide the treatment for free. If someone tries to charge you or collect a fee for stem cell therapy, run, hobble, or wheel away as fast as you can. It is not a legitimate therapy at this time. Bio Dr. Dileep R. Yavagal, MD, FAHA, FAAN, FSVIN is the Director of Interventional Neurology and Co-Director of Neuroendovascular Surgery at the University of Miami & Jackson Memorial Hospitals and Clinical Professor of Neurology and Neurosurgery at the University of Miami School of Medicine. He has recently been appointed to lead the Neurological Cell Therapy Platform at the Interdisciplinary Stem Cell Institute at the University. Dr. Yavagal is an international thought leader in endovascular therapy for ischemic and hemorrhagic stroke as well as a pioneer in the translation of intra-arterial delivery of cell therapy for stroke. He was the national Co-PI of the first US multicenter clinical trial of Intra-arterial delivery of autologous bone marrow stem cells for ischemic stroke: RECOVER Stroke. He was on the on the steering committee of the SWIFT-Prime and MR RESCUE, both landmark randomized clinical trials of endovascular stroke therapy. He co-authored the landmark 2015 AHA Endovascular Stroke Therapy Guidelines as well as the recent groundbreaking DAWN stroke trial in the New England Journal of Medicine. He is the founder and Past-President of the Society for Vascular and Interventional Neurology (SVIN). He has also co-authored the AHA Policy statement on Stroke Systems of Care. Dr. Yavagal has received several state and federal research grants to study endovascular stem cell therapies for ischemic stroke using small and large animal models of stroke in his research laboratory. He is considered a pioneering researcher the field of intra-arterial delivery of stem cells in stroke therapy. Dr. Yavagal is Chair of the Society of Vascular and Interventional Neurology’s (SVIN) global campaign called Mission Thrombectomy 2020+ (MT2020+) and is leading a no-holds-barred charge to accelerate access and remove geographic disparities to mechanical thrombectomy (MT), an interventional treatment for a common type of disabling stroke. MT2020+ is calling on public health policymakers to increase physical, financial and diagnostic access to MT for patients with disabling strokes. Stem Cell Updates Dr. Yavagal's research is about the use of stem cell therapy to treat stroke patients in the first few days of their stroke -- the acute phase. The process his team is exploring involves placing the donor stem cell at the point of injury by using a catheter through the groin or wrist. This method is similar to his other key projects around mechanical thrombectomy. Both involving similar equipment -- a catheter the surgeon navigates through the patient's arteries to remove or deliver a payload. And it takes place in an angio suite, which is an operating room with special imaging equipment. In a study with the patients' own cells, his team has demonstrated safety, and they have seen results indicating effectiveness, too, even though the study wasn't designed for it. Recent large animal studies have demonstrated that the process is safe. The next step is to do studies to demonstrate the safety of donor stem cells with humans. Then they can explore effectiveness. At this point (January 2021) there are no FDA approved stem cell therapies for stroke patients. But we're getting there. Mission Thrombectomy 2020+ Mechanical Thrombectomy is the gold standard for the treatment of large vessel ischemic stroke, especially when combined with tPA. In mechanical thrombectomy, a surgeon runs a catheter from the femoral artery in the groin or radial artery in the wrist. They navigate to a clot in the brain and drag it out to restore blood flow. tPA is a clot busting medicine that works to break up clots in the body to restore blood flow. When both treatments are used, patients experience much better outcomes. The challenge is they have to be used quickly. Patients have only 90-minutes to 24 hours to get treatment. The actual window varies widely based on the details of the patient's stroke, MRI, general health, and the specifics f the hospital they get to. Most of the time, the window is 3 hours That window has been growing though. When I had my stroke in June of 2017, the window was much smaller. I woke up with symptoms so I had my stroke sometime between 1:00 AM and 7:00 AM. That put me outside the window for the interventions at the time. Six months later the window expanded, and it continues to get better. Would my right MCA at the basal ganglia thrombus been eligible for removal a few months or a year later if my stroke had just held off a little longer? I'm not sure I want to know. Mission Thrombectomy 2020+ is an initiative led by Dr. Yavagal to double the number of thrombectomies performed around the world in both developed and developing countries. A large part of the work involves creating national and regional committees to work with local health ministries. The committees educate politicians, government officials, administrators, and health care influencers on the benefits of mechanical thrombectomy for patients and society. Disability and shortened life is expensive for a community. It's expensive from the loss of the inherent value of human life and quality of life for many survivors. But it's also expensive in sheer economic impact. Long term treatment costs money. Loss of worker productivity costs money. Loss of productivity from caregivers costs money. The opportunity cost from untreated stroke is enormous. In many cases. Prompt mechanical thrombectomy can save lives, reverse some stroke damage, and dramatically reduce the number and severity of disabilities a survivor will live with. When you can make a case for reducing both human and economic costs, you've got a pretty compelling case. That's the case Mission Thrombectomy 2020+ makes around the world. The Jet Plane Comparison Thrombectomy isn't cheap to start up. You need Angio Suites -- specialized emergency room with specialized imaging equipment. It requires super tiny catheters to go through the blood vessels to retrieve the clots. And it requires expert training for neurosurgeons, nurses, and all the other folks who make hospitals work. How can developing nations or less prosperous communities in developed nations afford all that? If they see the value, they'll find a way. Dr. Yavagal compares it to jet travel. Smaller communities or developing nations still often have air service. That's expensive, too. Airport runways aren't just blacktop highways. Airport infrastructure is much more complex and expensive than it looks. Airplanes are expensive. Maintenance on aircraft is expensive. Staff to fly and repair planes require specialized skill. How can so many places afford it? Because the see the value air travel brings. It's critical infrastructure to develop and prosper. And it brings tremendous benefits in both human and economic capital. They find the money because they see the value. And that's the goal of Mission Thrombectomy 2020+. Mission Thrombectomy 2020+ has produced a whitepaper talking about the importance of Thrombectomy and why a community needs to make the treatment available. You can read it here: Mechanical Thrombectomy for Acute Stroke-Building Stroke Thrombectomy Systems of Care in Your Region: Why & How? Hack of the week Find your ducks. We talked with Sarah Parsloe in Episode 111 and Bill Torres in Episode 110. Sarah tells the story of how Bill feeds the ducks every day. Many stroke survivors struggle with being the recipient of care. This is especially true for those of us who were always trying to take care of others before our strokes. When we're not able to do that anymore, it can be tough. Bill found the ducks that needed help after his stroke. Even as he worked to recover, each day he fed the ducks at a local pond. He still does. Taking care of the ducks is a great way to help out after stroke -- it's a way to feel needed and to put value back into the world. Being able to contribute -- to make a difference -- is something we all need. So find your metaphorical or literal ducks and go feed them. Links Where do we go from here? Learn more about Mission Thrombectomy by visiting the home page. Learn more about Dr. Dileep Yavagal and the work he does with his colleagues here: Share this episode with a friend colleague, or relative by giving them the link Don't get best…get better.

    Ep 118 -- Surprise Brain Tumor and as Post-partum Stroke With Ruth Carroll

    Play Episode Listen Later Jan 2, 2021 52:17

      A machine generated transcript is available here A 20+ year old hidden brain tumor made itself known just before Ruth Carroll gave birth. A stroke followed the birth of her son and set Ruth on an unexpected journey as a new mother and young stroke survivor. It's been a few years since all that happened, and I'm delighted to speak with Ruth in this episode. There is something so calming in her demeanor -- even when she's talking about horrific ICU hallucinations. We talk about that, hydrotherapy, family, and more. Bio Ruth Carroll is 36 years old. She's from County Cork in Ireland but live in County Dublin as she married a Dub! They have a son who is 3 & half years old called Bobby.  Prior to this sudden shift in her life direction, Ruth worked in marketing as a brand manager at McDonalds in Ireland Ruth was diagnosed with a brain tumor a week before Bobby was born. Her pregnancy hormones caused the tumor to grow very quickly & suddenly & this unfortunately caused her stroke the very next day after Bobby was born.  (left side affected) Ruth has made a good recovery but still has a long way to go. Ruth's neuro surgeon told her he thought she would be bed bound for the rest of her life. She showed him! Ruth is now walking independently. Her left arm & hand is still paralyzed but Ruth  continues working hard on getting them back!   Ischemic does not mean clot Most ischemic strokes are due to a clot forming in a blood vessel, so most people think that's what ischemic means. It's not quite true, though. Ischemia actually refers to a lack of oxygen getting to the cells. Most of the time that's due to a clot, but not always. In fact, it's sometimes therapeutic, like in Remote Ischemic Conditioning which we talked about in episode 55. In Ruth's case, her stroke was ischemic, but there was no clot. Instead, her brain tumor wrapped around an artery from the outside, cutting off the flow of blood to that part of her brain. Most treatments for ischemic stroke involve clot busting medications like TPA or clot removal via mechanical thrombectomy. Neither of those therapies would have helped Ruth because there was no clot to break or remove. They had to pursue surgery to remove the tumor and restore the flow of blood. Hydrotherapy Hydrotherapy is an important part of Ruth's recovery program. Hydrotherapy typically takes place in a special heated pool with a therapist who can help the survivor safely complete the exercise program. The warm water helps the muscles relax and relieve tone and spasticity. The buoyancy helps reduce balance issue so the survivor can focus on their movement. The water resistance ensure the muscles still get a good work out. And the water reduces the risk of injury from a fall. Finally, a hydrotherapy pool will typically have the accessibility equipment to make it safe for a person with disabilities to enter and leave the pool. Special pools and specially trained therapists help survivors get special results. Hack of the week. Mirroring what Kristen Aguirre said in episode 114 (, Ruth suggests looking for shampoo and related products that have a pump. When you're already living with paralysis and working hard in the shower to, you know, not fall, opening bottles and pouring soap without spilling the product or yourself is exhausting. So don't do it. When you choose your product, look for bottles that come with pumps. They make it much easier to dispense the product. If your favorite product doesn't come with a pump option, add one yourself. You can find generic bottle pumps on line. Here's one example (affiliate link): amzn_assoc_tracking_id = "currentlybill-20"; amzn_assoc_ad_mode = "manual"; amzn_assoc_ad_type = "smart"; amzn_assoc_marketplace = "amazon"; amzn_assoc_region = "US"; amzn_assoc_design = "enhanced_links"; amzn_assoc_asins = "B00B8XWI7G"; amzn_assoc_placement = "adunit"; amzn_assoc_linkid = "30419a8da470bac355e5e10f93659817"; // Links Where do we go from here? Follow Ruth on Instagram at Ruthie_Carroll84 to join her on her journey and see adorable pictures of her family. For more stroke related books, gadgets, gizmos, and bottle pumps, visit the Strokecast Gift Guide at Share this episode with a friend, colleague, or relative by giving them the link Mask up and stay safe in 2021 Don't get best…get better.

    Ep 117 -- Industrial Design and an Art Tram

    Play Episode Listen Later Dec 24, 2020 61:41

    English transcript here. I read through my daily Google News Alert about stroke a couple months back and came across an article about the Mobile CT scanner. It's designed to mount in ambulances and aircraft. It helps the medical team confirm a stroke diagnosis and start treatment even before the patient gets to the hospital. I reached out to one of the designers and that ushered me into the fascinating world of Drs. Nyein Chan Aung and Thinn Thinn Khine. Bio Photo by James HH Morgan Nyein is an industrial designer, design researcher and artist. He has given himself a mission to "Make Cool Stuff", and has been following that mission since 2005. As a result, he's won several major design awards for products in aerospace, healthcare and camping. He's currently a senior design researcher at Monash University's Design Health Collab, where he oversees the design of high-impact healthcare services and products. Thinn Thinn is an endocrinologist specializing in geriatrics endocrinology. She's been practicing medicine since 2006, and has worked in Myanmar, Jamaica, the US and Australia. She received multiple scholarships and travelling fellowships to be trained as a physician-scientist in the field of the endocrinology in ageing. Thinn Thinn is also a visual artist. She's exhibited her work in multiple solo art exhibitions in Victoria, and raised funds to support geriatric medicine, aged care mental health and palliative care departments in Monash Health and Barwon Health. Mobile CT Scanner The mobile CT Scanner, developed by Monash University and Micro-X mounts in an ambulance, aircraft, or other vehicle. When the EMTs suspect a stroke, they can bring the patient to the vehicle, do the scan, and start heading to the hospital. While they're on the way, they can transmit those image on ahead so the hospital staff knows what's happening and can stage the appropriate resources. A remote neurologist could even instruct the EMTs to begin the appropriate treatment. You can read more about the system here: Palliative Care Unit The death of Thinn Thinn's mother from stroke inspired the couple to make things easier for others going through these circumstances. The design the Palliative Care Unit. It's a piece of furniture that can be rolled into a patient's room so family members can sleep there when the COVID-19 situation  is under  control. In the interim, it's a place to support video conferencing and personal items from the patient's home. You can see more in this video: Art Tram Project Melbourne invited artists to submit work to be featured on trams (street cars) that travel around the city in 2019. It was the perfect project for Nyein to submit the portrait he did of Thinn Thinn sipping tea at the Supper Inn Chinese Restaurant. You can see Thinn Thinn's face zipping around the city larger than life in this video: Books Nyein referenced a couple book in our conversation. Chris Voss is a former FBI hostage negotiator who's written a book about how to negotiate in everyday life. amzn_assoc_tracking_id = "currentlybill-20"; amzn_assoc_ad_mode = "manual"; amzn_assoc_ad_type = "smart"; amzn_assoc_marketplace = "amazon"; amzn_assoc_region = "US"; amzn_assoc_design = "enhanced_links"; amzn_assoc_asins = "0062407805"; amzn_assoc_placement = "adunit"; amzn_assoc_linkid = "08f7668ad61d3230d3cd077558f74830"; // Walter Isaacson is a historian who wrote about Leonardo da Vinci and The Last Supper. amzn_assoc_tracking_id = "currentlybill-20"; amzn_assoc_ad_mode = "manual"; amzn_assoc_ad_type = "smart"; amzn_assoc_marketplace = "amazon"; amzn_assoc_region = "US"; amzn_assoc_design = "enhanced_links"; amzn_assoc_asins = "1501139169"; amzn_assoc_placement = "adunit"; amzn_assoc_linkid = "4b1b3286bbe651d6fef62f67df0d890d"; // (Affiliate links) Hack of the Week Thinn Thinn's recommendation is to consider the whole person. Regardless of the condition leading to disability, we are all, first and foremost, people with lives, history, families (genetic or chosen), and dreams. It's easy to get caught up in the specific medical details of a brain injury, but focusing exclusively on that misses the core needs of the person. Whether the medical situation is recovery oriented or palliatively oriented, the whole person is what matters. Links Where do we go from here? Check out Nyein and Thinn Thinn's website to learn more about this power couple. For more books and gadgets, check out the Strokecast Gift Guide at Don't get best…get better.  

    Ep 116 -- Teaching Yoga after a Stroke with Leslie Hadley

    Play Episode Listen Later Dec 7, 2020 48:15

    (Click here for a machine generated transcript) Leslie Hadley went from corporate executive to Yoga  teacher to stroke survivor and back to yoga teacher. Along the way, she became an author, life coach, and tapping teacher (not the dance -- the emotional freedom technique).  She shares her story this week, and I share a bunch of my own updates. You can find Leslie's book on Amazon at (affiliate link) Bio From Leslie's website: How long have you been doing what you do, and how did you become a Transformational Teacher? To answer this question, it’s probably best that I share with you a defining moment, and resulting compelling story. I was a single mom, divorced from an abusive relationship, in management, working in a high paying corporate job with people from all over the world. I was beyond shocked when one day they laid me off with two weeks’ notice. They didn’t pack my stuff so the 2 weeks gave me creating time! I was teaching yoga part-time during all of this, and my daughter was a freshman in high school.  I was transferred all over the country, but this time, I promised her I wouldn’t relocate again. Initially, I was in planning mode. Once the adrenaline from that wore off, I felt rejected, afraid and overwhelmed. All I could think about was, “What’s next” “How am I going to pay my bills?” My self-esteem suffered. I am a survivor, so I pulled up my lady bootstraps and got to work. In hindsight, I realized getting laid off from my corporate job was a gift. I liked the income, so I never would have left on my own. I know in my heart if I stayed in corporate I would have never lived out my passion and purpose; but just as important, I have learned about me. I was working 70 hours a week. On weekends, my daughter would come with me to the office. She learned to fax at 5 years old! My daughter once told me she never wanted to do what I did - work 70 hours a week and sell my soul. To this day, she has not and has instead chosen to work with kids as a librarian. I taught her to follow her dream and live her passion. Sometimes what seems tragic at the time is just the wake-up call we need. I made a commitment to myself, as I did when I started my yoga practice 20 years ago. My commitment was to heal myself from numbness in my legs. Yoga helped me heal, and I was determined! I will turn my yoga passion and teacher training into teaching classes. I made a list of how I was going to do it. In a short amount of time I was teaching 35 classes a week! I was also practicing Thai yoga massage and became a Reiki Master. In spite all of my hard work, I wasn’t making enough money teaching. I wrote in my journal that I would pay my bills and more. I manifested much more money, sharing my gift and helping people. I was actually living my passion and sharing peace and joy. Five years after I started teaching Yoga, I felt in my heart that there a missing piece in my life. I was passionate about what I was doing, but I felt I could still do more to serve women. I decided to enroll in a nutrition and coaching program. I loved all aspects of the program but coaching really spoke to me. After graduation, I enrolled in a transformational coaching program - Level 1, then Master. Yes, once again, my life changed, and I found that I loved experiencing the transformation in myself and witnessing struggling women transform themselves. The freedom to be you, empowered but easy! Today, I live in compassion land. The shocking experience of going through divorce, raising my daughter at a very young age, being laid off from my high paying corporate job, healing physically and emotionally brought me to where I am today – coaching people like you on exactly what to do to gain self-esteem, have more love, trust and caring in your lives, so you can gain more happiness, healthy lifestyle and have hope for the future, called empowerment! amzn_assoc_tracking_id = "currentlybill-20"; amzn_assoc_ad_mode = "manual"; amzn_assoc_ad_type = "smart"; amzn_assoc_marketplace = "amazon"; amzn_assoc_region = "US"; amzn_assoc_design = "enhanced_links"; amzn_assoc_asins = "B087SJRB8Q"; amzn_assoc_placement = "adunit"; amzn_assoc_linkid = "b9260f7986dcf731554f4d6f1c5c2b44"; Feldenkrais Fedenkrais is a form of therapy that's been around for several decades. I'm not sure I would describe it as mainstream, but it does have a lot of enthusiastic supporters in the survivor and therapist communities. What's It Like? I recently appeared on Hannah's What's it Like podcast. The show features folks who have been through a significant life experience and who want to share what it was like. You can find the show in your favorite podcast app, or just listen right here: Strokecast and OneNote OneNote is a virtual 3-ring binder. I've been using it for nearly 20 years in various capacities. I also use it to manage this show. I recently wrote a blogpost that goes deep into this process. You can read about it here: Strokecast Gift Guide If you're looking for gifts for yourself or someone else in your life, check out the Strokecast Gift Guide. You'll find books by Strokecast guests, other books related to stroke, tools to aid in recovery, and tools to make life a little bit easier. All these items are available on Amazon through my affiliate links so check it out at Hack of the Week A wagon is a great tool for getting stuff done. With hemiparesis, it's even more useful.  First, when I use the wagon, I don't need to use my cane. The wagon gives me the stability I need But really, the key is how I use it for just simple things: Bringing packages up from the lobby Bringing in groceries from the car Moving larger things around the apartment Basically, if it takes two hands or arms to move, I'm likely to use the wagon. Plus it's great even for folks who don't live with disabilities. This one is very much like  wagon we just picked up: Links Where do we go from here? Check out Leslie's website to learn more about her background, training programs, and approach to coaching. Visit the Strokecast Gift Guide at for your personal and gift-giving shopping needs Learn about how I use OneNote to create an episode by visiting Check out the What It’s Like podcast for a variety of stories here. Don't get best…get better

    Ep 115 — Stronger After Stroke with Peter G. Levine

    Play Episode Listen Later Nov 10, 2020 66:16

    “Stronger After Stroke” is one of the most recommended books for stroke survivors by stroke survivors. It is a roadmap for recovery after leaving the hospital. Peter G. Levine talks about the importance of repetition to neuroplasticity. He dives deeply into Dr. Edward Taub’s Constraint Induced Therapy, and what stroke survivors can learn from musicians and athletes. And Levine joins us in this episode of the Strokecast. Bio (From Pete’s Amazon author page) Peter G. Levine is a researcher, author, clinician, adjunct professor, and science communicator. His career in clinical research has been dedicated to finding and reporting on the best systems for driving post-stroke brain plasticity. For two decades Levine has tested emergent stroke neurorehabilitation options including EMG-based gaming, wearable robotics, mental practice, functional electrical stimulation, transcranial magnetic stimulation, and modified constraint-induced therapy (mCIT). He was the lab co-director at the University of Cincinnati Academic Medical Center, and a Research Associate at Kessler Institute for Rehabilitation. He continued his clinical research with The Ohio State University B.R.A.I.N. lab. Levine communicates what he’s learned in research through his blog, dozens of magazine and journal articles, hundreds of professional talks on stroke recovery and brain injury, as well as his book, Stronger After Stroke. Constraint Induced Therapy Constraint Induced Therapy (CIT) at the most basic level, is about encouraging the survivor to use an affected limb by forcing its use. At one level, we all know we’re supposed to use our affected limbs as much as possible. Of course it’s not always easy. In my case, I try to do something like flip a switch or open a door three times with my left hand. After three tries, I let myself use my unaffected limb. That way I get the practice and I don’t get too frustrated when I can’t do something yet. CIT takes that to the next level. It involves restricting the unaffected limb with a sling or other mechanism to force the use of the affected limb for hours a day of therapy. It should be done under the supervision of a therapist because there is certainly a risk of falling or other injury when the unaffected limbs we rely on more than ever are suddenly restricted. But forcing deliberate use of an affected limb is the best way to bring it back on line. Practice One of the key themes we talked about was the importance of practice and repetition. Musicians and athletes (like Peter G. Levine and Stephen Page)  know the importance of repetitive, deliberate practice. Professionals and amateurs who want to be the best they can, practice. And the enjoy it. Spending hour after hour working on a segment of a song or to shave half a second off a run is how they build the skills they need and want to acquire. Malcom Gladwell in his book “Outliers” popularized the idea that to develop expertise in something takes 10,000 hours of practice. And deliberate practice at that. It’s a theory based on the work described in The Cambridge Handbook of Expertise and Expert Performance. Developing skills and particular motions after stroke is similar. It requires more and more repetitions. As Pete shares, it takes 1200 repetitions to develop a single motion in a single joint. Of course walking requires dozens of joints, muscles, and motions. So multiply all those 1200s against one another, and get to work! Homunculus The homunculus is a representation of the brain and various parts of the body. The more you use a part of the body, the more neurons it takes up in the brain. For example, the hands and tongue take up more space in the than the elbow and pinkie toe. The more time and energy you dedicate to something, the more space in your brain is dedicated to that task. For example, a homunculus of my brain would likely show a much larger segment dedicated to speaking than to throwing a baseball. One way I think about how this applies to survivors (and I may be stretching the homunculus analogy) is that a skill from the prestroke days that a survivor was an expert at may come back before a skill one had limited experience with simply because despite the damage there were simply more nerves dedicated to it. As you continue to work on a skill post stroke, a larger portion of the brain will be dedicated to it. More nerves, dendrites, and synapses will become involved. This is neuroplasticity at work. Four Lessons for Recovery Pete summed up his approach and book in 4 lessons. Recovery takes a lot of repetitive practice. Recovery takes a lot of visualization. Don’t expect miracles. Don’t let the perfect be the enemy of the good. Hack of the Week Pete uses a strap with Velcro as a simple, low-cost AFO. It’s a tool that helps lift the toe to make walking smoother and combat foot-drop. The nice thing about a solution like this is that it also gives you access to a wider assortment of shoes while reducing the risk of tripping. Links Stronger After Stroke Blog Stronger After Stroke on Amazon Pete on Research Gate Stephen Page Kessler Institute Taub Therapy Clinic Dr. Edward Taub Dr. Jill Whitall Signe Brunnström on Wikipedia Brunnstrom Stages of Stroke Recovery Modified Ashworth Scale Homunculus Brian Harris on Strokecast Where do we go from here? So check out Pete’s book  here and blog here. To get better, continue practicing and doing those exercises your PT and OT recommended. If you think you reached a plateau, try some different exercises, and keep going. Share this episode with someone you know by giving them the link Don’t get best…get better Strokecast is the stroke podcast where a Gen X stroke survivor explores rehab, recovery, the frontiers of neuroscience and one-handed banana peeling by helping stroke survivors, caregivers, medical providers and stroke industry affiliates connect and share their stories. *Amazon links are affiliate links. I may receive compensation for purchases made through them.

    Ep 114 -- Naps, Gratitude, and Yoga with Kristen Aguirre

    Play Episode Listen Later Nov 2, 2020 37:32

    Kristen Aguirre was working as a TV reporter and anchor in Denver, CO,  when she had her stroke. What followed, of course, changed her life. She spent months in rehab, eventually returned to the air. She has since left that role and now focuses on her recovery, her workouts, and working with other survivors. We cover all that and more in this episode. Bio Kristen Aguirre is an emmy nominated latina journalist turned young stroke survivor. At the age of 31 Kristen suffered an ischemic stroke. It left the entire left side of her body paralyzed. Her doctors told her she would probably need a wheelchair the rest of her life. Despite the prognosis Kristen kept pushing and never lost hope. After months in the hospital and therapy, Kristen is now back to running, lifting weights and rebuilding her career. She uses her story to motivate others to never stop pushing and how to hold onto hope in daunting times. Gratitude One of the topics Kristen talks about is gratitude. As part of her daily prayer and meditation ritual she makes certain to find something to be thankful for each day. At the very least, we’re here. We woke up today. And that’s the start of any new amazing journey. Neurofatigue After a stroke, naps take on new importance. Our brains, working with fewer optimized resources, burn a lot more energy.  Plus, a lot of the work of recovery and neuroplasticity can only happen as we sleep. I talked about it in the episodes on this page. It can be a big thing in a person’s life. While I don’t deal with it as much these days, it still pops up from time-to-time (usually when I’ve been getting less sleep for other reasons…go figure). If I have another injury it will come roaring back with a vengeance. When it does, it’s not like being tired. There’s no reserve bank of energy to dig into. There’s not an option to push through, Sleep suddenly becomes essential. Part of living with stroke is not having a reserve pool of resources or bunch of spare spoons. Naps are the natural result of looking into that pool and finding it empty. Like Minded Kristen teaches a women’s empowerment workshop in Jane Connely’s Like Minded program. Several Strokecast guest teach in that program. You can find those interviews with Jane, Joe, Ella, Vince, and now Kristen at Http:// To learn more about this program for brain injury survivors that comes from the mind of Heal the Brain with Jane, visit the program here: Beauty and Her Brain  Kristen is starting her own podcast focused on issues women face in stroke world. Kristen herself talked about navigating post stroke life and balancing her deficits with her appearance and with getting comfortable in her new skin. While she’s working on the show, she’s already profiling some of these amazing women on the Instagram page for the show here: Once the show is live I look forward to listening to it and adding it to this list of stroke-related podcasts. Links Kristen Aguirre on Instagram Beauty and Her Brain on Instagram Kristen Aguirre website Kristen on LinkedIn Kristen on Muck Rack Kristen on Twitter Craig Hospital Talking Yoga Like Minded with Heal the Brain with Jane Like Minded Instructors on Strokecast Neurofatigue on Strokecast Other Stroke Podcasts Where do we go from here? Follow Kristen on Instagram @KristenAguirre Tell us what you’re grateful for this week and tag @KristenAguirre and @Bills_Strokecast on Instagram or @KristenAguirre and @CurrentlyBill on Twitter so we can celebrate your gratitude with you. Subscribe to Strokecast for free in your favorite podcast app so you never miss an episode Don’t get best…get better. Strokecast is the stroke podcast where a Gen X stroke survivor explores rehab, recovery, the frontiers of neuroscience and one-handed banana peeling by helping stroke survivors, caregivers, medical providers and stroke industry affiliates connect and share their stories.  

    Ep 113 -- Global Consciousness with Thriller Author Bevan Frank

    Play Episode Listen Later Oct 19, 2020 38:34

    What if you could change the world with your thoughts? Or get enough people together thinking the same thing to change the fabric of reality? Bevan Frank goes deep on this idea in his debut novel. Bevan published his first novel, The Mind of God in 2015. It’s a thriller in the spirit of Dan Brown where he explores the idea of Global Consciousness. And then his world turned upside down with a stroke. We talk about that concept and the power of taking care of a dog in this episode. Bio Bevan Frank has a BA degree in English and Political Studies as well as a postgraduate LLB law degree, both from the University of Cape Town. After qualifying as an attorney Bevan decided to follow his passion and opted down the path of writing and editing. He has worked as a business magazine editor, journalist, writer, plain language practitioner and communications consultant. His articles have been published in numerous publications locally and globally. Bevan lives in Hertfordshire with his wife and children. Bevan’s award-winning debut book The Mind of God (A Thriller Novel) is an Amazon #1 Best Seller. He is currently recovering from a stroke and hopes to get going with his second thriller once he emerges from the haze. Amazon Music and the Strokecast Strokecast, like thousands of other podcasts, is now available on Amazon Music. This doesn’t affect where you listen today; it just gives you one more option for how you and/or your friends can consume the podcasts you love. You can listen to the show here: Hack of the Week Bevan suggests getting a dog.  Lexi early on gave Bevan a reason to get out of bed in the morning. He had to feed and walk the dog. And if that’s all he could do in a day, at least it’s a start. After stroke when we are thrust into the world of disabilities, we suddenly may have people who take care of us. And that’s great; we need it. But it can also be a hard transition if we’ve led the kind of life where we take care of others. To suddenly not be in that position anymore while we also have to reconsider what it means to the career we may no longer be able to pursue or the family we may no longer be able to support is hard. Plus we may feel that strangers and people we know are now looking at us differently. The see us as a victim, a patient — a cripple. We may feel they look at us with pity. A dog does none of that. A dog is just happy to be there with you. And it gives you a reason to get out of the bed. Even if other people tell you not to worry about them, you still have the responsibility of caring for that dog to the best of your ability. A couple weeks ago, I talked with Bill Torres and he talked about feeding the ducks every morning. It’s the same concept. Bill and Bevan made caring for another creature a part of their recoveries. Here’s a picture of Lexi. Links The Frank Gazette The Mind of God on Amazon Bevan on Facebook Bevan on Twitter Bevan on Twitter The Global Consciousness Project Spoon Theory The Fox, by Frederick Forsyth Sunflower Lanyards Bill Torres and ducks on Strokecast One-handed Lady Golfer on Strokecast   Joe Borges on Strokecast Where do we go from here? Check out Bevan’s book on Amazon here , and visit the Frank Gazette to learn more about Bevan. Subscribe to the Strokecast in Amazon Music or your favorite podcast app so you never miss an episode. Don’t get best…get better. Strokecast is the stroke podcast where a Gen X stroke survivor explores rehab, recovery, the frontiers of neuroscience and one-handed banana peeling by helping stroke survivors, caregivers, medical providers and stroke industry affiliates connect and share their stories.

    Ep 112 -- Stroke Education Resources (Listener Q&A)

    Play Episode Listen Later Oct 2, 2020 29:39

    Speech Language Pathologist Lauren Schwabish reached out to me on Instagram with a few questions. I answer them in this episode. If you  have questions you’d like me to address, you can email or message me on Instagram where I am Bills_Strokecast. Do you have tips on what education was most effective for you, or your survivor community? One of the first places I went was to podcasts. I found the Enable Me show from Australia and the aphasia-centric Slow Road to Better first, but not much else. It’s why I eventually started the Strokecast. I wanted it to be the podcast I wished I had found when I was in the hospital. Now, of course There are a lot more. If you want to hear more stroke related podcasts, visit I also learned a lot from books. The first two survivor books I read were My Stroke of Insight by Dr. Jill Bolte Taylor and Healing into Possibility by Alison Shapiro. I’ve also learned a lot reading memoirs from Strokecast Guests Christine Lee, Ted Baxter, Marcia Moran, Julia Fox Garrison, Janet Douglas, and Debra Myerson. You can hear my interviews with them and the stroke adjacent authors I’ve interviewed here. I also learned a lot diving into books about neuroplasticity and anatomy reading The Brain’s Way of Healing by Norman Doidge, Rewire Your Brain by John Arden, and Anatomy and Physiology Made Easy by Phillip Vaughan. If you use a Kindle or other eReader, be sure to check with you local library’s website because you may be able to check out eBooks without ever leaving the house. And, of course, doctors and therapists are a great resource. Ask them lots of questions to learn more. Most of them love talking about this stuff. What educational opportunities helped you the most as you left the hospital? What didn’t? Creating my own content was quite helpful. I began posting detailed descriptions of stroke stuff to Facebook. One of the best ways to learn something is to teach it. It reinforces the details, and it also helped me realize when I didn’t understand something and needed to ask more questions. Plus it engages other parts of the brain. It’s one thing to take in information, but then to teach it you have to route that information to the motor functions of the brain so you can type and the language center so you can choose the words. Support groups in the pre-quarantine days were also a fantastic place for more information. Plus you’re among people who get it. At a support group, folks understand what you’re going through. While staying inside, you can also join several of the dozens of stroke related Facebook groups. Be sure to search for them. These groups may have a few members or thousands of members. The leadership and members will have a huge impact on the character of the group, so try a few to find the ones that best mesh with your personality. Finally, check out #Stroke and #StrokeSurvivor on Twitter and Instagram. I’ve found that Twitter is likely home to more professionals whereas Instagram is more about the journeys of individual survivors. I’m preparing a lecture on how to best advocate for yourself when communicating with health care providers. Any hot takes? First of all, you have to advocate for yourself. Ultimately you are responsible for your own recovery and getting the support and care that you need. When you go into the doctor’s office, remember they are getting paid to provide the care. This is a business meeting. Like any business meeting, that means you need to prepare in advance, take notes during, and follow up on your activities afterwards. Prepare ahead by assembling key information like: Blood pressure readings Symptoms List of medications Questions you want answers to. You can even provide this information ahead of time to help them prepare. During your appointment, feel free to take notes. You can also bring a partner with you to help retain information. You can even ask if you can record the appointment. They might say no,  but you can still ask. You also need to recognize that the medical field is highly silo’d. By that I mean they are experts in their narrow field, but they may not be as familiar with other fields. That means you may be relaying information from one provider to another. You may be teaching your primary care physician about stroke or carrying information from a neuropathologist to a ph6ysiatrist. Finally, if you’re not comfortable with a specific provider, get a different one. Hack of the Week Patricia Geist-Martin (from Falling in Love with the Process Part 2) shared another technique that Bill Torres (from Falling in Love in the Process Part 1) used to deal with spasticity in his hand. He piled books on top of his hand while watching TV. Straightening out his finger and then putting weight on top was one reason his hand is no longer locked in a fist. Links Bill on Instagram Lauren Schwabish on Instagram Stroke Podcasts My Stroke of Insight Healing Into Possibility Tell Me Everything You Don’t Remember Relentless Stroke Forward Don’t Leave Me This Way: Or When I Get Back on My Feet You’ll Be Sorry A Wonderful Stroke of Luck: From Occupational Therapist to Patient and Beyond Identity Theft: Rediscovering Ourselves After Stroke The Brain’s Way of Healing Rewire Your Brain Anatomy and Physiology Made Easy Author Interviews on Strokecast Instagram #Stroke Instagram #StrokeSurvivor Twitter #Stroke Bill Torres on Strokecast Patricia Geist-Martin on Strokecast Where do we go from here? If you have questions you’d like me to address, email or message me on Instagram where I am @Bill_Strokecast Share this episode and answers with someone else by giving them the link Subscribe to Strokecast in your favorite podcast app so you never mess an episode Don’t get best…get better Strokecast is the stroke podcast where a Gen X stroke survivor explores rehab, recovery, the frontiers of neuroscience and one-handed banana peeling by helping stroke survivors, caregivers, medical providers and stroke industry affiliates connect and share their stories.

    Ep 111 -- Falling in Love with the Process (Part 2)

    Play Episode Listen Later Sep 24, 2020 72:58

    How do you tell someone’s story in a book without actually writing your story of learning their story? What is qualitative research? We answer those questions and more as I nerd out with Drs. Patricia Geist-Mart and Sarah Parsloe about Communication theory. In Episode 110, I talked with Bill Torres, the subject of the book, “Falling in Love with the Process.” You can listen to that episode here. In this episode, I talk with the authors of the book, Dr. Patricia Geist-Martin and Dr. Sarah Parsloe, professors of Communications at San Diego State University and Rollins University respectively. The result is a wide ranging discussion that let me nerd out a bit about Communication Theory, which is something I haven’t talked a whole lot about since college. We discuss topics like: What communication is and how it defines relationships The nature of qualitative research The challenges in telling someone else’s story Cyberactivism Ableism and intersectionality Inspiration porn …and much more And you’ll get to hear more about what it’s like to work with Bill. Bios Patricia Geist-Martin (Ph.D. Purdue University) is a Professor Emerita in the School of Communication at San Diego State University. Her research examines the stories people tell in making sense of their lives, particularly in their journeys through health and illness. Falling in Love with the Process: Cultivating Resilience in Health Crises: A Stroke Survivor’s Story (2020), is Dr. Geist-Martin’s fifth book. Website: 150 Sarah Parsloe (Ph.D. Communication, Ohio University) is an Assistant Professor in the Department of Communication at Rollins College, Winter Park, FL.  Her research examines the ways in which people make sense of identity threats that arise from experiences of disability and chronic illness, including uncertainty, stigma, and prejudice against people with disabilities (ableism). She is particularly interested in studying the communication processes of (self-)advocacy. Movies We talked briefly about a couple movies that came to mind while talking with Bill. Here are the trailers. Lessons Learned Patricia spoke about the about the amazing resilience she learned from Bill. The fact that we can go through so much and then still go out and do the work of recovery is amazing. And then to go beyond our own recovery to helping others as Bill has done is a powerful thing. Sarah talked about two lessons she learned from Bill. The first is the importance of relationships. Bill has friends he’s known for decades and he continued to feed those relationships throughout his life both before and after his stroke. And when he needed them — they were there. Maintaining relationship later in life goes a long way to not only enriching that live but also in feeding health. Speaking of feeding one’s health, Sarah also learned from watching Bill feed the ducks. He has something he cares about and takes care of every day. After stroke, it’s easy to think we can’t take care of others because we have to be taken care of, but that’s a dangerous path to go down. Taking care of others can be an important way to drive our own sense of importance (in a good way) even if it’s in a different context. Maybe we can’t take care of others the same way we could before stroke, but maybe there’s a new way of providing moral or emotional support while still getting support and care from others. Even if that means finding some hungry ducks. From my perspective, the worst thing that can happen to a person is to have nothing to do. It’s fine in limited doses, but having nothing to — no reason to start the day — can lead to a nasty spiral of depression. It’s why so many people die within a year of retiring from their jobs. Or maybe you’re just getting a peek at my own anxieties there. Cyber Activism We talked a bit about cyber activism and how social media has given disabled people and people with disabilities a way to raise their concerns and say ableism and Eugenics are not ok. It’s a tool that means this community will not be ignored. Twitter hashtags are some of the places where these stories come out, including: #AbledsAreWeird #CripTheVote #NoBodyIsDisposable We talked about Dr. Kimberlé Williams Crenshaw who developed the theory of Intersectionality when discussing issues of race, disability, gender and more. You can read more about her work here: Talila A. Lewis is a lawyer and activist focusing on deaf wrongful conviction cases Talila founded the HEARD organization. You can read more about Talila’s work here: Hack of the Week Singing is sometimes a way to get words out for folks who struggle with aphasia. Because of the way the brain is wired, singing can get based block in the traditional language centers. If you find yourself fighting to speak the words, try to do a little song. Links Falling in Love with the Process Falling in Love with the Process on Facebook Falling in Love with the Process on Amazon Patricia Geist-Martin, Ph.D. on the web Patricia Geist-Martin, Ph.D. on SDSU Patricia’s email Sarah Parsloe, Ph.D  at Rollins University Sarah Parsloe, Ph.D on research Gate Sarah’s email Bill Torres on Strokecast Patricia and Bill on the Hand In Hand show Neuro Nerds Podcast Joe Borges on Strokecast Pathos, Logos, and Ethos Arrival — Trailer Big Fish — Trailer #AbledsAreWeird on Twitter #CripTheVote on Twitter #NoBodyIsDisposable Kimberlé Williams Crenshaw on Wikipedia TL Lewis website Heard Alice Wong on Twitter Autoethnography on Wikipedia,and%20social%20meanings%20and%20understandings. The Hero’s Journey on Wikipedia Where do we go from here? Order the book from the publisher or Amazon if you want to hear more about Bill Torres and falling in love with the process. Share this episode with academic, professor, or college student in your life by giving them the link Follow me on Instagram at Bills_Instagram. Don’t get best…get better. Strokecast is the stroke podcast where a Gen X stroke survivor explores rehab, recovery, the frontiers of neuroscience and one-handed banana peeling by helping stroke survivors, caregivers, medical providers and stroke industry affiliates connect and share their stories.

    Ep 110 -- Falling in Love with the Process (Part 1)

    Play Episode Listen Later Sep 17, 2020 31:14

    At 85, stroke survivor Bill Torres works out every day, feeds the ducks, and helps other survivors along the way. He has fallen in love with the process of getting better. This week, we hear Bill’s story. Bill Torres had a stroke at 71. Fourteen years later, he’s recovered and at age 85 spends his days feeding the ducks, hitting the speed bag, working out, and helping stroke survivors around the country navigate their own process of stroke recovery. This episode is a little different. Bill just started telling stories and sharing his wisdom and who am I to get in the way of that with pre-prepared interview questions. I just wanted to hear more. So this episode highlights the core things that Bill and I talked about. I hope you find Bill as fascinating as I do. Bio Bill Torres grew up in San Diego, where he now lives. His career took him to places as varied as Long Island, NY; Jakarta, Indonesia; and a school in Venezuela. He taught English, sold franchises, brought Arby’s to large parts of the Pacific Northwest, and brought racquetball to the US. Bill survived a stroke at age 71 and now, at age 85, helps other stroke survivors along on their own journey of recovery. Bill is the subject of the new book, Falling in Love with the Process, by Dr. Patricia Geist Martin and Sarah Parsloe. He feeds the ducks every day. Bill’s story Hack of the Week Bill recommends old-school hair curlers as great tools for dealing with hand tone and spasticity. Combined with exercise, they help folks straighten out their finger and keep their hand open. If you’ve got some laying around, give them a try. Or ask Bill. He probably has a few in his car. Links Bill’s website Bill’s video Call Bill 619-694-9595 Peter Levine’s Stronger After Stroke Blog Tony Gwynn on Wikipedia Falling in Love with the Process Falling in Love with the Process on Amazon Where do we go from here? Check out Bill’s video above or visit to learn more and connect directly with Bill. Look for Episode 111 after September 23 to hear authors Drs. Patricia Geist-Martin and Sarah Parsloe share their story of working with Bill. Fall in love with your own process of recovery Don’t get best…get better

    Ep 109 -- Play Games to get that Hand Back with Neofect CEO Scott Kim

    Play Episode Listen Later Sep 10, 2020 41:16

    It’s been awhile since I checked in with the folks at Neofect so in this episode I chat with CEO and co-founder Scott Kim. If you follow the technology and gear around rehab, you’ve probably heard of Neofect. They make a product called the Smart Glove. I talked about it with OT Lauren Sheehan a couple years ago at You can listen at that link. The Smart Glove is a plastic exoskeleton with very sensitive sensors that you wear on your stroke affected arm. Then you play video games with that arm. The sensors detect the slightest motion and translate that motion into in-game activities. It encourages you to do more therapy by making it more engaging. It makes getting those thousands of reps in that much easier. We talk about that, enhancements to the product, new products, and some of the decisions a CEO has to make Bio Scott Kim is the co-founder and CEO of Neofect USA, a digital health company that creates customized digital rehabilitation solutions for patients with neurological and musculoskeletal injuries. Scott met his business partner, Hoyoung Ban, at the Darden Business School at University of Virginia and they quickly connected over personal experiences with the healthcare system and rehabilitation. Scott was born with spina bifida, so after having major surgery on his back as a child, he spent tons of time in rehabilitation. After moving to the U.S. for college, Scott started to notice the gaps in the healthcare system — and that gave him an idea of how he could contribute and make the process more engaging. Before starting Neofect, Scott worked as a management consultant, a product manager in the software industry and for mobile gaming companies such as GREE, Z2Live (which is now Activision Blizzard) and 505 Games. He founded a couple startups before using all his experience to create Neofect in 2010. Scott now leads a national team from Neofect’s U.S. headquarters in San Francisco. About Neofect Neofect’s creates gamified rehabilitation solutions for patients recovering from stroke and other neurological and musculoskeletal conditions. This started with the Neofect Smart Glove and has progressed to include the Neofect Smart Board, Neofect Smart Pegboard, Neofect Smart Kids, Neofect Cognition, Neofect Smart Balance, and the NeoMano robotic glove for functional assistance. They also have a new app: Neofect Launches Connect, a Companion App for Stroke Rehabilitation Traditional rehabilitation exercises are repetitive and monotonous and don’t engage or encourage patients during recovery. This can make patients less likely to stick with programs if they’re not feeling excited or seeing measurable improvements. Each Neofect rehabilitation solution is designed with gamified therapy, using content that’s carefully curated with the help of expert therapists. Every game invigorates the muscles and stimulates visual and auditory senses, reinforcing cognitive functions and accelerating neuroplasticity. Neofect’s devices are available through physical therapy or occupational therapy, and most can also be used at home. They’re making rehabilitation more fun and engaging, and helping people recover their range of motion. No Barriers Scott talked about his work with the No Barriers organization. Here’s how that group describes itself: The mission of No Barriers is to fully unleash the potential of the human spirit.  Through transformative experiences, tools and inspiration, we help people embark on a quest to contribute their absolute best to the world.  In the process, we foster a community of curious, brave and collaborative explorers who are determined to live the No Barriers Life. You can learn more about No Barriers here: Hack of the Week Remember that you are not alone. It may seem like it, but there are hundreds of thousands of new stroke survivors in the US every year and millions more around the globe. Yet it can still feel isolating. Mobility challenges make it seem easier to stay home. Communication challenges make it seem easier not to talk. And cognitive difficulties may mean connecting with others burns spoons faster. But when you do meet up with a group of stroke survivors, you’re among a group that “gets it.” We understand what it’s like to have a brain problem. So remember there are others out there who can go through this with you. During this time of COVID-19 that may mean we aren’t doing in person meetings, but many groups are meeting online thanks to the power of video conferencing. And there are dozens of Facebook groups you can join. Follow the #StrokeRecovery hashtag on Instagram to see what other survivors are doing and reach out. Or just watch and smile (or half smile because, well, you know  ) and know that you are not alone. Links Neofect Http:// Neofect on YouTube Neofect on Facebook Neofect on Instagram Neofect on LinkedIn Neofect on Twitter Neofect on Strokecast No Barriers #StrokeRecovery Where do we go from here? Visit to learn more about Neofect and the work Scott is doing, and follow Neofect on social media at the links above. Share the link on your social media so your friends can learn more. Follow me on Instagram @Bills_Strokecast for more guest quotes and random musings Don’t get best…get better.

    Ep 108 -- Hope After Stroke with Tsgoyna Tanzman

    Play Episode Listen Later Aug 27, 2020 69:20

    Speech Language Pathology is a fascinating field. Covering everything from swallowing to memory to the fundamentals of language to not biting your cheek every damn biter during dinner, it’s something most folks outside stroke world or the disabled community never really think about. Tsgoyna Tanzman is an author and a Speech Therapist in Southern California. In this episode Tsgoyna and I talk about: What we mean by “cognitive issues” The multiple different types of aphasia Managing over stimulation after stroke The nature of recovery The impact of telemedicine How race affects post-stroke care and assessment The process of editing and self-publishing a book If any of that  sounds interesting to you, be sure to listen. Bio As a Speech-Language Pathologist and Life Coach for more than 25 years, Tsgoyna has helped thousands of people transition after stroke and brain injury to the next stages of their lives. Having worked in hospitals, home care, residential and skilled nursing facilities, clinics, and community settings, she’s an expert at helping people find their inner and outer resources needed for the process of recovery. Tsgoyna’s unique approach combines traditional and holistic speech therapy along with the life coaching practices used by some of the most successful people on the planet. Trained by legendary coaching gurus Tony Robbins, Dr. Dawson Church, and Brooke Castillo; she’s also a Master Practitioner of Neurolinguistic Programming. Tsgoyna is best known for her down-to-earth practicality, enthusiasm, and sense of humor while compassionately guiding caregivers and survivors through recovery. She is the author of the bestseller book, Hope After Stroke for Caregivers and Survivors: The Holistic Guide to Getting Your Life Back. Tsgoyna’s humor and poignant life stories appear in 15  different anthologies of Chicken Soup for the Soul. She is a current contributor to Thrive Global (Huffington Post). Her blog pieces about mental health appear on the largest online addiction recovery site: I Love Recovery Cafe.  Tsgoyna gained national attention on CNBC News, USA Today, Glamour Magazine, Woman’s Day Magazine, the LA Times and the Chicago Tribune for authoring the first-ever line of greeting cards for the unemployed in 1991,”Pink Slip Productions.” 3 Tips for Over Stimulation While I hope everyone is social distancing and avoiding large gatherings so that COVID-19 kills fewer people and causes fewer strokes, someday we will be out socializing again. If you struggle with over stimulation in social events, Tsgoyna has three tips to make it a little easier for stroke survivors to manage. Make sure you get adequate rest before and after the event. Find a space at the event where you can decrease the stimulation. Focus on talking to one person at a time in another, quieter part of the room. The 1950s I mentioned the cognitive assessment they gave me where I was asked to describe what was happening in the image. I answered “1954.” (actually, the specific year changes every time I tell this story, but it’s always the fifties) Here is that image:   Free Workbook Sample To get Tsgoyna’s free 21 Day Sample of the Recovery Journal and sign up for Tsgoyna’s mailing list, visit this link: Free Wheelin’ with Carden I was recently featured on the Free Wheelin’ with Carden Podcast. Carden Wycoff is podcaster and disability activist in Atlanta. She interviews guests about their experiences  going through life with disabilities, the nature of accessibility, the impact of the ADA, and how we can all work to combat ableism, and push for a more accessible world. You can listen to our conversation about my story and the power of Neuroplasticity here: Hack of the Week Meditation is key. It’s about taking a moment to prepare yourself for the day. Just like you prepare yourself to leave the house by putting on pants of a sort or a skirt (probably), you can prepare yourself for the day by taking some time to prepare your mind. It can be as simple as taking a few minutes to find one thing to focus on with each of the five senses in that moment — site, hearing, taste, touch, and smell. If you want to get really fancy may throw proprioception into the mix. Ultimately, the survivor does all the work of recovery. And it is work. So take a few minutes each morning to prepare. Links Tsgoyna’s Website Tsgoyna’s Email Tsgoyna on Facebook Tsgoyna on LinkedIn Hope After Stroke Website Hope After Stroke on Amazon Tsgoyna on Thrive Global Tsgoyna on LinkedIn Free Wheelin’ with Carden Carden interviews Bill Where do we do from here? Get your free copy of Tsgoyna’s recovery journal and learn more about here book here Check out my conversation with Carden here: Share this episode with three other people you know by giving them the link Don’t get best…get better Strokecast is the stroke podcast where a Gen X stroke survivor explores rehab, recovery, the frontiers of neuroscience and one-handed banana peeling by helping stroke survivors, caregivers, medical providers and stroke industry affiliates connect and share their stories.

    Ep 107 -- The Netflix of Healthcare with Dr. Felecia Sumner

    Play Episode Listen Later Aug 20, 2020 42:09

    What if you could see your doctor as much as you wanted and never have to pay a deductible or co-pay? What if your doctor was not paid based on how many patients they see on a given day? This week, Dr. Felecia Sumner joins me to talk about the Direct Primary Care  model of healthcare. It’s the Netflix of Healthcare. You pay a monthly subscription fee and get to see your doctor as much as you need to without dealing with insurance providers. This can be a great thing for stroke survivors and other folks with chronic conditions where you have not only complex needs and more of them than the general population, but you also need a provider who is interested in staying on top of your complex medical history. Bio From Dr. Sumner’s website: Dr. Felecia Sumner is a family medicine physician, national speaker, best-selling author, and wellness strategist dedicated to improving the health and overall wellness of her patients and their communities. She is also the co-founder and Vice President of Synergizers Inc – a health and wellness service company. Dr. Sumner completed her undergraduate work at Saint Joseph’s University and obtained her medical degree from the Philadelphia College of Osteopathic Medicine (PCOM). While at PCOM, Dr. Sumner earned the highly coveted Student National Medical Association’s PCOM Member of the Year award. Dr. Sumner is actively involved in community health education and has presented across the country at a number of community, school, and church-related events about healthy lifestyle, nutrition, and disease prevention. Dr. Sumner’s medical philosophy is inclusive of both traditional and alternative therapies and is focused on providing patient education and explaining things in non-technical language. Thus, her patients gain an increased sense of personal management of their own health, and family members are invited to attend appointments. She is particularly interested in medical media and preventive medicine, in addition to women’s health, nutrition and wellness. Of personal note, Dr. Sumner lives in Pennsylvania, with her husband and two young daughters. In her free time, Dr. Sumner enjoys reading, singing, cooking, and spending quality time with her family and friends. Is Racism Real? This is one of the questions Dr. Felecia answers on Instagram and Facebook about race.   Dr. Felecia mentioned the Tuskegee Experiment. You can read more about that here: Here’s an article that talks about several books exploring the history of gynecological care in the US and how it started with brutal experiments on enslaved women: It’s August 2020 and protests are going on in Seattle and around the country. Before our interview, I reached out to Dr. Felecia to see if race was something she wanted to talk about on the podcast. She agreed. The medical field, like many has failed many times to take care of folks based on race. Differences in care based on race, gender identity, disability, and more continue. Since disparities in treatment can happen even when most providers mean well, it means there must be an unconscious bias at play. Sharing stories and listening to the stories of others is just one way to address this. The Real Rx The Real Rx is where I first hear Dr. Felecia. I started listening because one of the other co-host is Dr. Kimberly Brown, an Emergency Room physician who was a guest on Strokecast back in episode 40. The Real Rx describes itself as “Real problems. Real talk. Real doctors. Talk to our group of women physicians just like one of your girlfriends. It is like having a virtual house call!” I enjoyed listening to season one, and I learned stuff. It’s a nice balance of the personal and the professional. The show is currently on hiatus, but it’s worth going back and listening to the back catalog in your favorite podcast app. Links Dr. Felecia Sumner’s website Dr. Felecia on Facebook Dr. Felecia on YouTube Dr. Felecia on Twitter Dr. Felecia on Instagram One of Dr. Felecia’s posts on Instagram about Racism     Synergize Direct Primary Care Synergize Direct Primary Care on Facebook DPC Frontier The Real Rx Podcast The Real RX on Facebook The Real Rx on Instagram Dr. Kimberly Brown on Strokecast Tuskegee Experiment Black Subjectivity and the Origins of American Gynecology Where do we go from here? Visit the links above to learn more about Direct Primary Care and see if it’s right for you and your family. Share this episode with three other people by giving them the link Subscribe to the Strokecast in your favorite podcast app so you never miss an episode. Don’t get best…get better. Strokecast is the stroke podcast where a Gen X stroke survivor explores rehab, recovery, the frontiers of neuroscience and one-handed banana peeling by helping stroke survivors, caregivers, medical providers and stroke industry affiliates connect and share their stories.

    Ep 106 -- Using Music to Walk Again with Brian Harris

    Play Episode Listen Later Aug 10, 2020 48:14

    Music has the power to take us back in time to a fuzzy, nostalgic past. Or it can take us into a future we aspire too. It can show us history or connect us with God. It can take us deep into the emotional side of our brain and help us transcend our present.  As I invested time with my therapists, Lin Manuel Miranda's lyrics helped keep me going, Just like my country, am young, scrappy, and hungry, and I'm not throwing away my shot  My Shot, Lin-Manuel Miranda And even in the dark days, Billy Joel reminds me that The good old days weren't always so good and tomorrow's not as bad as it seems. Keepin' the Faith, Billy Joes Music can take us to a different place metaphorically, and now, literally. Medrythms uses a system of sensors and specific music tracks to help stroke survivors learn to walk. The US Food and Drug Administration recently accepted the Digital Therapeutics Platform for Walking from Medrythms into the Breakthrough devices program. This program streamlines the approval process for certain medical devices. I talked with CEO and Co-founder Brian Harris to learn more. Bio     Brian Harris is the Co-Founder and CEO of MedRhythms, a digital therapeutics company focused on the intersection music, neuroscience and technology.  Brian is a board-certified music therapist and one of 300 Neurologic Music Therapist Fellows in the world. Brian’s clinical work was focused at Spaulding Rehabilitation Hospital in Boston where he created and implemented their first inpatient full time Neurologic Music Therapy program, specializing in Traumatic Brain Injury, Stroke, and neurologic disease and built this program to be the most comprehensive NMT program in the country.  Brian is also the Chair of the Arts & Neuroscience group at the American Congress of Rehabilitation Medicine and sits on the Advisory Council of the Academy of Neurologic Music Therapy. He has been an invited speaker at numerous venues throughout the world at venues including: the American Academy of Neurosurgeons, Harvard Medical School, the American Congress of Rehabilitation Medicine, Stanford University, Berklee College of Music, The Neurology Foundation of India, and Google.  His work has also been featured in Forbes, CNBC, The Huffington Post, Pitchfork, Mashable, The Boston Herald, XConomy, MedTech Boston and on Chronicle Boston. Brian is an inventor on 2 patents related to MedRhythms digital therapeutic platform and was recently named to MedTech Boston's 40 Under 40 Healthcare Innovators for 2017. Rhythmic Audio Stimulation in Action   Google News Alerts A Google News alert  is a daily email digest from Google with links to news and article about a particular key word.  You can set one or more up here I have one running for neuroscience and another for stroke. It's how I first hearrd about Medrhythms and the fast track program Set one up for your own area of interest to give it a try. Hack of the Week Make music a part of your life. Listen to music. Create music. Sing. Do it by yourself or with friends and family at a distance or online. Play an instrument. Or just play music while you walk and exercise. Adding music can be simple and powerful. Links Medrythms Website Entrainment Medrhythms on Facebook   Medrhythms on LinkedIn Medrhythms on Instagram Medrhythms on Twitter Medrhythms on YouTube Medrhythms Clinical Trial FDA Breakthrough Devices Program Melodic Intonation Therapy The Use of Rhythmic Auditory Stimulation to Optimize Treadmill Training for Stroke Patients: A Randomized Controlled Trial Where do we go from here? Visit to learn more about the technology Share this episode with someone you know by giving them the link Subscribe to Strokecast for free so you never miss an episode Don't get best…get better     Strokecast is the stroke podcast where a Gen X stroke survivor explores rehab, recovery, the frontiers of neuroscience and one-handed banana peeling by helping stroke survivors, caregivers, medical providers and stroke industry affiliates connect and share their stories.

    Ep 105 -- Heal the Brain with Jane

    Play Episode Listen Later Aug 2, 2020 46:03

    Sometimes, I interview a guest and we cover everything I wanted to talk about and it's a great conversation. Sometime we go off in a different way completely and I have to throw out my whole plane. And that also can turn into a great conversation. That's what happened with this conversation I had with Occupational Therapist Jane Connely , better known as "Heal the Brain with Jane." With the occasional chanting and loud child in the background, we talk about Jane's path to OT, the core elements of the OT field that Jane gets so passionate about, and how she helps survivors heal their lives after their injury. Bio Jane Connely is a Occupational Therapist and neuro specialist in San Luis Obispo, CA. Jane graduated from University of Southern California with her MA in Occupational Therapy in 2013. Her experience working with persons post brain injury pushed her to continue her training to become neuro-developmentally trained (NDT) beginning in 2015 and after 140 classroom hours finished her training in January of 2018 through recovering function. Through her work, Jane found the current system discharges survivors based on insurance rather than need, which caused a cycle of readmissions and increase in debility. The unmet needs of the brain injured population in San Luis Obispo County led her to begin Heal The Brain With Jane. Heal The Brain With Jane values current research regarding neuroplasticity and the practical application of this research in the daily lives of the brain injury survivor. Our organization understands that brain injury recovery is a delicate balance of physical, cognitive, and emotional health. All aspects must be addressed in order for the survivor to reach the highest level of recovery. Additionally, it is vital that this population receives continued care as recovery requires continued maintenance. Stroke and Social Media I met Jane through Instagram. I'm sure it comes as no surprise that it is a great tool to connect with other stroke related folks. Each platform has its own culture. They all have value. The key is to connect with the one you need at a particular point in time. Or the one that you can help others through. #Stroke on Twitter This community seems to be largely medical and industry professionals and researchers. It can be an interesting place to learn more about what happens in the field. You still need to watch it with a critical eye, but it can be informative. Be warned, though. Some people use stroke not in a brain injury context, but in reference to sex acts so you occasionally encounter adult content #Stroke on Instagram Survivors dominate the Stroke hashtag in Instagram. You'll also find a lot of OTs, PTs, and SLPs on there. Basically, the professionals that work directly with survivors are on there. Much of the conversation is around inspiration, working through therapy, and living the best post stroke life you can. But there is other stuff, too, because life is complex like that . Stroke communities on Facebook There are dozens of stroke related groups on Facebook. Each group develops its own subculture based on the choices the creator or admin makes. In my experience, you'll find a lot more people asking questions or expressing their frustration about stroke life on Facebook. These are broad generalizations that I hope  give you some context for some of the different groups. Explore a variety of them to find the communities that are right for you. Like Minded Jane recently launched a membership program called Like Minded. Here's how she describes it on her website: Welcome to Like Minded. This is a membership program for brain injury survivors, their families, and caregivers. Like Minded includes authors, nutritionists, yoga instructors and clinicians who are passionate about filling in the gaps of post stroke and post TBI care. Our leaders are survivors themselves or caretakers with intimate understanding of the recovery experience. These individuals have realized that their unique journey with brain injury granted them access into a very special community. The brain injury community is a supportive group of people who have been through it all and come out the other side with a burning desire to help you through this difficult time. Among the leaders/facilitators are several previous guest of the Strokecast, including: Dr. Karen Sullivan Joe Borges Ella Sofia It looks like a great program. You can learn more here. Links Jane on the web Jane on Instagram Jane on YouTube Jane on Facebook Jane on Pinterest No-Brainer Podcast Peter Levine -- Stronger After Stroke The One You Feed Podcast #AbledsAreWeird on Twitter #Stroke on Twitter #Stroke on Instagram Transtheoretical Model of Change Izzy Wheels Snake oil on Strokecast Dr. Karen Sullivan on Strokecast Joe Borges on strokecast Ella Sofia on Strokecast Where do we go from here? Follow Jane on Instagram @Heal.The.Brain.WithJane and check out her work at Share this episode with 3 people by giving them the link Subscribe to Strokecast for free in your favorite podcast app so you never miss an episode Don't get best…get better.

    Ep 104 -- Disability Services in Higher Education with Kaitlin Molloy

    Play Episode Listen Later Jul 5, 2020 39:14

    Click here for a machine generated transcript. I have no idea what the back to school season will look like for college and university students in the fall. After all, right now it’s early July in 2020. COVID-19 is picking up pace. Protests are still happening. The presidential election is going to get really ugly. And the US is in full recession. So school could look like anything. And people like Kaitlin Molloy will see their workloads grow as we all navigate accommodations for students with disabilities in higher education. Kaitlin’s job is to help students secure the appropriate disability accommodations in school. In this episode we talk about that process and discuss some options. Hack of the Week Kaitlin’s recommendation is to be planful. If you are  starting or continuing higher education, reach out to the disability services staff as early as you can. Once they know you are there or are joining the school community, they can start working with you. Maybe that has impacts on appropriate housing or student employment. Maybe they can address academic challenges. The earlier you start working with them, the more effective the plan you build with them will be. Links Whitney Morean on Strokecast Maddie Niebanck on Strokecast Ella Sofia on Strokecast Dr. Heather Fullerton talks Pediatric Stroke JoCo Cruise Attendees on Strokecast Where do we go from here? If you’re attending college or university, find out who should be your contact in disability services, and build a plan with them early. If you know someone who attends or works with a college, ask them to listen to this episode and share their thoughts. You can give them the link Subscribe to Strokecast for free in your favorite podcast app so you never miss an episode. Don’t get best…get better.

    Ep 103 -- Dying in hospice, stroke care, and the life of a traveling nurse

    Play Episode Listen Later Jun 24, 2020 47:24

    Hospice is something I knew existed, but it's not something I've ever had an extended conversation about, until I spoke with Barbara Sussanne.  In her job as an RN, she helps patients and their families navigate the dying process in the final few months of life. Before that, She worked as a travelling nurse in both some of the largest hospitals in the US and in some of the smallest. She shares her experience of working with stroke patients across her career We recorded this conversation in March on a cruise ship. It was the last trip of Holland America's Niew Amsterdam before COVID-19 cancelled cruising. The ambient noise you hear is the buffet area of the Lido deck. This sailing was a charter. It was the 10th annual JoCo Cruise, and the 8th one I've been on. Like in previous years both pre- and post-stroke, I had a great time. I'm booked for 2021 if cruising is still a thing that exists next year. If you like geeks, nerds, musis, crafts, karaoke, and other genre stuff, join us next year. You can learn more at Bio Barbara Sussanne graduated in 2002 with a Bachelor of Science in Nursing from Indiana University Southeast School of Nursing. The first 13 years of her career, she worked in cardiac medicine and ICU Stepdown focusing on patients with heart problems and/or complicated medical problems. The next 3 years she switched her focus to in home care. Barbara has been on caring for patients receiving medical services in their homes related to their illnesses. A year and a half ago Barbara was called to hospice where she now works with patients and their families as they navigate through the dying process. Links Barbara Sussanne on Instagram JoCo Cruise JoCo Cruise Discussions on Strokecast Bill on Instagram Where do we go from here? Follow Barbara on Instagram @JavaJunkie_RN Follow Bill on Instagram @Bills_Strokecast Share this episode with someone you love by giving them the link: Don't get best…,get better     Strokecast is the stroke podcast where a Gen X stroke survivor explores rehab, recovery, the frontiers of neuroscience and one-handed banana peeling by helping stroke survivors, caregivers, medical providers and stroke industry affiliates connect and share their stories.          

    Ep 102 - Gait Training with the iStride and Dr. Kyle Reed

    Play Episode Listen Later Jun 17, 2020 55:17

    I learned about the iStride device when the initial research paper came out last year. It made a big difference in subjects’ ability to walk. I thought you’d like to learn more about it. I know I did. So I reached out to the developer Dr. Kyle Reed. We talk about it, how it works, and the research in this episode. So what’s the principle behind how it works? When we start walking after stroke, it’s liberating. As we get more and more mobile we start to compensate for our affected side by walking differently. But that can cause problems later on. And our skills can top out. At a certain point to get better, we need to break those new bad habits. The iStride is a therapeutic device that you wear on your unaffected foot. It teaches you to rely more on your affected leg to ultimately improve your walking ability years after stroke. Bio Dr. Kyle B. Reed is an associate professor in the Department of Mechanical Engineering at the University of South Florida (USF).  His rehabilitation research focuses on low-cost methods to restore abilities in individuals with asymmetric impairments, such as from stroke or unilateral amputations.  His research on Haptics focuses on thermal responses of the skin, coordinated motions, and human-robot interaction.  He has over 100 publications and has 18 patents issued or pending with three patents licensed for commercialization.  He is an Associate Editor for IEEE Transactions on Haptics, an IEEE Senior Member, a Senior Member of the National Academy of Inventors, and was a 2019 Core Fulbright U.S. Scholar.  He has received funding from the National Science Foundation, the National Institutes of Health, the Florida High Tech Corridor, the Orthotic and Prosthetic Education and Research Foundation, the American Orthotic & Prosthetic Association, and industry.  Prior to USF, he was a post-doctoral scholar at Johns Hopkins University.  He received his Ph.D. and master’s from Northwestern University and his B.S. from the University of Tennessee, all in Engineering. iStride in Action Research Here’s the pilot study that initially caught my attention: There are couple more studies coming out soon showing the benefits of the iStride. Check out the abstracts here: Always be skeptical of new approaches to recovery, but if it’s not harmful, and it doesn’t interfere with other treatments in terms of time or money, those new treatments may be a great choice. Thoughts on the Protests The pro-democracy protests in Hong Kong negatively impacted people’s treatment because they couldn’t get to clinics. The recent anti-police brutality / Black Lives Matter protests in the US also likely disrupted people’s care, which was already disrupted by COVID-19. It’s okay to acknowledge that. But that doesn’t mean the protests are bad or need to stop. Every group that is fighting for its rights also has people with disabilities in its ranks. With all the upheaval, now is not the time for people with disabilities to stay silent. Now is the time to speak up even louder. Disability doesn’t mean we can’t or shouldn’t be part of the fight — it just means we may have a different role. Hack of the Week An umbrella stand or tall vase is a great place to store canes by the door. It can also be a great place to swap from an indoor to an outdoor cane a you venture into the larger world. And as long as you have to use a cane, make it awesome. You can find hundreds of great options on Etsy: I’ve also acquired most of mine through Links Reed Lab Dr. Kyle Reed’s email address iStride Device Moterum Technologies Clinical Trials iStride video by USF USF Article about iStride iStride on NBC DFW Pilot Study Abstract from the AHA Journal Abstract from the APTA Conference Constraint Induced Movement Therapy from Physiopedia Amy Bastion at the Kennedy Kreiger Institute Fashionable Canes Canes on Etsy Where do we go from here? Check out the video above to see the iStride in action, and visit to learn more about participating in studies. Share this episode with 3 people you know by giving them the link Lift your literal or metaphorical voice high and don’t be ignored in this time of social change Don’t get best…get better Strokecast is the stroke podcast where a Gen X stroke survivor explores rehab, recovery, the frontiers of neuroscience and one-handed banana peeling by helping stroke survivors, caregivers, medical providers and stroke industry affiliates connect and share their stories.

    Ep 101 -- Youth Stroke and Habits with Ella Sofia

    Play Episode Listen Later Jun 10, 2020 68:23

    Modern social media means anyone can reach out and connect with other stroke and brain injury survivors. And we are part of an amazing community. Instagram is where I first encounter stroke survivor and entrepreneur Ella Sofia. We met through an Instagram Live video she did with Joe Borges of the Neuro Nerds podcast. Ella survived two strokes when she was 14. I’m glad she tells story for several reasons. One though, is the reminder that kids can have strokes. A lot of folks don’t realize that. If you’d like to learn more about stroke in kids, you can listen to my conversation from 2019 with Dr. Heather Fullerton Another important element is that Ella was athletic and still had her stroke. Being active and healthy with good blood pressure reduces your chances of having a stroke, but it doesn’t eliminate it. A number of guests on the show have been healthy, young and had a stroke. Sometimes it’s for an obvious reason (after the fact) like the Arteriovenous Malformation (AVM) Ella experienced, and sometimes we may never know, which was the case with Whitney Morean. So why bother getting in shape? First of all, a healthy body  does still reduce the odds of stroke even if it doesn’t guarantee that it won’t happen. Second, it makes recovery faster and more complete. Bio Ella Sofia, Habit Coach is a content creator at In January 2008, at the age of 14, Ella suffered a hemorrhagic stroke due to an AVM rupture in her cerebellum.  About 9 years after her injury, through a long process of self-care and self-reflection, she finally and thankfully realized that mental rehabilitation is just as, if not more important than physical rehabilitation.  Now, she specializes in the mind’s role in habit creation to help others with their mental rehab and ultimately help others use habit to simplify their personal growth. Ella received a Master of Arts, Sociology degree from the University of Waterloo in 2018.  Her research revolved around risk management, resilience, and security in Canada airports.  She spent nearly 3 years working for the Canadian government in national security while completing her degree.  During her time with the government she realized that the resilience of the airports and structures she was studying was not so different from the resilience of the mind.  This realization lead her to integrate many of the concepts and practices learned from her research into her coaching today. What is an AVM? An AVM is a misconfiguration of blood vessels. Instead of arteries gradually leading to smaller and smaller capillaries that then lead to larger and fewer blood vessels and into veins,  in an AVM, that network of capillaries doesn’t develop properly. The blood vessel can’t properly regulate and withstand the blood pressure. Eventually, it can fail. That results in a brain bleed — a hemorrhagic stroke. Here is an article that talks about it in greater detail. Changing Habits Habits — good or bad — are unconscious behaviors. To change them we first have to make ourselves conscious of the context of the habit. Ella talks about how to do that. When you feel the urge to engage in a bad habit, stop, ask yourself some questions and take some notes. Who? Who are you with or thinking about? What? What are you doing at the moment? What is going on? Don’t worry if it doesn’t seem connected to your habit. Just make note of it. Where? Where are you? Make note of it. Get specific about where you are in your home or in the world. When? When did the urge happen? Note the time or other temporal queues, What are you feeling? What sort of mood are you in? What other things are you worried about? You don’t have to do all the analysis. Just start by making note of these things. As you collect data, you’ll start to see trends. Then the work can start. Links Ella Sofia’s website Ella on Instagram Ella on Twitter Ella on Facebook Ella on LinkedIn Ella on Goodreads Ella on YouTube Book a Consultation Joe Borges on Strokecast The NeuroNerds Podcast My Stroke of Insight Pediatric STROKE ON strokecast AVM Information Where do we go from here? Visit to learn more about Ella and her work. Share this episode on your favorite social platform by using the link Subscribe to Strokecast in your favorite podcast app so you never miss an episode. Don’t get best…get better Strokecast is the stroke podcast where a Gen X stroke survivor explores rehab, recovery, the frontiers of neuroscience and one-handed banana peeling by helping stroke survivors, caregivers, medical providers and stroke industry affiliates connect and share their stories.

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