Strokecast

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 m

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 m

Today is both episode 100 and my 3rd Strokeaversary. Each year, I look forward to this day as one to respect. Survivor reactions to the anniversary of a stroke are as varied as survivors themselves. Some see it as a party; others as a day of dread. Both reactions and all those in between are valid. I lean toward the party angle myself. It’s not so much the anniversary of the day I suffered a stroke. Instead, it’s the day I survived a stroke. So pass the cake, please! In reality, I don’t so much end up with a party, though. It usually turns out to be a day of quiet reflection. This year I’ll be tired from work so I may celebrate with a nap. Or a quiet, socially distanced walk around the neighborhood. Regardless, today is a good day. Just as all those after stroke have the potential to be. So listen to this week’s episode. I talk about things like mortality, seasons in life, why sleep in the hospital sucks, the amazing staff I had the joy of working with, and the awesome Cathy Lee. Hack of the Week I use the ha

Marcia Moran was a consultant who worded with entrepreneurs and helped the write business plans. Her pplan did not include a stroke in 2014, but no one’s does. Since then those skills have helped her advocate for herself and take the small steps she needed to in order to begin her recovery. Marcia shares her story in this episode, talks about how she’s doing it, and discusses the importance of having or being an advocate. Bio From Marcia’s website: After successfully building her business over the last twenty-plus years, Marcia  Moran thought she had life by the tail. Little did she know what was in store. Marcia Moran has written over fifty business plans, and helped entrepreneurs strategize over how to differentiate their companies in changing environments. Her experience led her to found her own firm, Performance Architect in 2012.  She also co-founded Positive Business DC, an organization designed to increase well-being in the workforce in 2012. After suffering a major stroke in 2014, Marcia applied her

This situation the world is facing with COVID-19 (novel coronavirus) is unlike anything we’ve seen for a 100 years. In just a few months, it has put the entire world economy on pause as hundreds of thousands of people test positive for this deadly disease. What does this mean for stroke survivors? Are we at higher risk? Neuro-Physiatrist Dr. Kim Middleton joins us to answer that question and more in this episode of Strokecast. Bio Dr. Kimberly Middleton completed medical school at the University of California, Los Angeles David Geffen School of Medicine before doing her residency at the University of Washington. She is a member of the American Academy of Physical Medicine and Rehabilitation (AAPMR). Dr. Middleton was one of the doctors who cared for me during the month I lived at the hospital following my stroke. I continue to see her on a regular basis for my Botox/Dysport injections to treat my tone and spasticity. You can learn more about Dr. Middleton’s background here: https://www.swedish.org/swedish-ph

I love the stroke survivor community on Instagram. So many survivors share their victories, their struggles, and their lives there, it really shows we are not alone. It’s also where I met Maddi Niebanck (@MaddiStrokeOfLuck). She regularly does live broadcasts there and includes guests from time-to-time. After one of those broadcasts, I knew I wanted to talk with her on the show. Maddi had her stroke a few days before I had mine. We were both going through rehab thousands of miles away from each other at the same time. And now she has a new book coming out. We talk about that and more in this episode. Bio Madeline Niebanck graduated from Georgetown University in Washington, DC, in May of 2017. A few days later she went to the hospital for a planned surgery to treat an Arteriovenous Malformation (AVM). An untreated AVM can result in a serious stroke. During a pre-surgery procedure, though, that AVM gave way and Maddi suffered a stroke. While going through recovery, Maddi wrote her first book, Fashion Fwd: How

I’m typing this on January 1, but whenever you read this, it is the first day of the next year of your life, and that’s a great time to start sharing your story. As a stroke survivor, survivor of some other acute or chronic trauma, care giver, professional, or just someone who has lived some life, you have a story to tell. You have experiences to share. You’ve worked through some emotional stuff. Or you haven’ worked through it, but it’s sill there. And maybe you’ve thought about writing a memoir. Christine H. Lee joined us last year to talk about her memoir, Tell Me Everything You Don’t Remember. She is an author, teacher, and stroke survivor. Today, she’s back to help you start writing your own memoir. 7 Lessons in this Episode An autobiography is about a person. A memoir is about a person’s experience. Understand the roles of author, character, and narrator. There is universality in the particular. The Oxford Comma is awesome. Get a cohort. We are about more than stroke. Keep writing. Bio Christine H. L

The Holidays are a wonderful time, and it can be a stressful time. Here are 19 Holiday Tips for Stroke Survivors. I explore them in greater detail in the episode. Use Spoon Theory to explain disabilities Nap when you can Warn a host you may need a break Keep blankets in your car Dry your cane tip Update note cards and laminate them Cold drives tone. Ask your doctor about adjusting meds Stretch Be careful with alcohol. It can affect you differently now Talk about Pba and emotional lability. It’s not shameful. Get extra traction for your shoes Use an ally at parties Decorate a cane for the holidays Send Thank you notes to your team Make a list and check it twice Use project planning tools like Planner and Trello to organize your endeavors Help others Create an Amazon wish list Adjust your expectations Where do we go from here? Share theses tips with two people in your life by giving them the link http://Strokecast.com/19Tips Follow me on Instagram at http://Strokecast.com/Instagram Be safe in your holiday ad

There are a lot of amazing people in the stroke community, and I get to talk with a lot of them. #PodcastPrivilege. A few weeks ago, I spoke with Debra Myerson about her book, Identity Theft. In that book, she wrote about a couple dozen other stroke survivors, including Julia Fox Garrison. Julia joins us in this episode to talk about her journey, her book, Don’t Leave Me this Way, and her philosophy of Positive Outlook = Positive Outcome. And, of course, the importance of humor in dealing with difficulty in our lives. Bio Julia is the author of Don’t Leave Me This Way (or when I get back on my feet you’ll be sorry), Harper Collins Publisher. A memoir that chronicles her struggle to regain control over her life and her body following a massive hemorrhage resulting in a paralyzing stroke. The success of the book and the message it conveys led to a new career path for Julia as a motivational speaker, evangelizing for humanity in health care, our work, and in our personal relationships. Her message is universal

There is beauty in social media. Not in the trolling, harassment, or fake news it too often promotes, but in the connections it facilitates. My work on the show and Instagram brought me in contact with Vince Holland. This week, he shares his perspective on stroke and recovery. Bio Vince Holland was a busy many. He worked 2 jobs and was raising a family.  He approached everything with a go go go attitude. He lifted weights, kept his weight under control, watched his blood pressure — basically did everything you’re supposed to do to prevent a stroke. Unfortunately, for some unknown reason, it wasn’t enough in his case. On July 4, 2016, he found himself laying on his parents’ kitchen floor while his Navy Corpsman brother worked to assess his condition. He had suffered a cryptogenic, ischemic stroke. That means a blood clot appeared in his brain, and doctors still have no idea how it happened. And thus began his new life. Three key lessons First If you suspect someone is having a stroke, call an ambulance. Do no

Olivia and Emilee were my two, awesome inpatient OTs a couple years ago, and we stayed in touch after I left the hospital. One day, Olivia told me about the amazing new $40K rehab bike they just got. They were getting great results with patients. It’s too bad my stroke didn’t happen a year later. The new device was the RT300. It combines therapy, eStim, and data with exercise to help patients improve their core, their leg use, their arm use, or all three at once. So Olivia put me in touch with Restorative therapies. sStim The brain controls the muscles and makes us move by sending electrical signals through our nerves with various chemical processes. After stroke the brain may no longer be able to do that to certain muscles. That’s how we get paralysis, hemiparesis, and all sorts of similar issues. That also means that we can bypass the brain and move those muscles by sending an electrical signal directly to the nerves at the muscle to stimulate them to make them move. This is great because movement is import

To know if you’re achieving goals, improving, or declining, you need to track your metrics. This week I explore what that means and talk about some of the tools that can put a score on your performance as I explore the Quantified Self. Learn more at http://Strokecast.com/Quantified I wasted an entire day of climbing stairs because I forgot to bring my Fitbit. Since I didn’t track it, it feels like it didn’t count. If it didn’t count, then why are my legs sore? Hmm. Strange. The Quantified Self is the fancy new word for using technology to monitor our health and activity. The Fitbit, a small simple pedometer that tracks step and sleep quality, and the Wii Fit, a Nintendo that made exercise and balance a game, are some of the early modern examples of this. This movement fed off the popular perception that we need to get 10,000 steps a day to be healthy. The reality is more nuanced than that, but it’s a nice round number that can inspire people to walk more. I use my Fitbit to keep track of the steps I do and th

Neurofatigue describes the condition of profound tiredness common to stroke survivors, TBI survivors, and others with brain injuries or neurological conditions. It is significantly different from the levels of exhaustion other people experience due to lack of sleep or overwork. The brain does much of its repair work while we sleep. It’s like shutting down a freeway overnight for construction. It’s not because the freeway is lazy. It’s because that work can be done only when there are no cars on it. It’s the same with the brain. That’s why it’s normal — and healthy — for stroke survivors to sleep 8, 12, or even 18 hours a day. Especially in the early months. Neurofatigue can continue to strike months and years down the road. When we’re sick, inebriated, overworked, acquiring (or re-acquiring) skills, or just not getting another sleep, it can strike. This week, I explore neurofatigue, why it happens, and my own relationship with my favorite frenemy — sleep. Hack of the Week Jan Douglas shared her strategy for g

A lot of stroke survivors I talk with describe themselves as "Lucky." I don't want to minimize the trauma or struggles that many survivors face. There are real challenges, and I don't recommend anyone go out and acquire a stroke, but luck is still a common theme. In my experience, I say I'm lucky because I have a great partner who has stuck with me. I got great care at the hospital. My stroke left me with physical disabilities, but no significant cognitive or language issues. And it opened my eyes to this whole fascinating world and community. I've talked with other folks who feel lucky because they have some cognitive challenges but no physical deficits. In episode 65, Joe Borges described his stroke as a blessing because of the way it rebooted his life. For former OT and corporate consultant, Janet Douglas, stroke was A Wonderful Stroke of Luck. And she wrote the book on it. Jan started her career working in OT in her native England. She would go on traveling the world with the World Health Organization, me

Marsha Schmid is a stroke survivor and she's this year's Ms. Wheelchair USA. In other news, there's a growing Ms. Wheelchair USA pageant. Marsha's had quite a journey to get there. She excelled in school, became the top salesperson in her company and she was a nationally ranked body builder. All that was before the fateful day she went to her chiropractor. The chiropractor manipulated her neck, caused a vertebral artery dissection, and that led to her massive stroke. This week Marsha share her story of recovery, the pageant, and the future she now has. She lives theme of Never Give Up. Bio Marsha Schmid competed as Ms. Wheelchair Georgia USA and lives in Fayetteville, Georgia. She has a Bachelor’s in English with concentrations in Political Science and Japanese. She served as an intern to Congressman Bob Barr when he was in office, and hopes to become an international motivational speaker. At the time of her massive brainstem stroke in 2011, Marsha was on top of the world. She was the number 1 in medical sale

As stroke survivors, we have to find the #StrokePerks where we can. My GF recently hurt her ankle on the way to work. Fortunately, I have an assortment of canes that she can choose from to get around the apartment safely while she recovers. Keep Trying Getting from the car to the apartment, though, meant she had to use the can I had brought with me. Fortunately, I was able to walk a bit without it. As I walked down the hall, I reflected on my early days of recovery. I spent time going up and down that same hall with Elissa, my PT from Rehab Without Walls. It took a lot longer to cover that distance back then. And trying it without the can worked for only a few feet. Even a year ago, it took longer. Today, I need the cane to walk longer, faster, safer, with a better gait, and with less fatigue. The point is that I continue to get better. It's just a little bit at a time. And sometimes it's hard to notice. But it's happening. 28 months later. Anyone who tells you recovery stops at 6 months or 12 months is WRONG

At an event I recently attended, there was a presentation on creating SMART goals, assigning roles/responsibilities, and balancing concepts of urgent vs important, among other things. With a background in corporate life, and especially in the marketing field, I thought, "Why are we spending time on such basic and 'obvious' concepts?" And yet, the hundred+ folks in attendance were enthusiastic and soaking it all up as they could see how these new concepts could transform their working lives. I took a couple things from the experience. First, it's an ongoing reminder that not everyone has the same experience that I do. Smart people have different backgrounds. Things obvious to me are not obvious to others, and things that are obvious to others are not obvious to me. And sharing basic knowledge across areas of experience is valuable for everyone -- especially in the stroke space. In fact, it's one reason I started this show -- to share not only stories but to also breakdown some the barriers to sharing knowledge

Vision happens where the brain meets the eyes. A stroke in a particular location can break that system. Even though the eyes may work perfectly, a survivor may not be able to see. Neuro-Ophthalmologists like Dr. Eugene May navigate this world and not only treat folks with neurological conditions but often discover neurological causes to mysterious vision ailments. Bio Dr. May was born in New Orleans and completed his undergrad work at Tulane University. He later graduated from the University of Chicago Pritzker School of Medicine and completed his post graduate training at Walter Reed Army Medical Center. Since 1992, he's treated patients in Western Washington at Madigan Army Medical Center, The Polyclinic, Neuro-Opthalmic Consultants Northwest, and Swedish Medical System, where he currently practices. He describes his Philosophy of Care as: Neuro-ophthalmology is the field of medicine that bridges neurology and ophthalmology. I see patients whose visual symptoms are or may be due to neurologic problems. Many

This is what my stroke looks like on the MRI. Or rather, this is what it looked like while it was happening. See that white curved, bulge-y line on the just to the left of the black thing in the middle? That's it. At one end of the line is a blood clot that's not letting blood through. Since blood flow and other thick tissue blocks the signal, the white line indicates that there is nothing there. The image is essentially looking up my brain from the bottom. If the monitor you're looking at was 3D, my feet would be coming out the back of your head and the top of my head would be behind the screen. My face is at the very top of the image, and the back of my head at the bottom. That mean the clot is in the middle of the right side of my brain -- specifically my right middle cerebral artery (MCA). The MCA is pipe that is about an 1/8 of an inch wide (3.25-3.5 mm for the non-Americans). That's about the thickness of 3 and a half dimes (about 35¢). It takes very little material to block such a small space for a fe

I first encountered Dr. Debra Meyerson, Ph.D, through Twitter. She has written a book about stroke and the loss of a sense of identity that follows it. More than a memoir, it tells her story as she navigates the new, post-stroke world, and the stories of a couple dozen other survivors and how their reaction mirror or differ from hers. [caption id="attachment_851" align="alignright" width="166"] Production Assistant Oatmeal reads through Identity Theft.[/caption] She wrote the book because in her experience, not enough rehab facilities and hospitals adequately prepare survivors for the changing sense of self they are likely to encounter, especially as they face the real world with new disabilities. She sent me a copy of the book, and I'm happy to feature her and husband/caregiver Steve Zuckerman in this week's episode. Bio (From https://www.identitytheftbook.org/about-deb-meyerson) "My name is Debra Meyerson" It took me two years to re-learn that sentence! In 2010, when I was a professor at Stanford, I suffere