Recovery After Stroke

Recovery After Stroke
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A Community And Podcast For Stroke Survivors And Carers

  1. 3d ago

    He Was 16 When a Stroke Ended His Football Career – Benjamin Miller on Identity, Substances, and Finding His Way Back

    Teenage Stroke: When Recovery Feels Like Losing Yourself Benjamin Miller was 16 years old and playing football in Texas when a carotid artery dissection changed the course of his life on September 22, 2017. He didn’t know what a stroke was. He didn’t know that the word would come to define the years that followed not because of what it took from his body, but because of what it took from his sense of who he was. Teenage stroke recovery is not what most people picture. The standard narrative runs like this: young brain, high neuroplasticity, rapid recovery, inspirational outcome. And in some ways, that’s true. The motor and language systems that stroke damages can rebuild quickly in an adolescent brain. But there’s a part of recovery that neuroplasticity doesn’t touch, and that’s identity. Who Was Benjamin Before the Stroke? He was a football player. In Texas, that means something. It means a community, a future, a sense of place in the social architecture of a town. When the stroke took that away, it didn’t just end a sport. It ended a version of himself that he hadn’t finished becoming. “My soul was torn in half,” Benjamin said in this conversation with Bill Gasiamis. It’s one of those phrases that stops you not because it’s dramatic, but because it’s accurate. “My soul was torn in half.” — Benjamin Miller, EP422 The stroke forced him to grieve something most 16-year-olds don’t have language for: the future self they were building toward. When that future collapsed overnight, he was left with a present he didn’t recognise and a past that no longer pointed toward anything. Why Teenage Stroke Is Different Teenage stroke recovery carries a layer of complexity that adult stroke recovery doesn’t always share. Adolescence is the developmental period in which identity is actively constructed; it’s not a fixed thing waiting to be restored. When stroke interrupts that process mid-construction, the survivor isn’t returning to who they were. They’re trying to become someone they haven’t yet figured out how to be. Benjamin’s experience of turning to substance use during his recovery wasn’t a character failure. It was, as he articulates in this episode, an attempt to manage an identity fracture that nobody around him had the vocabulary to name. When the pain doesn’t have a name, people find their own ways to survive it. This is one reason teenage stroke recovery deserves its own conversation separate from paediatric stroke outcome data, and separate from the adult recovery narrative. The emotional, psychological, and social dimensions are specific to this life stage. You might also recognise elements of this in other episodes: the identity rupture that follows sudden stroke in a young person surfaces in Young Stroke Survivor Recovery and Identity Loss After Stroke. Benjamin’s story adds a dimension that’s less often named: what happens when the loss of identity happens before you’ve finished building one. When the Brain Heals Faster Than the Self Can Here’s something worth naming a phenomenon the clinical literature notes but rarely centres in recovery conversations. Adolescent neuroplasticity is real. Benjamin’s brain had the capacity to rebuild physical and linguistic function faster than an older adult’s would. But neuroplasticity is a structural property of the brain. It doesn’t extend to the psychological work of integrating a traumatic experience into a developing sense of self. The result is a gap, sometimes a wide one, between the physical recovery that others can see and the internal recovery that isn’t visible at all. Benjamin appeared to be “doing well” in many respects while internally carrying a fracture that hadn’t been addressed. This gap is one of the least-discussed aspects of teenage stroke recovery. If you’ve experienced it, or watched someone you love experience it, it may be the most important thing in this episode. The Road Back And What It Actually Looks Like Benjamin’s memoir, Ed and I, available on YouTube, traces this journey. What comes through clearly in his conversation with Bill is that the path forward required him to walk through the things he’d been managing around the grief, the identity loss, the fracture itself. Recovery, in his telling, doesn’t take you back to who you were. It takes you through who you are now. That reframe from restoration to transformation is one that many stroke survivors eventually arrive at. Bill’s book The Unexpected Way That A Stroke Became The Best Thing That Happened documents ten tools for exactly that kind of recovery. For more episodes touching on identity and recovery: Emotional Recovery After Stroke Mistakes, Identity After Stroke — Cassie Jewell, Stroke With No Warning Signs — Tom Ballo, Losing Confidence After Stroke, and Stroke Brain Healing Neuroplasticity. Listen to EP422 This episode doesn’t pretend that recovery is a clean arc or that there’s a single turning point you can point to. What it offers instead is something more honest: the lived texture of finding yourself again when you’re not sure who you’re finding your way back to. Listen to EP422 of the Recovery After Stroke podcast wherever you listen. If a stroke or any trauma has made your world feel smaller, Bill’s new book Your World Doesn’t Have to Stay This Small is a practical guide to rebuilding your life, even when you’re not ready. Find it on Amazon at mybook.to/yourworld. If this show has helped you, you can support it 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. Benjamin Miller on Identity, Substances, and Finding His Way Back “My soul was torn in half.” Benjamin Miller had a stroke at 16 and lost more than football here’s how he found his way back. Highlights: 00:00 Introduction – Teenage Stroke09:01 The Day of the Stroke11:56 The Loss of Identity17:12 Coping Mechanisms: Alcohol and Escapism22:37 COVID-19: A Blessing in Disguise28:57 The Journey of Healing Begins32:40 Facing Uncomfortable Emotions38:45 Spiritual Awakening Through Adversity42:34 The Power of Breath and Movement47:35 Building Community in Recovery55:39 Finding Belonging and Understanding59:12 Creating a Path for Self-Healing Transcript: Introduction – Teenage Stroke Benjamin Miller (00:00)when I was told that by my father that. It felt like my soul was torn in half, because like I always saw myself as a student athlete and the bigger part of that was the athlete. And now I lost half of my identity and. I just didn’t know how to as a. 17 year old now like how to move forward with life and I didn’t know who I was and the only thing I defined myself as was taken away from me So now I was just like in this weird place where I felt like I was drowning on a day-to-day basis. Bill Gasiamis (00:33)hello, everybody. Welcome back to Recovery After Stroke. I’m Bill Gasciamas. My guest today had a stroke at just 16 years old, a carotid artery dissection that ended his football career and cracked his sense of who he was, right at the age when most people are just beginning to figure that out. Before we get into it, if you’ve been finding value in this podcast, my new book is out now. It’s called Your World Doesn’t Have to Stay This Small. A practical guide to rebuilding your life after trauma even when you’re not ready. You can find it on Amazon by searching my name or you can click the link in the show notes. Now it’s on to the episode. Bill Gasiamis (01:14)Benjamin Miller, welcome to the podcast. Benjamin Miller (01:16)Sir, thank you for having me. Bill Gasiamis (01:19)Tell me what’s regular life like for you before the stroke? Benjamin Miller (01:26)Yeah, I mean, when I had my stroke, I was 16 years old and I was in my third year of high school. So it was really comprised of just school, going to school every day and then playing sports after school. Like through the school, would play American football. I played baseball earlier in my life. And then towards the end of my high school, I just continued to play American football because I had the goal of following in my two older brother’s footsteps. for playing football, American football, in college at that time. So I just saw myself as following their path and going to play college football. And that’s what I was chasing throughout high school. Bill Gasiamis (02:09)How long ago was that? The stroke? Benjamin Miller (02:12)It was 2017, the fall of 2017. So Bill Gasiamis (02:16)Okay. Benjamin Miller (02:16)coming up on nine years on the 22nd of September. Bill Gasiamis (02:23)I I expect that stroke is the last thing going through the mind of a sixteen year old and the family of a sixteen year old. So Benjamin Miller (02:34)Yeah. Bill Gasiamis (02:34)w do you have any recollection of what it was like on the day of the stroke? Was there some kind of sign, was there anything that gave you an inkling of something being wrong before everything happened? Benjamin Miller (02:53)maybe like right before, because just playing American football, you’re always hear about head trauma and just CTE and concussions. And that’s always the biggest worry for playing football. But it was during the game that Friday night, it was the second game of our football season. And it was in between the first quarter and second quarter. And I came over to the bench and like in between going back on the field, our coach like brings the offense or defensive units together and we like talk about any in-game adjustments and I came over and sat down on the bench and I just noticed my balance like start to tip like I was having to stare down at my feet in order to stop myself from falling over an

  2. Sep 21

    Losing My Career and Myself, Then Choosing Who I’d Be – Cassie Jewell

    Identity After Stroke: Who Are You When Your Career Is Gone? Cassie Jewell got back from Iceland on a Monday. On Wednesday, she was demoted from the job she had built her life around. On Friday, she was in an ambulance with a stroke. She was 42, a licensed counsellor supervising behavioural health programs inside a US jail. She loved working with inmates and took two or three extra hours of work home most nights. “My entire identity was my career,” she told me. Within a single week, she lost the role and nearly lost her life. Her story shows something many survivors struggle to name: identity after stroke isn’t only about what your body can still do. It’s about who you are when the roles you relied on are gone. The Week Everything Changed On the Thursday night after the demotion, Cassie stayed up writing a book, determined to prove she still mattered. As she typed, her left hand stopped working. She put it down to tiredness and went to bed. She woke the next afternoon knowing something was wrong but not what. She decided it was a panic attack. Then she remembered her hand. She texted her mum, a nurse practitioner, who told her to call 911 and ask for a hospital with a stroke centre. When the paramedics arrived asking for the stroke patient, Cassie was the one who had answered the door. One side of her face was drooping and her left side was weakening. The diagnosis was an ischaemic stroke in the right basal ganglia, a deep brain region involved in movement, balance and, as she discovered, emotional regulation. If you want to understand this area of the brain better, our episode on lower basal ganglia stroke (https://recoveryafterstroke.com/lower-basal-ganglia-stroke/) goes deeper. Her doctors told her stress contributes to stroke rather than causing it directly, and her cardiologist is still monitoring her heart rhythm. Cassie has her own view: “I was literally burning myself to the ground… and then my brain was like, okay, we’ve had enough. We’re gonna stop you.” It’s a theme we’ve explored before in stroke and stress (https://recoveryafterstroke.com/stroke-and-stress-darren-walker/). When Your Brain Tells You You’re Fine The day after her stroke, Cassie tried to go to work. Her mum stopped her. Later, before she was cleared to drive, she got behind the wheel and bumped another car on her first day out. There’s a name for part of what was happening: anosognosia. It describes reduced awareness of your own deficits after a brain injury, and it’s more often associated with right-hemisphere strokes like Cassie’s. It isn’t stubbornness or denial; it’s a symptom of the injury itself, which is why a survivor can sincerely insist they’re okay while the people around them can see otherwise. Cassie summed up that period in one line: “It’s fine, it’s gonna be fine, even though it clearly, you know, wasn’t fine.” For families, understanding it can turn an argument into patience. Why Identity After Stroke Hits So Hard Identity is built from what we do, the roles we hold, and the stories we tell about ourselves, and a stroke can remove several at once. The more tightly your sense of self is tied to a single role, the larger the gap it leaves. “I lost my career and myself at the same time,” Cassie said. Her first job after returning to work didn’t last. She found she wasn’t as quick as she used to be, and that raised a harder question: “When you measure your self-worth in the things that you do… and then all of a sudden you don’t have your career anymore, who are you?” I recognised that question. Before my own strokes, I was a business owner and a dad, and I couldn’t have told you anything about myself beyond those labels. I didn’t have the vocabulary for identity loss. Guests such as Adam Wolfers (https://recoveryafterstroke.com/cerebral-vasculitis-stroke-identity-change-adam-wolfers/) have described the same collision between who they were and who they now are, and anyone weighing up work decisions may find our episode on changing career after stroke (https://recoveryafterstroke.com/change-career-after-stroke/) useful. The emotional side can catch even a professional off guard. “You’d think as a therapist I would be good with it,” Cassie said, “but I’d prefer to deal with other people’s emotions, not my own.” Our conversation about emotional changes after stroke (https://recoveryafterstroke.com/emotional-changes-after-stroke-sam-hanes/) explores this further. Choosing Who You Become Eighteen months on, Cassie doesn’t have an elevator pitch for who she is. She’s clearer about who she isn’t: someone driven by work. She values free time, her partner, and her dogs. She works full time doing intake assessments and sees private clients, and she describes herself this way: “I’m not as sharp as I was before, but I think I’m kinder.” A stroke, she says, “strips away everything else so you have nothing left but yourself,” and then “you can also choose what your new identity is gonna be.” That choice matters most. For most of my life I did what I’d been trained to do; it took a stroke to show me I could choose differently. Researchers Richard Tedeschi and Lawrence Calhoun called this post-traumatic growth: positive change that comes from the struggle with a traumatic event, not from the event itself. Cassie put it in her own words: “It’s not about the stroke. It’s about, okay, what am I gonna choose to do now?” It’s the idea at the centre of my book, The Unexpected Way That A Stroke Became The Best Thing That Happened (https://recoveryafterstroke.com/book). Practical Ways to Rebuild Identity After Stroke Drawing on Cassie’s story, here are a few starting points: Separate what you do from who you are. Write down your values, not your job titles. Values survive a stroke better than roles do. Give it time. For me, it took a few years before I could say I liked the person I’d become. Early recovery is rarely the time to decide who you’ll be forever. Let people you trust be your early-warning system. Cassie’s partner noticed her overwork long before she did, and her mum recognised the stroke symptoms. With anosognosia in the picture, other people’s observations matter. Replace old coping habits, don’t just remove them. Recovery is a chance to swap quick fixes for stress for ones that last. Use time as a lens. Cassie is reading Four Thousand Weeks by Oliver Burkeman and aims to visit all 195 countries. Find people who understand. Other survivors often give you the words for your experience. Our episode on finding purpose after stroke (https://recoveryafterstroke.com/finding-purpose-after-stroke/) is a good next listen. Listen to Cassie’s Full Story Watch or listen to the full conversation with Cassie Jewell. You can find more of her work at cassie-jewell.com (https://cassie-jewell.com). If a stroke has left your world feeling smaller, my new book, Your World Doesn’t Have to Stay This Small (https://mybook.to/yourworld), is a practical guide to rebuilding your life after trauma, even when you’re not ready. If this show has helped you, you can support it 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. Losing My Career and Myself, Then Choosing Who I’d Be – Cassie Jewell (Interview) A stroke at 42 took Cassie Jewell’s career and the identity built on it. What she found underneath changed how she works, loves, and travels. Highlights: 00:00 Introduction – Cassie’s Identity After Stroke 01:08 Life Before the Stroke 09:35 The Day of the Stroke 23:02 Aftermath and Recovery 28:41 Hospitalization and Rehabilitation Journey 32:04 Dissociation and Identity Post-Stroke 38:12 Life After Stroke: Adjusting to New Realities 50:32 How Stroke Forced Me to Discover Who I Really Am 01:02:14 The Dual Nature of Stroke Experiences Transcript: Introduction – Cassie’s Identity After Stroke Bill Gasiamis (00:00) Hi everyone, welcome back to Recovery After Stroke. I’m Bill Gassiamis. My guest today is Cassie Jewell, a counselor and author from the United States, who in February of 2025 at 42 had an ischemic stroke in the right basal ganglia. In the same week, she was moved out of the role she had built her whole identity around. We talk about perfectionism and the overwork loop that’s so hard to step out of. Why she tried to go back to work the day after her stroke, a condition called anosognosia. And the question at the heart of this episode: who are you when your career is gone? Now, if stroke has made your world feel smaller, my book is written for you. It’s called Your World Doesn’t Have to Stay This Small: A Practical Guide to Rebuilding Your Life After Trauma, Even When You’re Not Ready. Search for it on Amazon or tap the link in the show notes. And if this show has helped you, you can support it at patreon.com/recoveryafterstroke. And a massive thank you to everyone who already supports the show. You’re the reason these conversations keep happening. And now it’s time for the interview. Life Before the Stroke Bill Gasiamis (01:08) Cassie Jewell, welcome to the podcast. Cassie (01:10) Hi, how are you? Bill Gasiamis (01:12) I’m well. Thank you. Great to see you here. I really appreciate you joining me. I want to ask you a little bit about what your life was like before the stroke. What did you get up to? How did you occupy your time? Cassie (01:26) So my life was out of control before the stroke. I was working at a jail and it was a super stressful position. it was just stress all the time. I had a really bad supervisor too, a micromanager. but I also that wasn’t the only part of my life. I traveled a lot. I don’t know. It’s hard to even think about it now, honestly. Bill Gasiamis (01:54) How long

  3. Sep 8

    Stroke With No Warning Signs – Tom Ballo’s One Bad Day in Eighteen Months

    Stroke With No Warning Signs: What Tom Ballo Wants Every Survivor to Know Tom Ballo was 65 years old, nine years into a retirement he’d earned across three decades as a telecoms litigator, when a massive hemorrhagic stroke put him on the floor of his own home. There was no dizziness the week before, no slurred word he brushed off, no doctor’s visit he postponed. “It just hit me out of the blue,” he says. “There were no warning signs or anything. No. Very sudden.” His five-year-old granddaughter was the one who found him, ran to get her father, and called 911. That single fact- a stroke with no warning signs is the hardest one for a survivor’s family to sit with, and it’s the reason Tom’s story matters. We’re trained to look for a prodrome: the TIA that precedes the “real” event, the slurred speech, the drooping face, the classic FAST checklist. Those signs save lives when they’re present. But a meaningful share of hemorrhagic strokes, including Tom’s, give no such courtesy. Understanding this isn’t about inducing fear; it’s about removing the false comfort of “I’d definitely see it coming,” which quietly stops people from taking risk factors seriously simply because they feel fine right now. Eighteen Months Later: “I Had Like One Bad Day” What makes Tom an unusual guest isn’t just the suddenness of his stroke — it’s what he says about the recovery. Eighteen months out, he offers a claim that stops most interviewers in their tracks: “Ever since I had the stroke, as far as bad days, I had like one. One bad day, I guess.” For a show built around the long, uneven work of recovery, that’s either the most useful sentence a newly diagnosed survivor will hear all year, or the most worth interrogating. We chose not to resolve that tension neatly, because Tom doesn’t either — and that honesty is more useful to you than a tidy takeaway would be. “Ever since I had the stroke, as far as bad days, I had like one. One bad day, I guess.” — Tom Ballo Part of what underwrites his outlook is a framework he leaned on well before the stroke: self-actualisation, drawn from Abraham Maslow’s 1943 hierarchy of needs. Tom describes himself as someone who had already done the internal work of knowing who he was — a foundation he credits with much of his composure now. It’s worth a caveat here for accuracy: Maslow’s hierarchy is a theory of motivation, not a diagnostic instrument, and there’s no validated test that certifies someone “self-actualised.” What Tom is really describing is a stable sense of identity going into the hardest thing that ever happened to him — and that’s a legitimate, replicable idea, whether or not you use Maslow’s language for it. The Part That Doesn’t Get Easier “One bad day” is not the same as “no hard days,” and the interview doesn’t pretend otherwise. Tom is candid that spasticity the stiffness and involuntary muscle tightness that often follows a hemorrhagic stroke is getting worse, not better, as he moves further from the event. This is a pattern a lot of survivors will recognise, and few outsiders expect: the assumption is that time only heals, when in practice some deficits plateau, some improve, and some, like spasticity, can progress. If you’re eighteen months, three years, five years out and still watching a symptom evolve, Tom’s experience is a useful, unglamorous data point that you are not doing recovery wrong. There’s a quieter data point too, and it cuts the other way: Tom says he hasn’t had a bad night’s sleep since the day of the stroke. For an audience where post-stroke fatigue and insomnia are close to universal, that’s a genuine outlier worth naming precisely because it complicates any single story about what stroke recovery “typically” looks like. What Changed at Home The practical texture of Tom’s recovery runs through his family: the granddaughter who acted fast, the wife who stepped in to run the household during the hardest stretch, the shift from being the one who handled everything to being the one who’s learned, in his words, that “it’s kind of a blessing” to do less. He’s candid that he hasn’t driven since the stroke and says he doesn’t feel a pull to change that. There’s no performance of getting back to “normal” here — just an honest account of a life that reorganised itself around new limits, some of which he’s made peace with and some of which, like the spasticity, he’s still working out how to hold. Why This Story Is Worth Sitting With If you came to this looking for a checklist of warning signs, Tom’s story won’t give you one, and that’s the point. Some strokes, including major hemorrhagic ones, arrive without a warning a person could reasonably have caught. What you can control is what happens after: how quickly the people around you act (his granddaughter didn’t hesitate), how you rebuild a working identity in the aftermath, and how honestly you track what’s actually getting better versus what’s quietly getting harder. Tom’s “one bad day” isn’t a promise you’ll get the same outcome. It’s permission to notice what’s still working, even while something else spasticity, driving, the parts of independence you used to take for granted hasn’t resolved yet. If Tom’s story raises questions about your own recovery, or a loved one’s, that’s exactly the conversation this show exists to have. You can go deeper into the ideas behind post-traumatic growth after stroke in Bill’s book, The Unexpected Way That A Stroke Became The Best Thing That Happened (recoveryafterstroke.com/book), and if this kind of interview is valuable to you, the show runs in part on listener support 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. Stroke With No Warning Signs – Tom Ballo’s One Bad Day in Eighteen Months He had zero warning signs before his stroke at 65. Eighteen months later, Tom Ballo says he’s had exactly one bad day. Highlights: 00:00 Stroke with no warning signs 03:25 What kind of stroke was it 08:18 Learning to talk and walk again 11:42 Does he have aphasia? 17:46 One bad day in eighteen months 27:15 The symptom that’s getting worse 33:20 The one thing that hasn’t changed Transcript: Stroke with no warning signs Tom Ballo (00:00) it just hit me out of the blue. It hit me out of the blue. There were no warning signs or anything. No. very sudden. luckily, my youngest granddaughter was there. My young granddaughter, she was five years old. She was there and I guess she saw me and she went and got her dad, who’s my son-in-law. They were living with us. At the time we had a big house and he told him, she told him and he came down and called 911 right away. Bill Gasiamis (00:39) Welcome back to Recovery After Stroke. I’m Bill Garciamas, and today’s guest is a genuinely different kind of conversation for the show. Tom Ballo spent 32 years as a telecoms litigator, retired at 56 to actually enjoy it, and nine years later, at 65, a massive hemorrhagic stroke hit him with absolutely no warning. His five-year-old granddaughter is the one who found him and got help. What you’re about to hear is a conversation that moves differently than most on this show. Tom takes his time, getting to his words, and there’s a real compassion and openness in the way he talks about what happened to him. No performance, no polish. Just the man being honest about where he’s landed 18 months on. Stay with the pace of it. That pace is part of what he’s telling you. We’re going to get into what he calls one bad day in 18 months, what’s actually gotten harder rather than easier, and what he’s learnt about who he already was before any of this happened. Remember to grab a copy of my book, The Unexpected Way That a Stroke Became the Best. thing that happened at recoveryafterstroke.com/book It’s the 10 tools I used to build my own recovery. And a lot of what Tom describes today connects straight back to it. And guys, if this show has helped you, remember you can support the show directly at Patreon by going to patreon.com/recoveryafterstroke and making a small monthly contribution. It helps cover costs of recording, editing and hosting the podcast. Bill Gasiamis (02:16) Tom Ballo, welcome to the podcast. Tom Ballo (02:18) Thank you. Glad to be here. Bill Gasiamis (02:19) Tell me a little bit about what occupied your time before stroke. Tom Ballo (02:24) Well, I retired, retired 10 years ago. So I was well acclimated to that. And I mostly doing, I had a YouTube channel. It it’s called GTA5 and Squirrels. And I said, make recordings of Grand Theft Auto V video game, really interesting videos. And then I got some squirrels that were living next to the house and one of them started was really… friendly. He kept walking up to me and finally started climbing up me and I started feeding him and I was making videos of videos of that. What kind of stroke was it Tom Ballo (03:19) I had over 1500 subscribers and 1 million views. And the whole channel just hit 1 million. Bill Gasiamis (03:30) And y you used to play GTA, Grand Theft Auto. Was it your favourite game? So you’re doing that in your retirement before you retire retired, what were you doing for a living? Tom Ballo (03:40) I was a lawyer for a real, real large telephone company for 32 years. I was a litigator and regulatory law, so it was administrative law, I was, it was just, it was cases, and they were the biggest cases that affected the company. About nine years. Bill Gasiamis (04:06) Yeah. Tom Ballo (04:07) That was one reason I retired early. I retired at age 56 and I just wanted to make sure I had time to enjoy retirement. I didn’t want to work until I died or would ha

  4. Sep 1

    Jonathan & Letitia Hritz: Keeping a Promise Through Stroke, Seizures, and Everything After

    Seizures After Stroke Symptoms: What Letitia Hritz Wants Every Survivor to Know It was New Year’s Day, and Letitia Hritz almost didn’t go. Her husband Jonathan wanted to hit a sale at their local mall, and she’d rather have stayed home. She went anyway, with gift certificates from Christmas, a Chinese buffet for lunch, their seven-year-old daughter in tow. They’d barely sat down at the restaurant when it started: tunnel vision, a sudden inability to speak, the desperate, wordless search for the nearest chair. “I remember sitting there,” Letitia says, “and I think I said I feel like I’m going to pass out. And that honestly was the last thing I remember.” She was 34. The emergency room staff, seeing a young woman collapse on New Year’s Day, assumed the obvious: too much celebrating the night before. It took nearly three hours, and a doctor asking her to roll over and noticing her face had dropped, before anyone called a stroke alert. By then Jonathan had already caught her as she went limp in his arms, already flagged down an off-duty paramedic eating lunch nearby, already made the drive to the ER with their daughter beside him, not yet knowing the word for what was happening to his wife. The Diagnosis No One Expected Letitia’s stroke was ischemic, centered in the left thalamus a similar injury to other survivors Bill has spoken with (recoveryafterstroke.com/thalamic-ischemic-stroke-survivor-story/), and one that comes with its own particular set of challenges around sensation, fatigue, and cognition. The cause, once doctors went looking, turned out to be a PFO, a small hole in her heart that had let a clot travel straight to her brain. It’s a cause other guests on this show have lived through too (recoveryafterstroke.com/pfo-and-stroke-recovery-yvette-adams/), and like many of them, Letitia had no idea it was there until the stroke forced the question. What followed was the version of recovery most people never hear about: inpatient rehab, then six months of outpatient therapy, a wheelchair, then a walker, then a cane she still carries today. And then, just as she seemed to be finding her footing, something stranger: a full return of her stroke symptoms, triggered by an unrelated illness, so sudden and so complete that even a family who’d spent two decades around the “stroke world” had never heard the word for it: recrudescence. “I’m glad you’ve never heard of that,” Jonathan told Bill, “because I know you’ve been doing this a long time… and we had never heard of it either.” Seizures After Stroke Symptoms: What Letitia Actually Experiences This year, a new chapter began, one this episode was built around. Letitia started having seizures. Not occasionally: close to 200 of them since January, sometimes several in a single day. What makes seizures after stroke symptoms so hard to manage isn’t just the seizures themselves, but how unpredictable the warning signs can be. “I try very hard to pay attention to how I’m feeling,” Letitia says, “but there are some days where I don’t feel well, and it’s very hard to differentiate those two feelings.” Some seizures come with a warning she’s learned to read. Others don’t; they simply arrive, and the world goes dark for a minute or three. The seizures have taken her driving privileges and, with them, a piece of her independence. They’ve also reshaped her household in a quietly heartbreaking way: her ten-year-old daughter now knows to guide her mother to the floor, pull out an iPad, and start a timer. “I hate it,” Letitia says. “I just hate it.” It’s a small, devastating image of what recovery actually asks of a family: not a single crisis to survive, but a new baseline everyone has to learn to live inside. A House That Was Never Built for This Long before the seizures, the Hritz family was already learning how much a body’s needs can outpace a home’s design. Their two-story house has eight steps from the driveway to the front door, fifteen more to the bedroom, ten down to the laundry. “I’m sitting there at thirty-four years old,” Jonathan remembers, “thinking to myself, how am I ever going to take my wife home?” It’s a question few young stroke survivors (recoveryafterstroke.com/young-stroke-survivor-izzy-hirst/) or their partners expect to face, and one more reason recovery is rarely just medical. The Cost That Never Stops Climbing Then there’s the bill. This year alone, between two hospital admissions, the Hritz family is looking at roughly $178,000 in medical costs a number that grows faster than they can pay it down. “You can make all the payments you want,” Jonathan says, “it never goes down.” It’s the kind of financial strain that stroke caregivers (recoveryafterstroke.com/stroke-caregivers/) rarely get warned about in advance, and one more layer on top of everything else the family is carrying, including, this year, college funds quietly set aside for something else. A Promise Still Being Kept Through all of it, one thing has stayed constant. Bedside in the hospital in 2023, Jonathan made Letitia a promise: that no matter what happened, they would get through it together, and he would always give her a safe place to heal. Three years, a heart procedure, a recrudescence episode, and nearly 200 seizures later, that promise is the reason their family calls their story Keeping a Promise, and it’s still, in Jonathan’s words, “something I’m still trying to keep, because we have not been able to.” Their story is a reminder of something Bill has said often on this show, in different words each time: recovery isn’t a straight line, and it doesn’t end when the hospital discharges you. As Jonathan puts it, “People just think, he was in the hospital, and he’s out now. He must be okay… They’re not okay.” What the Hritz family is living through — the seizures, the setbacks, the debt, the promise is exactly the kind of story that doesn’t get told enough. If any part of it sounds familiar, you are not the only one going through it (recoveryafterstroke.com/stroke-caregiver-journey-donna-odonnell-figurski/), and it’s worth hearing more stories like it, wherever you can find them. Bill’s book, The Unexpected Way That A Stroke Became The Best Thing That Happened, was written for exactly this: the years after the hospital, when the real work of recovery begins. Read it here: recoveryafterstroke.com/book. And if this show has helped you the way it’s helped families like the Hritzes, you can support it directly 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. The post Jonathan & Letitia Hritz: Keeping a Promise Through Stroke, Seizures, and Everything After appeared first on Recovery After Stroke.

  5. Aug 24

    Losing Confidence After Stroke – Jaemin Frazer

    Losing Confidence After Stroke: Why It Happens and How to Get It Back Jaemin Frazer has spent nearly two decades and around 16,000 coaching hours on a single question: what is actually going on when a capable person stops trusting themselves? He founded The Insecurity Project to work on it directly. He is not a stroke survivor – and that turns out to be the reason this conversation is useful, because he arrives without any assumptions about what stroke recovery is supposed to look like. What he does have is a precise account of what happens to a person when their ordered world collapses, which is, more or less, the definition of a stroke. “I Just Want to Be Who I Was” Almost every survivor says some version of this. Six weeks out, six years out – the sentence barely changes. Jaemin’s response is to ask what is actually being requested. His answer: not the past. Certainty. They’re looking for certainty. They’re looking for comfort. They’re looking for safety. They’re looking through rose coloured glasses in many ways, because no one’s life was perfect before anything. That last part is the uncomfortable bit. The life you want back had its own problems. What memory offers is not a better life but a known one – and the nervous system will take known over good almost every time. Certainty Is the Real Request Humans need certainty the way they need food and shelter. We don’t function in chaos. But we also can’t get certainty from the outside world, because the outside world doesn’t have any to give. It never did. The stroke didn’t remove your certainty; it removed your ability to keep believing in it. Which leaves one option. As Jaemin puts it: The most resourceful form of certainty is to embrace uncertainty and back yourself. That distinction – external certainty versus internal certainty – is the whole conversation. When your sense of safety lives outside you, you have to control your circumstances to feel all right, and after a stroke your circumstances are largely uncontrollable. When it lives inside you, circumstances can do what they like. This is the same territory covered in stroke recovery mindset (https://recoveryafterstroke.com/stroke-recovery-mindset/), approached from a completely different angle. Self-Doubt Is Useful. Insecurity Is Not. Jaemin draws a hard line between the two, and it’s worth holding onto. Self-doubt is accurate information about a skill gap. If you can’t yet climb the stairs unaided, self-doubt is what stops you attempting it alone. It says nothing about your worth. It’s wisdom. Insecurity is different. Insecurity is the belief that a failure would expose something defective about you. Jaemin argues that most people misdefine it – it isn’t fear of judgement, failure, or rejection. It’s one level deeper: No one’s actually afraid of being rejected. They’re afraid of: if I put my best foot forward and it’s not enough, and then people don’t accept me – what does that confirm about my own inadequacy? The threat isn’t out there. It’s a verdict you’ve already passed on yourself, waiting for the world to co-sign it. What Insecurity Costs Your Recovery This is where it stops being philosophy. Jaemin frames insecurity as a resource problem. Proving yourself, defending yourself, covering and compensating – all of it consumes energy. When life is going well there’s enough spare capacity that you never notice the drain. After a stroke, there is no spare capacity. A stroke puts you into survival mode, and now you’ve got no resources to survive, because all your best resources are directed elsewhere to make sure no one sees your inadequacy. Survivors already know that fatigue after stroke is not ordinary tiredness. An injured brain rewiring itself is metabolically expensive. Every unit of energy spent managing how you appear to other people is a unit unavailable for healing. Attending to the emotional side of recovery isn’t separate from the physical work – it’s what frees up the capacity to do it. That connection runs through emotional recovery after stroke (https://recoveryafterstroke.com/emotional-recovery-after-stroke-dr-bradley-nelson/) as well. Why Your Friends Push Back Many survivors have to change how they live – what they eat, what they drink, where they go, who they spend time with. And many report losing friends over it. Jaemin’s framing here is bracing. Resistance from the people around you isn’t a malfunction. In any story worth telling, the character who transforms does so by overcoming obstacles, and those obstacles almost always arrive in the form of other people. Remove the resistance and nothing in the hero is enlarged. So when someone says you’ve changed and doesn’t mean it kindly, they are – without intending to – handing you the exact thing you need to become someone who no longer requires their approval. Grief and Insecurity Are Not the Same Thing This distinction matters, and conflating them causes real harm. Losing the use of a limb is a genuine loss. Grief is the appropriate response, and it deserves acknowledgement rather than management. The damage begins when the loss becomes a statement about your worth. I can’t run, therefore I’m not a runner, therefore who am I? That is no longer grief – that’s insecurity wearing grief’s clothes, and it needs a different response entirely. Survivors working through that identity question will recognise it in craniotomy stroke recovery and identity reset (https://recoveryafterstroke.com/craniotomy-stroke-recovery-identity-reset/), and it sits close to the ground covered in anxiety after stroke (https://recoveryafterstroke.com/anxiety-after-stroke/). That’s Not the Tragedy. That’s the Setup. The line Jaemin returns to twice in the episode is this: being lost and confused doesn’t disqualify you from a meaningful life. It’s what qualifies you to begin one. Nobody reaches adulthood with an accurate picture of who they are. Everyone arrives confused. The confusion isn’t damage to be repaired before you can start – it’s the starting position. This reframes the disorientation of early recovery as the opening move rather than evidence that something has gone permanently wrong. The same reframe underpins post-traumatic growth in stroke recovery (https://recoveryafterstroke.com/post-traumatic-growth-stroke-recovery/). And Jaemin is firm that this is solvable – not managed, not coped with. Solvable. Because the inadequacy you’ve been protecting everyone from isn’t real. It’s a conclusion you drew as a child and have been gathering evidence for ever since. There is no monster under the bed. Only the idea of one. Where to Start Start by being precise. When you catch yourself saying I lost my confidence, ask what you actually mean. Confidence at what? In front of whom? What exactly are you afraid would be revealed? Abstract language hides the levers. Precise language shows you where they are. Closing Links If this episode is useful to you, Bill’s book The Unexpected Way That A Stroke Became The Best Thing That Happened covers ten tools for recovery and personal transformation – you can find it at https://recoveryafterstroke.com/book. If you would like one-on-one support with your own recovery, you can apply at https://recoveryafterstroke.com/momentum. If this show has helped you, you can support it at https://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. Losing Confidence After Stroke – Jaemin Frazer (Interview) You don’t need your old life back. You need to trust yourself again – and Jaemin Frazer explains exactly why that feels impossible after stroke. Highlights: 00:00 Introduction – Losing Confidence After Stroke 08:54 Embracing Uncertainty and Personal Resourcefulness 20:43 The Role of Self-Doubt and Insecurity 38:26 Transformational Journeys: Overcoming Obstacles 46:14 The Hero’s Journey and Storytelling 52:07 Understanding Bullies and Personal Growth 59:21 The Role of Parents in Identity Formation 01:11:17 The Cost of Insecurity in Recovery 01:20:55 Finding Purpose Beyond Insecurity Transcript: Introduction – Losing Confidence After Stroke Jaemin (00:00) A stroke puts you into survival mode, and now you’ve got no resources to survive because all your best resources are directed elsewhere So then it costs you everything. It costs you your future. It costs you your ability to heal, to make sense of this, to come out the other side and reinvent or do whatever you need to be present for yourself. It’s a slow descent into madness really, if all your best resources are proving and defending, covering and compensating, then you stop being human, you stop being alive, you stop being present, you become hypervigilant around what others are thinking, and your world keeps getting smaller. Bill Gasiamis (00:35) Welcome back to Recovery After Stroke. I’m Bill Gasciamas. Before anything else, thank you to everyone supporting the show on Patreon, becoming a YouTube member, and to everyone supporting it in all other ways. Sharing episodes, leaving reviews, sending them to someone who needs them, buying the book. This show has reached over a million and a half downloads because of people doing exactly that. And I don’t take it for granted. If you’ve ever caught yourself saying, I just want to be who I was, this episode is going to sit with you for a while. My guest today is Jaemin Fraser. Jaemin is a coach, the founder of the Insecurity Project, a TEDx speaker, and as of this year, a novelist. He spent nearly two decades, around 16,000 coaching hours, on one problem. What happens to a person when they stop trusting themselves and what it costs them? Jaemin has not had a stroke. I w

  6. Aug 23

    Citicoline for Brain Recovery: What the Major Trials Actually Found

    Citicoline and Stroke Recovery: What the Major Clinical Trials Actually Found If you’re recovering from a stroke or brain injury, there’s a familiar, exhausting question that shows up once the rehab schedule is set: is there anything else a supplement, a nutrient, something that could genuinely support the brain while it rebuilds itself? Citicoline comes up in that search constantly, across nootropic forums, supplement stores, and even some hospital protocols. It also happens to have one of the largest clinical trial records of any brain-recovery compound available. So rather than trusting a product label, it’s worth going straight to what those trials actually found, including the parts that didn’t work. What Citicoline Is Citicoline (cytidine diphosphate-choline, or CDP-choline) is a compound your body already produces. It’s a building block for phosphatidylcholine, a major structural component of neuronal cell membranes. The theory behind supplementing it is straightforward: give the brain more raw material to repair damaged membranes and support neurotransmitter production after an injury. It’s sold over the counter as a supplement (often branded as “Cognizin”), and in some countries it’s used clinically, including intravenously, in hospital stroke and TBI protocols. What the Major Trials Actually Show This is a case where the size of the evidence base is unusually large, and the results are humbling rather than triumphant. The ICTUS trial, published in The Lancet in 2012 with 2,298 patients, tested citicoline for acute ischemic stroke and found no significant benefit over placebo for global recovery at 90 days; the trial was stopped early for futility (PMID 22691567). The COBRIT trial, published in JAMA the same year with 1,213 traumatic brain injury patients, tested a higher dose of 2,000 mg per day for 90 days and again found no meaningful difference in functional or cognitive outcomes at 90 or 180 days (PMID 23168823). A 2020 Cochrane review pooling ten randomized trials and more than 4,000 stroke patients concluded there was little to no difference between citicoline and placebo in mortality, disability, or neurological recovery, and rated the overall evidence quality as low, noting six of the ten trials were industry-sponsored (PMID 32860632). Here’s where the picture becomes more interesting. A separate trial gave stroke survivors citicoline continuously for twelve months, rather than just during the acute phase, and found real improvements in attention, executive function, and temporal orientation compared to usual care, along with a non-significant trend toward better long-term functional outcome (PMID 23406981). A broader 2020 systematic review across neurological conditions similarly found citicoline useful for slowing dementia progression and enhancing cognition in healthy adults, while describing its effect on TBI specifically as “unclear” (PMID 33053828). A separate meta-analysis of twelve trials found citicoline significantly improved functional outcomes overall, even while showing no significant difference on several other individual outcome measures a genuinely mixed result rather than a clean positive or negative (PMID 28458415). The pattern that emerges: as a short-term rescue treatment for acute stroke or acute TBI, the largest, best-designed trials say no, it doesn’t move the needle. As a longer-term support for post-stroke cognitive function, taken consistently over months, there’s a more modest but real signal. What This Means for Stroke Survivors – The Honest Limits Citicoline is not an acute miracle treatment, and the largest trials in the field say so plainly. If you were hoping for a supplement that meaningfully changes outcomes in the days or weeks after a stroke, the evidence doesn’t support that expectation. The more genuine finding of better attention and executive function with twelve months of continuous use comes from a single open-label trial that wasn’t blinded, so it deserves a more cautious read than the large, definitive negative trials. There’s also a dosing gap worth knowing about before anyone assumes a supplement bottle reflects the research: clinical trials used 500 to 2,000 mg per day, often for months, while most over-the-counter citicoline products are dosed at 250 to 500 mg per day, meaningfully lower than the doses that produced the modest cognitive signal. Practical Takeaways – Questions to Bring to Your Treating Team Ask your neurologist or doctor whether citicoline makes sense for your specific recovery stage. Acute stroke support and long-term cognitive support are different questions with different evidence behind them. If you’re considering a supplement, check the label dose against what was actually studied. A product dosed well below 500 mg per day is not comparable to the trials that showed a cognitive benefit. Search “ICTUS citicoline,” “COBRIT trial,” or “citicoline cognitive stroke” on PubMed yourself, and form your own view. The honest picture here is nuanced enough that it’s worth reading past the marketing copy. The value of citicoline, if it exists for you, isn’t as a substitute for rehab, sleep, movement, and nutrition; it’s a small addition on top of everything else you’re already doing well, chosen because you understand the actual trial record rather than a supplement label. For the broader framework I used to separate genuine evidence from supplement hype throughout my own recovery, see my book: https://recoveryafterstroke.com/book. If breakdowns like this one are useful to you, the Recovery After Stroke Patreon (https://patreon.com/recoveryafterstroke) directly funds more of them. 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 Citicoline for Brain Recovery: What the Major Trials Actually Found appeared first on Recovery After Stroke.

  7. Aug 21

    Curcumin and Brain Bleed Recovery: What the Research Actually Shows

    Curcumin and Brain Bleed Recovery: What the Research Actually Shows If you’re recovering from a hemorrhagic stroke or a ruptured aneurysm, you’ve probably noticed that most “brain health supplement” advice online is written for the other kind of stroke: the clot type. It rarely addresses what’s actually happening inside a bleed injury: blood breaking down inside brain tissue, swelling, and a wave of secondary inflammation that can do as much damage as the bleed itself. So when someone in this community asked whether there’s any real research behind supplements for healing the brain after a bleed, it was worth digging into properly. One compound kept surfacing: curcumin, the active constituent in turmeric. What Curcumin Is and Why It Showed Up in This Search Curcumin is the primary bioactive compound in turmeric, long studied for its anti-inflammatory and antioxidant properties. It’s an unusual candidate for brain-bleed research because most stroke supplement research focuses on ischemic stroke clots where the biology is different. A bleed involves blood pooling in or around brain tissue; as red blood cells break down, iron released from hemoglobin triggers an inflammatory cascade that increases swelling and pressure inside the skull. Anything that can interrupt that cascade is scientifically interesting, at least in principle. What the Evidence Actually Shows The research specific to bleed-type brain injury is more developed than you might expect, but it comes with an important caveat covered below. In animal models of intracerebral hemorrhage, curcumin reduced swelling by blocking aquaporin-4 and aquaporin-9, water-channel proteins involved in brain edema, and by calming the NF-kB inflammatory pathway that drives secondary damage after a bleed (PMID 26119880). A separate mouse study found that curcumin given within six hours of an induced brain bleed helped shrink the resulting hematoma, reduced inflammatory gene activity, and improved neurological recovery scores compared to untreated animals (PMID 21417704). The finding most relevant to aneurysm-type bleeds specifically comes from a mouse model of subarachnoid hemorrhage, the same category of bleed caused by a ruptured aneurysm. Curcumin, administered shortly after the bleed, reduced brain water content and improved neurological scores, apparently by protecting the integrity of the blood-brain barrier (PMID 27979493). On the human side, the picture shifts. There is currently no published human clinical trial testing curcumin specifically for hemorrhagic stroke or brain-bleed recovery. What does exist is human evidence in an adjacent area: two separate placebo-controlled trials in older adults found that a bioavailable (“lipidated”) form of curcumin improved working memory and helped prevent the cognitive decline seen in the placebo group over time (PMID 27102361; PMID 32512782). That’s genuinely encouraging evidence for brain health broadly, but it is not the same as proof that curcumin aids recovery from a bleed specifically. A 2024 systematic review pooling curcumin and traumatic brain injury research examined eighteen studies. Every one of them was an animal study (PMID 38798711). That single fact is the most important piece of context in this entire topic. What This Means for Stroke Survivors – The Honest Limits Here is the line between promising and proven: everything specific to brain-bleed recovery hematoma size, inflammation, neurological scores after hemorrhage comes from mouse studies, not human trials. Mice are not small humans, and preclinical results routinely fail to replicate in people, particularly in stroke research, where decades of promising animal data have not translated into approved acute therapies. There is also a safety consideration that matters more here than in most supplement discussions: curcumin has a mild blood-thinning effect. If you are recovering from a bleed, on anticoagulant medication, or scheduled for any procedure, that is not a detail to skip past; it is the single most important thing to raise with your medical team before considering curcumin or turmeric extract in any form. Practical Takeaways – Questions to Bring to Your Treating Team Ask directly about bleeding risk before considering any curcumin or turmeric supplement, especially if you are on blood thinners or still in the early recovery window after a hemorrhage. Ask whether the standard turmeric found in food or basic capsules is even comparable to the “bioavailable” or “lipidated” curcumin formulations used in the human trials. Standard turmeric is poorly absorbed, and the studies that showed a benefit did not use it. Ask your doctor, or check ClinicalTrials.gov yourself, whether any human trials specific to your diagnosis are currently recruiting or have published results since this was written; the evidence base here is still moving. The goal isn’t to decide for or against curcumin based on a YouTube video. It’s to walk into your next appointment with a specific, well-informed question instead of a vague one about “brain supplements” so your medical team can give you a real answer. If you want to go deeper on evidence-based approaches to stroke recovery, my book covers the broader framework I used to rebuild my own recovery plan: https://recoveryafterstroke.com/book. And if this kind of research breakdown is useful to you, the Recovery After Stroke Patreon (https://patreon.com/recoveryafterstroke) directly funds more of it. 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 Curcumin and Brain Bleed Recovery: What the Research Actually Shows appeared first on Recovery After Stroke.

  8. Aug 17

    The Things Getting In The Way Of Your Recovery – Dr. Robert Hedaya

    What Blocks Brain Recovery After Stroke: The Exposures Nobody Tests For Introduction In 1987, Dr. Robert Hedaya found an office he loved. It overlooked a stream and a forest, and it had a balcony. Within about an hour of arriving each morning, he would become tired and mentally foggy, something he describes as unlike him. It took him time to work out what was happening. The building had mold. He is a Clinical Professor of Psychiatry at Georgetown University Medical Center and a pioneer of functional medicine psychiatry. He had spent his career studying why brains underperform. And he still didn’t see it until it was affecting him personally. That story is worth sitting with, because it goes to the heart of a question most stroke survivors eventually ask: if I’m doing the therapy, the exercises, the sleep, the diet, why am I still stuck? Why this question matters more than any rehab program When Dr. Hedaya returned to Recovery After Stroke for his third conversation with Bill Gasiamis, the topic was not a new treatment. It was the opposite: the things that get in the way of treatments already working. His argument is structural. After a stroke, the brain rebuilds by growing new connections between neurons. That process is physical. It requires materials, energy, and an absence of interference. If something is interfering, no amount of repetition in a rehab gym will overcome it. So the useful question is not only what helps my brain recover but also what blocks brain recovery after stroke and whether any of it is happening in your own house, your own mouth, or your own bloodstream without anyone having looked. Dr. Hedaya raised three: mercury, mold, and Lyme. Mercury: how a metal stops neurons from branching Picture a neuron as a tree in winter: a trunk with branches extending outward. After a stroke, under the right conditions, neurons grow new branches to make new connections. To do that, the cell has to lay down a structure for the new branch to grow through. It uses a protein called tubulin, small oval molecules that link together into a tube, the way Lego pieces connect to form a ring. Mercury interrupts that linkage. Dr. Hedaya points to footage from the University of Calgary, filmed in 1999, showing the process under a microscope: the growing nerve branch shrivels and retracts within seconds of mercury exposure. It runs about two and a half minutes and is worth watching, because seeing it is more persuasive than reading about it. Where does mercury come from? Two main sources. Dental amalgam fillings, the dark grey ones, were largely phased out from roughly the 1970s onward, which means people now in their fifties and sixties are the most likely to still have them. And fish. Mercury accumulates up the food chain, so large predatory fish such as tuna and swordfish carry substantially more than small fish. Sardines, anchovies, herring, and mackerel carry very little, and bring DHA and B12 with them, the raw materials neurons need. Testing involves a baseline urine sample, then a challenge dose of DMSA (a sulfur-containing compound), then a second sample. A jump between the two indicates mercury was being stored and is now being pulled out. If you have amalgam fillings removed, Dr. Hedaya is emphatic that it should be done by a biological dentist who follows a protocol: preparation with sulfur-containing compounds beforehand, a dam in place during the procedure, and rinsing afterward. Removal done badly can expose you to more mercury than leaving it alone. Mold: the ceiling Dr. Hedaya says he has never seen broken This is his strongest claim, and he states it without hedging: he has not seen anyone fully recover from a neurological problem while living in a mold-exposed environment. His estimate of the ceiling is around fifty percent improvement. There are two separate things at work. The spores the visible organism. And the mycotoxins, which are molecular, airborne, invisible, and travel far beyond the patch you can see. They inhibit mitochondria, which is how cells produce energy, and they increase oxidation, which is hard on neurons. You cannot rule mold out by smell or by looking. Dr. Hedaya has every patient run an ERMI test Environmental Relative Mold Index. You mark ten areas in the home that don’t get cleaned, wipe them down, leave them for a month, then collect dust with a supplied cloth and send it to a lab. He uses Mycometrics. The second test asks a different question: is your immune system actually reacting? A lab such as MyMycoLab measures IgE (an immediate response, within minutes to hours) and IgG (a delayed response that can begin a day or two later and persist for weeks). You then compare which molds are in your home against which ones your immune system is responding to: Aspergillus, Cladosporium, Chaetomium, Stachybotrys, and others. In Dr. Hedaya’s experience, the two lists usually overlap. Remediation is where it becomes expensive and inconvenient. Cleaning the visible growth achieves little on its own. You have to find the water: poor grading, a roof leak, blocked downspouts, a badly installed HVAC system, damp ductwork, because if the water source remains, so does the mold. As Bill put it in the conversation: there is no point putting a year of work into a rehabilitation program and then walking out of it into a moldy house. The cost of remediation is real. So is the cost of never getting past fifty percent. Lyme disease: the great imitator Lyme is a close relative of syphilis, which was historically called the great imitator because it could present as almost any disease. Lyme behaves the same way, and a single tick can carry around twenty pathogens that affect humans, including Bartonella and Babesia, both of which drain cellular energy. Dr. Hedaya’s issue is with the testing. It relies on antibodies, and antibodies take weeks to develop, so testing soon after a bite returns a negative that means nothing. The result is also reported as a binary against an optical density threshold: above the cutoff you have it, below it you don’t. His comparison: a blood glucose of 120 is not diabetes; 121 is. The line does not reflect biology. He also rejects the common reassurance that a tick embedded for under 24 hours is safe. His word for it was “insanity.” Where to start Asked which of the three to address first, his answer was immediate: mold. Mercury needs no test to begin acting on; switch to smaller fish, eat more cruciferous vegetables, garlic, cilantro, and greens, and you are doing something useful whether or not you had a problem. Test in six to twelve months if you want to know. Lyme comes last, unless you have had a recent tick bite. And mold has to be dealt with before Lyme treatment is worth attempting. How to raise this with your doctor Dr. Hedaya’s advice here is practical, and it applies well beyond this topic. Don’t arrive with a theory. Arrive with a literature review. He suggests using SciSpace over PubMed; ask it for a literature review on the effects of mold on the human nervous system, and it will assemble one in fifteen or twenty minutes. Print it, along with a couple of the underlying papers. Then add the step most people skip: ask it for the counter-argument. Ask why mold might not be a factor in brain function. You are not there to win. You are there to have a real conversation, and a doctor is far more likely to engage with someone who has already tested their own position. If they refuse outright to order the testing? His view was blunt: find another doctor. Getting out of your own way None of this replaces rehabilitation. It removes the obstacles to it. That distinction matters, because the work you are already doing is not wasted; it may simply be running into something invisible. Checking your fillings takes a minute and someone willing to look in your mouth. Testing your house takes a month and a cloth. Neither is a treatment. Both are ways of making sure the treatment can do its job. This is the third conversation with Dr. Hedaya on this show. The first covered photobiomodulation and laser therapy (https://recoveryafterstroke.com/photobiomodulation-stroke-recovery/). The second covered hormones, thyroid function, and fatigue (https://recoveryafterstroke.com/hormones-and-stroke-recovery-dr-robert-hedaya/). Both are useful companions to this one. If you want a fuller framework for thinking about 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. You can find it at https://recoveryafterstroke.com/book. And if this show has helped you, you can support it financially at https://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. Related links: Dr. Hedaya’s practice First conversation, photobiomodulation Second conversation, hormones The mercury video, University of Calgary Background on that video ERMI mold testing lab Mould antibody blood testing Tick-borne and Lyme testing Literature reviews in minutes Research database The toxins textbook he mentions The post The Things Getting In The Way Of Your Recovery – Dr. Robert Hedaya appeared first on Recovery After Stroke.

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A Community And Podcast For Stroke Survivors And Carers

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    Recovery After Stroke
  • Years Active
    2019 - 2026
  • Episodes
    297
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    Recovery After Stroke

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