Recovery After Stroke

Recovery After Stroke

A Community And Podcast For Stroke Survivors And Carers

  1. 2 DAYS AGO

    Brainstem Stroke Long-Term Effects: What 11 Years of Recovery Really Looks Like

    Brainstem Stroke Long-Term Effects: What 11 Years of Recovery Really Looks Like Maggie Whittum — 2025 When Maggie Whittum first appeared on the Recovery After Stroke podcast in 2019 — Episode 47 — she was a few years out from a devastating brainstem stroke, still in the thick of the hardest part of recovery. She had survived paralysis, a ventilator, brain surgery, and a complete dismantling of the life she had known. At just 33 years old, a cavernous angioma — a vascular malformation affecting approximately one in 500 people — had caused a massive hemorrhagic stroke in her brainstem on Christmas Day 2014. Now, more than eleven years on, Maggie returns to share what brainstem stroke long-term effects actually look like. Not the version you find in a clinical brochure. The real one — chronic neuropathic pain, persistent visual disturbances, deep fatigue, and the slow, non-linear process of building a new identity when the old one is no longer available to you. Her story is also one of unexpected creativity. Maggie is now a filmmaker, artist, and disability advocate. She is the creator of The Great Now What, a documentary film exploring stroke, disability, chronic pain, and what it means to rebuild a life after everything changes. The film is in post-production and set to premiere at film festivals in 2026. What a Brainstem Stroke Actually Does to the Body The brainstem controls some of the most fundamental functions the body performs — breathing, swallowing, eye movement, facial sensation, and the coordination of signals between the brain and the rest of the nervous system. A stroke in this region, even a survivable one, can produce a uniquely complex set of deficits. For Maggie, the immediate aftermath included complete left-side paralysis, inability to breathe or speak independently (requiring ventilation), and kaleidoscopic double vision with nystagmus — eyes bouncing constantly in the sockets. She underwent brain surgery and intensive rehabilitation. Eleven years later, some of those deficits have partially resolved. Others have not. The brainstem stroke long-term effects Maggie continues to live with include: Hemiplegia on the left side — weak and uncoordinated movement, no sensation Hypertrophic olivary degeneration — constant, involuntary eye movement Gaze palsy to the right and nystagmus to the left Right-side facial palsy from cranial nerve damage Chronic neuropathic pain — burning, freezing, crushing, and severe pins and needles on the left side of the body Significant fatigue, which shapes how she works and creates She walks with a cane. She manages these realities every day. And she has found ways to not just cope with them, but to make them the subject of her art. When Words Are Not Enough: The Barbie Art Project “I needed to communicate to these people better — and also my own friends and family. So I took a Barbie doll and tried to make it look like I feel.” — Maggie Whittum One of the most striking things Maggie has done in her recovery is find a visual language for pain that spoken language alone cannot carry. Frustrated by the difficulty of explaining neuropathic sensation to doctors, therapists, and loved ones, she created a series of modified Barbie dolls — each one representing a different aspect of how her left side feels. Concrete Barbie has the left side encased in grey clay — the crushing heaviness. Rubber band Barbie has bands wrapped down the left side — the tightness. Vice grip Barbie has clamps all the way down — the pressure. Others are painted with fire and black — the heat and darkness of nerve pain that language cannot quite reach. It is an act of translation. And it is also a form of advocacy — making the invisible visible for people who have never experienced it. You can find the full series on the The Great Now What Instagram page. The Five-Year Mark — and Why It Matters One of the most important things Maggie shares in this conversation is a framework that will resonate with many stroke survivors: the idea that it takes approximately five years to truly understand what a brainstem stroke has done to you. This is not a clinical timeframe — it is an experiential one. The first two years, Maggie describes, were consumed by grief and the visceral shock of comparison: the life she had, and the life she now had. By five years, something begins to shift. A clearer picture emerges. A person begins to understand not just the deficits, but the new shape of their life. For Maggie, that process was interrupted by her father’s death and the onset of COVID. But she describes herself now, at eleven years, as having genuine comprehension of what happened — and of what she has chosen to do with it. “You’re gonna do like 10,000 things. And now that this has happened to you, you’re just gonna do a different 10,000 things — but it’s still your life.” — Maggie Whittum This reframe — borrowed from advice given to another wheelchair user early in his recovery — cuts through the grief of what was lost and opens a door to what is still possible. Not as consolation. As truth. The Great Now What: A Documentary Built in Stroke Time Maggie is the creator and producer of The Great Now What, a feature documentary about her stroke, her recovery, and what it means to rebuild a life with disability and chronic pain. The film has been in development for several years — slowed by COVID, by fatigue, by the realities of disabled filmmaking — and is now in post-production. The film does not shy away from the difficult middle of recovery. Maggie is deliberate about this. She describes the typical narrative arc of recovery stories as “saccharine” — the fall, the rise, the triumphant ending, with the messy, decade-long middle compressed or erased. The Great Now What refuses to do that. A crowdfunding campaign launches on May 1st, 2026 — Stroke Awareness Month in the United States — to fund post-production costs including editing, colour grading, sound mixing, and accessibility features (captions and audio description for visually impaired viewers). To follow the film’s journey and be notified when it becomes available, visit thegreatnowwhat.com. Identity After Brainstem Stroke: Becoming Someone New Before her stroke, Maggie was an actor, freelance director, and producer. She had performed at the Edinburgh Fringe, produced improv and theatre internationally, and was mid-way through a Master of Fine Arts in classical acting in Washington DC when the stroke occurred. That version of her professional life is no longer accessible in the same way. But rather than treating this as only a loss, Maggie has constructed a new creative identity — one that includes visual art, filmmaking, disability advocacy, and public storytelling about stroke and chronic illness. “I feel like I can call myself a filmmaker now,” she says. “I really couldn’t when I started this project.” That sentence is worth sitting with. Identity after brainstem stroke does not arrive fully formed. It is built, slowly, out of what you choose to do with the time and capacity you have. If you are navigating that process — or supporting someone who is — Bill’s book, The Unexpected Way That a Stroke Became the Best Thing That Happened, offers a framework for understanding the deeper transformation that stroke can catalyze. And if you want to be part of a community that understands what long-term recovery actually looks like, consider supporting the Recovery After Stroke Patreon. What This Episode Is Really About Brainstem stroke long-term effects are not just physical. They are relational, psychological, vocational, and existential. Maggie Whittum’s story, eleven years of it, makes that clear without sentimentality and without false resolution. She is not fixed. She is not the person she was before Christmas 2014. But she is someone, a filmmaker, an artist, a survivor who has chosen to make meaning out of what happened. And that, as this conversation makes clear, is its own kind of triumph. Listen to the full episode on the Recovery After Stroke podcast, and find Maggie’s film project at thegreatnowwhat.com. Medical 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 post Brainstem Stroke Long-Term Effects: What 11 Years of Recovery Really Looks Like appeared first on Recovery After Stroke.

    44 min

  2. 13 APR

    Life After Right MCA Stroke: Why You May Not Feel Like Yourself After Stroke

    Life After Right MCA Stroke: Why You May Not Feel Like Yourself After Stroke Introduction Heidi Loveridge survived a right MCA stroke at 43. Physically, her recovery has gone well. She regained strength, learned to walk again, and is even working toward getting her driver’s license for the first time. But emotionally, something feels off. “I used to be so happy… and now I’m not.” If you’ve had a stroke and feel like you’re not yourself anymore — even when everything looks “fine” on the outside — you’re not alone. This is one of the most confusing and least talked about parts of life after stroke. In this article, you’ll learn what life after a right MCA stroke can really feel like — physically, emotionally, and mentally — and why recovery is about more than just getting your body back. What Is a Right MCA Stroke? A right middle cerebral artery (MCA) stroke affects the right side of the brain, which plays a key role in: Spatial awareness Attention and perception Emotional processing Awareness of the left side of the body Because of this, many stroke survivors experience: Left-side weakness or coordination issues Changes in emotional regulation Difficulty with awareness or attention Fatigue and cognitive overload Heidi left the hospital with left-side weakness and needed a walker and wheelchair initially. Over time, she regained much of her physical ability — but her emotional recovery has been more complex. The Part Nobody Talks About: Emotional Recovery After Stroke Physical recovery is visible. Emotional recovery is not. Heidi describes crying frequently, sometimes without a clear reason. She also experienced depression — something her doctors explained can be common after a right MCA stroke. But what makes it harder is this: She doesn’t fully know why she feels the way she does. That uncertainty can be one of the most distressing parts of recovery. Many stroke survivors expect: “I survived, so I should feel grateful” “I’m improving physically, so I should feel better” But instead, they feel: Flat Overwhelmed Disconnected Not like themselves This is not a personal failure — it’s part of how the brain heals. Why You May Not Feel Like Yourself After Stroke A stroke doesn’t just affect movement. It affects identity. Heidi describes a major personality shift. Before her stroke, she was an introvert who avoided conversations and social situations. Now, she talks to strangers easily and seeks connection. At first, that might sound like a positive change — but it also comes with confusion. Who am I now? This question is common after stroke, especially when: Your emotional responses change Your energy levels fluctuate Your tolerance for stress is different Your interests and behaviours shift The brain is literally rewiring itself — and that includes the parts responsible for personality, mood, and emotional regulation. “I used to be so happy… and now I’m not.” Physical Recovery Doesn’t Mean Full Recovery From the outside, Heidi is doing well. She can: Walk independently Ride an electric bike Cook again (after initially losing the desire) Participate in social activities But internally, she still feels like something is missing. This is where many stroke survivors feel misunderstood. People see progress and assume everything is okay. But recovery is not just about: Strength Mobility Independence It’s also about: Emotional stability Sense of identity Feeling like yourself again And those things often take longer. What Helps During Life After Right MCA Stroke There is no single solution — but there are patterns that help. 1. Movement and Routine Heidi walks regularly to manage her mood. Movement helps regulate the brain and can improve emotional well-being over time. 2. Community and Connection After her stroke, Heidi actively sought connection: Joining a women’s circle Returning to church Talking to strangers This is a major shift from her previous life — and a powerful part of her recovery. 3. Accepting That Recovery Is Ongoing At just 10 months post-stroke, Heidi is still early in her journey. Recovery doesn’t follow a fixed timeline. It continues. 4. Allowing Complexity You can feel: Grateful to be alive Frustrated with your progress Hopeful and discouraged — at the same time All of these can exist together. The Search for Happiness After Stroke One of the most honest moments in Heidi’s story is this: “I wish I knew how to make myself happy again.” That’s something many stroke survivors quietly experience. The goal isn’t to force happiness. It’s to: Create space for it Support the brain as it heals Build small moments that gradually reconnect you to yourself Sometimes that looks like: Trying new therapies Talking to someone who understands Rebuilding routines slowly And sometimes it simply means giving yourself time. A Different Kind of Strength Heidi didn’t just survive a stroke. She changed. She now says something she didn’t believe before: “I can do hard things.” That belief led her to: Get her learner’s permit at 44 Step into new social situations Push beyond the limits she once accepted This is a different kind of recovery, one that isn’t measured in physical milestones, but in personal growth. Conclusion Life after a right MCA stroke is not just about recovery. It’s about rebuilding a life that feels meaningful again. If you don’t feel like yourself right now, it doesn’t mean you’re failing. It means your brain and your identity are still healing. And that takes time. If you’re navigating life after stroke, you don’t have to do it alone: https://recoveryafterstroke.com/book Support more stories like Heidi’s and join the community: https://patreon.com/recoveryafterstroke 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. Heidi’s Stroke Story: Surviving Physically, Struggling Emotionally She survived a stroke but doesn’t feel like herself. Discover why emotional recovery after stroke can be the hardest part. Facebook Instagram TurnTo.ai — my favourite tool for stroke recovery in 2026. It’s an AI health sidekick that finds the latest stroke research, patient discussions, and expert insights — personalised to you, every week. Just $2 a week. Use code Bill10 for 10% off.  When you sign up through my link, you support the podcast at no extra cost to you. Stroke-specific link Patreon: https://www.patreon.com/recoveryafterstroke Highlights: 00:00 Life Before Stroke: A Journey of Transformation 04:45 The Day of the Stroke: A Life-Changing Event 09:39 Hospitalization and Recovery: Facing New Realities 15:17 Driving and Independence Post-Stroke 19:04 Emotional Changes and Mental Health 23:52 Finding Meaningful Connections 28:13 Life After Right MCA Stroke 36:12 Overcoming Limitations and Embracing Change 39:30 Travelling Beyond Borders 40:23 Transforming Personal Identity 44:15 Innovations in Stroke Treatment 45:17 The Journey to Happiness 47:33 Exploring Alternative Therapies 51:14 Lessons Learned and Moving Forward Transcript: Life Before Stroke: A Journey of Transformation Bill Gasiamis (00:00) You’re not happy. Do know what you’re not happy about? Heidi Loveridge (00:03) No, it doesn’t feel like it’s anything specific. Like, I know I can do everything I need to do or want to do. So actually at Christmas time, I did try cross-country skiing. It was really hard. Bill Gasiamis (00:09) Mm-hmm. Was it fun? Heidi Loveridge (00:14) Not as fun as it should have been. It was more hard than fun. Bill Gasiamis (00:18) Hello everyone, welcome back to the podcast. If you’ve ever felt like you’ve survived your stroke, but something still isn’t right, like you don’t quite feel like yourself anymore, then this episode is going to resonate with you. Today I’m speaking with Heidi Lovridge who experienced a right MCA stroke at 43. Physically she’s made incredible progress, but emotionally things have been a lot more complicated. And what’s really powerful about this conversation is how honest she is about that. Before we dive in. I just want to say big thank you to everyone who continues to support the podcast. If you have picked up a copy of my book at recoveryafterstroke.com/book. Thank you. That support helps keep these conversations going and to the Patreon supporters. Thank you for being a part of this program and helping me create content that reaches stroke survivors all around the world. All right, let’s get into this episode with Heidi. Bill Gasiamis (01:11) Heidi Leveridge, welcome to the podcast. Heidi Loveridge (01:13) Thank you. Bill Gasiamis (01:14) you tell me a little bit about before stroke? What was life like? What were you up to? What kind of things did you enjoy doing? Heidi Loveridge (01:23) Yeah, so I like, I love being outside. And I used to before my stroke, I was a total introvert. And my biggest hobby is knitting. And so like, I used to always knit, I used to bring knitting to meetings and stuff because I could, or parties so I could avoid chatting. But now I love talking to strangers. So I used to be a total introvert before my stroke too. But now a stranger is just somebody I don’t, it’s not my friend yet. Who I haven’t met, a friend I haven’t, a stranger is a friend I haven’t met yet. Bill Gasiamis (01:50) Is that a, ⁓ a mindset shift? that a life’s short thing? Like, is it? Heidi Loveridge (01:59) I know. I just suddenly don’t care what people think about me anymore. I can do hard things now, I know. Yes, so hiding before, I… Bill Gasiamis (02:05) and before you cared deeply about what other people who you didn’t know thought about you. Heidi Loveridge (

    1hr 16min

  3. 30 MAR

    Long-Term Effects of Brainstem Stroke: The Hidden Deficits No One Talks About

    Long-Term Effects of Brainstem Stroke: The Hidden Deficits No One Talks About Ty Hawkins was taking engagement photos with his wife the same day he was admitted to the ICU. That sentence alone captures something essential about brainstem stroke, and about the particular cruelty of its long-term effects. On the outside, Ty looked like a young man in love, celebrating a milestone. On the inside, his vision was blurring, his balance was failing, and one side of his face had begun to droop. By nightfall, he was in the hospital being told they had found a mass on his brain. That was June 2019. Ty was in his mid-twenties, working in sales at Verizon, playing competitive basketball, and building a life with the woman he was about to marry. The stroke caused by a bleed from a cavernous malformation in his brainstem carried a 25% survival rate. Of those who survived, only 10% made a significant recovery. Ty is now approaching year seven. He returned to work. He speaks publicly. He shares his story with a global audience that finds him through social media and reaches out to tell him he helped them keep going. And every single day, he still wakes up managing deficits that most people around him cannot see. What the Brainstem Controls — And Why Its Damage Lingers The brainstem is not a dramatic structure in the way the cortex is. It doesn’t govern language, memory, or personality in ways that are immediately visible to an observer. What it governs is more fundamental: breathing, heart rate, digestion, balance, coordination, and the relay of sensory signals between the brain and the body. When a bleed occurs in the brainstem, as it did for Ty through a cavernous malformation, a cluster of abnormally formed blood vessels, the damage disrupts those foundational systems. The effects can be wide-ranging, deeply personal, and stubbornly persistent. They can also be almost entirely invisible to anyone who isn’t living inside that body. For Ty, the long-term effects of his brainstem stroke include ataxia, double vision, gastroparesis, CRPS, and left-sided numbness and weakness. None of these are visible when he walks into a room. All of them shape his daily experience in ways that most people, including many in the medical system, never fully appreciate. Gastroparesis After Stroke: The Deficit Nobody Mentions Of all the long-term effects Ty lives with, gastroparesis is perhaps the least discussed in stroke recovery conversations and one of the most disruptive to daily life. Gastroparesis is a condition in which the stomach empties too slowly or incompletely, caused by disrupted communication between the brain and the vagus nerve. For Ty, this means the digestive signals that most people take for granted, hunger, fullness, and discomfort, are unreliable. He can eat three bites and feel as though he has finished a six-course meal. He can go hours without a hunger signal and needs to eat by clock rather than by sensation. When his nervous system is overwhelmed, his digestive system slows or stalls entirely. Gastroparesis after stroke is not a fringe experience. The brainstem governs the vagus nerve, which in turn governs gut motility. A brainstem stroke can interrupt that pathway in ways that create persistent digestive dysfunction, yet it rarely features in the standard conversations about stroke recovery. Survivors can spend years not understanding why their digestion is erratic, not connecting it back to the stroke, and not receiving targeted support. Ty found that movement and routine helped regulate his system. A morning sauna, regular exercise, and starting the day with warm tea and light fruit rather than a heavy meal gave his digestive system conditions in which it could function more predictably. These are not medical solutions, they are adaptive strategies built through seven years of learning his own body. CRPS and Ataxia: When the Nervous System Won’t Stand Down “My daily pain level is a four or five. Someone not used to chronic pain would call it an eight or a nine.” — Ty Hawkins Complex Regional Pain Syndrome (CRPS) was misdiagnosed in Ty for several years as neuropathy. It presents as the brain becoming stuck in a fight-or-flight pain loop, sending persistent, amplified pain signals in response to stimuli that should not be painful at all. For Ty, this means clothing fabric can register as pain. Cold bed sheets can spike his discomfort through the roof. Water on his skin can hurt. Ataxia compounds this by disrupting muscle coordination when his nervous system becomes overwhelmed. His gait changes. His shoulder shakes when lifting overhead. Coordination that was once automatic, honed through years of competitive basketball, becomes unreliable when fatigue, overstimulation, or stress tips his nervous system past a threshold. Both conditions are neurological in origin. Both are invisible to the outside observer. Both require constant, conscious management. The Athletic Mindset as Recovery Infrastructure What gave Ty the internal architecture to manage all of this? He credits his coaches. Years of athletic training being pushed past comfort, being held to a standard of effort regardless of natural talent, learning that showing up and doing the work was non-negotiable, built in Ty a psychological framework that translated directly into rehabilitation. In the inpatient facility, he was wheeling himself to therapy sessions before the nurses came to collect him. After the first week, they stopped coming. They knew he would already be there. As the doctors noted during his rehabilitation: he was recovering faster than expected, and they attributed it directly to his athletic background. Not his talent. His work ethic. The Emotional Cost of Looking Fine Perhaps the most underappreciated long-term effect of Ty’s brainstem stroke is the one least visible of all: the emotional toll of presenting as healthy while carrying a daily invisible burden. For years, Ty’s type-A, athletic identity kept him moving forward, but it also kept him from fully acknowledging what he was carrying. It took until years three or four before he genuinely engaged with psychotherapy. Once he did, the progress he experienced was significant. He now starts every Monday with a therapy session. The shift that mattered most was learning to honour how he actually felt rather than how he wanted to feel. For male survivors in particular, the cultural conditioning to tough it out is deeply ingrained and actively harmful in the context of long-term stroke recovery. Emotional suppression does not make the load lighter. It makes it invisible to everyone, including the person carrying it. Recovery Has No Expiry Date Ty’s most direct message to survivors is straightforward: don’t limit your recovery to the first year. The brain does not set a deadline on neuroplasticity. He is approaching year seven and still noticing improvements. The triumph of this story is not that Ty is symptom-free. The triumph is that he has built a life of genuine meaning and contribution around an ongoing physical reality without pretending that reality doesn’t exist. He’s reached people on every continent with a message that is simple, honest, and badly needed: You can survive the statistics. You can carry the hidden weight. And you can keep getting better years after everyone else assumes the story is over. If you are navigating your own stroke recovery early or years in, Bill’s book is a practical and honest companion for the journey: recoveryafterstroke.com/book And if the Recovery After Stroke community has been part of your path, consider supporting the show on Patreon: 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. Ty Hawkins: Six Years After a Brainstem Stroke, Still Fighting the Battles You Can’t See He survived a 25% chance brainstem stroke. Nearly 7 years on, Ty Hawkins reveals the hidden deficits that never made the headlines until now. Instagram Facebook LinkedIn Highlights: 00:00 Introduction: Long-Term Effects of Brainstem Stroke 05:54 The Day of the Stroke 11:35 Hospital Experience and Diagnosis 15:44 Mindset and Recovery 21:46 Therapy and Rehabilitation 24:25 Long-Term Effects of Brainstem Stroke 32:58 The Importance of Exercise in Recovery 38:21 Living with CRPS: A Daily Challenge 50:29 Emotional Resilience and Mental Health 01:01:28 Lessons Learned: Recovery Insights for Stroke Survivors Transcript: Introduction: Long-Term Effects of Brainstem Stroke Ty Hawkins (00:00) as I’m sleep. have a dream and It’s just I’m in a dark place and I just hear a voice and it says do you trust me and? I said well Absolutely, it said okay. Well, we have to go and I immediately wake up and I tap my wife and I say hey we should go to the hospital now and Then I go to the hospital so by day I’m taking engagement photos and by night. I’m in ICU immediately taken to the for a CAT scan and chest x-rays. Bill Gasiamis (00:30) Before we get into today’s conversation, I wanna take a moment to acknowledge something that I think a lot of people in this community quietly live with. The feeling that your looks finished to everyone else, but you know the real story. You’re still managing things every single day that nobody around you can see. If that’s you, this episode is going to hit home. My guest today is Ty Hawkins. Ty had a brainstem stroke in June, 2019. caused by a cavernous malformation, a bleed that carries a 25 % survival rate. He made it, he went back to work, he plays basketball, he looks great, and he is still nearly seven years later managing gastroparesis, CRPS, ataxia, and daily chronic pain that he rates at four or five, which he says most people would call an eight or nine. This is a triumphant story, not because every deficit is go

    1hr 10min

  4. 16 MAR

    Emotional Anger After Stroke: Trisha Winski’s Story of a Carotid Web, Aphasia, and Learning to Slow Down

    Emotional Anger After Stroke: Trisha Winski’s Story of a Carotid Web, Aphasia, and Learning to Slow Down Trisha Winski was 46 years old, working as a corporate finance director, with no high blood pressure, no diabetes, and no smoking history. By every conventional measure, she was not a stroke candidate. Then one morning, she stood up from the bathroom, collapsed, and couldn’t speak. Her ex-husband, sleeping on her couch by chance the night before, found her and called 911. The cause was a carotid web, a rare congenital condition she never knew she had. Three years and three months later, she’s living with aphasia, rebuilding her sense of self, and navigating something that doesn’t get nearly enough airtime in stroke conversations: emotional anger after stroke. What Is a Carotid Web — and Why Does It Matter? A carotid web is a rare shelf-like membrane in the internal carotid artery that disrupts blood flow, causing stagnation and clot formation. It is a form of intimal fibromuscular dysplasia and affects approximately 1.2% of the population. Most people never know they have it. Unlike the more commonly cited stroke risk factors, such as hypertension, diabetes, smoking, and obesity, a carotid web is congenital. You are born with it. There is no lifestyle adjustment that would have prevented Trisha’s stroke. That distinction matters enormously when you are trying to make sense of what happened to you. “I have nothing that could cause it,” Trisha says. “No blood pressure, no diabetes. It’s hard.” The treating hospital, MGH in Boston, caught the carotid web, something Trisha was later told many hospitals would have missed. It is a reminder of how much diagnosis still depends on the right clinician, the right technology, and a degree of luck.   Why Am I So Angry After My Stroke? One of the most underexplored dimensions of stroke recovery is emotional anger, not just grief, not just fear, but a specific kind of rage that has no clean target. “Why me? Why did I have to have it? It’s frustrating. It’s so frustrating,” Trisha says. “I’m just mad. I don’t know who I’m mad at.” This is a clinically recognized phenomenon. Emotional dysregulation after stroke can have both neurological and psychological origins. The brain regions that govern emotional control may be directly affected by the injury. At the same time, the psychological weight of sudden, unearned loss of function, of identity, of a future you thought you understood is enough to generate profound anger in anyone. For people like Trisha, who had no risk factors and no warning, the anger is compounded. There is no behaviour to regret, no choice to unwind. The stroke simply happened. That can make the anger feel even more directionless and, paradoxically, even more consuming. “Why me? Why did I have to have it? It’s frustrating. It’s so frustrating.” Bill’s gentle reframe in the conversation is worth noting here: “Why not me? Who are you to go through life completely unscathed?” It’s not a dismissal, it’s an invitation to move from the question that has no answer to the one that might.   Aphasia: The Deficit That Hurts the Most Trisha’s stroke affected her left hemisphere, producing aphasia, a language processing difficulty that affects word retrieval, word substitution, and speaking speed. Her numbers remained largely intact, which helped her return to her finance role. But the aphasia has been, in her own words, the hardest part. “If I didn’t have that, I wouldn’t be normal, but I could be normal,” she says. “The aphasia kills me.” One of the quieter consequences of aphasia that Trisha describes is self-censoring, stopping herself from communicating in public because she fears taking too long, disrupting the flow of conversation, or being misunderstood. She has developed a workaround: telling people upfront she has had a stroke, so they give her the time she needs to get her words out. The frustration-aphasia loop is well documented: the more stressed or frustrated a person becomes, the worse the aphasia tends to get. The therapeutic implication is significant. Managing emotional anger after a stroke is not just a well-being issue for someone with aphasia; it is directly tied to their ability to communicate. “Whenever I’m not stressed, I can get it out. When I get nervous, I can’t,” Trisha explains.   The Trauma Ripple: It’s Not Just About You One of the most striking moments in this episode is when Trisha reflects on her son Zach and ex-husband Jason, both of whom were visibly distraught in the days after her stroke. “I had a stroke. Why are they traumatized?” she says and then catches herself. “I forgot to look at it from their perspective. They watched me have a stroke.” This is something stroke survivors frequently underestimate. The people around them, partners, children, friends, even ex-partners like Jason, carry their own version of the trauma. They watched helplessly. They made decisions under panic. They grieved a version of the person they knew, even as that person survived. Acknowledging this doesn’t diminish the stroke survivor’s experience. It widens the frame of recovery to include the whole system and opens the door to conversations about collective healing.   Neuroplasticity Is Real — Give It Time Three years and three months after her stroke, Trisha’s message to people in the early stages of recovery is grounded and honest. “Neuroplasticity really does exist. My brain finds places to find the words I never had before. It takes longer, but it gets there. Just give yourself time.” She also reflects candidly on going back to work too early, returning before she was medically cleared, crying every day, and unable to follow her own cognitive processes. “I should have waited,” she says. “But I did it. It taught me that if I ever had it again, I won’t do that.” Recovery after stroke is non-linear, unglamorous, and deeply personal. But the brain is adapting, always. Trisha’s story is evidence of that and a reminder that emotional anger after a stroke, however consuming it feels, is not the end of the story.   Read Bill’s book on stroke recovery: recoveryafterstroke.com/book | Support the show: patreon.com/recoveryafterstroke  DisclaimerThis 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. Why Me? Navigating Emotional Anger After Stroke When You Did Nothing Wrong No risk factors. No warning. Just a carotid web she never knew about — and three years of emotional anger, aphasia, and finding her way back. Tiktok Instagram Facebook Highlights: 00:00 Introduction – Emotional anger after stroke 01:36 The Day of the Stroke 07:05 Post-Stroke Challenges and Rehabilitation 13:06 Ongoing Health Concerns and Medical Appointments 22:40 Navigating Health Challenges and Medical Support 30:20 Acceptance and Coping with Mortality 38:36 Communication Challenges and Aphasia 42:09 The Journey of Recovery and Self-Discovery 51:51 Facing the Aftermath of Stroke 59:22 Emotional Impact on Loved Ones 01:04:57 Navigating Life Changes 01:13:25 Finding Joy in New Passions 01:25:12 Trisha’s Journey: Emotional Anger After Stroke Transcript: Introduction – Emotional anger after stroke Trisha Lyn Winski (00:00) I don’t have anything that could cause it. I have nothing that, no blood pressure, no diabetes, It’s hard. It’s hard. don’t… It makes me mad. Really mad. Really, really mad that I to stroke. And like, everyone that has it… Bill Gasiamis (00:07) Yeah. Trisha Lyn Winski (00:21) or every dozen. I’m like, why me? Why did I have to have it? It’s frustrating. It’s so frustrating. Bill Gasiamis (00:28) Yeah, mad at who? Trisha Lyn Winski (00:30) I don’t know. I’m just mad. Like, I don’t know who I’m mad at. Bill Gasiamis (00:35) Before we get into Trisha’s story, and this is a raw, honest, and really important one, I wanna share a tool I’ve been using that I think can genuinely help stroke survivors get better answers faster. It’s called Turn2.ai. It’s an AI health sidekick that helps you deep dive into any burning question you have about your recovery. It searches across over 500,000 sources related to stroke, new research, expert discussions, patient stories and resources, and then keeps you updated on what matters each week. I use it myself and it’s my favorite tool of 2026 for staying current with what’s happening in stroke recovery. It’s low cost and completely patient first. Try it free and when you’re ready to subscribe, use my code, Bill10 at slash sidekick slash stroke to get a discount. I earn a small commission if you use that link at no extra cost to you. And that helps keep this podcast going. Also my book, The Unexpected Way That a Stroke Became the Best Thing That Happened is available at recoveryafterstroke.com/book. And if you’d like to support the show on Patreon and my goal of reaching a thousand episodes, you can do that by going to patreon.com/recoveryafterstroke. Links are in the show notes. Right, Trisha Winsky was 46 years old, healthy, had no risk factors and then a carotid web. She never knew she had changed everything. Let’s get into it. Bill Gasiamis (02:06) Trisha Winski, welcome to the podcast. Trisha Lyn Winski (02:09) Thank you. Bill Gasiamis (02:10) Also thank you for joining me so late. I really appreciate people hanging around till the late hours of the evening to join me on the podcast. I know it’s difficult for us to make the hours that suit us both. I’m in the daytime here in Australia and you’re in the nighttime there. Trisha Lyn Winski (02:27) Yeah. Yeah. It’s okay. I can come to you later. Yeah, it’s late. Bill Gasiamis (02:34) As a stroke survivor, is it too

    1hr 30min

  5. 9 MAR

    Return to Work After Stroke – Marco Calabi’s Honest Recovery Story

    Return to Work After Stroke: How Marco Calabi Rebuilt His Career, His Purpose, and His Life At 47 years old, Marco Calabi was a DevOps engineer living in Italy – someone who spent his days automating systems, solving complex problems, and helping companies stop wasting time on repetitive tasks. He was healthy, working, paying bills, and spending time with friends. Life was normal. Then, without warning, everything changed. A small hole between the two chambers of Marco’s heart, a condition known as Patent Foramen Ovale, or PFO, had allowed blood flows to mix. A clot formed. It travelled to his brain. By the time his partner and sister realised something was terribly wrong, Marco was moving his arm involuntarily, unaware of what was happening to his own body. The emergency services were called twice. The second time, they came. Marco underwent eight hours of brain surgery. He was placed in a medically induced coma to allow his brain to rest. When he finally opened his eyes, he was on a hospital bed, and the road back had only just begun. The Reality of Stroke at 47 Marco woke from surgery to find the right side of his body had been affected. His arm, hand, and leg were weak. His speech was impaired. He left the hospital in a wheelchair. For many stroke survivors, this is the moment that defines everything that follows, not the stroke itself, but the first honest look at what recovery is actually going to require. “In the beginning, I was helped in everything,” Marco recalls. “They prepared my lunch. They helped me go to the bathroom. My family never left me alone.” His mother, his partner, his sister, and a close friend in the Netherlands all rallied around him. At home, physiotherapists and local health professionals visited him directly, a level of care he describes as incredible. Step by step, he began to reclaim his independence. First, the bathroom. Then the kitchen. Then the stairs. Each small act of autonomy arrived with a feeling he hadn’t expected: power. “You feel good because you think you have power again,” he says. “It is a very important moment.” Return to Work After Stroke: Why It Matters For working-age stroke survivors, the question of whether they can return to work after stroke is one of the most pressing they face. Identity, purpose, financial security, and routine work carry all of these things, and a stroke threatens all of them at once. For Marco, returning to work wasn’t just a financial necessity. It was evidence that his life still had forward momentum. He went back to his role as a DevOps and Site Reliability Engineer, initially working six hours a day instead of eight. The work itself, automating processes and improving systems, remained the same. Only the pace had changed. “I do the same things, but with different speeds,” he says simply. That shift in pace is something many stroke survivors recognise. Recovery doesn’t demand perfection. It demands persistence.   “The right moment is now. Not after, not tomorrow, not next week. Now.” — Marco Calabi   Recovery Happens in Steps One of the most grounded things Marco shares is this: recovery cannot be rushed. “The experience is made of steps,” he says. “You must live every step. The first steps are physical. And then your mind changes. But you must let yourself be.” This is the part that rarely gets talked about openly. The pressure to recover quickly — to prove to yourself, your family, and your employer that you are still capable — can work against the very process you are trying to complete. Marco’s advice is to resist the urge to skip ahead. Physical recovery comes first. Mental and emotional transformation follows naturally from there. Trying to rush past the physical phase doesn’t speed up recovery. It disrupts it. The Book, the Purpose, and the Shift Deep into his recovery, Marco did something unexpected. He wrote a book. Cambio di Vita, translated into English as Life Change: To Hell and Back, is his account of what happened, what he felt, and what he learned. Available on Amazon in digital and paperback. Writing started as a personal exercise. Somewhere in the process, its purpose shifted. “I said, my story is useless in this moment. I can make something,” Marco explains. “And so the book has another meaning to share.” For a man who had always found purpose through his career, the stroke opened an unexpected door. Helping others became a new calling. Speaking engagements, podcasts, and community conversations, Marco has built a new layer of meaning onto the life he already had. His best friend told him he had become wiser. His own reflection on what changed is striking: “Heartlessness is useless. You reach the hearts of people with softness.” What Stroke Taught Him About Life Perhaps the most powerful thing about Marco’s story is not what he lost, but what he found. He found that the right moment is always now, not when conditions are perfect, not when recovery is complete, but right now, with whatever capacity you currently have. He found that family and friends matter more than most of us acknowledge until we truly need them. He found that purpose doesn’t require a perfect body or a full working week. It requires a decision. If you are navigating life after stroke, wondering whether you can return to work, rebuild your identity, or find meaning in what remains, Marco’s story is proof that it is possible. Not easy. Not fast. But absolutely possible.   If you are rebuilding your life after stroke and want a guide for the journey ahead, Bill’s book The Unexpected Way That a Brain Injury Can Change Your Life is waiting for you at recoveryafterstroke.com/book. If this podcast has supported you, consider supporting it back at Patreon. Your contribution keeps this community growing. FAQ: Return to Work After Stroke Can you return to work after a stroke? Yes, many stroke survivors do return to work, though the timeline and capacity vary depending on the severity of the stroke, the type of work, and individual recovery. Marco Calabi returned to his role as a DevOps engineer, initially working six hours a day instead of eight. The key is a gradual, supported transition. How long does it take to return to work after a stroke? Recovery timelines vary widely. Some survivors return within weeks; others need months or years. Factors include the type and severity of stroke, the physical and cognitive demands of the job, and the quality of rehabilitation support. There is no universal timeline. Patience and persistence matter more than speed. What can I expect when returning to work after a stroke? Many survivors return at reduced hours or modified duties. Adjustments to pace, task complexity, or physical demands are common. Open communication with employers and occupational therapists can help structure a gradual, sustainable return. Marco worked six-hour days and describes it simply: “I do the same things, but with different speeds.” Does returning to work help stroke recovery? For many survivors, returning to work contributes positively to recovery, providing routine, purpose, social connection, and a sense of forward momentum. Marco Calabi describes his return to work as evidence that life still had forward momentum. However, the timing must be right, and the transition should be gradual. What if I can’t return to my previous job after a stroke? Some survivors find that stroke opens doors to new kinds of purpose volunteering, writing, advocacy, or a different career direction. Marco Calabi used his recovery to write a book and speak to others about life after stroke. The key is finding what gives you meaning, even if it looks different from before. For more guidance on rebuilding life after stroke, visit recoveryafterstroke.com/book. 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. Marco Calabi — From Induced Coma to Back at Work: A Stroke Survivor’s Honest Recovery Story At 47, Marco Calabi had a stroke caused by a hole in his heart. Today he’s back at work, has written a book, and is helping others go on. Marco’s Facebook Marco’s Instagram Marco’s Book: Life Change Highlights: 00:00 Introduction: Return to Work After Stroke 02:27 Life Before and After the Stroke 05:23 Health Awareness and Stroke Causes 09:22 The Day of the Stroke 15:02 Writing the book “Life Change: To Hell and Back” 27:51 The Importance of Support During Recovery 33:15 Gaining Autonomy and Finding Purpose 39:14 The Power of Mindset in Recovery 43:24 Life Lessons Learned Post-Stroke 47:24 Inspiring Others Through Personal Experience Transcript: Introduction: Return to Work After Stroke Bill Gasiamis (00:00) what kind of things is okay to complain about? Like in Italy, if the pasta is not cooked al dente, you must complain. Marco Calabi (00:07) Okay, yeah. Okay, yes, yes. Bill Gasiamis (00:08) you Marco Calabi (00:13) Okay, but you complain, you learn to complain about very important things. Bill Gasiamis (00:24) Hello everyone and welcome to the recovery after stroke podcast. Before we get into today’s episode, I want to tell you about a tool I’ve been using and genuinely love turn to.ai. If you’ve ever tried to keep up with the latest stroke research, you’ll know how overwhelming it can be. There are literally 800 new things published every single week about stroke research papers, patient discussions, expert comments, clinical trials, events. Nobody has time to read all of that. Turn2.ai is an AI health sidekick that does it for you. It searches everything published in the past week and sends you what’s most relevant to your situation personalized every week straight to you. It’s my favorite new tool for 2026. It’s just $2 a week, patient first, low cost. An

    1hr 2min

  6. 2 MAR

    Life 3 Years After Stroke: Pete Rumple’s Remarkable Road from Wheelchair to CrossFit

    Life 3 Years After Stroke: Three years ago, Pete Rumple was in a hospital bed, weighing 337 pounds, unable to walk, unable to talk, and completely paralysed down his right side following a massive hemorrhagic stroke. He was on 17 medications and had just spent his first night as a wheelchair user. By his own admission, the first year was so dark that he didn’t want to live. Today, Pete does CrossFit every day, has lost 150 pounds, is off 15 of his 17 medications, and is about to launch a new business at 61 years old. This is what life 3 years after a stroke can look like and, more importantly, how Pete got there. The First Decision: Control What You Can Within days of his stroke, while still in the hospital, Pete made a choice. He couldn’t walk. He couldn’t use his right arm. Doctors were managing everything around him. But he could control one thing: what he ate. “I got to change everything,” he says. “And as I lay there, this was one thing I could control with all the things I couldn’t.” Pete reduced his intake to two or three bites of food per day. By the time he left the hospital 30 days later, he had lost 40 pounds. That single decision became the foundation of everything that followed. For anyone newly out of the hospital and feeling overwhelmed, this is perhaps the most important message: you don’t have to fix everything at once. Find one controllable. Start there. Books like Grain Brain by Dr David Perlmutter and Why We Get Sick by Benjamin Bikman are excellent starting points for understanding the role of nutrition in brain recovery; both are recommended in this episode.   Movement: From Water to CrossFit Pete’s physical recovery moved in deliberate stages. With right-side proprioception severely affected, his body couldn’t properly sense where it was in space land-based exercise felt impossible at first. The solution was water. “The water surrounds you,” Pete explains. “It’s easier to move with what we both have.” He spent nearly a year in the pool doing aquatic therapy, then transitioned to a gym with a personal trainer for four months, then, in April 2024, ditched his cane and started CrossFit. He now attends every day, with about 30% modification. The journey from wheelchair to CrossFit wasn’t fast, and it wasn’t linear. But it was intentional.   The Brain Science Behind Doing Hard Things One of the most fascinating parts of Pete’s recovery is how he used neuroscience to drive his progress. After watching a Huberman Lab episode featuring David Goggins, he learned about the anterior mid-cingulate cortex (AMCC), a region of the brain that grows and strengthens specifically when you do things that are difficult and unpleasant. “Everything I did not enjoy or created pain, I’m doing it.” This wasn’t masochism. It was a strategy. Pete began deliberately choosing the exercises, behaviours, and tasks he least wanted to do and watched his recovery accelerate as a result. His speech improved. His movement improved. His cognitive function came back faster. Bill adds important context here: when you visualise movement, your brain fires the same neural pathways as when you physically perform it. Pete used this daily, studying his CrossFit workout the night before, visualising each exercise, then arriving 30 minutes early to breathe and mentally rehearse before training. This is neuroplasticity working for you, not against you. The choice is yours: choose the hard that rewards you, or endure the hard that doesn’t.   Identity: Three Words That Changed Everything Beyond the physical, Pete’s recovery demanded a complete rebuild of who he was. An executive career was gone. Independence had been stripped away. The personality and habits that contributed to the stroke, such as overworking, overeating, and using alcohol to manage stress, needed to be replaced, not just removed. He approached this the way he’d approached business: with a framework. At any given time, Pete identifies three words that define who he is. Right now: resilient, consistent, and unafraid. “I try to be honest with myself and say, where am I now?” he explains. “And it may change, but it gives me something to triangulate toward.” This kind of identity-based self-management, knowing who you are deciding to be, not just what you are trying to do, is one of the most transferable lessons from Pete’s story. What Life 3 Years After Stroke Really Looks Like Pete’s neurologist, who once saw him quarterly, recently told him she doesn’t need to see him annually anymore. “We have not seen this kind of recovery before from what you had,” she said. He’s about to start a fractional leadership business with a former CFO. He does CrossFit every day. He sleeps well. He volunteers. He uses AI tools to stay sharp and curious. He is, as he puts it, “on the other side of it.” But he’s also clear-eyed about what’s ahead: returning to high-stakes work, managing the stressors that contributed to his stroke in the first place, and monitoring the potholes that come with re-entering a demanding professional world. “I realise that is a very real risk,” he says. “I’m going to test and learn.”   The Lily Pad Principle When asked how to frame the journey for people still in the early stages, Pete offers one of the most useful images in this entire conversation: “It’s like lily pads across the lake. Get to a lily pad, then get to the next one. Don’t worry about boiling the ocean. Don’t worry about what it’s going to be in months or a year. Step by step. Keep pushing.” That is life 3 years after stroke, not a finish line, but a direction. And for Pete Rumple, the direction is forward.   Want more stories like this? Read Bill’s book recoveryafterstroke.com/book | Support the show: patreon.com/recoveryafterstroke   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. From Wheelchair to CrossFit: Life 3 Years After a Massive Hemorrhagic Stroke Pete Rumple lost 150 lbs, ditched the wheelchair, and now does CrossFit at 61. Here’s what life 3 years after a stroke really looks like. Turnto.ai InterviewPeter Rumple Interview EP 332Turnto.ai discount code: Bill10Highlights: 00:00 Introduction to Life 3 Years After Stroke Recovery Journey05:31 Physical Recovery and Rehabilitation11:05 Dietary Changes and Weight Loss15:42 Medication Management and Health Improvements21:29 The Role of Visualisation in Recovery26:03 Embracing Discomfort for Growth33:31 The Power of Hard Work and Persistence40:53 The Journey Back to Work50:48 Navigating Health Challenges56:25 Resilience and Consistency in Recovery01:04:38 Proactive Health Management01:15:11 Defining Identity Through Resilience Transcript: Introduction to Life 3 Years After Stroke Recovery Journey Pete Rumple (00:00)And Bill, I want to take a second and plug your book back in the first ⁓ the first session I did with you, I referenced a number of things you taught me through the podcast that I did to make to start building momentum like the cooking dinner every day was the to do. That was your mission. Yeah. so much of what I’ve learned from you, the podcast and what’s inevitably in the book was a great starting point for me. And I built my, my stuff on top of it, but it was really great to stand on your shoulders and get, and get that lift. Bill Gasiamis (00:44)Hi everyone, before we get into Pete’s story and you are definitely going to want to hear this one. I want to share something I’ve been using myself that I genuinely think could help a lot of you. It’s called turn2.ai and it’s an AI health sidekick that keeps you up to date with personalized updates every single week. Did you know there were over 800 new things published every week related to stroke? Research, expert discussions. patient stories, clinical trials, events. It’s an enormous amount of information. Turn2 finds what’s most relevant to you and delivers it straight to your inbox. I use it myself and it’s genuinely my favorite tool for 2026 for staying across what’s new in stroke recovery. It’s low cost and completely patient first. You can try it for free. And when you’re ready to subscribe, you can use my code, BILL10, at turn2.ai slash sidekick slash stroke to get a discount. I earn a small commission if you use that link at no extra cost to you. And that helps keep this podcast going. Also, if you haven’t yet, pick up a copy of my book, head to recoveryafterstroke.com/book. Real stories, real tools. The same stuff Pete and I talk about today and a huge thank you to everyone supporting us on Patreon and in the other ways that you support the show and myself. You’re the reason this content stays free for the people who need it You can support the show at patreon.com/recoveryafterstroke. Right. Let’s get into Pete Rumple’s story. Massive hemorrhagic stroke. Wheelchair couldn’t walk or talk 337 pounds three years later. He does CrossFit every day So you’re gonna want to hear this one. Let’s get into it Bill Gasiamis (02:35)Pete Rumpel, hello, welcome back. Pete Rumple (02:38)Hey Bill, it’s great to see you again. Bill Gasiamis (02:41)Great to see you too, my friend. ⁓ Last time we met was about a year ago. And this is gonna be a slightly different episode because we’re gonna talk about what things were like then and then what they’re like now, just so that we can paint a picture for people about how recovery has gone, what happened in the last 12 or so months. And in the previous episode, by the way, that was episode… 338 or something. And now we’re nearing episode 394, 395. will be. So I’ve been pretty consistent. So it means that it’s been over a year because I t

    1hr 24min

  7. 9 FEB

    Stroke Effects: The Hidden Deficits Jake Faced After a Hemorrhagic Stroke

    Stroke Effects: What a Hemorrhagic Stroke Did to Jake Stroke effects aren’t always obvious. Some show up immediately. Others arrive quietly, long after the hospital discharge papers are signed. For Jake, the stroke effects didn’t end when his life was saved; they began there. Four months after a hemorrhagic stroke, Jake can walk, talk, think clearly, and hold a conversation that’s thoughtful, articulate, and reflective. To someone passing him in the street, he might look “lucky.” But stroke effects don’t ask for permission to be visible. They live beneath the surface, shaping movement, sensation, pain, identity, and recovery in ways few people prepare you for. This is what stroke did to Jake. The Stroke Effects That Came Without Warning Before his stroke, Jake’s life was full and demanding. A husband. A father of four. An administrator coordinating drivers and operations. Active. Fit. Always moving toward the next opportunity. But in hindsight, the stroke effects were quietly signaling their arrival. Jake experienced severe headaches with a rapid onset. Nausea. Vomiting. Visual disturbances. At the time, they were dismissed as migraines. His blood pressure had been flagged as “pre-high” years earlier while living overseas, but after returning to Canada, he found himself without a regular doctor in an overloaded medical system. These were early stroke effects masquerading as manageable inconveniences. When the hemorrhagic stroke finally hit, it did so decisively, affecting the right side of his body, disrupting speech, movement, sensation, and cognition all at once. What Stroke Did to His Body One of the most misunderstood stroke effects is how specific and strange the deficits can be. Jake didn’t just “lose strength.” He lost motor planning. When he tried to write the letter T, his brain sent the wrong instruction. Instead of a straight downward line, his hand looped as if writing an L. The muscles worked. The intention was there. The signal was wrong. To retrain that connection, he didn’t practice ten times. He practiced thousands. This is one of the realities of stroke effects: recovery isn’t about effort alone, it’s about repetition at a scale most rehab programs don’t explain clearly enough. Post-Stroke Pain: The Stroke Effect No One Warns You About If there’s one stroke effect that dominates Jake’s day-to-day experience, it’s pain. Not soreness. Not discomfort. Neuropathic pain. Jake describes it as: Burning sensations Tingling Tightness, like plastic strapping wrapped around his limbs At its worst, a “12 out of 10” pain, like being tased while his hand is on fire This kind of post-stroke pain often resets overnight. One morning, he wakes up and feels almost normal. The next, the pain returns without warning, severe enough to stop him in his tracks. This is a stroke effect that confuses survivors and clinicians alike because it doesn’t follow logic, effort, or consistency. It simply exists. And for many survivors, it’s one of the hardest stroke effects to live with. The Non-Linear Reality of Stroke Effects Stroke recovery doesn’t move forward in a straight line. Jake learned this quickly. One week brings noticeable gains. The next feels like a regression. Then progress returns quietly, unexpectedly. This non-linear pattern is itself a stroke effect. Early on, these fluctuations feel frightening. Survivors worry they’re “going backwards.” But over time, patterns emerge. Rest days aren’t failures. They’re part of recovery. Silent healing days matter just as much as active ones. Understanding this changed how Jake viewed his recovery and how he measured progress. Identity Loss: An Overlooked Stroke Effect Some stroke effects don’t show up on scans. Jake wasn’t defined by his job, but work still mattered. Structure mattered. Contribution mattered. After the stroke, uncertainty crept in. Would he return to the same role? Could he handle the same responsibility? Should he? Stroke effects often force people to renegotiate identity, not because they want to, but because they must. The question shifts from “What do I do?” to “Who am I now?” For many survivors, this is one of the most emotionally demanding stroke effects of all. Recovery Begins With Action, Not Permission While hospitalized, Jake made a decision. He wouldn’t wait passively. He brought in notebooks. Pencils. Hand grippers. Hair clippers. He practiced shaving, writing, and gripping, no matter how long it took. If writing the alphabet took all day, that was the day’s work. By discharge, his writing had moved from scribbles to cursive. This wasn’t luck. It was intentional engagement with stroke effects, meeting them head-on instead of avoiding them. What Stroke Effects Teach Us Jake’s experience reveals something important: Stroke effects are not just medical outcomes. They are lived realities. They affect: How your body moves How pain shows up How progress feels How identity shifts How hope is tested And yet, understanding stroke effects, naming them, and normalizing them can reduce fear and isolation. That’s why conversations like this matter. You’re Not Alone With These Stroke Effects If you’re early in recovery, you might recognize yourself in Jake’s story. If you’re years in, you might recognize where you’ve been. Either way, stroke effects don’t mean the end of progress. They mean the beginning of a different kind of journey, one that rewards patience, repetition, and perspective. If you want to go deeper into recovery insights, lived experience, and hope-driven guidance: Learn more about the book here: The Unexpected Way That a Stroke Became the Best Thing That Happened Support the podcast and community here: Recovery After Stroke Patreon Final Thought Stroke effects don’t define who you are, but they do shape how you recover. Jake’s story reminds us that recovery isn’t about returning to who you were. It’s about learning how to live fully with what remains and discovering what’s still possible. 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. Living With Stroke Effects You Can’t Always See Jake reveals the stroke effects that remained after the hospital—pain, motor issues, fatigue, and how he’s navigating recovery four months on. Highlights: 00:00 Introduction and Background 05:10 Health Awareness and Signs 16:56 Personal Health Journey and Challenges 23:11 Recovery Process and Emotional Impact 38:28 Attitude Towards Recovery 46:30 Long-Term Recovery and Reflection 55:06 Work and Identity Post-Stroke 01:07:40 Pain Management and Coping Strategies 01:16:16 Community and Shared Experiences Transcript: Introduction and Background Bill Gasiamis (00:00) Today’s episode is one that really stayed with me long after we finished recording. You’re going to meet Jake, a stroke survivor who is very early in recovery and navigating the reality of what stroke actually does to a person long after the emergency has What makes this conversation so powerful isn’t just the hemorrhagic stroke Jake experienced. It’s how openly he talks about the stroke effects that followed. The pain, the confusion. the nonlinear recovery and the parts of stroke that are hard to explain unless you’ve lived them. I won’t give away Jake’s story that’s his to tell, but I will say this. If you’re early in recovery or you’re trying to make sense of symptoms that don’t quite fit the brochures or discharge notes, there’s a good chance you’ll hear something in Jake’s experience that feels confronting and reassuring at the same time. Now, before we get into the conversation, want to pause for a moment and say this, everything you hear, the interviews, the hosting, the editing exists because listeners like you help keep this podcast going. When you visit patreon.com slash recovery after stroke, you’re supporting my goal of recording a thousand episodes. So no stroke survivor has to ever feel like they’re navigating this if you’re looking for something you can lean on throughout your recovery or while supporting someone you love my book, the unexpected way that a stroke became the best thing that happened is available at recovery after stroke.com slash book. It’s the resource I wished I’d had when I was confused, overwhelmed and trying to understand what stroke had done to my life. all right. Now let’s get into the conversation with Jake. Bill (01:40) Jake Bordeaux, welcome to the podcast. Jake (01:42) Hi Bill, how are you this evening? Bill (01:44) I’m very well my friend. It is morning here. Just gone past 9am. We had a late night last night. We went to the opera and we saw Carmen. Jake (01:57) Hmm. How’s that? Bill (01:59) And for those who haven’t seen it, it’s in French and you have to read the subtitles because it has subtitles. I couldn’t read them because I was just a little too far. So I was squinting the whole night. But it’s a great opera, it was a great show, but we got home late so I’m quite tired. Jake (02:20) I couldn’t imagine that. Luckily I do speak French. So I wouldn’t need the subtitles, but that’s something I was afraid of actually, you know, coming out of the stroke is I was afraid almost that I had forgotten how to speak French or that I’d forgotten how to speak both languages. But luckily I speak ⁓ English and French. Bill (02:40) With a name like Bordeaux, I would definitely expect you to at least have some idea of French. Jake (02:45) Yes, indeed, sir. Half English and half French. I’ve been using that largely to my advantage. I’d been working up here in Northern Ontario with Federal Express. So I was working in administration here and sort of coordinating

    1hr 22min

  8. 4 FEB

    Craniotomy Stroke Recovery: How a Massive Medical Event Reshaped One Man’s Identity and Way of Living

    Craniotomy Stroke Recovery: How a Massive Medical Event Reshaped One Man’s Identity and Way of Living When Brandon Barre woke up after his stroke, half of his skull was missing. Doctors had performed an emergency craniotomy to save his life after a severe brain bleed. His left side barely worked. His memory felt fragmented. Time itself seemed unreliable; days, weeks, even months blurred together into what he later described as a kind of perpetual Groundhog Day. And yet, amid one of the most extreme medical experiences a person can survive, Brandon remained unexpectedly calm. This is a story about craniotomy stroke recovery, but it’s not just about surgery, rehab, or timelines. It’s about identity, mindset, and what happens when your old life disappears overnight, and you’re forced to rebuild from the inside out. Life Before the Stroke: Movement, Freedom, and Identity Before his stroke, Brandon lived a life defined by movement and autonomy. He worked in the oil fields as an MWD specialist, spending weeks at a time on drilling rigs. Later, he left what he called “traditional life” behind and spent years traveling the United States in an RV. He found work wherever he went, producing music festivals, building large-scale art installations, and immersing himself in creative communities. Stability, for Brandon, never meant stillness. It meant freedom. Stroke wasn’t on his radar. At 46, he was active, independent, and deeply connected to his sense of self. The Stroke and Emergency Craniotomy The stroke happened in Northern California after a long day of rock climbing with friends. Brandon didn’t notice the warning signs himself; it was others who saw that his arm wasn’t working properly. Later that night, he became profoundly disoriented. He was found the next morning, still sitting upright in his truck, barely conscious. Within hours, Brandon was airlifted to UC Davis Medical Center, where doctors removed a blood clot and performed a large craniotomy due to dangerous swelling. Part of his skull was removed and stored while his brain recovered. He spent 10 days in intensive care, followed by weeks in inpatient rehabilitation. Remarkably, he reports no physical pain throughout the entire process, a detail that underscores how differently each brain injury unfolds. Early Craniotomy Stroke Recovery: Regaining Movement, Losing Certainty Physically, Brandon’s recovery followed a familiar but still daunting path. Initially, he couldn’t walk. His left arm hung uselessly by his side. Foot drop made even short distances difficult. But what challenged him most wasn’t just movement; it was orientation. He struggled to track days, months, and time itself. Short-term memory lapses made planning almost impossible. Writing, once a core part of his identity, became inaccessible. He could form letters, but not their meaning. This is a common but under-discussed aspect of craniotomy stroke recovery: the loss isn’t only physical. It’s cognitive, emotional, and deeply personal. “It’s kind of like I’m in this perpetual day ever since the stroke… like Groundhog Day.” Technology as Independence, Not Convenience One of the quiet heroes of Brandon’s recovery has been voice-to-text technology. Because writing and spelling no longer function reliably, Brandon relies on dictation to communicate. Tools like Whisper Flow and built-in phone dictation restored his ability to express ideas, stay connected, and remain independent. This matters. For stroke survivors, technology isn’t about productivity. It’s about dignity. Identity Reset: Slower, Calmer, More Intentional Perhaps the most striking part of Brandon’s story is how little resentment he carries. He doesn’t deny frustration. He doesn’t pretend recovery is easy. But he refuses to live in constant rumination. Instead, he adopted a simple principle: one problem at a time. That mindset reshaped his lifestyle. He stopped drinking, smoking, and using marijuana. He slowed his pace. He became more deliberate with relationships, finances, and health decisions. He grew closer to his adult daughter than ever before. The stroke didn’t erase his identity, it refined it. Taking Ownership of Craniotomy Stroke Recovery A turning point came when Brandon realized he couldn’t rely solely on the medical system. Insurance changes, rotating doctors, and long waits forced him to educate himself. He turned to what he jokingly calls “YouTube University,” learning from other survivors and clinicians online. That self-directed approach extended to major medical decisions, including choosing monitoring over immediate invasive heart procedures and calmly approaching a newly discovered brain aneurysm with information rather than fear. His conclusion is clear: Recovery belongs to the survivor. Doctors guide. Therapists assist. But ownership sits with the person doing the living. A Message for Others on the Journey Toward the end of the conversation, Brandon offered advice that cuts through fear-based recovery narratives: Don’t let timelines define you. Don’t rush because someone says you should. Don’t stop because someone says you’re “done.” Every stroke is different. Every brain heals differently. And recovery, especially after a craniotomy, continues far longer than most people are told. Moving Forward, One Intentional Step at a Time Craniotomy stroke recovery isn’t just about regaining movement. It’s about rebuilding trust with your body, reshaping identity, and learning how to live with uncertainty without letting it dominate your life. Brandon’s story reminds us that even after the most extreme medical events, calm is possible. Growth is possible. And a meaningful life, though different, can still unfold. Continue Your Recovery Journey Learn more: https://recoveryafterstroke.com/book Support the podcast: https://patreon.com/recoveryafterstroke 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. Brandon’s Story: Surviving a Craniotomy, Redefining Identity, and Recovering on His Own Terms He survived a stroke and craniotomy, then calmly rebuilt his identity, habits, and life one deliberate step at a time. Research shortcut I use (Turnto.ai) I used Turnto.ai to find relevant papers and sources in minutes instead of hours. If you want to try it, here’s my affiliate LINK You’ll get 10% off, it’s about $2/week, and it supports the podcast. Highlights: 00:00 Introduction and Background 01:52 Life Before the Stroke 03:32 The Stroke Experience 11:03 Craniotomy Stroke Recovery Journey 17:09 Adjusting to Life Post-Stroke 28:46 Living Independently After Stroke 35:09 Facing New Challenges: Aneurysms and Uncertainty 42:13 Support Systems: Finding Community After Stroke 47:06 Identity Shift: Life Changes Post-Stroke 58:39 Lessons Learned: Insights from the Journey Transcript: Introduction and Background Brandon (00:00) next morning was still in the driver’s seat with my head on the steering wheel. and I couldn’t make either of my arms work I had been bleeding into my brain for 12 hours overnight they had to go ahead and do a, craniotomy. And so they took this whole side. It was a big craniotomy. They took that whole section of my skull out, put it in the freezer Bill Gasiamis (00:27) Before we begin today’s episode, want to take a moment to speak to you directly. If you’ve had a stroke, you already know this part. The hospital phase ends, but the questions don’t. You’re sent home expecting to get on with it. And suddenly you’re left trying to work out recovery, mindset, fatigue, emotions, sleep and motivation all on your own. You shouldn’t have to. That’s why I wrote my book, The Unexpected Way That a Stroke Became the Best Thing That Happened. Not to tell you what to do, but to walk beside you and show you the tools real stroke survivors use to rebuild their lives when the system stopped helping. and now with this book, you won’t have to figure it out alone. You can find that at recoveryafterstroke.com/book. All right, let’s get into today’s episode. Today, you’re going to hear from Brandon Barre. Brandon was 46 years old, active, independent and living an unconventional life when he had a stroke that led to a craniotomy. where part of his skull was removed to save his life. What stood out to me immediately about Brandon wasn’t just the severity of what he went through. It was the calm grounded way he approached recovery, identity and rebuilding his life. This is a conversation about stroke recovery. Yes, but it is also about mindset, ownership and what happens when you decide to take recovery into your own hands. Life Before the Stroke (01:52) Brendan Barre, welcome to the podcast. Brandon (01:54) Thank you, man. (01:56) You struggled a little bit getting here. There’s a couple of little things that caused a bit of a challenge for you. What are those things? Brandon (02:05) Well, I mean, first of all, I’m, I’m, I’m, even before my stroke, I was never very computer-y. Um, so using my phone for more than just making phone calls is kind of new to me. Um, so yeah, a new microphone, that was fun. And then I had made a bunch of notes, not realizing that I probably wasn’t gonna be able to see those notes. Um, you know, so that was also a little bit of a issue, but uh, but yeah, other than that, man. Not much, you know, I mean I’m here. (02:37) Yeah. I remember receiving your emails about, I’m not sure what day we’re on. I need to reschedule all that kind of stuff. Stuff that I used to do heaps. I remember in the early days of my kind of stroke recovery, I used to make appointments, put them in my calendar, get reminders about my appointments and still be confused about the day, the time and the lo

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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
    299
  • Rating
    Clean
  • Show Website
    Recovery After Stroke

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