Recovery After Stroke

Recovery After Stroke

A Community And Podcast For Stroke Survivors And Carers

  1. 2D AGO

    GABA, Sleep, and Brain Health – Neurological Recovery

    Does GABA Actually Help With Sleep? What the Research Says for Brain Injury Recovery Someone in our community recently asked me about GABA for sleep. They’d seen it recommended online, understood that sleep was critical for their recovery, and wanted to know whether the supplement was worth exploring or just noise. It’s a genuinely good question. And it deserves a proper answer. In this post, I’m going to walk you through what GABA is, what the clinical research actually shows about its effect on sleep, why the blood-brain barrier debate matters (and why it might not derail the whole argument), and what the evidence says about the relationship between sleep and brain recovery. By the end, you’ll have enough to have an informed conversation with your medical team. I’m not a doctor. I’m a three-time haemorrhagic stroke survivor who has spent years researching the science of brain recovery and interviewing hundreds of clinicians and survivors on the Recovery After Stroke podcast. What I offer is a careful read of the evidence, not a clinical prescription. What Is GABA and Why Does It Matter for Sleep? GABA (gamma-aminobutyric acid) is the brain’s primary inhibitory neurotransmitter. If your nervous system were a car, GABA is the brake pedal. It reduces neuronal excitability, quiets cortical arousal, suppresses the brain’s primary arousal centre (the locus coeruleus), and modulates the HPA axis, the stress-response system that drives cortisol. Most sedative medications work by amplifying GABA activity. Benzodiazepines, for instance, bind to GABA-A receptors to increase chloride channel opening, producing their calming effect. GABA isn’t doing something unusual here – it’s doing something fundamental. The question with supplemental oral GABA is more specific: Does taking GABA as a capsule or powder actually produce meaningful neurological effects? What Does the Research Show? Finding 1 — Oral GABA Reduces Sleep Latency (and EEG Can Measure It) A 2015 clinical trial published in the Journal of Nutritional Science and Vitaminology by Yamatsu and colleagues used EEG measurement, actual brainwave monitoring, rather than self-reported sleep questionnaires. One hundred milligrams of oral GABA shortened sleep latency (time to fall asleep) by 5.3 minutes compared to placebo. That might sound modest. But for someone lying awake for 30–40 minutes each night, it’s a meaningful shift. Crucially, this was objective neurophysiological data, not a survey response. (PMID: 26052150) Finding 2 — A 90-Day RCT Showed Improved Sleep Efficiency and Mood A 2024 randomised double-blind placebo-controlled trial published in the Journal of Dietary Supplements (Guimarães et al.) gave 200 mg of GABA daily for 90 days to sedentary overweight women also undergoing an exercise program. The GABA group showed significantly improved Pittsburgh Sleep Quality Index (PSQI) scores, significantly reduced depression scores, and improved heart rate variability, a marker of parasympathetic nervous system activity. The HRV finding is particularly interesting. It suggests GABA may be doing something broader than simply reducing sleep latency – it appears to support the overall physiological state that makes rest restorative. (PMID: 38321713) Finding 3 — But a High-Dose RCT Found No Effect Here’s where intellectual honesty matters. A 2023 Dutch RCT (de Bie et al.) published in the American Journal of Clinical Nutrition gave participants 500 mg of GABA three times daily, 1,500 mg/day total, and found no significant effect on self-reported sleep quality. Fasting plasma GABA wasn’t significantly elevated either, raising real bioavailability questions at that dose. This isn’t a reason to dismiss GABA entirely. It is a reason to pay attention to the dose. The evidence base supports 100–300 mg, not 1,500 mg. Higher is not better, and the non-linear dose response is clinically important. (PMID: 37495019) The Blood-Brain Barrier Debate — and Why the Gut May Be the Point The most common objection to oral GABA supplementation is this: GABA is a zwitterion at physiological pH, meaning it has low lipophilicity and poor predicted ability to cross the blood-brain barrier via passive diffusion. So if it can’t get into the brain directly, how does it produce neurological effects? The emerging explanation involves the gut-brain axis. The enteric nervous system, your gut’s own neural network, has GABA receptors. When oral GABA activates these enteric receptors, it can signal the brain via vagal afferents without needing to cross the BBB at all. Think of it as a side door rather than the front entrance. Supporting this: a 2024 RCT (Li et al.) found that a probiotic strain engineered to increase gut GABA production significantly improved objective sleep duration as measured by wearable devices, alongside reduced cortisol and suppressed HPA axis activity. The mechanism wasn’t direct CNS access – it was gut-brain signalling. (PMID: 39385735) The BBB debate doesn’t negate the clinical effect. It changes how we understand the mechanism. Why Sleep Is Not Optional in Brain Recovery This is the part that I think gets underweighted in recovery conversations — and the research is unambiguous. A 2026 large retrospective cohort study (Muhtar et al., Sleep Medicine) matched over 35,000 stroke patients and found that post-stroke insomnia was associated with a 29% higher risk of post-stroke cognitive impairment and a 30% higher risk of all-cause dementia. The association with Alzheimer’s disease was also significant. (PMID: 41924789) A 2024 observational study from Monash University and Alfred Health (Smith et al.) found that in stroke rehabilitation patients, poor sleep quality was significantly associated with higher fatigue severity and lower salivary BDNF gene expression. BDNF (brain-derived neurotrophic factor) is one of the primary molecular drivers of neuroplasticity. Less BDNF means a less receptive environment for the neurological rewiring that rehab is trying to build. (PMID: 38802847) And then there’s the glymphatic system: the brain’s waste-clearance mechanism that is most active during deep sleep. Poor sleep means reduced clearance of metabolic byproducts, including proteins associated with neurodegeneration. This is not a theoretical risk. It is an active, ongoing process. Sleep is not passive recovery. It is one of the primary mechanisms of recovery. What to Do With This Information Here are three practical steps if you’re exploring GABA for sleep: 1. Measure your sleep baseline first. Use the Pittsburgh Sleep Quality Index (freely available online) before you make any changes. Understanding whether you’re struggling with latency, duration, or quality will determine what you actually need to address. 2. If you trial GABA, choose the right form and dose. Look for PharmaGABA — naturally fermented GABA, derived from Lactobacillus hilgardii, which has the strongest clinical evidence base. A dose of 100–300 mg taken 30–60 minutes before bed is consistent with the positive studies. Avoid very high doses; the null result at 1,500 mg/day is important context. Important drug interaction note: If you are taking benzodiazepines, anticonvulsants (gabapentin, pregabalin, valproate), or any other GABAergic medication, discuss GABA supplementation with your prescriber before adding it. The additive sedative effect is a real risk. The same applies if you drink alcohol regularly. 3. Don’t skip the foundation. Sleep hygiene interventions, consistent sleep and wake times, a dark and cool room, and no screens in the 60 minutes before bed, are consistently among the highest-leverage sleep interventions in the literature. GABA may provide a genuine incremental benefit. But it cannot compensate for a fundamentally disrupted sleep environment. The Bottom Line The evidence for GABA and sleep is more substantive than I expected when I started researching it. The EEG data is real. The 90-day RCT showed meaningful clinical outcomes. The gut-brain axis mechanism is biologically plausible and now has direct RCT support. And the consequences of poor sleep in neurological recovery are not trivial – they are quantifiable, significant, and, to a degree, addressable. GABA is not a guaranteed fix. Individual responses vary. The research is not yet definitive at the level of large multi-centre trials in neurological populations. But as one tool in a comprehensive approach to sleep quality alongside good sleep hygiene, appropriate medical support, and consistent rehabilitation, the case for cautious exploration is reasonable. The next step is a conversation with your neurologist, GP, or rehab physician. Take the research with you if it’s useful. Research References All studies cited in this post are retrievable via PubMed: Yamatsu et al. — GABA sleep latency EEG clinical trial (2015) — PMID: 26052150 Guimarães et al. — GABA 200mg RCT, sleep efficiency + mood (2024) — PMID: 38321713 de Bie et al. — GABA high-dose RCT, null sleep result (2023) — PMID: 37495019 Li et al. — Gut-brain GABA axis and sleep RCT (2024) — PMID: 39385735 Muhtar et al. — Post-stroke insomnia and cognitive decline cohort (2026) — PMID: 41924789 Smith et al. — Sleep, BDNF, and fatigue in stroke rehabilitation (2024) — PMID: 38802847 This post is for educational purposes only and does not constitute medical advice. Always consult a qualified healthcare professional before making changes to your supplementation or treatment plan. If you or someone you care about is recovering from a stroke, brain injury, or any neurological condition, the Recovery After Stroke podcast and this blog exist for you. Subscribe on YouTube @BillGasiamis, or visit Recovery After Stroke to find episodes, resources, and community. The post GABA, Sleep, and Brain Health – Neurological Recovery appeared first on Rec

    10 min
  2. 3D AGO

    The Laser That Restarts Brains – Dr. Robert Hedaya on Photobiomodulation, QEEG, and Whole Psychiatry After Stroke

    Photobiomodulation Stroke Recovery: How Laser Therapy Is Restarting Damaged Brains After Stroke For seven years, a woman lived unable to remember faces. She had developed prosopagnosia, a condition that turned every person she met into a stranger, no matter how many times they had been introduced. She kept notes. She took photographs. She built systems to compensate for what her brain could no longer do on its own. Then she sat down for a single laser therapy session with Dr. Robert Hedaya. One session later, the problem was gone. “I can remember the face of the person I worked with this morning and his wife and the dimple on his face,” she told him, describing something she hadn’t been able to do in nearly a decade. What Dr. Hedaya witnessed that day and what he now works to replicate for stroke survivors, people living with aphasia, early dementia, and Parkinson’s, is the result of a therapy called photobiomodulation. And the principle behind it may fundamentally change how you understand your own recovery ceiling. Your Neurons May Not Be Dead. They May Just Be Stuck When a stroke occurs, conventional medicine draws a clear line. Tissue that is destroyed is gone. Deficits that persist beyond the early recovery window are considered permanent. Survivors are told, sometimes gently, sometimes bluntly, that they have plateaued. Dr. Hedaya challenges that directly. In his clinical experience, there is often a population of neurons that survived the stroke intact but are no longer functioning. They are alive. Their cellular architecture is preserved. But they have lost their energy supply, specifically, the ability to produce ATP, the molecule that powers every cellular process in the body. Without energy, these neurons go quiet. They stop firing. From the outside, this looks like permanent damage. But it isn’t. It is dormancy. This mirrors the concept of the chronic penumbra explored in hyperbaric oxygen therapy research, where viable tissue sits in a suspended state, waiting for conditions to change. Dr. Hedaya’s approach is different in method but identical in premise: the brain has not finished recovering. It is waiting for the right signal. Photobiomodulation provides that signal. What Photobiomodulation Actually Does “After the first laser treatment, the problem was gone. Gone. She told me — I can remember the face of the person I worked with this morning.” — Dr. Robert Hedaya Photobiomodulation, also called transcranial laser therapy, delivers precise wavelengths of near-infrared light to targeted areas of the scalp. The photons penetrate through the skull, meninges, and tissue to reach dormant neurons, where they act on the fourth complex of the mitochondrial electron transport chain, the site where nitric oxide accumulates and blocks ATP production. The photons dislodge that nitric oxide. The mitochondria resume normal energy output. The neuron now has what it needs to resume its function. The downstream effects are significant: new synapses form through a process called synaptogenesis, brain-derived neurotrophic factor (BDNF) is produced, inflammation decreases, and misfolded proteins associated with cognitive decline begin to clear. Given energy, the brain begins repairing itself, not because the laser forces it to, but because the cells already know what to do. They were just waiting for the fuel. How QEEG Makes It Precise Not every stroke survivor responds to the same laser parameters or needs treatment in the same regions. This is where Dr. Hedaya’s approach clearly separates from consumer LED helmets or generic light therapy devices. Before any laser is applied, he conducts a quantitative EEG, a brain mapping process that measures electrical activity at 19 points across the scalp. Unlike a standard EEG, which relies on a clinician reading scrolling waveforms visually, QEEG uses AI to analyse thousands of data points and reverse-engineer the source. The result is a functional map: which networks are underperforming, which are overactive, and where pathways between regions have broken down. This is paired with a neuroquant MRI that measures 30 to 40 distinct brain structures volumetrically. Together, they function as a GPS triangulating exactly where the laser should be directed, at what wavelength, power, pulse frequency, and joule delivery for each individual patient. These parameters are adjusted as the patient responds, session by session. This level of precision is what distinguishes clinical photobiomodulation from anything available over the counter. A half-watt LED helmet delivering diffuse light through hair and scalp is not the same intervention. Depression After Stroke – And the Whole-Body Connection Roughly 30% of stroke survivors experience depression in the aftermath. This is not simply an emotional response to a difficult event – it is a physiological outcome with identifiable drivers that conventional psychiatry often does not investigate. Dr. Hedaya’s model, which he calls whole psychiatry, treats post-stroke depression as a downstream expression of broader disruption: hypothyroidism, hormonal imbalance, B12 deficiency, elevated mercury from dietary sources, gut dysbiosis, chronic inflammation, and unresolved neurological stress all play measurable roles. In one of his current stroke cases, treating low thyroid function triggered seizure sensitivity because post-stroke tissue is more vulnerable to excitatory input. That kind of complexity is precisely why a comprehensive functional evaluation must precede treatment. For survivors too depleted to engage with lifestyle changes, Dr. Hedaya will now often begin with laser therapy directly. Once cellular energy is restored, the motivation and capacity to make further changes typically follow. The jump-start, he has found, enables everything else. Is Recovery Still Possible After a Plateau? If you have been told you have reached your ceiling, the core message of this episode is worth sitting with: the plateau is often not a biological fact. It is frequently the consequence of underlying conditions that haven’t been identified, and dormant tissue that hasn’t been activated. “The brain is incredibly plastic,” Dr. Hedaya says. “When you challenge it and give it everything it needs, nutrients, light, hormones, and remove the toxins, great things can happen. There is hope. There is so much hope.” His practice, the Whole Psychiatry and Brain Recovery Center, offers initial consultations via Zoom for those who cannot travel to New Jersey. For survivors with a local physician willing to collaborate, educational consultation is also available. Reach Dr. Hedaya at wholepsychiatry.com. If this episode opened something up for you, Bill’s book – The Unexpected Way That A Stroke Became The Best Thing That Happened follows the full arc of what recovery can become when you stop accepting the ceiling and start questioning it. Find it at recoveryafterstroke.com/book. If the Recovery After Stroke podcast has supported your journey, you can support the show at patreon.com/recoveryafterstroke. This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan. The Laser That Restarts Brains – Dr. Robert Hedaya on Photobiomodulation, QEEG, and Whole Psychiatry After Stroke A laser pointed at the right spot in your brain can restart neurons that stopped working. Dr. Robert Hedaya explains how and who it can help. Hyperbaric Oxygen Therapy – Dr. Amir Hadanny Highlights: 00:00 Introduction – Photobiomodulation Stroke Recovery 01:09 Dr. Hedaya’s Medical Journey 07:55 Transition to Functional Medicine 10:31 Photobiomodulation Stroke Recovery Applications 19:21 Understanding Laser Mechanisms 24:36 Jumpstarting Healing with Laser Therapy 29:48 Understanding EEG vs. QEEG 34:10 Addressing Depression Post-Stroke 39:38 Holistic Approaches to Recovery 46:20 Patient-Centered Care and Follow-Up 51:38 The Role of Spirituality in Healing Transcript: Introduction – Photobiomodulation Stroke Recovery Dr Bob Hedaya (00:00) After the first laser treatment, the problem was gone. Gone. She told me, she said, my God, I can remember the face of the person I worked with this morning and his wife and the dimple on the face. And I said, what are you talking about? She says, have prosopagnosia. I said, says, can’t remember faces. I have to write down everything that I do and take pictures of everything and every person. I said, my God, it’s gone, gone. that’s when I went home that night and I was like, this doesn’t make any sense. How could this be? There’s nothing about a neurological condition being turned around in one minute. It makes no sense. Dr. Hedaya’s Medical Journey Bill Gasiamis (00:41) Welcome everyone to the Recovery After Stroke podcast. I’m Bill Gasiamis and my guest today is Dr. Robert Hedaya, a board-certified psychiatrist, functional medicine practitioner, and the founder of the Hull Psychiatry and Brain Recovery Center in New Jersey. Dr. Hedaya trained at Georgetown and the National Institute of Mental Health. And over the course of his career, he moved from conventional psychopharmacology into functional medicine after discovering of what was driving his patient’s symptoms had nothing to do with their medications and everything to do with their biology. In more recent years, Dr. Hedaya has added a tool that very few practitioners anywhere in the world are using, QEEG, guided transcranial photobiomodulation. That’s laser therapy, precisely using a functional brain map to reactivate neurons that survived the stroke but stopped working. In this conversation, we get into the science behind photobiomodulation and what it actually does inside the cell. How QEEG brain mapping removes the guesswork from treatment, why post-stroke depression is so ofte

    1h 8m
  3. MAY 4

    EECP Therapy and Stroke Recovery: Can a Cardiac Treatment Help Grow New Blood Vessels?

    EECP Therapy and Stroke Recovery: Can a Cardiac Treatment Help Grow New Blood Vessels? When I first heard about EECP therapy in the context of stroke recovery, I was skeptical. It’s a cardiac device approved in Australia for stable angina and congestive heart failure. Stroke is not on the label. So why are we talking about it on a stroke recovery podcast? Because the mechanism is fascinating. And the research, while still emerging, is pointing somewhere worth paying attention to. In this episode, I sat down with Jack Clifford, a heart disease patient who discovered EECP therapy and began exploring its potential beyond its approved indications. What started as a cardiac conversation quickly became one of the most scientifically interesting discussions I’ve had on the show. What Is EECP Therapy? EECP stands for Enhanced External Counterpulsation. The treatment involves a set of pneumatic cuffs fitted around the calves, thighs, and buttocks. These cuffs inflate and deflate in precise synchrony with the heartbeat, inflating during the heart’s resting phase (diastole) to push blood back toward the heart, and deflating just before the heart contracts. The result is an increase in blood flow and a specific type of fluid shear stress on blood vessel walls. It’s that shear stress that makes things interesting. The Biology: Arteriogenesis and Angiogenesis To understand why EECP therapy might be relevant to stroke survivors, you need to understand two terms: angiogenesis and arteriogenesis. Angiogenesis is the sprouting of entirely new capillary vessels — the body builds small blood channels where none existed before. Arteriogenesis is different: it’s the remodelling of pre-existing, dormant collateral vessels into functional bypass channels. Think of it like upgrading a dirt track into a highway. The track was always there; the body just wasn’t using it. When blood flow is obstructed, whether by a blocked coronary artery or a stroke, the body can, under the right conditions, activate these collateral pathways. The shear stress produced by EECP therapy appears to be one of the triggers that stimulate arteriogenesis. By generating repeated waves of increased blood flow, the treatment creates the mechanical signal that tells blood vessel walls to grow and remodel. This is why cardiac researchers originally developed EECP for heart patients. But it raises a legitimate scientific question: could the same mechanism support blood flow recovery in the brain after stroke? What Does the Research Say? A 2026 meta-analysis published in the QJM: An International Journal of Medicine examined 15 randomized controlled trials involving 506 participants, looking specifically at EECP’s effects on functional outcomes in stroke patients. The results showed statistically significant improvements, with EECP outperforming control conditions on standard functional recovery measures. This is preliminary evidence, not a settled clinical consensus. The studies are relatively small, the methodology varies across trials, and EECP remains off-label for stroke in Australia. But for a therapy with a well-understood safety profile and an existing approval framework, 15 studies and 506 participants is not nothing. It’s enough to warrant serious discussion. What I Discussed with Jack Clifford Jack came to EECP as a patient, not a researcher. His experience with heart disease led him to explore the therapy, and he’s spent considerable time understanding the evidence base and connecting with practitioners. He’s not a clinician, and neither am I, but what we can do together is examine what the research actually says, what the mechanism actually is, and what questions remain unanswered. In our conversation, we discussed: How Jack first encountered EECP therapy and what led him to investigate it further The difference between approved and off-label use, and why that distinction matters What the shear stress mechanism actually looks like in practice The existing network of EECP practitioners and how stroke survivors might access the therapy The questions both of us still have about where the research needs to go Important Disclaimers   EECP therapy is approved in Australia by the TGA for stable angina pectoris and congestive heart failure (ARTG Entry 376470). Stroke is NOT an approved indication. This article and podcast episode are not medical advice. Speak with your treating physician before pursuing any treatment. This episode is not medical advice. It is a conversation about an area of emerging research that I find scientifically credible and worth understanding. The goal is to help you ask better questions, not to tell you what treatment to pursue. Where to Learn More ecplocator.com a directory of EECP therapy providers eecpbook.com is a dedicated resource on the treatment and its evidence base recoveryafterstroke.com for stroke survivors looking for a broader community Research cited: Zhao et al. (2026). Enhanced external counterpulsation for ischaemic stroke: a systematic review and meta-analysis. QJM: An International Journal of Medicine. DOI: 10.1093/qjmed/hcag010. Therapy and Stroke Recovery: Can a Cardiac Treatment Help Grow New Blood Vessels? Bill Gasiamis sits down with Jack Clifford to explore EECP therapy, a TGA-approved cardiac treatment that may stimulate the growth of new blood vessels. Together, they examine the emerging research on angiogenesis, arteriogenesis, and whether this off-label approach holds promise for stroke survivors seeking to improve blood flow to the brain. Highlights: 00:00 Introduction – EECP Therapy 06:06 Recognizing Health Issues and Seeking Help 09:50 Hospital Experience and Heart Health 12:12 Decisions Against Medical Advice 16:28 Exploring Alternative Treatments 18:06 Understanding Enhanced External Counter Pulsation (EECP) 21:58 The Mechanism of EECP 27:03 Personal Transformation Through EECP 30:29 Lifestyle Changes and Holistic Health 34:35 The Impact of Stress on Health 38:30 The Journey of Writing a Book 43:29 The Role of EECP in Heart Health 48:21 Raising Awareness for EECP Therapy 56:05 Exploring the Future of EECP Therapy Transcript: Introduction – EECP Therapy Jack Clifford (00:00) Mine was really severe. 100 % blocked in my widow maker, the left anterior descending. I’m 95 in my left coronary artery and in my right main, I am 80%. And I’m still that way today, but I can run a sub seven mile. Bill Gasiamis (00:16) Welcome to the Recovery After Stroke podcast. I am your host, Bill Gassiamus. Before we get into today’s interview, I need to share something important. The topic we’re exploring today involves a medical device called an EACP, Enhanced External Counterpulsation Machine. In Australia, EACP is registered with the Therapeutic Goods Administration for the treatment of stable angina and congestive heart failure. It is not approved for stroke. What we are discussing today is emerging off-label research, not a treatment recommendation. Everything in this episode is for informational purposes only. This is not medical advice. Please speak with your treating physician before pursuing any treatment, therapy or intervention discussed here. With that said, let’s talk about something that genuinely fascinated me when I started reading the research. Your body has the capacity to grow new blood vessels, not just small capillaries, but to remodel dormant pre-existing channels into functional bypass routes. Scientists call this arteriogenesis. There’s also angiogenesis, the sprouting of entirely new Both processes matter deeply for stroke because stroke is fundamentally a blood flow problem. Now here’s where it gets interesting. A cardiac therapy developed for heart patients, not stroke patients, trigger exactly this kind of vascular remodeling. And in 2026, a meta-analysis published in the QJM across 15 randomized controlled trials and 506 participants found that EECP produced statistically significant improvements in functional outcomes for ischemic stroke patients. Now, that’s not proof. That’s not a green light to go and get an EECP, but it is worth a serious conversation. My guest today is Jack Clifford. Jack is a heart disease patient who discovered EECP therapy while managing his own cardiac condition and who has since spent considerable time investigating its potential. beyond cardiac care. I should tell you, I was skeptical going into this conversation, but I’ve learned that skepticism without curiosity isn’t really skepticism. It’s just closed mindedness. So I read the research and then I sat down with Jack. So if you find this episode valuable, I’d love for you to grab a copy of my book, The unexpected way that a stroke became the best thing that happened at recoveryafterstroke.com/book. And if you want to support the show, you can join Patreon at patreon.com/recoveryafterstroke. And I want to thank everyone who is supporting me on Patreon, especially the people that have been around for a long time and the people who have just recently signed up. I very much appreciate it. And now here’s my conversation with Jack Clifford. Bill Gasiamis (03:19) Welcome to the podcast. Jack Clifford (03:22) Thanks, Bill. Great to be here. Bill Gasiamis (03:24) Let’s give the listeners a bit of a background understanding of why you’re on the podcast. You’re not a stroke survivor, but we have something in common as ⁓ somebody who has been unwell before myself and you in the past. Tell me a little bit about your journey to the podcast So we just kind of give people an understanding as to how it is that somebody who’s not a stroke survivor. Jack Clifford (03:34) We do. Bill Gasiamis (03:51) how we ended up chatting together? Jack Clifford (03:54) Yeah, absolutely. So the quick version here is ⁓ I was on the brink five years ago of having ⁓ unsentable emergency triple bypass surgery. And ⁓ I chose a different

    1h 9m
  4. MAY 1

    Near-Infrared Light Therapy After Stroke: Does the Science Hold Up?

    Near-Infrared Light Therapy After Stroke: Does the Science Hold Up? A viewer reached out recently with a question I have been getting more frequently: Does near infrared light therapy actually help the brain recover after stroke? It is a fair question — the claims circulating online range from cautiously promising to outright extraordinary. In this post, I am going to cut through the noise and look at what the peer-reviewed research actually shows. What is Near-Infrared Light Therapy? Near infrared (NIR) light therapy — also called photobiomodulation (PBM) or transcranial photobiomodulation (tPBM) when applied to the head — uses specific wavelengths of light (typically 630-1100 nm) to penetrate tissue and interact with cells at a biological level. This is not a tanning lamp or a heat lamp. The mechanism is specific: NIR light at the right wavelengths is absorbed by cytochrome c oxidase, a key enzyme in mitochondrial energy production. When stimulated, cytochrome c oxidase increases ATP synthesis — essentially giving cells more energy to carry out repair and function. For neurons recovering from ischaemic or haemorrhagic stroke, the theory is compelling: damaged brain cells that are energy-starved might benefit from an additional energy stimulus. The Mechanism: What the Biology Says The cytochrome c oxidase pathway is well-established in photobiology. What is less settled is whether light at therapeutic intensities can penetrate the skull deeply enough to reach relevant brain structures. Skull and scalp tissue absorb and scatter light substantially. Transcranial delivery requires sufficient power density (irradiance) at the source and long enough exposure to accumulate meaningful fluence (energy dose) at depth. Studies using ex vivo human skull specimens suggest that only 1-3% of surface irradiance reaches cortical tissue at clinically relevant depths — and deeper subcortical structures receive even less. This does not make tPBM ineffective — it means dosing is everything. And most consumer devices do not disclose their irradiance or fluence specifications, which makes comparing them to clinical trials nearly impossible. What the Research Shows Animal Studies: Encouraging Signals Several well-designed rodent studies have demonstrated that tPBM applied within hours to days of stroke onset reduces infarct volume, improves functional recovery, and modulates neuroinflammation. A 2019 study by Thunshelle et al. found tPBM reduced lesion size in ischaemic stroke models and improved neurobehavioural scores. Animal models are useful for mechanistic insights. However, rodent skulls are thinner and brain structures are more superficial than in humans — so translational accuracy is limited. Human Clinical Trials: More Complicated The human evidence is where the story becomes nuanced. The NeuroThera Effectiveness and Safety Trial (NEST-1 and NEST-2) were the most prominent early RCTs. NEST-1 (2007) reported positive outcomes for acute ischaemic stroke patients treated within 24 hours. However, NEST-2 (2009), a larger double-blind RCT with 660 patients, failed to replicate those results on its primary outcome measure. NEST-3 was halted early in 2013 after an interim analysis showed it was unlikely to meet its primary endpoint. What went wrong? Researchers identified several issues: heterogeneous stroke populations, inconsistent dosing protocols, and the fundamental challenge of transcranial light delivery in adults with varying skull thickness and tissue composition. More recent work has shifted focus. A 2023 review by Zomorrodi et al. examined pulsed tPBM and found preliminary evidence for cognitive and neurological benefits in traumatic brain injury and neurodegeneration — but noted the absence of large, well-powered RCTs in stroke specifically. The Consumer Device Problem Here is where I have to be direct with anyone considering purchasing a NIR device for home use. Clinical studies use medical-grade devices with precisely calibrated irradiance, typically 10-700 mW/cm2 at the source, with controlled exposure times to achieve specific fluence targets (often 0.9-36 J/cm2). Consumer devices vary enormously — and most do not publish their specifications at all. Buying a NIR cap or helmet marketed for brain wellness is not equivalent to receiving the protocol used in clinical research. This does not mean it is harmful. It means we do not know whether you are getting a therapeutic dose, a sub-therapeutic dose, or anything in between. The Stakes If you are in recovery from a stroke or brain injury and you are exploring every option — which I completely understand — the risk here is not primarily financial. The risk is investing hope, time, and energy into something that may or may not be delivering what clinical trials suggest is therapeutic. The opportunity, on the other hand, is real: the underlying biology is sound, and the research pipeline is active. This is an area worth watching closely. Three Actionable Steps Talk to your neurologist or rehab physician before purchasing any device. Ask specifically whether tPBM has been considered in your care plan and what the current clinical guidance is. If you want to explore the evidence yourself, search PubMed (pubmed.ncbi.nlm.nih.gov) for transcranial photobiomodulation stroke — filter for systematic reviews and RCTs published after 2018 for the most current picture. Check ClinicalTrials.gov (clinicaltrials.gov) for active trials recruiting stroke survivors for tPBM studies. Participation in a trial gives you access to a properly calibrated protocol and contributes to the evidence base. What Recovery Can Look Like When the brain is given the right conditions — adequate sleep, nutrition, rehabilitation, reduced inflammation, and potentially adjunct therapies that the evidence supports — healing happens in ways that can surprise both patients and clinicians. I have spoken with hundreds of stroke survivors on this channel who found approaches that contributed meaningfully to their recovery. Not a single one found a shortcut. But many found tools — used thoughtfully, in partnership with their medical team — that made a genuine difference. That is what this channel is about: doing the work so you can make informed decisions. References Lampl Y et al. Infrared laser therapy for ischemic stroke: a new treatment strategy. Stroke. 2007;38(6):1843-9. PMID: 17463313. pubmed.ncbi.nlm.nih.gov/17463313 Zivin JA et al. Effectiveness and Safety of Transcranial Laser Therapy for Acute Ischemic Stroke (NEST-2). Stroke. 2009;40(4):1359-64. PMID: 19233936. pubmed.ncbi.nlm.nih.gov/19233936 Thunshelle C, Hamblin MR. Transcranial Low-Level Laser (Light) Therapy for Brain Injury. Photomed Laser Surg. 2016;34(12):587-598. PMID: 27854434. pubmed.ncbi.nlm.nih.gov/27854434 Zomorrodi R et al. Pulsed Near Infrared Transcranial and Intranasal Photobiomodulation Significantly Modulates Neural Oscillations. Sci Rep. 2019;9(1):6309. PMID: 31004089. pubmed.ncbi.nlm.nih.gov/31004089 Bill Gasiamis is a stroke survivor and the host of the Recovery After Stroke podcast. He is not a medical professional. Nothing in this post constitutes medical advice. Always consult your treating physician before starting any new therapy. The post Near-Infrared Light Therapy After Stroke: Does the Science Hold Up? appeared first on Recovery After Stroke.

    7 min
  5. APR 27

    AVM Burst in the Brain: A Recovery Story of Patience, Aphasia, and Finding Your Way Back

    AVM Burst in the Brain: A Recovery Story of Patience, Aphasia, and Finding Your Way Back Jennifer Tomscha was 39, driving her three-and-a-half-year-old daughter home from preschool, when an AVM burst in her brain. She felt a wash of dizziness first. Then her vision started collapsing on the right side. She pulled onto a narrow verge on the highway between Greytown and Carterton in New Zealand, tried to reach her husband, got no answer, and dialled 111 instead. When the dispatcher asked what was wrong, she said something she still can’t fully explain: “I think I’m having a stroke.” She didn’t know yet that she had two arteriovenous malformations in her left frontal lobe — one discrete, one diffuse. She didn’t know that within hours she’d be helicoptered to Wellington Hospital for an emergency craniotomy, or that the following Monday a neurosurgeon named Dr. Woon would spend thirty hours trying to remove both malformations from her brain. She just knew something was wrong, and that her daughter was in the back seat, and that she couldn’t keep driving. That moment — pulling over, self-diagnosing, refusing the urge to simply lie down and rest — may be the reason she’s alive. What happens when an AVM bursts in the brain An arteriovenous malformation is a tangle of abnormal blood vessels that connects arteries directly to veins, bypassing the capillary network that normally regulates blood flow. Most people with an AVM never know they have one. But when an AVM bursts in the brain, blood floods into surrounding tissue at high pressure, and the consequences are almost always severe: haemorrhagic stroke, seizures, sudden neurological deficits, and in many cases, death. Jennifer’s first surgery controlled the bleeding. The second, five days later, was supposed to remove both malformations. It didn’t go as planned. The surgical team discovered that blood flow to the first AVM was feeding the second one, causing the brain around it to swell. Dr. Woon had to make an impossible decision in the middle of the operation: let her die, or remove a portion of healthy brain tissue along with the malformation. He chose to keep her alive. The surgery took thirty hours. When it was finally over, he called her husband and said, “Well, you’ll be lucky if she talks.” The six weeks she can’t remember Jennifer has no memories of the first six weeks after her AVM burst. She was in a medically induced coma for the surgery, then in intensive care, then transferred to rehabilitation. Everything she knows about that period has been told to her by other people. When her memory started returning, she found herself in a rehabilitation ward in Masterton, using adult nappies, unable to sit up in bed. The front of her skull had been removed and wouldn’t be replaced for months. She wore a protective helmet whenever she walked. And yet — she insists — she felt fine. [Quote block — mid-article] “I kept saying, ‘I’m okay, I’m fine. You guys should just take it easy around me.’ But of course, I wasn’t really fine.” — Jennifer Tomscha The honest recognition of what had happened to her didn’t come for almost two years. It took that long for her brain to have enough capacity to think about her brain. The myth of the one-year recovery window Most stroke survivors are told, either directly or by implication, that the first year matters most. That after twelve months, improvements slow. That after two years, you’ve plateaued. Jennifer’s experience — and the experience of nearly every long-term survivor interviewed on this podcast — contradicts that narrative. Four years after her AVM burst, she is still discovering what recovery means. Her academic writing, once her profession as the Director of the Writing Program at NYU Shanghai, doesn’t flow the way it used to. She can’t recall songs from memory anymore, or sing the ones she used to sing. Her aphasia shows up most at night, when she’s tired. She still takes an afternoon nap most days. But she’s also finishing a PhD. She can read as well as she ever could. She’s speaking, articulately, in a podcast interview eighty minutes long. And the parts of recovery she thought had stopped improving are, quietly, still improving. What Jennifer wants other survivors to know Her advice, offered near the end of the conversation, is short and unsparing: “You can rest, and that’s okay. You can be as slow as you want to be, and that’s also okay. But don’t give up. Just keep going — at whatever pace feels right.” It’s a rejection of both the productivity culture that tells survivors to push harder and the clinical culture that tells them to accept their limits. Recovery, for Jennifer, isn’t a race against a deadline. It’s a long, patient process of finding out what comes back and learning to live fully with whatever doesn’t. Bill’s book and community If Jennifer’s story resonates with you, Bill Gasiamis’s book — The Unexpected Way That A Stroke Became The Best Thing That Happened To — explores the same territory: the slow, unexpected, sometimes beautiful work of rebuilding a life after a brain event. Get the book here Readers who want to support the podcast and connect with the community of survivors it serves can do so at Patreon. Support on Patreon 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. Jennifer Tomscha: An AVM Burst in Her Brain at 39, and the Four-Year Climb Back to Herself She self-diagnosed her own stroke while driving with her daughter. Four years on, she’s still discovering what recovery really means. Highlights: 00:00 Introduction and Background 10:00 Reflections on the Experience 18:00 Long-term Effects and Adaptations 26:45 Identity and Self-Perception Post-Stroke 38:48 The Long Game of Recovery 51:07 The Journey of Recovery 01:03:42 The Evolution of the Podcast Transcript: Introduction and Background: AVM Burst in the Brain Jennifer Tomscha (00:00) Dr. Woon was my neurosurgeon. And he just said, I’ll never do another surgery like that ever again. it was really long. And I think he definitely had made me worse. Like they had taken out. too much of my normal brain. when he called my husband after the surgery was over, Dr. Woon said like, well, you’ll be lucky if she talks. he was just so discouraged from how the AVM surgery went. when I finally talked to him on Zoom. was so you And I was like, yeah, yeah, yeah, of course I can. He was like, will you show me? and I walked up and down the room and he was like laughing so hard at my being able to walk. He was like so enthusiastic about it. Bill Gasiamis (00:44) Welcome back everybody. I am Bill Gassiomas and my guest today is Jennifer Tomche. In March, 2022, Jennifer was 39 years old living in New Zealand, finishing the first year of a PhD program when something happened to her brain that changed everything. What followed was a medical emergency unlike anything I’ve heard described on this podcast and a recovery story that quietly dismantles one of the most damaging myths in stroke survivor community. That after a certain point, the window for improvement closes. Jennifer is four years out from what happened to her. She still takes an afternoon nap every day. She still notices the edges of what her brain can and can’t do. And she is also finishing a PhD, raising two children and speaking with a clarity and warmth that will stop you in your tracks. This is a conversation about what it actually means to play the long game and why might be the most important thing any survivor can do. Before we get into it, if this podcast has been part of your recovery journey, I’d love for you to check out my book, The Unexpected Way That a Stroke Became the Best Thing That Happened, at recoveryafterstroke.com/book. And a genuine thank you to everyone supporting this work on Patreon. If you wanted to support the show, you can go to patreon.com/recoveryafterstroke. really helps me keep the conversation going. Let’s get into it. Bill Gasiamis (02:12) Jennifer Tomscha welcome to the podcast. Jennifer Tomscha (02:14) Thank you. I’m glad to be here. Bill Gasiamis (02:17) It’s lovely to have a local with me. Usually all my guests are from the United States or Canada or the United Kingdom. You’re just a hop, skip and a jump away in New Zealand. Jennifer Tomscha (02:20) Yeah. Mm hmm. Yep. Yep. I’m American originally, but we moved here in 2020. So ⁓ we I’m grew up in Iowa. And then and then I after but we were living in Shanghai for us for almost seven years, my husband and I were living in Shanghai and I was teaching at New York University, Shanghai and then when COVID happened in China. Bill Gasiamis (02:35) Where are we from in America? Jennifer Tomscha (02:54) they told us to leave the country because it was where it started. So, and we had two kids, so my husband didn’t want to go back to the United States. And so my sister lives in New Zealand. So we moved here and then we just stayed here. mm-hmm. So, yeah. Bill Gasiamis (03:11) So in China, was it just a request? Was it a directive? What was the situation? Jennifer Tomscha (03:18) From New York University, they said if you weren’t a Chinese national citizen, they strongly urged us to leave because they just didn’t know how they were gonna manage it. everyone, mean, in China, they had had SARS in the early 2000s, so they had already had it. And so right away, everyone had their masks on. They were ready to… go and I was like, I want to get out of here. So we went to New Zealand and they also had a lockdown, but it was just for a month and then everyone could wander around because the virus was not here. we just stayed and I got into this PhD program. So that’s why we’re still in New Zealan

    1h 20m
  6. APR 20

    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
  7. APR 13

    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

    1h 16m
  8. MAR 30

    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

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A Community And Podcast For Stroke Survivors And Carers

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