Strokecast

This week is a solo episode. I have a new job! Plus, I just tried Dysport for tone and spasticity for the first time. And...what does stroke prevention have to do with sales? I talk about all of that in this week's episode. New Drug I've just had my first round of Dysport to treat tone and spasticity in my arm and hand. I talked about tone in greater detail in one of my early episode. It's gotten better since then but I still have a way to go. I'd been getting Botox in the past. It takes a couple weeks to have an effect and lasts for about 3 months. Dysport is another implementation of the botulinum neurotoxin. It lasts for four months and the dosage is lower than it is with Botox. In my experience, it appears to kick in faster as well. I noticed results days later instead of weeks. So far, it seems to be a winner. New Job I just started a new full-time job as a contractor with Microsoft News Labs. My role is to help folks in the journalism community use Microsoft products to do their jobs more efficiently so

What is #NeuroPsychology? And what do the fewer than 1,000 board-certified #Neuropsychologist in the US do for #StrokeSurvivors? I talk about that and more with author of the Interactive Stroke Recovery Guide, Dr. Karen Sullivan. I think Dr. Sullivan and I first connected through Instagram. Her colorful graphics and logos really pop. Dr. Karen D. Sullivan launched a series of Facebook Live videos aimed at helping stroke and brain injury survivors understand their situation better. From there she went on to write a book, the Interactive Stroke Recovery Guide. She sent me a copy to read before our conversation. Unlike many stroke books, this is more of a work book. It's meant to be written in. It lets survivors keep track of the details of their strokes, their goals for recovery, their symptoms, etc. It's meant to be cut up, with reminders for motivation and thank you cards to give out. This is no pristine library book. Bio Karen D. Sullivan, PhD, ABPP, is the creator of the I CARE FOR YOUR BRAIN program. She

When most stroke survivors think about death, it's about how we came close. I like to say my own blood tried to kill me -- and failed. For today's guest, it mean something else. Death, and specifically homicide fueled his career as a writer before he had his stroke. I met Paul Sanders through the Seattle Young Adult Stroke Survivors group. A week after he finished his most recent book, Paul suffered a severe stroke while under anesthesia for a different surgical procedure. The hospital blamed the medication and sent him home. It wasn't until a wellness check by the police several days later that Paul finally got treatment. Paul's books tell the true stories of some of the deadliest murders in recent years. Now, the combination of aphasia, apraxia of speech, and short term memory loss means Paul has put his career on hold until he is once again able to write books. Bio Paul Sanders writes True Crime from a juror’s perspective. His story began in 2014, when he was called to serve as a death penalty juror in the

This week I talk with Garrison Red. Garrison is one of our neuro cousins. His spinal cord was severed in a random shooting 14 years ago, and he's lived life since then in a wheel chair. It's been quite a life since then and the big adventures are only beginning. There's a lot of overlap in the stoke, spinal injury, MS, CP, ALS, and other communities. While the cause of our deficits may be different, we all face similar challenges living life in society not optimized for accessibility. And we can rely on similar tools for navigating that world. Bio At 17 years old, Garrison Redd was a dedicated student and a standout running back on his high school football team before his life catastrophically changed one summer night in Brooklyn. A victim of random gun violence, Garrison was shot in the back and instantly paralyzed from the waist down. But instead of feeling sorry for himself, Garrison pushed forward. He is currently training as a powerlifter for the upcoming Paralympic Games, serves as a motivational speake

Last year, I started attending the CVA Support Group at Swedish. I talked about it a couple weeks ago in my interview with Seth since that's where we met. It's also where I started connecting with Bronwyn Rogers. I had actually met her a couple months earlier when I reached out to the hospital administration to explore ways we could work together as I launched this podcast. This week we sat down at Cherry Street Espresso in Seattle's First Hill Neighborhood, right across the street from Seattle University. A very large and well behaved dog napped on the floor next to us. This is the kind of neighborhood where no one even notices when you set up your portable studio in the middle of the shop. We talked about Bronwyn's career trajectory and just what it is that a Stroke Clinical Operations Coordinator does with her day. Bio Bronwyn is the Stroke Clinical Operations Coordinator for the Swedish Medical Center First Hill and Cheery Hill campuses. Bronwyn was born into a family of medical professionals in Australi

Jelly Packets Last week, the COO of Swedish Cherry Hill Medical Center invited me to speak at the hospital's leadership meeting to share a little bit about my experience as a stroke patient there. Among the positive things I had to share, I also talked about a couple of the smaller negatives, including the jelly packets at breakfast. They use those little plastic packets that are common at dinners. You peel back the foil lid and then extract jelly with your knife to spread it on your bread. The problem is it takes two hands to do it. Give it a try with one hand sometime. That means that I and the other hemiparetic stroke patients in the stroke unit couldn't do it. And of course it's a small thing, and there are plenty of people available to help. But I feel silly paging someone to come to my room and spread my jelly. At one level, it struck me as silly that a hospital hadn't thought of this. But there had to be more to it. Later in the day, I realized why it stuck with me like this. It's because that means ev

Each month I go back to the hospital that treated my stroke to attend the support group they host. It's there that I met Seth Shearer. The more I learned about Seth's story, the more I wanted him on the show. Bio ​Seth Shearer is a Seattle-based artist and designer. In September 2018, he suffered an acute ischemic stroke. Through rehabilitation he was able to regain use of the right side of his body. His painting practice helped to re-strengthen his arm and to begin the process of integrating his post-stroke experience with his with his former life. The transformation in his work led him to paint under his middle name, Ian, in recognition of his new life. ​ Neurological differences, such as a newfound hypersensitivity to light and sound drew him out to the "nighttime" world. Ian Shearer's paintings explore this post-stroke landscape. These urban vistas invite the viewer into a dreamlike world, woven together with light and shadow and possibilities. Stroke Treatment is an Emergency Most folks think a stroke h

Shortly after I got out of the hospital 3 years ago, a friend and former coworker sent me a link to an announcement from Valley Medical Center in Renton, WA, about the Stroke Club. Despite the commute from downtown Seattle, this would become the first support group I attended. It's there that I met Sarah Devine, a neurology nurse practitioner who led the group. Since then, the group has grown, we've heard from a wide assortment of speakers, attendees have come and gone, and now Sarah is handing over the reins of the group while she prepares to take her own well deserved break. Before she leaves, though, I wanted to sit down and talk with her more about her own path. Bio Sarah Devine is an Adult Nurse Practitioner practicing at Valley Medical Center’s Neuroscience Institute. Sarah sees Stroke and TIA patients in the hospital and clinic to confirm etiology, reduce risk for re-stroke and counsel patients on life style changes while helping through the multiple post stroke syndromes and symptoms that occur. She

Snakeoil or Revolutionary Treatment? New treatments for stroke related conditions are coming out all the time. And with the deficits some folks live with, we desperately need them. Unfortunately, that also means there are a lot of scam therapies out there, too. Or even if they are not scams, there are still treatments that just don't work. The research doesn't support them and for many people the represent a waste of time and money. How do you tell the good from the bad? This is the framework I use. First, who is recommending it? Is it your doctor, therapist, or other member of your care team? If so, there's likely some validity to it. They have a vested interest in recommending safe and effective treatments to you, and they want you to get well. Or is it a random poster in an internet forum or a YouTube video? Those could still be good, but it pays to be skeptical. You need to go deeper into the scientific research or talk about it with your doctor or care team. Second, will insurance pay for it? If your ins

Sometimes art can help our friends and family understand our lives when we cannot. We're all too close to our own situations to adequately explain them. I'm gradually working my way through a list of stroke related movies. It's not always easy to watch them, but they are often rewarding. This week, I talk about 2 of them. My Beautiful Broken Brain This film chronicle the life of film producer Lotje Sodderland in the year after her stroke. We see her struggle with language, improve, decline, and generally come to terms with her new way of seeing and communicating with the world.     The Diving Bell and the Butterfly This film is "based on a true story." It's based on a book written by Jean-Dominique Bauby, the former editor of Elle magazine in Paris, and it's his memoir. Bauby suffered a stroke while at the peak of his professional life. When he woke from a coma, he had Locked-In Syndrome. He had all his cognitive abilities but he couldn't speak and he couldn't move. He couldn't communicate with the world ou

This week began with my 2nd 2nd Birthday. June 3 was 2 years since my stroke. I shared some thoughts earlier in the week in Facebook live here. In this episode, I expand on those concepts and share 5 lessons I've learned about stroke recovery. 5 Lessons on Stroke Recovery Repetition is important to learning. Life is full of puzzles. I am responsible for my own recovery. [YAWN] Sleep is under appreciated. Stop and celebrate the wins. Jim Boggia I was listening to an interview with Jim Boggia on Meredith Harper's Ukelele is the New Black podcast. If you're not familiar with Jim's work, check out these videos. He is an amazing ukelele and guitar player whom I've had the pleasure of seeing many times on the JoCo Cruise. Meredith let me share a clip from her interview in this episode where Jim talks about doing the work to learn to play the guitar as a kid. It was about trying and trying and getting a little closer until one day you can do it. That story reminded me a lot of what we do in stroke recovery. We wor

This article was sponsored by NeuroLutions for the benefit of the stroke community. A Break from the Journey Recovery from stroke is a marathon, not a sprint. You've probably heard or read that before. It's a journey. It's a unique one because every stroke is different, and every stroke survivor is different. We are all on our own trip. But we're not doing it by ourselves. Many of us are lucky enough to be joined by our caregivers and medical teams. Plus, while our journeys are different, they do intersect. As we go down the road of recovery, we meet other folks on their own journeys and at different points in their journeys. At these way stations, we share tips. We share laughs. We share experiences. And we just share. In this episode we have one of those chats as we sit around the proverbial road side camp fire with 3 survivors at different points in their journey. As of June 3, I am 2 years into my recovery working to regain motor function. I'm joined by Peter and Ria. Peter is about 21 months into his jou

Last summer, Annie Smith was featured in the Stroke Smart magazine, sharing a story about stress and how that stress ultimately led to her stroke on December 22, 2015. I'm thrilled the folks from the AHA were able to help me connect with Annie this week. Bio Annie Smith is an Ischemic stroke survivor. 2015 was a life-changing year for Annie; her husband of 38 years died unexpectedly, her first grandchild was born; and she suffered a massive stroke. On December 22, 2015, she fell to the floor and couldn’t get up. She suffered left-side paralysis and was in a wheelchair for several months before learning to use various canes. After months of physical therapy in a hospital and at home, she regained mobility, relearning to walk and drive a car. Annie returned to her full time job eight months after the stroke, but couldn’t perform all the responsibilities without the help of her daughter who went to work with her. Consequently, she had to take an early retirement. Currently, she has weakness on the left side of h

In this episode I talk with Heisman Trophy winner and retired professional basketball player Charlie Ward about his experience with Stroke last June while on a church mission trip to Mexico. Charlie and I talk about the things in his life that led up to his stroke and the life style changes he's made to give himself the best chance to live a long, healthy, and stroke-free life. After a spectacular multi-sport college athletic career, Charlie graduated in 1994 and joined the NBA. He play professional basketball from 94 thru 2005 when he retired due to injuries. He transitioned into coaching and now coaches basketball at Florida State University in Tallahassee. The big lesson that comes out of this episode is that we have to take care of ourselves. We have to manage our diets, exercise more, and keep our stress levels under control. It's not complicated or fancy; we just have to do it. And that's easy to forget until a crisis hits. Ineffective habits sneak up on us when we're not looking. We may plan to deal wi

Peter and Ria Evans are back this week for a conversation about emotions, mood, reactions, depression, and more. [caption id="attachment_632" align="alignleft" width="150"] Peter Evans[/caption] You can hear more about their origin story (No, I'm not watching too many super hero movies. Why do you ask?) in episode 60. We recently published Peter's article called Don’t Underestimate the Impact of Emotions on Stroke Recovery, which what kicked off this episode. You can read it here. This time, we have less of an interview and more of a conversation. We dive deeper into the emotional challenges of life after stroke as we explore goal setting, depression, meditation and the importance of breaking out of negative patterns. We talk about some of the techniques we use to manage our moods and take control of our mindset. [caption id="attachment_645" align="alignright" width="150"] Ria Evans[/caption] There are a lot of things out of our control after a stroke; our emotional state doesn't have to be one of them. There

Last July, Mark French joined me on Strokecast to share his stroke story and talk about his new film, A Teachable Moment. It tells the stories of four Washington, DC, area stroke survivors as they navigate the new world of stroke recovery. Mark was one of the featured survivors, as was Anne Daily who I spoke with in Episode 14 about making the shift key her bitch. It also features doctors and fantastic animations that explain stroke in a simple and understandable way. The film is an hour long and available on Amazon Prime Video. You can learn more at http://ATeachableMoment.Film. Mark had his severe hemorrhagic and ischemic strokes in May of 2015 caused by AFib (or Atrial Fibrillation) and went on to make an amazing recovery. Four years to the day, in May of 2019, he suffered another stroke (or series of strokes). Sadly, this time he didn't make it. My heart goes out to the French family, the team at LAI Video (here's their tribute to Mark), and all the folks who made A Teachable Moment possible. Lessons I do

When Steve had a massive stroke out in the wilds of Colorado, his determination to survive got him to the point where he could get help. Charlene, his wife and now caregiver demonstrated the same work ethic and fortitude in the weeks and months following his stroke. Stroke spouses, partners, and caregivers are amazing, and this is Charlene's story. Bio Charlene Hayward is a native of Colorado, a mountainous region in the middle of the US. Growing up, her family did lots of outdoor activities: camping, hiking, water skiing, and snowmobiling to name a few.   Charlene and Steve got married at her parents’ cabin in Grand Lake, Colorado, and have stayed true to their “mountain roots”. They love the mountains and will be moving there full time in just a short while.   They have two amazing daughters that are at the center of their lives. Last January Charlene and Steve became the proud grandparents of a little boy and are over the moon seeing pictures and videos of him weekly!   For the most part, Charlene enjoys t

When I had my stroke I was already a big fan of the podcast medium. I already had another show at that point. 2-Minute Talk Tips was up around episode 23 in June 2017. So as I began my journey to learn all about neurology by looking for Stroke related podcasts. I found only a couple of shows at first -- The Enable Me show from Australia and The Slow Road to Better from Vienna, Virginia (who ultimately appeared on this show, too). Eventually, I found a couple more and you can see a list at Strokecast.com/otherpodcasts. The lack of shows led me to start Strokecast to be the resource I wished I had 6 months earlier. It turns out Joe Borges was thinking something similar at roughly the same time. A couple weeks after Strokecast started, Joe and his cohost Lauren, launched Neuro Nerds, a podcast by a stroke survivor and a TBI survivor sharing their journey, the journeys of their brain buddies, and celebrations of all things nerdy -- stroke related or not. I originally found the Neuro Nerds through the Stromies,

On this show, we've talked to plenty of stroke survivors and stroke industry professionals, but not nearly enough caregivers. I'm thrilled to bring more of these folks, like Melia Wilkinson to your ears. A lot of the focus in stroke recovery is about how life is different for the survivor, but it's not just about us. Our spouses, partners, and families have their lives turned upside down, too. They find themselves thrust into a role in an instant -- a role they never signed up for. Suddenly their financial and career future is also changed. Years of planning for the future are suddenly out the window. Melia lived through those changes 5 years ago and continues to do so today. She's been sharing her story in a series of guest posts on the Strokecast website to help folks understand what happens in the care model after a stroke. You can read all of Melia's posts over at http://Strokecast.com/Melia. Decisions, Decisions As I listen to Melia's story, the recurrent them is about making decisions. There are a lot o

The wild requires that we learn the terrain, nod to all the plants and animals and birds, ford the streams and cross the ridges, and tell a good story when we get back home.  -- Gary Snyder     A few weeks ago, we heard from Carol-Ann Nelson from Destination Rehab about the PT work she does in Bend, OR, helping folks with disabilities from around the world spend a week doing rehab and enjoying all the beauty that Central Oregon in the northwest United States has to offer. You can check out http://strokecast.com/destinationrehab to learn more about a Rehab Vacation or listen to that episode. After we finished, Carol-Ann told me about Geoff Babb, a fellow Bend, OR, resident who had his own project. Geoff Babb is a 2-time stroke survivor who loves the outdoors. After he got back to Bend following his work on Hurricane Katrina relief efforts, he had a brainstem stroke. After that first stroke, he discovered standard wheel chairs are not compatible with hiking trails. They're barely compatible with city sidewalk