Recovery After Stroke

Recovery After Stroke

A Community And Podcast For Stroke Survivors And Carers

  1. 3d ago

    The One-Percenter Biker Who Turned His Stroke Into a Documentary

    How Making a Stroke Recovery Documentary Helped a Former One-Percenter Reclaim His Life Shayne DeMarce spent most of his adult life defined by physical strength. He rode Harleys through the Canadian Rockies in every season, ran a plumbing and heating business, and had recently begun prospecting with a one-percenter motorcycle club drawn there, he says, by the brotherhood at a time when his wife’s cancer diagnosis and a failing business were pulling the rest of his life apart. Then, on a low-speed group ride at under 20 kilometres an hour, his back wheel slid on loose gravel. To avoid landing on a fellow rider, he dove off his bike into a ditch and broke nine of his twelve ribs, his collarbone, and his scapula, punctured a lung, and tore his aorta. What nobody caught for another thirteen hours was that he’d also had a stroke. A Low-Speed Crash With High-Speed Consequences Shayne’s accident is a reminder that the danger in a fall isn’t always where it looks like it is. He walked away from the crash site convinced his injuries were broken bones, painful, but familiar territory for a man who’d spent a lifetime playing football, doing judo, and dirt biking. It wasn’t until he was in the truck heading to hospital, feeling suddenly and inexplicably worse, that anyone suspected something else was happening. By the time doctors in Edmonton confirmed it was a bilateral carotid artery dissection that had cut off blood flow to his brain, the left side of his body was already gone. He spent five months in hospital and ICU, then seven more in inpatient rehab. Non-weight-bearing for most of that time, he had to relearn how to exist in a body that no longer matched the identity he’d spent decades building. Losing the Body He Built His Identity On “I was a physical guy,” Shayne said. “My job was physical, everything about me was physical. So it wasn’t just my identity; it really was who I was.” For a man whose sense of manhood was tied to strength, work capacity, and being able to hold his own, losing the use of half his body wasn’t just a medical setback. It was, in his words, “very humbling.” The turning point came from an unexpected source: a blunt question from the principal at his rehab facility’s education centre. When Shayne told her his only goal was getting his body back, she asked him plainly, “So what if you don’t get your body back?” It’s a question that stroke survivors and their families rarely get asked directly, and it’s often the one that needs asking. Shayne describes it as heartbreaking in the moment, and something he’s since come to be grateful for. Why He Turned to a Camera Instead of a Gym That question pushed Shayne toward a skill he’d never have considered before his stroke: typing, then editing, then filmmaking. He describes teaching himself to type as doing more for his affected hand than any of his occupational therapy, and it opened a door to something bigger. Once home, he noticed a gap: plenty of content from doctors and news stations about stroke, but very little from survivors themselves, talking honestly about what recovery actually looks like. So he started the UpStroke Podcast. Then, within days of getting home from inpatient rehab, he set himself an ambitious goal: make a full-length stroke recovery documentary about his own experience, and finish it within six months. No film background, no crew, no guaranteed audience just early mornings, self-taught editing, and a refusal to let pride keep him from trying something that scared him. Making a Stroke Recovery Documentary From the Ground Up The finished film runs 55 minutes and represents hundreds of hours of work planning, scripting, filming, and re-filming after the inevitable rookie mistakes (forgotten microphones, unrecorded interviews, background noise nobody caught until the edit). Shayne interviewed his own kids and friends for the film, describing the process as “ripping the same band-aid off fifty times a day for six months straight.” What makes a stroke recovery documentary like this different from a polished studio production is exactly what makes it valuable: it was built by someone still living the recovery it documents, using the same self-taught persistence he’d once applied to fixing pipes and riding through winter. Screening the Film for the People Who Understand It Most The most meaningful moment of the entire project, Shayne says, wasn’t a premiere or a review; it was screening the documentary at the rehab facility where he’d been an inpatient, for a room that was roughly 80% stroke survivors and staff. He remembers patients in that same gymnasium who never had a single visitor in six months, and he now sees his film and podcast as a way to reach exactly those people: the ones running out of hope in a system that doesn’t always have room to give them much of it. A New Club Shayne no longer rides with the one-percenter club he’d started prospecting with before his accident. He describes his community now as “a bunch of stroked out strokers,” the friends, fellow survivors, and families he’s met through the podcast and the film. It’s a different kind of brotherhood than the one he set out to find, but by his own account, it’s the one that’s carried him. His documentary is now available free on YouTube, so that as many stroke survivors, caregivers, and healthcare professionals as possible can watch it. If Shayne’s story resonates with where you are in your own recovery, Bill’s book, The Unexpected Way That A Stroke Became The Best Thing That Happened, walks through ten tools for recovery and personal transformation built from these same kinds of conversations: recoveryafterstroke.com/book. If this show has helped you, you can support it at patreon.com/recoveryafterstroke. Footer Disclaimer: This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan. The transcript will be available soon… The post The One-Percenter Biker Who Turned His Stroke Into a Documentary appeared first on Recovery After Stroke.

  2. Jul 21

    Hormones, Fatigue, and the Brain: Dr. Robert Hedaya Returns

    Why Your Stroke May Not Be Causing Your Brain Fatigue For a long time after my brain surgery, I assumed my body worked like this: the stroke happened in my head, so whatever went wrong afterward would also happen in my head. Fatigue, brain fog, slow thinking all of it filed under “neurological,” all of it explained by the injury I already knew about. That assumption turned out to be wrong, and the way I found out was almost accidental. About eighteen months after my brain surgery, I had thyroid surgery to remove a nodule so large it had pushed my windpipe and esophagus six centimeters out of place. I had no idea it was there. No lump I could see, no difficulty swallowing or breathing that I’d noticed. It was found only because I had a chest X-ray to rule out an infection, and a doctor spotted something that had nothing to do with why I’d walked in. What followed was a slow, confusing recovery from that second surgery, and a wave of fatigue I automatically blamed on my brain, because that was the injury I already understood. It took time to realize the fatigue might be coming from somewhere else entirely: my thyroid. Hormones and Stroke Recovery: The Connection Nobody Talks About I brought this experience to Dr. Robert Hedaya, a Clinical Professor of Psychiatry at Georgetown University Medical Center and a pioneer of functional medicine psychiatry, to understand what actually happened, and to ask a bigger question: how many other stroke survivors are dealing with fatigue, brain fog, or mood changes that they’ve written off as “just the stroke,” when the real driver is a hormonal system that’s quietly stopped working properly? Hormones and stroke recovery turn out to be far more entangled than most of us are told. As Dr. Hedaya put it plainly: the brain is a hormonal organ. Thyroid hormone, cortisol, testosterone, estrogen every one of them acts directly on brain tissue, and every one of them can be knocked off balance by the stress of a major medical event. Why “Normal” Thyroid Bloodwork Can Still Mean Something’s Wrong One of the most important things Dr. Hedaya explained is that a “normal” TSH result doesn’t rule out a thyroid problem, especially after a stroke. TSH is a signal sent from the pituitary gland, and if a stroke has affected the brain’s signaling pathways, the pituitary itself may not respond the way it should. A survivor can have genuinely low thyroid hormone while their TSH sits comfortably inside the standard reference range, because the system responsible for raising that number in response to a deficiency isn’t functioning correctly. He also raised a striking data point: population studies suggest the average TSH in a healthy population is closer to 1.4, yet most labs still use an upper reference limit of 4.5, a range wide enough, statistically, to miss a real problem. His advice for survivors going into a GP appointment: ask specifically for TSH, free T4, free T3, and reverse T3, not just the standard single-marker test, and come prepared with symptoms written down if a doctor pushes back. A Nodule That Grew in Silence The brain is a hormonal organ. It’s an immune organ. It’s a neurological organ… there’s not one hormonal axis when it’s abnormal that cannot cause neurological or psychiatric problems. -Dr. Robert Hedaya My own nodule is a case study in exactly this kind of silent progression. Dr. Hedaya explained that because it grew inward rather than outward, it never created the visible lump most people associate with a thyroid problem, and because it didn’t press on my vocal cords or laryngeal nerve, I never developed the hoarseness that might have flagged it sooner. My body adapted gradually, and the fatigue that eventually surfaced was easy to misattribute to the injury I already knew I had. Cortisol, Stress, and the Difference Between Pain and Suffering Beyond the thyroid, Dr. Hedaya walked through the role of cortisol, the body’s primary stress hormone, and why survivors often struggle to answer a deceptively simple question: “Are you stressed?” His distinction between pain and suffering is worth sitting with: pain is often unavoidable, but suffering is shaped by the story we tell ourselves about a situation, and a stroke can compromise the very brain systems that regulate that stress response in the first place. Testosterone, Estrogen, and the Brain’s Need for Hormones to Rewire The conversation closed on sex hormones, testosterone and estrogen, relevant to both men and women, and their role in neuroplasticity. Dr. Hedaya drew a direct comparison to adolescence: the teenage brain rewires itself while hormone levels are surging, and the same principle applies after a stroke. A brain trying to rebuild pathways needs adequate hormonal support to do that work. Without it, recovery can stall in ways that have nothing to do with effort or physiotherapy. What You Can Do About It If any of this sounds familiar fatigue that doesn’t track cleanly with other recovery milestones, or symptoms a doctor has waved off as “just stress,” Dr. Hedaya’s PNIE (psycho-neuro-immuno-endocrinology) questionnaire is a useful starting point. PNIE Questionnaire download: https://drive.google.com/file/d/1S7kC5uMFgBfS-gWcUOIHp0kOjGnrzZK5/view?usp=sharing If thyroid function specifically is what you’re navigating, the earlier conversation with Dr. Elena Zinkov, “Stroke Fatigue and Thyroid,” goes deeper into that piece (https://recoveryafterstroke.com/stroke-fatigue-and-thyroid/). And for more from Dr. Hedaya, the first conversation on photobiomodulation and stroke recovery is a good companion listen (https://recoveryafterstroke.com/photobiomodulation-stroke-recovery/). Getting your body back after a stroke is rarely just about the brain. My book, The Unexpected Way That A Stroke Became The Best Thing That Happened, goes further into the mindset shifts that came out of my own recovery (recoveryafterstroke.com/book). And if this podcast has helped you, you can support its continuation at patreon.com/recoveryafterstroke. This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan. Hormones, Fatigue, and the Brain: Dr. Robert Hedaya Returns (Interview) A baseball-sized thyroid nodule hid in plain sight after Bill’s stroke. Dr. Hedaya explains the hormone testing every survivor should ask for. Support The Recovery After Stroke Podcast Bill’s Book: The Unexpected Way That a Stroke Became Thethe Best Thing That Happened Highlights: 01:45 Hormones and Stroke Recovery 02:11 Understanding Thyroid Function and Its Impact 17:07 Navigating Thyroid Health with Healthcare Providers 27:09 The Role of Stress and Cortisol 39:09 Nutrition’s Impact on Brain Recovery Transcript: Hormones and Stroke Recovery Bill Gasiamis (00:00) And they noticed a massive lump in my throat and my esophagus and my windpipe were pushed six centimeters. And they said to me, well, can you swallow? Can you breathe? Can you do it? And I was like, yeah, I’m all fine. There’s nothing wrong with my throat. that was the first sign that there was something wrong with my thyroid Bill Gasiamis (00:19) Welcome back to Recovery After Stroke. I’m Bill Garciamas, and today I’m joined again by Dr. Robert Hedeya, clinical professor of psychiatry at Georgetown University Medical Center and a pioneer of functional medicine psychiatry, whose highland approach to brain health first brought him onto the show for our conversation on episode 404, where we discussed, amongst other things, photobiomodulation, a type of transcript. cranial laser therapy helping some stroke survivors recover lost function. He’s back today for a conversation I wanted to have for a while, the hormonal side of stroke recovery. We’re going to talk about thyroid function, cortisol, and stress physiology, and sex hormones like testosterone and estrogen, and why every one of these systems can directly affect how well and how fast your brain recovers. I’ll also share my own story of a thyroid nodule that grew undetected, which was discovered after my brain surgery completely by accident. if this conversation resonates with you, my book, The Unexpected Way That a Stroke Became Thethe Best Thing That Happened goes deeper into the mindset shifts that shaped my own recovery. You can find it at recoveryafterstroke.com/book. And if you’d like to help keep this podcast going, you can support it financially at patreon.com/recoveryafterstroke. Bill Gasiamis (01:46) Robert Hedaya, welcome back to the podcast. Dr Hedaya (01:49) Thank you for having me, Bill. Understanding Thyroid Function and Its Impact Bill Gasiamis (01:51) thank you for being here. The last conversation we had was very well received. And it’s always difficult in a one hour interview to ask all the questions that we could possibly ask about the brain and stroke recovery and all the things that people go through. And… I’ve got a lot of other questions that are related to the brain and the link between other parts of the body and the brain, because we have this sense. Well, I did at least when I was first diagnosed that whatever happens in my head is kind of isolated, that it just impacts my head. But there seemed to be some other impacts and cascading effects. that were occurring, uh, that I didn’t know were linked to the brain injury, Dr Hedaya (02:45) Yeah. Bill Gasiamis (02:46) maybe indirectly, but they were perhaps. But one thing specifically that happened to me about, uh, 18 months after my brain surgery was I had thyroid surgery to remove a nodule on my thyroid. And when I was going through the recovery after that, surgery, I noticed that I had fatigue and I thought it was neurological fatigue related to my brain surgery. But it took a long time to develop an understanding that perhaps tha

  3. Jul 15

    Jeff Manuel: Raising My Kids Through a Stroke and Learning to Like Myself Again

    Single Parent Stroke Recovery: How Jeff Manuel Is Rebuilding His Life for His Kids Jeff Manuel was working two jobs to provide for his two teenage kids – a full-time role in electrical sales plus evening grocery-delivery shifts – when a stroke at 52 changed everything about how he could show up for them. Four years later, he’s not back to where he was. He’s become someone different, and by his own account, someone he likes better. A Normal Saturday Morning, Then Everything Changed Jeff’s stroke happened on a Saturday in March 2022, but the warning signs started the night before, on his last work shift. The next morning he made coffee, showered, and drove to drop off his kids’ things at their mother’s house in West Kelowna. When she opened the door, she immediately knew something was wrong – his face had visibly dropped. A local clinic ran a squeeze test that came back fine and prescribed inhalers for what they assumed was a breathing issue. It wasn’t until Jeff tried to pick up oranges with his left hand an hour later, and couldn’t, that they went to the hospital. A CT scan confirmed he’d had a stroke. He couldn’t move his arm or his leg. Raising Two Teenagers From a Hospital Bed Single parent stroke recovery comes with a particular kind of weight: the practical question of who looks after your kids while you can’t. Jeff and his ex-wife were separated but living close by, and when he was hospitalized for three months, she and their children – a boy and a girl, both thirteen at the time – stepped in to support him. She’s been doing a lot for me, and I really appreciate it. What could have been an awkward or strained dynamic instead became a stronger friendship than the one they’d had before the stroke. Jeff is candid about why the timing mattered to him: Thank goodness it happened when I was only fifty-two and not seventy-eight, when they’d got their families all grown up and their own worries. I didn’t want to be a worry to their father. His kids are now nearing graduation, and he stays in touch by text and phone, even though he doesn’t get to see them as often as he’d like. Two Years Learning to Live Again After hospital, Jeff moved into a residential rehabilitation program called Connect Communities, where he spent two years relearning basic independence – from walking to cooking to managing a wheelchair-accessible home. Progress wasn’t linear: partway through, his wheelchair tire caught on a mat and led to a fall that required a hip replacement, adding more recovery time on top of the stroke rehab. The program used occupational therapy milestones to unlock privileges – once he could complete a task within a set time, he earned the ability to grocery shop and cook for himself, working up to preparing a meal every night. That system became his bridge from full-time care toward the assisted living arrangement he’s in now, which he describes less as being stuck and more as “graduating” toward independent living. Managing Pain That Doesn’t Go Away Chronic pain has been one of the harder, more persistent parts of Jeff’s recovery – constant pain and tension on his left side, in his shoulder in particular. After four years of prescribed medication, Jeff made his own decision to stop his pharmaceutical pain pills and manage his pain with medicinal marijuana gummies instead, taken a few times a day. He credits them with helping not just with pain, but with sleep and digestion too. This is Jeff’s personal experience and decision, made under his own judgment about his body after years of living with it post-stroke – not a treatment recommendation, and as always, any change to medication should be made in consultation with your own medical team. A Rebirth, Not Just a Recovery What comes through most clearly in Jeff’s story isn’t the physical rehabilitation – it’s the internal shift alongside it. He describes the last ten years before his stroke as a period of grief he hadn’t fully processed, following the deaths of his mother and sister, and a tendency to put himself first that he says didn’t serve his family. The stroke, paradoxically, became the catalyst for the opposite: I’d like myself again because I know I’m a good person. He talks about his recovery in openly spiritual terms – leaning on his mother’s belief that “everything happens for a reason,” and describing his body’s limitations as temporary: “This is only part of your meat suit.” He’s quick to add that this reframing isn’t about denying the hard days. It’s about noticing small, cumulative wins: Sometimes you’re not aware of what’s happening, and then you think about it – I couldn’t do that yesterday, now I can. What Keeps Him Going Jeff found Recovery After Stroke the same way many listeners do – searching for answers in a hospital bed, trying to understand what had just happened to him. I’ve seen so many other people going through it. It really did help me. Now, four years on, he’s paying that forward by sharing his own story, pain and all, with the same honesty he found helpful when he needed it most. If Jeff’s story resonates with your own recovery – or your own path back to being fully present for the people who depend on you – Bill’s book, The Unexpected Way That A Stroke Became The Best Thing That Happened, digs deeper into this kind of transformation: recoveryafterstroke.com/book. If this show has helped you, you can support it directly at patreon.com/recoveryafterstroke. This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan. Jeff Manuel: Raising My Kids Through a Stroke and Learning to Like Myself Again (Interview) A single dad’s 4-year journey from hospital to independence – raising his kids, relearning to cook, and rebuilding who he is. Highlights: 00:00 Jeff’s Journey: Single Parent Stroke Recovery 04:01 The Day of the Stroke 06:42 Personal Transformation Post-Stroke 09:03 Rewiring the Brain and Recovery 11:04 Support During Recovery 13:32 Mindset and Spiritual Growth 15:25 Challenges of Recovery 18:52 Personal Transformation and Reflection 20:24 Daily Life in Assisted Living 24:01 Pain Management and Coping Strategies 26:28 Future Aspirations and Independence 28:13 Finding Community and Sharing Stories Transcript: Jeff’s Journey: Single Parent Stroke Recovery Jeff Manuel (00:00) Once you get over what has happened, you become a better person. I like myself again because I know I’m a good person. if it takes another four or five years to walk again, it takes that. But if I can get as many tools into my tool chest, I can use later in life. Bill Gasiamis (00:18) Welcome back Recovery After Stroke. I’m Bill Gassiamis. My guest today is Jeff Manuel, a single father of two teenagers who was working two jobs full time in electrical sales plus evening grocery delivery when he had a stroke at 52 that left him with left-side paralysis. Jeff describes his stroke as involving a clot and possibly a bleed as well. The exact clinical picture is something we talked through together in the episode. We get into what it’s like raising teenagers through three months in hospital and two years in residential rehab, and how his relationship with his ex-wife has changed since the stroke, how he’s learned to cook again with one hand and the pain management approach he’s landed for himself after four years of recovery. Quick note before we dive in, if you’re feeling stuck in your own recovery, I now offer one-on-one coaching for stroke survivors. It’s not therapy or medical treatment, it’s lived experience support, structure, accountability, and someone who’s actually been where you are, having survived three strokes myself. I only work with a small number of people at a time, so it stays meaningful. You can apply at recoveryafterstroke.com/momentum. If Jeff’s story resonated with you, I also wrote a book about my own experience called The Unexpected Way. That a stroke became the best thing that happened, it is available at recoveryafterstroke.com/book. And if this show has helped you, you can support it directly at patreon.com/recoveryafterstroke. Here’s my conversation with Jeff. BIll Gasiamis (01:58) Jeff Manuel. Welcome to the podcast. Jeff Manuel (02:01) Thanks for having me. BIll Gasiamis (02:01) Tell me a little bit about what life was like before stroke. What were your daily tasks? What kind of things did you get up to? Jeff Manuel (02:10) at the time I had two jobs. I had full time journal day and then after after the day job I would go and And I was I was before I was in a loop to try to catch up and Provide for my family. BIll Gasiamis (02:22) What kind of jobs did you do? Jeff Manuel (02:23) I was my last job was in sales, electrical sales. And I used to I would pick groceries for customers that were just driving by and picking up the groceries. So I’d pick mostly the the dry goods and have it ready for when they eat when they were ready to pick up the groceries. BIll Gasiamis (02:41) Was that the after hours job? Jeff Manuel (02:42) Pardon me? BIll Gasiamis (02:42) Was that the after hours task? Jeff Manuel (02:45) Yes. BIll Gasiamis (02:45) And how many hours a a week would a day would you say you were working then? Jeff Manuel (02:48) I’d be I’d probably have four four four shifts a week. Sometimes less. BIll Gasiamis (02:53) And on the day of one of your shifts. Jeff Manuel (02:54) It was manageable at the time. BIll Gasiamis (02:56) It was manageable. Jeff Manuel (02:57) Yes. BIll Gasiamis (02:57) And on the day of one of the shifts that you went to your regular job and then you did one of those shifts, how ma

  4. Jul 6

    Robert Schmidtbauer – Building a Voice for My Brother

    Aphasia Communication App: How One Brother Gave a Stroke Survivor His Voice Back For four or five hours, Robert Schmidtbauer’s younger brother lay on the floor of their Wisconsin home, unable to get himself up. Robert found him when he got home from a late shift driving cabs. His brother had been drinking that night, but this wasn’t alcohol; it was a stroke, one that would put him in the University of Wisconsin Hospital for three weeks and in rehab for six months. His brother was already living with ataxia, a rare progressive condition that had taken his ability to walk and had begun to affect his speech. The stroke made it dramatically worse. Today, unless you know him well, you’ll understand only 60 to 70 percent of what he says. It’s usually the end of a sentence, the last few words, the part that carries the point that disappears. Robert became the translator. For years, every visitor, every relative, every tradesperson needed him in the room to fill in the blanks. Then he built something better: an aphasia communication app called Larry’s Speakeasy, priced at nine dollars for life, now used by people in 20 countries. When the Speech Problem Has No Official Name One detail of this story will be familiar to many stroke families: Robert’s brother has never been formally diagnosed with aphasia. The doctors attributed his speech difficulties to the combination of ataxia and stroke and left it there. After a year of speech therapy and his own reading, Robert concluded there was “probably some of that in there,”  but no clinician ever gave the problem a name. That matters, because a diagnosis is often the doorway to resources. Without one, nobody hands you a communication aid, a device funding pathway, or even a list of options. Robert’s brother got speech therapy two or three hours a week while it lasted, some practice phrases to take home, and nothing else. The Gap Nobody Warns Stroke Families About Rehab ends. The communication problem doesn’t. When Robert’s brother came home, the brothers developed their own system: Robert would catch 90 percent of a sentence, ask him to repeat the rest up to three times, and then ask him to spell the words letter by letter. That was the system for years. Robert credits his stint teaching English online to students around the world for training his ear to listen closely. But the system only worked when Robert was in the room. The moment that changed everything was ordinary: a new housekeeper came to quote on cleaning, and Robert’s brother, who runs the inside of the house, couldn’t make himself understood on the details. Robert stood in the middle, finishing sentences. He’d felt like a “third wheel” through his brother’s rehab, looking for a way to genuinely help. Standing in that kitchen, he found it. “I had one person on my wing that no one else in the building could understand but me. And even I had a 50% chance of understanding what he really wanted.” — a care facility director, on why a tool like this matters What Is an Aphasia Communication App? An aphasia communication app is software that speaks for a person whose own speech is impaired a modern, affordable form of what clinicians call AAC (augmentative and alternative communication). Larry’s Speakeasy does two things, deliberately kept simple: Type-to-speak. If your hands still work, you type any phrase or sentence, and the app says it out loud. One-tap phrases. For people with limited hand function, pre-made buttons cover emergencies (“I need to go to the bathroom,” “call the doctor”) and everyday phrases hello, goodbye, and a growing list Robert adds to as users suggest them. The market Robert walked into explains why he built his own. At the affordable end, there’s roughly one comparable app at around $13. After that, the next step up starts near $150 and climbs to $7,000–$8,000 for dedicated equipment that requires training and support to operate. Between a cup-of-coffee app and a small car’s worth of hardware, there was almost nothing. Robert priced Larry’s Speakeasy at $8.99 once, for life. “It’s not here for me to get rich off of,” he says. “It’s my brother, and I want it to help.” Built With AI, in Days, by a Retiree Robert is 67, with a background in television and radio rather than software. He’d spent months learning to work with AI tools and, in his words, cussing and swearing at the computer. When the housekeeper moment landed, he posed a different question to the AI: how can I help my brother’s speech?  And had a working version running within about two or three days, refined over the following months. That’s worth pausing on. The tools to solve a real disability problem at kitchen-table scale now exist for people who aren’t programmers. A determined care partner built, tested, and shipped an aphasia communication app from rural Wisconsin no company, no funding, no advertising. Around 260 people across 20 countries have tried it, and it’s listed as a resource on the National Aphasia Association website. More Than an Emergency Button The use cases stretch well beyond the kitchen: Therapy practice. Practice phrases from a speech pathologist can be loaded into the app and drilled at home with or without a partner. Video calls. Open the app in one window and Zoom or FaceTime in another, and a person who can’t speak clearly can hold a conversation with family anywhere in the world. Robert saw his own mother’s isolation in a care facility years ago; this is his answer to it. Care facilities. An iPad on a care cart could let staff understand residents nobody else can and document requests, which protects residents and facilities alike. Where to Find It The app lives at LarrySpeakeasy.com, with a seven-day free trial before the one-time $8.99 purchase. Try it, and if it helps, it helps, as Robert puts it; there’s no push. Stories like Robert’s are why this podcast exists: ordinary people refusing to accept the gap between what the system provides and what recovery actually needs. If that resonates, my book, The Unexpected Way That A Stroke Became The Best Thing That Happened, shares ten tools for recovery and personal transformation drawn from my own stroke journey and hundreds of survivor interviews; you’ll find it at https://recoveryafterstroke.com/book. And if this show has helped you, you can support it at https://patreon.com/recoveryafterstroke. This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan. Robert Schmidtbauer – Building a Voice for My Brother (Interview) After a stroke, Robert’s brother lost clear speech and had no tools to cope. So Robert built one: a simple app that speaks for those who can’t. Highlights: 00:00 Introduction – Aphasia Communication App 01:21 Challenges in Communication Post-Stroke 05:17 Stroke Experience and Recovery 12:20 Communication Challenges and Solutions 17:43 Creating Solutions Through AI 18:03 Introducing the Aphasia Communication App 21:13 Expanding Accessibility in Care Facilities 27:14 Final Thoughts and Resources 29:19 Bridging Communication Gaps 30:14 Resources for Stroke Survivors Transcript: Introduction – Aphasia Communication App Robert (00:00) If I ask him three times, I still can’t understand it. Like, spell it for me. You know, so I mean, that’s kind of how we got by until I developed this app. Lacunar Stroke New Research (00:10) Hello, everyone, and welcome to another episode of the Recovery After Stroke Podcast. Before we get into it today, I want to say a massive thank you to all my Patreon supporters and to everyone who supports this podcast. You are the reason this show keeps going. And I appreciate every single one of you. If you’d like to help keep these episodes coming, you can support the show at patreon.com/slash recovery after stroke. And if you’re looking for tools to guide you, On your own recovery, my book, The Unexpected Way that a Stroke Became, the best thing that happened, is available at recovery after stroke.com slash book. Now, today’s episode is a little different. My guest is Robert Schmidtbauer. And Robert is not a stroke survivor, he’s a care partner. His younger brother was already living with ataxia, a rare condition affecting his muscles and speech, when a stroke six or seven years ago made communication between the two brothers harder than it had ever been. In this conversation, we talk about what it’s like to be the person who translates for someone you love, what happens when rehab ends and the communication problem doesn’t? And what Robert decided to do about it. Something that might genuinely help other families in the same situation. Challenges in Communication Post-Stroke BIll Gasiamis (01:30) Robert Schmidtbauer welcome to the podcast. Robert (01:33) Thank BIll Gasiamis (01:33) can you give me a little bit of a rundown on you and your relationship with your brother before he had a stroke? Robert (01:42) My brother’s nine years younger than I am, so he’s 56, no, 58 now. And we’ve been living here. He originally got out of high school, went to travel school in Minneapolis, Minnesota, and lived there for a number of years. He has a taxia, and he moved home. to my mother’s house. Let’s see, we’ve been here 16 years now in this house living together. And he moved home about 20 years ago. Not quite, maybe like 18, 18 and a half. The ataxia took away his ability to walk. I’m not sure if you’re familiar with ataxia, but it’s kind of like in the muscular dystrophy realm. And it’s very, very, very rare. he attacks your muscles. depending on the seriousness and the kind, there’s like 20 different kinds. You probably wind up dying from it because it slowly affects your muscles. And the first things to go usually are your ex

  5. Jun 30

    She Was Told She’d Never Walk Again – Her PT Proved Them Wrong | Dr. Kory Langwell

    Walking After Stroke: What Your PT Knows That Your Doctor Doesn’t A doctor walked in, ran a reflex test, and told the patient they would never walk again. That same day, a physical therapist from Dr. Kory Langwell’s team arrived. The patient was in tears. And then they walked 70 feet. “I hope you go back and tell that doctor,” Kory said, “that they missed that.” Dr. Kory Langwell is a Doctor of Physical Therapy with over 15 years of experience. He runs a mobile home therapy practice across Southern California, and now coaches stroke survivors worldwide through his virtual program at Unlimited Potential Physical Therapy. In episode 410 of the Recovery After Stroke podcast, Kory broke down the realities of walking after stroke what’s actually possible, where the system fails survivors, and what a good physical therapist knows that most doctors don’t. The Moment the System Stops For most stroke survivors in the United States, recovery starts with intensity. In the hospital, you might receive three hours of therapy a day. Then you go home. Within weeks, that drops to thirty minutes, once or twice a week. “Insurance doesn’t know when your brain stops recovering,” Kory says. “Therapy ending doesn’t mean progress ends.” The problem is that for many survivors, the message lands the other way around. When the funding stops, the belief follows: that recovery is over, that this is where they plateau, that there’s nothing left to do. That belief, more than the stroke itself, can stall everything that comes next. The Plateau Is Not a Full Stop One of the most damaging phrases in stroke recovery is “you’ve plateaued.” It implies that the brain has reached its ceiling, that whatever function you have now is what you’ll have forever. Kory pushes back hard on this. “I’ve seen progress years, decades, 10 to 20 years after a stroke. Arms, hands, legs, walking ability. People just get fed up and stop looking for resources.” What a plateau usually means is that the current approach has stopped working, not that progress itself is impossible. The clinical response isn’t to discharge the patient. It’s to audit what they’re doing and change something. Different exercises, different load, different feedback. Reassess in six weeks. See what moves. Walking After Stroke: Why More Isn’t Always Better Walking after stroke is where survivors often get their first taste of both independence and confusion. The instinct, and it’s a good one, is to walk more. Further, longer, more often. But Kory draws an important distinction between the acute stage and everything that comes after. In the early weeks post-stroke, more isn’t always better. If someone can walk five steps, pushing them to twenty-five on back-to-back days may overtax the neurological system rather than rebuild it. Fatigue compounds quickly. Quality collapses. And when quality collapses, the brain reinforces the wrong patterns. “I’d rather have somebody walk 50 feet really well than 150 feet terribly,” Kory says. Visual feedback changes this completely. When survivors watch themselves walk in a mirror, or on a phone recording, they often see something very different from what they feel. Bill Gasiamis described exactly this: convinced his running gait was dangerous, he watched the footage and found it was far better than he’d thought. The problem wasn’t the movement. It was the feedback. Once a survivor moves into the chronic stage months or years post-stroke, the calculus shifts. Walking remains one of the best exercises available. Kory also recommends walking backwards in a safe environment like a hallway or near a kitchen sink: it challenges balance, engages the brain differently, and creates new neurological input. Why Falls Happen – And What Actually Prevents Them Falls after stroke aren’t random. They follow a pattern. The clinical term is proprioception: the brain’s sense of where the body’s joints and limbs are in space. After a stroke, this system is often disrupted. Survivors may not feel their foot on the ground, or may not register that a leg isn’t bearing weight the way it needs to. Add a divided attention task carrying a plate, thinking about turning off the television, reaching for something, and the risk multiplies immediately. Bill described this directly: he’d made a sandwich, sat down, finished eating, and went to stand up. His attention was on getting the plate to the sink without dropping it. His left leg wasn’t registered as being on the floor. He fell before he’d taken a step. The countermeasure is simple: stop, feel the floor, confirm the leg is active before moving, then carry the plate. Step by step, not simultaneously. Foot Drop, AFOs, and Electrical Stimulation Foot drop, where the muscles that lift the front of the foot are weakened or uncoordinated, is one of the most common walking challenges after stroke. Many survivors are placed in an AFO (ankle foot orthosis) to manage it. Kory’s view on AFOs is measured: they’re a tool, not a sentence. Whether to wear one, when, and whether to eventually stop using one depends entirely on the individual. “Take it off every once in a while if you’re in a safe environment,” Kory advises. “That gives new input to the brain a chance for things to improve.” Electrical stimulation is another tool worth exploring. Kory recommends starting with an affordable unit available on Amazon for around $40 to test whether the technique produces results before investing in higher-end systems. You can find Kory’s recommended unit at linktr.ee/unlimitedpotentialpt. The “Life Athlete” Mindset Kory calls his stroke survivor clients “life athletes.” Not because they run marathons or lift heavy, but because athlete thinking produces athlete results. Athletes track. They audit their approach. They celebrate small gains. They adjust when progress slows. And they don’t let one bad assessment from one clinician define what they believe is possible. “If somebody told you you’d never walk again, you can take that feedback and use it as motivation,” Kory says. “Or you can let it get you down. That’s up to you.” What to Do With a Limiting Prognosis When a doctor says “you’ll never walk again,” it’s rarely cruelty; it’s usually outdated thinking. General practitioners have limited training in neurological rehabilitation. Some are still working from research that concluded recovery stops at six months or a year. That conclusion was drawn from patients who stopped therapy and stopped trying, not from the brain’s actual ceiling. “I just want to leave the door open,” Kory says. The research on neuroplasticity is clear: the brain continues to adapt when given the right challenge, the right environment, and enough time. A prognosis isn’t a prophecy. It’s a snapshot of what one clinician observed on one day. Walking after stroke real, functional, independent walking is possible far longer and far later than most doctors suggest. And sometimes, it happens the same day they said it never would. If this episode has helped you, Bill’s book The Unexpected Way That A Stroke Became The Best Thing That Happened shares the tools and mindset that made the difference across his own recovery. If the Recovery After Stroke podcast has been valuable to you, you can support it financially at patreon.com/recoveryafterstroke. This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan. She Was Told She’d Never Walk Again – Her PT Proved Them Wrong | Dr. Kory Langwell (Interview) Dr. Kory Langwell on the therapy gap, foot drop, and why the plateau after stroke is a label not a limit. Highlights: 00:00 Introduction – Walking After Stroke 07:24 Insurance and Therapy Limitations 11:22 Supporting Survivors and Caregivers 16:45 Community and Support in Recovery 26:57 The Impact of Electrical Stimulation in Rehabilitation 29:17 Walking: Quality Over Quantity in Recovery 30:25 Understanding the Stages of Recovery 36:39 Navigating the Challenges of Falling Post-Stroke 42:05 Setting Realistic Goals for Recovery 44:46 The Role of Medical Professionals in Rehabilitation Transcript: Introduction – Walking After Stroke Kory Langwell (00:00) So we had a client recently there. Doctor told them they were never gonna walk again. And literally, like they our therapist showed up, the patient was in tears, and then they walked 70 feet with our therapist. And it was all because it was a doctor that didn’t know them. They did like some reflex testing and said, you’re hyporeflexic, you’re never gonna walk again. And then literally that same day walked 70 feet. I was like, I hope you go back and tell them, BIll Gasiamis video 25, image (00:23) Before we get into today’s conversation, I want to extend a genuine thank you to everyone who supports this show. Whether you’ve joined as a YouTube member, contributed through Patreon, left a review, shared an episode, commented, or picked up a copy of my book, You Are the Reason This Podcast Keeps Going. Today’s guest is Dr. Corey Langwell. A doctor of physical therapy with over 15 years of clinical experience. Corey runs a mobile therapy practice across Southern California and now coaches stroke survivors worldwide through unlimited potential physical therapy, a virtual program built for people who can’t access the in-person care they need. In this conversation, we get into the gap that opens up the moment you leave hospital. While the word plateau might be the most dangerous word in stroke recovery, What physical therapists know about walking after stroke that most doctors do not, and what it actually takes to keep making progress, years or even decades post-stroke. If you’ve ever been told there’s a ceiling on your r

  6. Jun 22

    Walking More, Falling Less – A Researcher’s Mission to Stop Stroke Survivors Hitting the Ground

    Falls Prevention After Stroke: What the Latest Research Reveals About Staying Safe and Mobile For many stroke survivors, the fear of falling is a constant companion. It’s there when you get up from the couch, when you navigate the kitchen, when you try to walk further than you did yesterday. That fear is rational, falls after a stroke are common, and their consequences can be serious. But according to Associate Professor Kate Scrivener, a stroke rehabilitation researcher at Macquarie University, that fear doesn’t have to define your recovery. In Episode 409 of the Recovery After Stroke podcast, Kate returns to the show where she first appeared in Episode 257 to discuss her HiWalk walking program and share the results of two major research projects: the published Phase II results of HiWalk, and a new systematic review focused specifically on exercise-based falls prevention after stroke. Who Is Kate Scrivener? Associate Professor Kate Scrivener leads stroke rehabilitation research at Macquarie University in Sydney, Australia. Her work sits at the intersection of real-world clinical practice and rigorous research. She doesn’t just study stroke recovery, she designs and tests the programs that can change it. Kate first appeared on this podcast to talk about HiWalk, a high-dose walking intervention designed to push the limits of what long-term stroke survivors can achieve. Now, with the results published, she’s back to talk about what the data actually showed and what it means for survivors who want to reduce their fall risk. The HiWalk Results: What Happened When 47 Survivors Walked Hard HiWalk was built on a straightforward but ambitious premise: what happens if stroke survivors, who have been living with their disability for years, are given a truly high-dose walking program? Not a gentle weekly session, but 43 hours of structured walking across just three weeks. The Phase II randomized trial enrolled 47 participants and produced results worth paying attention to. Attendance was 91%. Retention was 98%. For a physically demanding trial involving chronic stroke survivors, those numbers are remarkable, and they tell their own story about what survivors are capable of when given a real opportunity. For participants who were not already in active rehabilitation at the time of the trial, walking speed improved by 0.24 metres per second, a clinically significant gain. Self-efficacy, a measure of how confident participants felt in their own ability to walk and function, also improved significantly. The overall group walking speed trend was positive but did not reach statistical significance across the full cohort, partly because HiWalk was a Phase II feasibility trial, designed to test whether the program could be delivered safely and whether participants would complete it. It was not powered to detect large group-wide effects. What it demonstrated is that this kind of high-dose program is feasible, achievable, and produces real gains for the right participants. Why Falls Prevention After Stroke Is Harder Than It Sounds Falls after stroke are not simply a balance problem. They involve fatigue, reduced sensation, spasticity, cognitive changes, and the interaction between all of those things in the unpredictable terrain of daily life. Most stroke survivors are told to be careful. Very few are given a structured, evidence-based program designed specifically to reduce their risk. Kate’s systematic review, published in Clinical Rehabilitation in 2026, searched the global literature for exercise-based trials targeting falls prevention in community-dwelling stroke survivors. Only three trials worldwide met the inclusion criteria. That number alone says something significant. Falls after stroke are widely acknowledged as a major problem. The research base for solving it is thin. Of the three trials identified, exercise trended toward reducing the rate of falls, but the effect on the total number of people who fell was less clear. The standout result came from the FAST trial, which reduced fall rates by 33%. All three qualifying trials were conducted in Australia, raising important questions about whether these findings can be replicated in different healthcare systems with different levels of access to physiotherapy and structured exercise. What This Means for Stroke Survivors Right Now Kate’s research points to two things survivors and their families can act on. First, walking intensity matters. The HiWalk results suggest that long-term survivors who have plateaued in conventional rehabilitation may have more capacity than they or their clinicians assume. High-dose, structured walking appears to produce gains that lower-intensity programs don’t reach. If you’re a survivor who has been told to keep active but hasn’t been given a specific, progressive program, that’s worth a conversation with your physiotherapist. Second, exercise for falls prevention works, but it needs to be the right kind, delivered consistently. Gentle movement is valuable. But the evidence base Kate’s review maps out points toward structured, progressive exercise as the mechanism that shifts fall rates meaningfully. The FAST trial’s 33% reduction didn’t come from telling people to be more careful. It came from changing what they were physically capable of doing. Bill’s book, The Unexpected Way That A Stroke Became The Best Thing That Happened, explores the tools and mindset shifts that underpin a recovery built on action rather than waiting. You can find it at recoveryafterstroke.com/book. The Gap Between Research and Practice One of the most important threads in this conversation is the distance between what the research supports and what most survivors actually receive. Kate’s systematic review found only three qualifying trials globally. HiWalk’s feasibility results are published, but the next step, a large-scale Phase III trial, requires funding, time, and institutional will. For survivors, that gap can feel frustrating. The science is pointing in a clear direction. The programs aren’t yet widely available. Kate’s work is part of closing that distance. Listen to the Full Conversation Episode 409 with Associate Professor Kate Scrivener is available on all major podcast platforms, search Recovery After Stroke and on the Recovery After Stroke YouTube channel. If this show has helped you on your recovery journey, you can support it financially at patreon.com/recoveryafterstroke. This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan. Walking More, Falling Less – A Researcher’s Mission to Stop Stroke Survivors Hitting the Ground (Interview) Researcher Kate Scrivener on why falls after stroke aren’t inevitable — and what high-dose walking programs can change. Highlights: 00:00 Introduction – Falls Prevention After Stroke 07:04 Effectiveness of Rehabilitation for Non-Therapy Patients 13:01 Falls Risk and Prevention Strategies 20:53 Tailoring Exercise Programs for Individual Needs 26:48 Barriers to Implementing New Treatments 35:23 The Importance of Patient-Centered Research 41:32 Future Directions in Stroke Rehabilitation Transcript: Introduction – Falls Prevention After Stroke BIll Gasiamis (00:00) Well, hello everyone. Welcome to Recovery After Stroke. I’m Bill Garciamas. Today’s guest is someone who has been on the show before, and I’m glad she’s back because the last time we spoke, she was in the middle of a research program that I thought had real potential to change things for long-term stroke survivors. Now the results are in. Associate Professor Kate Scrivener is a stroke rehabilitation researcher at Macquarie University in Sydney, Australia. Her work focuses on what happens to survivors after formal rehabilitation ends, what’s possible, what the research actually supports, and what the gap looks like between current clinical practice and what survivors could be doing. In episode 257, Kate joined me to talk about High Walk, a high-dose walking program she designed for people living with chronic stroke. In this episode, she returns to share the published phase two results of that trial and to discuss her new systemic review on exercise-based false prevention after stroke. That review searched the entire global literature and found just three qualifying trials. That number tells you a lot about where the research is and why conversations like this matter. We cover the high walk data, what 43 hours of walking over three weeks produced in 47 participants, what the fast trial found about reducing fall rates, and what survivors can actually do right now based on the evidence. If you’ve found this podcast useful on your own recovery journey, I’d love for you to pick up a copy of my book. The unexpected way that a stroke became the best thing that happened. You can do that at recoveryafterstroke dot com slash book. It’s the story of my stroke and ten tools that shaped my recovery. And if this show has helped you, you can support it financially at patreon dot com slash recovery after stroke. Every contribution keeps the podcast going. BIll Gasiamis (02:00) Associate Professor Kate Scrivener. Welcome to the podcast. Kate (02:04) Nice to be back, Bill. BIll Gasiamis (02:07) Nice to have you back. Last time you were on, we spoke about a project that you were working on called High Walk, which was at the early stages of the project, was which was about determining whether or not people who did more rehabilitation in a short amount of time, like and a a you’ll tell me exactly what the words are in a minute, whether they were going to benefit from that type of protocol. As far as how that would impact their walking after stroke. and it was in the very early days, it was in the recruitment phase of the project that we spoke about it. We were

  7. Jun 19

    Can a Mushroom Help Your Brain Heal? The Science Says Maybe

    Lion’s Mane Mushroom and Brain Health: What Four Clinical Trials Actually Found Many stroke survivors and people managing cognitive decline more broadly eventually ask the same question: Is there anything beyond physiotherapy and medication that can actively support brain healing? Not symptom management. Actual repair. Lion’s Mane mushroom (Hericium erinaceus) is one compound that has gathered genuine clinical attention. It is not a cure, the human trial evidence is still limited in scale, and it is not a replacement for the fundamentals of brain health. But the mechanism is unusual, the safety profile is consistently good, and for anyone serious about their brain, the research warrants an honest look. Why Lion’s Mane Is Neurologically Unusual Most supplements that claim to support brain health cannot cross the blood-brain barrier, the tightly regulated membrane that controls what enters the brain. Without crossing it, any direct effect on brain tissue is limited. Lion’s Mane contains two families of bioactive compounds found almost nowhere else in nature. Hericenones come from the fruiting body, the visible mushroom. Erinacines come from the mycelium, the root-like underground network. Both stimulate the production of Nerve Growth Factor (NGF) and Brain-Derived Neurotrophic Factor (BDNF). These are proteins the brain uses to grow new neurons, maintain existing ones, and strengthen the connections between them. Crucially, erinacine A, one of the key mycelium compounds, has been confirmed in preclinical studies to cross the blood-brain barrier. That is not a trivial distinction. It is one of the reasons researchers have taken this mushroom seriously. “These are proteins your brain uses to grow new neurons, maintain existing ones, and build and strengthen the connections between them. They are, in a very real sense, your brain’s repair and maintenance crew.” — Bill Gasiamis What the Human Clinical Trials Found Four published human clinical trials have examined Lion’s Mane. Here is what each found: Mori et al. (2009): In a randomised, double-blind, placebo-controlled trial, 30 older adults with mild cognitive impairment (MCI) took Lion’s Mane supplement or placebo for 16 weeks. The Lion’s Mane group showed significantly better cognitive function scores at weeks 8, 12, and 16. When supplementation stopped, scores declined again within four weeks, suggesting the effect was tied to ongoing intake, not a placebo response. Saitsu et al. (2019): A multicenter RCT tested 12 weeks of oral Lion’s Mane in older adults. Participants in the treatment group showed significant improvement on the Mini-Mental State Examination (MMSE) compared to placebo. No adverse effects were observed. Nagano et al. (2010): A 4-week RCT using Lion’s Mane-enriched cookies found significant reductions in self-reported depression and anxiety in women compared to placebo, suggesting effects extend beyond cognition to mood and emotional regulation, possibly via the gut-brain axis. Docherty et al. (2023): A double-blind pilot study from Northumbria University tested 41 healthy young adults aged 18–45. After a single dose, participants performed significantly faster on the Stroop task, a measure of cognitive processing speed and flexibility. After 28 days, there was a trend toward reduced subjective stress. This was a small study, and results should be interpreted cautiously, but it suggests Lion’s Mane effects are not limited to populations already experiencing cognitive decline. The Stroke-Specific Preclinical Data For stroke survivors, the preclinical research adds another dimension. In a 2014 animal study, erinacine A reduced brain infarct volume by 22–44% in ischemic stroke models (depending on dose), and significantly lowered pro-inflammatory cytokines, including IL-1β, IL-6, and TNF-α markers of the neuroinflammatory cascade that follows stroke. A 2022 study found that erinacine A helps preserve glutamate clearance in the brain after ischemic injury. Excess glutamate is one of the key mechanisms of neuronal death after stroke, so anything that helps regulate it post-injury is clinically relevant. These are animal studies. They do not translate directly to human outcomes. But they provide a biological rationale that supports why clinical researchers are now investigating Lion’s Mane in neurological recovery contexts. What the Research Does Not Yet Tell Us The limitations matter, and any honest assessment must include them. All four human trials are relatively small, none exceeds 100 participants. We do not yet have large-scale, long-term RCTs in stroke survivor populations specifically. The optimal dose, duration, and form (fruiting body vs mycelium vs dual extract) have not been established in human trials. Direct confirmation that erinacines cross the blood-brain barrier in humans rather than in animal models does not yet exist. Bill says it directly in the video: “The human trial data is still relatively limited in scale. We need larger, longer trials.” Practical Questions to Raise with Your Doctor If you are considering Lion’s Mane supplementation, the following questions are worth raising with your neurologist or GP: Is it safe alongside my current medications? Theoretical interactions exist with anticoagulants (warfarin, aspirin, clopidogrel) and antidepressants, not confirmed in human trials, but worth disclosing. Anyone on blood thinners following a stroke should have this conversation before starting. What form should I look for? Products should specify standardised hericenone content (fruiting body extract) or erinacine A content (mycelium extract). Products listed only as “mycelial biomass on grain” typically contain very low levels of active compounds and high levels of starch from the growth substrate. If the label does not specify active compound content, treat that as a quality flag. Are there any trials I could join? ClinicalTrials.gov lists current recruiting studies for Hericium erinaceus and cognitive function worth checking if you are interested in contributing to the evidence base. More information: https://recoveryafterstroke.com/book | Support the podcast: https://patreon.com/recoveryafterstroke *This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan. The post Can a Mushroom Help Your Brain Heal? The Science Says Maybe appeared first on Recovery After Stroke.

  8. Jun 15

    The Nurse Who Had to Learn to Accept Care | Kathy Cunningham with Sean & Paul Monahan

    Stroke Impact on Family: When the Caregiver Becomes the Patient There is a particular kind of reckoning that happens when the person who has spent their life caring for others suddenly needs care themselves. For Kathy Cunningham, that moment arrived without warning. Kathy worked in healthcare for years, a field built on attending to others in their most vulnerable moments. When stroke entered her life, she was confronted with something her training had never quite prepared her for: accepting help. In Episode 408 of Recovery After Stroke, Kathy sits down with her sons Sean and Paul Monahan to talk openly about the stroke’s impact on the family, not as a concept, but as a lived experience shared across three people who navigated it together. When the Expert Becomes the Patient Healthcare professionals develop a particular relationship with illness. They understand the biology, know the pathways, and can often anticipate the trajectory of a condition before the patient has fully processed what is happening. That knowledge is a professional asset. In a personal medical crisis, it can also become a barrier. Kathy’s background meant she understood exactly what a stroke meant and what recovery would require. What it did not prepare her for was being on the receiving end: needing to ask, needing to wait, needing to trust others to do the things she had always done herself. Her sons Sean and Paul were part of that support system, two adult men who stepped into a caregiving role they had never anticipated, in a household that was already carrying more than most. A Household Navigating Stroke More Than Once What makes Kathy’s story particularly complex is the context it unfolded in. Her household had already been touched by stroke before her own diagnosis, meaning Sean and Paul weren’t approaching caregiving as something entirely new. They were deepening an already demanding commitment. The stroke impact on family is rarely a single event. It accumulates. Each new development shifts the balance of who does what, who needs what, and who is available to give it. For Sean and Paul, supporting their mother meant learning to hold space for her recovery while managing the weight of their own experience alongside it. That is the part of stroke that rarely makes it into clinical documentation: the sustained psychological and logistical load that falls on the people closest to the survivor, day after day, over months and years. The Challenge of Accepting Help One of the most consistent patterns across stroke recovery is the difficulty survivors have in accepting help, and it is amplified, not softened, when the survivor has a background in caring for others. The implicit logic runs: I know how this works. I should be able to manage this. Kathy speaks to this directly in the episode. The process of allowing her sons to step forward to organise, to accompany, to simply be present and available required a different kind of skill than anything her career had developed. It required recognising that accepting care is not evidence of incapacity. It is its own form of strength. For families supporting a stroke survivor, this distinction matters. When a survivor resists help, it is not always stubbornness. Often, it is someone navigating an identity that has been fundamentally disrupted by what happened to them. What the Family Perspective Adds Sean and Paul’s presence in this conversation shifts something in the usual stroke recovery narrative. Most episode conversations centre on the survivor. This one deliberately includes the view from the other side, the sons who watched, worried, helped, and carried their own weight through it. What they share is instructive for any family in a similar position. Stroke impact on family plays out differently depending on who is watching, who is helping, and who is still finding their way back to the person they knew before the stroke. Their account is not about burden. It is about recalibration, finding a new way to be a family when every role has shifted. What Families Can Take From This Conversation If you are supporting a stroke survivor or a survivor who has struggled with accepting help, three things stand out from this episode. The first is that a survivor’s professional identity shapes their recovery. Someone who has spent their career as a carer may need more time and explicit permission before they can accept care themselves. Naming this directly with patience, not pressure, opens the door. The second is that adult children carry more than they show. Sean and Paul’s willingness to speak plainly about their experience is a reminder that caregiving has an interior weight that often goes unspoken. Creating space for that conversation within a family is not weakness. It is what keeps families intact through long recoveries. The third is that stroke impact on family is not a moment – it is a process. It evolves, shifts, and asks different things of different people at different stages. Families who move through it with honesty tend to find a stronger dynamic on the other side. If this episode resonates with you, Bill’s book The Unexpected Way That A Stroke Became The Best Thing That Happened explores the tools that have helped stroke survivors and their families navigate the long road back. You can find it at recoveryafterstroke.com/book. If the show has helped you or someone in your life, you can support it financially at patreon.com/recoveryafterstroke. This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan. The Nurse Who Had to Learn to Accept Care | Kathy Cunningham with Sean & Paul Monahan When the family’s caregiver becomes the patient, everything changes. Kathy Cunningham and sons Sean and Paul Monahan share the unfiltered truth. Highlights: 00:00 Kathy’s Life Before the Stroke 03:54 Family Reactions and Hospital Experience 12:31 Coping with the Aftermath 15:33 Stroke Impact on Family 21:24 Reflections on Control and Independence 28:33 Facing Mortality: A Son’s Perspective 35:19 Navigating Family Dynamics During Crisis 45:28 Understanding the Impact of Stroke on Relationships 53:21 Finding a New Normal After Recovery 01:04:58 Reflections on Healing and Future Aspirations Transcript: Kathy’s Life Before the Stroke BIll Gasiamis (00:00) Welcome to Recovery After Stroke. I’m Bill Gasciamas. Today’s episode is one that doesn’t happen often on this show. And I think that’s exactly what makes it worth your full attention. Today I’m joined by three guests, Kather Cunningham, who is a healthcare professional and who is the person who experienced a stroke. But what makes this conversation different is who’s sitting beside her. Her two sons, Sean Monaghan and Paul Monaghan, who were there through every stage of her recovery. We talk about what stroke does to a family when the person who has always done the caring suddenly needs the care themselves. We talk about what Sean and Paul experienced on the other side of that, what caregiving looks like when it’s your parent and it’s not a choice, and when your household has already been touched by stroke before. And we talk about the thing that Kathy found hardest, accepting help. If you’ve been listening to this show for a while, you know that recovery rarely belongs to just one person. It belongs to everyone around them. This episode is for the families. Before we get into it, if you’re in the middle of your own recovery or supporting someone through theirs, my book, The Unexpected Way That A Stroke Became The Best Thing That Happened, was written for exactly this moment. You can find it at recoveryafterstroke dot com slash book. And if this show has helped you or someone you care about, you can support it financially at patreon dot com slash recovery after stroke. Every contribution helps keep the podcast running. BIll Gasiamis (01:30) Cathy Cunningham, Sean Monahan and Paul Monahan, welcome to the podcast. Kathy Cunningham, & Sean, son (01:35) Thank you. Nice to be on. Glad to be here. Paul (01:36) Thanks. BIll Gasiamis (01:38) So Cathy, can you tell me a little bit about what life was like before the stroke? Kathy Cunningham, & Sean, son (01:46) Okay. So I I was working full time as a s s director of health services at a small I mean a medium private school, grades five through twelve. and I was the director of health services, a school nurse. and I had worked there for twenty five years, at Thayer Academy. and so that Tuesday, the day of the stroke, I had worked as usual, you know, put in my eight to ten ten hours. and I don’t remember until day ten. so Sean it would be better to describe the first the he ’cause he had to manage everything on his own, w with Paul, and so he maybe he could describe what happened. Family Reactions and Hospital Experience BIll Gasiamis (02:41) Yeah, Sean, tell us a little bit about perhaps how you experienced what happened to your mum. Kathy Cunningham, & Sean, son (02:47) So she woke me up. I was am still living here. She woke me up around two in the morning saying that she had severe esophageal pain. Yeah. She described as a nine out of ten, ten out ten. and my first instinct was to call an ambulance, but she said, No, no, no, maybe it’ll let up You know, like another ten, fifteen minutes. And so I was a little bit like, you know, eventually, you know, I I convinced her I to let me drive her to the hospital. And it was there in the ER where she had a stroke. she was you know, had nausea and was vomiting. and when I was like helping like you know clean up clean it up whatnot I noticed that she wasn’t like responding at all it was just glassy eyed and so I pressed the you know emergency call button because there wasn’t a doctor or nurse in at that time and there it wasn’t somebody

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A Community And Podcast For Stroke Survivors And Carers

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  • Creator
    Recovery After Stroke
  • Years Active
    2019 - 2026
  • Episodes
    297
  • Rating
    Explicit
  • Show Website
    Recovery After Stroke