Strokecast

I've been very tired in April this year, and I think it's because I was very busy in March. In March, I took two major trips that I'm going to talk about today -- the JoCo Cruise, which I mention a few weeks back in my interview with Robin Wilson Beattie, and a trip to Pune India, which I talked about in Facebook live.  The JoCo Cruise was awesome as expected. I do sometimes worry that since I have high expectations that it meets, that I'm not walking away with the over the top feelings of awesomeness that some people do. Or maybe my affect is just a little flatter these days due to the combination of my stroke and meds. This year, there appeared to be more folks on the boat with visible disabilities than in years past. And we had more folks with both visible and invisible disabilities at the meetup for folks with disabilities. In general, it’s a really positive environment filled with helpful, caring people. If you like board games, nerdy things, or generally nerdy people, come join us next year. You can vi

A few weeks ago, I stopped by a Microsoft store to talk with the folks about the Xbox Adaptive Controller. It's an accessory that makes it possible for folks with disabilities to play the same video games as everyone else. Most people first encountered it during the Superbowl ad Microsoft ran. [embed]https://www.youtube.com/watch?v=_YISTzpLXCY[/embed] I shared some thoughts about it in a Facebook live video, and Occupational Therapist and US Army Veteran Erik Johnson reached out to me about some of the work he's been doing with this device. [embed]https://www.facebook.com/StrokeCast/videos/470339296837043/[/embed]   In this episode, Erik Johnson joins us to talk about the adaptive controller, the OT field, his story, and how gaming is changing the future of OT. Bio Erik Johnson enlisted in the Army in 1996.  As a young Private, while stationed in Germany, he was involved in a car accident where he sustained second and third degree burns to over 20% of his body, most of which were on his arms and hands.  He d

In this episode, we get to meet stroke survivor Peter Evans and his wife Ria. Peter survived massive hemorrhagic stroke in 2017 that left him with cognitive challenges and partial vision loss. It turned his and Ria's lives upside down. Their attitudes are really amazing though. They've taken this horrible event and are determined to extract every piece of value from it that they can. Peter, with Ria's support, is using his writing skills to drive increased support for stroke survivors. He's becoming a regular guest contributor to the Strokecast blog. He's become a supporter and advocate for support groups, and Ria is speaking out about the importance of advanced directives and other documentation so spouses and partners can most effectively support one another in times of crisis. Craniectomy In this episode, we do talk a little bit about finding Peter's skull. For those who may not be familiar with removing part of the skull as treatment, it's not uncommon in the treatment of stroke -- especially hemorrhagic

Each year, I spend a week on the JoCo Cruise. I talked about it last year in Episode 4, and this year was just as amazing. This year, I also met Robin Wilson-Beattie on the boat. She is a speaker, writer, and educator working at the intersection of disability and sexuality. We sat down on the ship's art gallery to talk about these issues and how they impact stroke survivors and other folks with disabilities. We met up on cosplay day which explains why Robin was in her full Wakandan warrior regalia. Probably. Bio Robin came into the world able-bodied, but had a birth defect that resulted in a spinal aneurysm. After scheduling surgery to fix the aneurysm, she learned she was pregnant. During the surgery, she acquired a spinal cord injury that resulted in partial paralysis. She continues to recover while living in San Francisco and helping folks with disabilities navigate the world of sex. Hack of the Week Robin recommends Amazon Prime and Delivery for folks living with disabilities. Considering the amount of

Here in the Pacific Northwest, we have some of the most amazing scenery and outdoor options in the country. So why do all your rehab in a clinic? Today's guest is Physical Therapist, Dr. Carol-Ann Nelson, the Founder and Executive Director of Destination Rehab in Bend Oregon. For those not familiar with the geography here, Bend is in the middle of Oregon, about a 6-hour drive South East of Seattle. It's surrounded by mountains, volcanoes, forests, a river and wildlife. It's an absolutely gorgeous city and region that I'd encourage anyone to visit. Destination Rehab combine PT with outdoor activities, taking advantage of all Central Oregon has to offer. They have year round program for folks in the area, and they offer week long Rehab Vacations for folks with neuro conditions who want to travel to the area. Participants include stroke survivors plus folks with MS, Parkinson's, TBI, Spinal Cord Injury, and other conditions. Bio Carol-Ann's love for the outdoors began during her years growing up in Oregon. She h

  Some months back, on my other show, 2-Minute Talk Tips, I interviewed speaker and coach Pat Roque about speaking and her fascinating journey. I'd encourage you to check that out over at 2minutetalktips.com/rockon. After that conversation, Pat and I continued talking and she told me I needed to talk with Gianna Rojas about the work we were each doing. Gianna Rojas is the One Handed Lady Golfer. Gianna was born with no fingers on her left hand, which makes golf challenging. Still, as an adult, she wanted to learn so she did. Now, Gianna runs AdaptiveGolfers.org where she and her team help stroke survivors and other folks with disabilities get back on the course, doing the thing they love -- playing golf. Gianna runs clinics in NJ and travels the country promoting Adaptive Golf. Key Facts about Gianna   ADAPTIVE ATHLETE - *USA Disabled Golf Team - Global Tour *Division winner of the 2017/2018 Para Long Drive Cup – Legends, Myrtle Beach SC, Par Tee - Columbia, SC *Division winner of the 2018 Adaptive Long Drive

This week, we learned about the tragic death of Luke Perry. He suffered a stroke at age 52 and did not survive. This sparked comments across social media that many of us have had to address only in personal conversations before. Namely: "I thought you had to be old to have a stroke!" Those of us who spend a lot of time dealing with and thinking about stroke know that is completely untrue. But most folks are not part of our community, and it takes a major celebrity death to really get people to think about it. My hope is that some good can come from this. If Luke Perry's death inspires more folks to check and know their risk factors, that's a good thing. If it encourages more folks to know the BEFAST warning signs of stroke, that is also a good thing. There's the potential for Luke Perry's death to save the lives of hundreds or thousands of other people by driving increased awareness and response to stroke and its causes. How Can You Help? Media attention can be fleeting so now is the time to take action.

Strokecast regular, neurologist Dr. Nirav Shah joins us again this week to talk about Remote Ischemic Conditioning. Essentially it makes the body more resistant to oxygen deprivation by depriving it of oxygen. It's a fascinating area. In some respects, it does the opposite of hyperbaric oxygen therapy. As we learned in episode 48, the theory is that Hyperbarics, which floods the body with extra oxygen at high pressure can bring back the stroke damaged brain tissue and help with recovery. And while hyperbaric oxygen therapy does help for a lot of conditions, the science doesn't back it up for stroke. Remote Ischemic conditioning does appear to have positive results in the early studies and may be helpful in the future. Does this mean you should go ahead and tie a tourniquet around your limbs to give it a shot? Absolutely not. That would be a terrible idea. At least for now. I like the potential in Remote Ischemic Conditioning. I also like that it is potentially simple, inexpensive, and something I can do at ho

Inspire Cafe Podcast I had the honor of appearing on Kathy De La Torre's The Inspire Café podcast. She started the podcast to understand what makes a person resilient. She explains her motivation like this: I am fascinated with the stories of human resiliency…. What makes these people tick?  What became their turnaround, ah-hah moment or the trigger that caused them to pivot, shift their thinking and turn away from their dark moment and face the light?  The idea of people actually putting into practice of making lemonade out of their lemons, turning a negative into a positive, is remarkable. This week, I talk with Kathy in detail about my stroke, stroke in general, and why I started this show. It's the latest version of my origin story. I'm truly humbled to be on Kathy's show, especially when I look at the other folks she's interviewed. So after you listen to Strokecast, head on over to The Inspire Café in your favorite podcast app and listen to episode 69. News from ISC19 Neurologists, researchers, and othe

I talk a lot about public speaking. Long time listeners to this show know that I also host a podcast about that topic where I help folks become more effective public speakers in as little as 2 minutes a week. Visit 2minutetalktips.com for more details. I was listening to Grant Baldwin's show "The Speaker Lab" one day when he was interviewing a guest who's focus was on how you can build a life in such a way to have an impact on the world. The guest came to have this perspective sitting on the kitchen floor having just suffered a stroke. Of course, my ears instantly perked up, and I knew I wanted to have Pete Smith on Strokecast to share his journey. There are a number of valuable insights in this discussion. We talk about the importance of language. We get to define our own context and choose how we see the world.  Are you a stroke victim or a stroke survivor? Is this the end of life or the beginning of a new type of life? Am I an unemployed middle-aged brain damaged cripple or a young, entrepreneurial survivo

Podcast Milestone This is Episode 52. It's the last episode before the show's 1 year anniversary. I have been doing the show every week for a full year now. Many podcasts don't make it past episode 7. I want to thank all my guests and listeners for generously sharing your knowledge, your time, and your attention as we work to help grow the connections within the survivor, caregiver, medical, and Friend of Strokecast communities. And of course, I have to thank my girlfriend Cathy for her fantastic, support, patience and graphic design on both the show and my general stroke recovery. And we're just getting started. If you're new to Strokecast, please subscribe for free in your favorite podcast app. Hospital Chats About 2 weeks after my stroke, I was laying in my hospital bed and was finally able to start thinking more in the mid-term -- what was life going to look like when I left the hospital. What lifestyle changes would I have to make? What was going to be different? What should I stop doing, and what should

This past fall, I read Christine Lee's memoir, "Tell Me Everything You Don't Remember." It's the story of her 2006 stroke and the recovery. A theme through the book is one of isolation. She lost her short term memory, and she lost her ability to communicate. For the first time in her life she had to learn to listen to herself and trust her intuition. Her memoir is about her journey through that series of new, confusing experiences to the different life she leads today. One thing she talks about is before going to the hospital, before realizing she was having a stroke, Aphasia was setting in. She lost the word for egg and could come up only with "shell bells." I'm not minimizing the pain of aphasia, but there is something beautifully poetic about that word substitution. After I finished the book, I reached out to Christine on Twitter and invited her to be on the show. I'm delighted she joined us and now I'm thrilled to bring you this conversation with Christine Lee. Christine Hyung-Oak Lee is the author of th

My first day in the hospital was filled with MRIs and CT Scans. Okay that a little exaggeration, there was only one MRI and 2 CT scans. Still, they were unpleasant. Plus, they're expensive, and you have to go elsewhere in the hospital. It turns out there's another option, that many neurologists don't even know about. It's called Transcranial Doppler Ultrasound, and it gives the medical team information the other scans don't. Plus, it involves no radiation or special rooms. It doesn't replace the other scans altogether, but give the doctors another tool for treating stroke patients. This week, I talk with Dr, Aaron Stayman from Swedish Medical Center. Dr. Stayman is an advocate for and expert in Transcranial Doppler Ultrasound. This week, we learn about his background, talk about aphasia, and spent the bulk of our time talking about Transcranial Doppler Ultrasound. We explore what it is, how it works, and how it benefits patients. Aaron cites 5  benefits of Transcranial Doppler Ultrasound It's cheaper There's

Many folks are surprised to find out adults in their 20s, 30s, and 40s can have stroke. What's often bigger news to people is that adolescents, children, newborns, and even fetuses can have a stroke. In fact, stroke in the womb is one of the leading causes of cerebral palsy. Stroke in kids was nothing I had never even thought about before I started this journey to learn more about my own brain injury. This week, I talk with one of the leading experts in childhood stroke. Strokecast regular, Dr. Nirav Shah, introduced me to Dr. Heather Fullerton. We had a fascinating conversation about stroke in children, the causes, and the generally optimistic recovery path. Bio Dr. Heather Fullerton is a pediatric vascular neurologist at UCSF, one of only a few child neurologists in the country with additional board certification in vascular neurology. She is the Kenneth Rainin Chair in Pediatric Stroke Care, Chief of Child Neurology at UCSF Department of Neurology, and director of the Pediatric Stroke and Cerebrovascular

Stroke recovery is a marathon; it's not a sprint. Regaining cognitive skills, physical skills, sensory skills, and more takes time and work. During that time, life can be really hard and unpleasant for many folks. The may or may not be able to work. Relationships get turned upside down, and after a while you just want it to go away. Surely, with all the advances in medicine, there must be something…some fancy technology or machine…some magic technique that will fix these problems, right? That leads folks to look for and explore alternatives. It also means that many survivors start pursuing things that don't work. Hyperbaric oxygen therapy appears to be one of those therapies. In Hyperbaric Oxygen Therapy, the patient spends time in a pressure chamber where the air pressure is 2-3X normal and breathes pure oxygen. They get roughly 8-12X as much oxygen as in their normal lives. This, supposedly, should grow new blood vessels in the brain and revive the dead neurons that were killed by the stroke, or drive new g

  When I had my stroke at 46, it took a little while for the medical team to settle on the cause. I suppose that's a good thing. We don't want them to rush to a conclusion. Ultimately, they concluded the probable cause was a history of high blood pressure. It didn't make sense to me at the time. In 2015 I developed high blood pressure, AKA hypertension, but I didn't know. That's the thing about high blood pressure -- it doesn't hurt. There was no pain. I only found out because during the last week of December, I began have massive 30 minute pouring nosebleeds every other day. I checked my blood pressure on a home blood pressure machine, and it registered more than 200 over 160. That and the random surprise bleeding got me into the doctor's office. They measured my BP at 162/102. So it had dropped from apparently ER levels by that time. Over the course of the next few months, we worked to get my BP under control through medication and some diet tweaks. By March of 2016, my BP was coming in at 105/75. Be Februa

This is the last episode of the year, and it's a little different. I'm sharing my 10 favorite hacks of the weeks for the year. Special thanks to Emilee Mason, Kristen Dingman, the folks from the Slow Road to Better, and Whitney Morean for their contributions. And thanks to all the guests who joined me and generously shared their stories in 2018 Before we get to the hacks, I want to share a story from Doctor Who. In the episode Heaven Sent, which is one of the best episodes the show has ever released, the lead character, The Doctor, a time-travelling super smart alien, finds himself stuck in some sort of prison. He has to gradually work his way out. Eventually, he figures out how, and he tells a story created by the Brothers Grimm about a bird: The Brothers Grimm, lovely fellas. They're on my darts team. According to them, there's this emperor and he asks this shepherd's boy, how many seconds in eternity? And the shepherd's boy says, there's this mountain of pure diamond. It takes an hour to climb it, and an h

Angie Jorgensen, Sarah Conaway, and Tamsen Butler are the Stromies -- The Stroke Homies. They are 3 stroke survivors brought together by this life threatening event many of us went through. They started a blog to share their stories in February 2018. It started simply, and other survivors followed. Then other survivors shared their stories. Dozens and dozens of survivors are now featured on the blog supporting their own recoveries by sharing their experiences and empowering readers looking to make a connection. The Stromie energy is a force. And it's just getting started. I connected with the Stromies from my home office in Seattle while they met up at a coffee shop in Omaha, NB. Sometimes it still amazes me that technology allows this to happen. Stromie Sarah is a busy mom and speaker. A survivor of both stroke and Lupus, her amazing recovery story provides hope for others. Stromie Tamsen is a mom, certified fitness instructor, and award-winning author. Her massive stroke at age 41 was unexpected and life-ch

I'm sure you're shocked to know that I love technology. And it's not just because I've spent a career in the industry. It's because these tools have the power to change lives. It's one reason I was thrilled to talk to Lana Malovana, the CEO of European Startup Raccoon.Recovery about their device and platform to support stroke recovery through video games. Raccoon Recovery originally made controllers for video games and VR. The genesis for the controller we talk about today was in 2016 when one of their engineers injured his hand and couldn't do his regular work. He moved to a testing role and his PT was blown away by the progress he made by using the controller at work. Raccoon made the pivot to rehab devices following meetings at TechCrunch in 2017. Lana will tell us more about that story. Another point we talk about is one that comes up here when we talk about therapy goal, or on my other podcast, 2-Minute Talk Tips, where we talk about benefits. Effective therapy isn't about achieving a certain level of mo

  Tracking Blood Pressure After my stroke (and before my stroke, too) I'm supposed to monitor my blood pressure regularly. That means I have to: Put the cuff on my arm Relax while it reads the data Record the data on my log Print off my log when I go see the doctor every few months Seems simple, right? Well here's where it gets complicated. Because my left arm was affected by the stroke, I can't get reliable blood pressure there. Tone, spasticity, occasional edema, lack of use, and variable circulation mean the results are less accurate. That means, I have to put the cuff on my right arm to get a reading. Have you ever tried to scratch your right elbow with your right hand? Yeah. You can see the challenge. As I've gotten a little more left arm use back, I can kind of get the cuff in place by also using my teeth. That involves frustration, effort, and all sorts of movement. You know what that does? Yup. It raises my blood pressure. When The GF is around, she can place the cuff which helps. Of course that's b