Recovery After Stroke

Foot Drop Solutions After Stroke Without an AFO: Ken Kerns’ “New Way to Walk” (Plus Aphasia Recovery After a 10-Day Coma) Ken Kerns didn’t just wake up from a stroke. He woke up from a 10-day medically induced coma after an AVM brain hemorrhage, facing a reality that would shake anyone’s identity: right-side paralysis, aphasia, and the exhausting work of rebuilding everyday life from scratch. And then, because stroke recovery loves a twist, one of the nurses kept calling him Frank. That moment might sound funny now, but in the early days of brain injury, it landed like a true identity crisis. Ken would later turn that experience into a book title: Anything But Frank—and into a bigger message that matters for every survivor and caregiver: recovery isn’t one problem to solve. It’s dozens. And you solve them one by one. This episode covers the full story (AVM, coma, aphasia, purpose). But it also includes something many survivors are actively searching for: foot drop solutions after stroke without an AFO—specifically, a practical tool Ken found that helped reduce falls and made walking feel more natural again. The day everything changed: an AVM hemorrhage at home Ken’s stroke happened early in the COVID era, when work had shifted home and hospitals were under intense strain. He was preparing for a meeting when he went to the bathroom and collapsed. His wife, Carrie, couldn’t open the door—he’d fallen behind it. She called emergency services. Ken has no memory of those moments. Like many survivors, he had to rebuild the story from what others told him. What followed was terrifying uncertainty. A neurosurgeon reviewed imaging and initially feared a tumor (Ken had a history of kidney cancer years earlier). Carrie was allowed into the emergency room to say goodbye because it wasn’t clear Ken would survive surgery. But in surgery, the cause became clear: an arteriovenous malformation (AVM). The surgeon removed it, and Ken was placed into a medically induced coma for 10 days. Aphasia: when your brain is fast… and your mouth won’t cooperate When Ken woke, his deficits were immediate and brutal: Paralyzed on the right side Unable to speak Had to relearn swallowing Severe aphasia that improved over time One of the most honest parts of Ken’s story is how confusing aphasia can feel from the inside. Ken described it like this: his cognition is there, answers are forming—yet the “path” to speech is obstructed. “My brain works much faster than my mouth.” “There used to be a direct path… and now that path is worn… covered by weeds.” That metaphor matters because it reframes aphasia as a communication access issue—not a lack of intelligence. Ken found a major turning point through a Minnesota-based communication group: Minnesota Connect Aphasia Now (MNCAN). Practicing weekly conversations (with support from a speech-language pathologist) rebuilt something more than words. It rebuilt confidence. He went from relying on Carrie to order food or check in at airports… to speaking up again in real-world settings. And eventually, he didn’t just participate—he stepped into leadership and became president of the board. If you’re living with aphasia, this is one of the most powerful “hidden wins” in recovery: you don’t have to wait until speech is perfect to start practicing in the world. “Anything But Frank”: identity, emotion, and meaning after stroke In the hospital, a nurse repeatedly called Ken “Frank.” It sounds like a paperwork mistake—but for someone fresh out of coma, it triggered fear and confusion: Did I die? Am I someone else? Who will I FaceTime? When the iPad finally turned around and he saw Carrie, he cried—not from sadness, but relief. Later, Ken’s siblings did what siblings do: they turned the story into a running joke. They called him Frank. Ken’s response became a line that carried him forward: Call me anything but Frank. That phrase became the title of his book and a symbol of what recovery often is: reclaiming identity while your body and brain renegotiate who you are. Ken also spoke candidly about emotional recovery. In rehab, he felt intense anger—then shifted into a daily question that gave him structure: “Guide my day. Show me the purpose.” Whether you share Ken’s faith or not, the takeaway is universal: When recovery feels chaotic, survivors need a meaningful frame to keep going. Foot drop solutions after stroke without an AFO: the “new way to walk” Ken found Foot drop is one of those stroke problems that seems “small” until it isn’t. It can quietly steal independence through trips, falls, and fear—especially on stairs, uneven ground, and (in Ken’s case) Minnesota snow and ice. Ken described classic foot drop challenges: Difficulty lifting the foot Frequent falls Trouble on the stairs Reduced confidence walking He used an ankle-foot orthotic (AFO), which helped. But later, he discovered a product that—for him—became a workable AFO alternative: Cadence shoes. Ken’s experience was specific and practical: The shoe design helped his foot glide during the swing phase Then grip when the weight shifted forward He reported no falls since wearing them He said he no longer needed his AFO He felt stair descent improved because the shoe gripped rather than sliding off the step This is crucial: this isn’t “one weird trick.” It’s a tool that matched Ken’s exact pattern of movement, environment, and needs. If you’re exploring foot drop solutions, here’s the smart way to use Ken’s story: Treat tools as experiments, not guarantees Trial safely (with your physio/OT if possible) Test on the surfaces that actually challenge you (stairs, carpet edges, outdoor paths) Measure results: falls, near-falls, fatigue, confidence, walking speed Ken also used another independence tool: a left-foot accelerator to return to driving while his right ankle remained immobile. That’s a reminder that “walking recovery” isn’t only rehab—it’s also smart adaptation. What to take from Ken’s story (even if your stroke was different) Ken’s recovery wasn’t a straight line. It was many small wins, stacked over time. If you’re in the thick of it, consider this simple plan: Name the real problem (not “I’m broken,” but “I trip when my foot drags.”) Practice communication in community (groups like MNCAN show what’s possible) Choose tools that reduce risk today (falls steal momentum) Rehearse what matters (Ken practiced speeches until they were automatic) Protect your inputs (Ken avoids depressing “poison” media that drains recovery energy) And if you’re a caregiver: the biggest gift is often helping your person keep experimenting—without pressure, without shame, and without rushing the timeline. Keep going with the full episode Ken’s “new way to walk” is a valuable segment—but the whole episode is the real promise: AVM stroke recovery, aphasia progress, identity rebuilding, and the meaning that can emerge after trauma. If you want more stories like this (and practical tools survivors are actually using), you can also check out Bill’s book and support the podcast here: Book: The Unexpected Way That A Stroke Became The Best Thing That Happened 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. Ken Kerns: 10-Day Coma, AVM Stroke Recovery, Aphasia Progress & Walking Confidence Ken woke from a 10-day coma after an AVM stroke, unable to speak or move his right side, then rebuilt his voice and his walking confidence for life. Book – Anything but Frank: A Journey of Healing, Patience, and Rediscovery Archway Publishing Amazon (U.S.) Amazon (Australia Additional Resources: Minnesota Connect Aphasia Now (MnCAN) Cadense Adaptive Shoes The Transcript Will Be Available Soon… The post Ken Kerns: 10-Day Coma, AVM Stroke Recovery, Aphasia Progress & Walking Confidence appeared first on Recovery After Stroke.

PESTO Trial Results: What Stroke Survivors Need to Know About Perispinal Etanercept If you’ve spent any time in stroke recovery communities, you’ve probably seen the same pattern: a treatment gets talked about with real intensity, people share personal stories that pull you in, and suddenly you’re left trying to sort hope from hype from “maybe.” When the decision also involves significant cost, that uncertainty can feel even heavier. That’s exactly why I recorded this episode: to help stroke survivors and their families understand the PESTO trial results in plain language without drama, without attacks, and without jumping to conclusions. In this interview, Professor Vincent Thijs explains what the PESTO trial set out to test, why it was designed the way it was, and what the results can (and can’t) tell us about perispinal etanercept in stroke recovery. The real problem: not “hope vs skepticism”… it’s confusion If you’re a stroke survivor, you’re already doing something heroic: you’re living inside a recovery journey that demands patience, grit, and constant adjustment. The challenge isn’t that you “don’t want to believe” in something. The challenge is that it’s genuinely hard to make an informed decision when: People report different outcomes Online conversations become polarised fast Scientific studies use unfamiliar language The same treatment can be described in completely different ways depending on who you’re listening to My goal here isn’t to tell you what to do. It’s to help you think clearly, ask better questions, and understand what the best available evidence from this trial actually tested. What the PESTO trial was trying to investigate (in simple terms) Professor Thijs explains that the PESTO trial was designed in response to strong community interest. Stroke survivors wanted to know whether the way perispinal etanercept is currently administered in some settings could be demonstrated to work under the standards used for medicines to become widely accepted as part of routine care. So the researchers designed a randomized, placebo-controlled clinical trial. In this type of study: A computer assigns participants to either the treatment or a placebo Participants and clinicians are kept “blinded” (they don’t know who got what) Outcomes are measured in a consistent way at set time points In the PESTO trial, the focus was on stroke survivors with moderate to severe disability and reduced quality of life. The primary question was straightforward: Does quality of life improve after one or two injections compared with placebo, over the measured timeframe? Why this study looked at quality of life (not one symptom) One key detail Professor Thijs highlights is the design choice: the trial didn’t only target one issue, like pain or walking. It aimed to be more “pragmatic,” reflecting how treatment is used in real-world settings where people seek help for different post-stroke challenges (mobility, fatigue, speech, cognition, pain, and more). That means the main outcome wasn’t “Did walking speed improve?” or “Did pain reduce?” It was broader: Quality of life at 28 days And again after the second injection timeframe (56 days total) This matters because your results can look different depending on what you measure. A trial targeting one symptom might see a signal that a broad quality-of-life measure doesn’t detect (and vice versa). What the PESTO trial results found In Professor Thijs’ words, the trial did not show a difference in quality of life between the treatment and placebo groups at the measured time points: No clear quality-of-life improvement at 28 days No clear improvement after two injections at 56 days That’s the central outcome. But there’s another finding that grabbed my attention—and it’s one many listeners will find surprising. Quote block (mid-article): “We saw that 58% of the people also had that improvement [with placebo] and 53% had it with etanercept… our initial guess was very wrong.” — Professor Vincent Thijs The “placebo signal” and why it matters A strong placebo response doesn’t mean “it was all in their heads.” It means that in a blinded clinical trial, people can improve for multiple reasons that aren’t specific to the drug itself, such as: Expectation and hope Natural fluctuations in symptoms The impact of being monitored and supported Regression to the mean (symptoms often move toward average over time) The structure and attention that come with trial participation Professor Thijs describes how, during the blinded phase, participants reported improvements in a variety of areas (like sensation, vision, speech). The crucial point is: the team didn’t know who had a placebo or an active treatment at the time, which is exactly why blinding exists. For you, the listener, this is a reminder of something empowering: Personal stories can be real and meaningful—and still not answer the question of efficacy on their own. “Am I a candidate?” The trial’s honest answer: we don’t know how to predict it (yet) One of the most important parts of this conversation is the desire to identify who might benefit most. Professor Thijs explains that the team looked at subgroups (for example: age, sex, severity, diabetes, time since stroke). In this trial, they didn’t find a clear subgroup where the treatment stood out as reliably beneficial compared with placebo. He also adds an important caveat: subgroup analysis is difficult, especially in trials that aren’t extremely large. So the absence of a clear “responder profile” here doesn’t automatically prove none exists—it means this trial didn’t reveal one. What this episode is (and isn’t) saying Let’s keep this grounded and fair. This interview is not about attacking any person, provider, or clinic. It’s not about shaming stroke survivors who tried something. It’s not even about telling you that you should or shouldn’t pursue a treatment. It is about this: Understanding what the PESTO trial tested Understanding what the results showed within their timeframe Knowing the limits of what the trial can conclude Using evidence to reduce confusion before making big decisions A simple “clarity plan” before you decide anything big If you’re considering any high-stakes treatment decision, here’s a neutral, practical way to move forward: 1) Ask: “What outcome matters most for me?” Is it pain? walking? fatigue? speech? cognition? daily function? quality of life? A treatment might be studied for one outcome and discussed online for another. 2) Ask: “What does the best evidence say—specifically?” Not “Does it work?” in general, but: In what population? Using what method? At what dose? Over what timeframe? Compared with what? 3) Ask: “What are my options and trade-offs?” Talk with a qualified healthcare professional who understands your medical history, risk factors, and rehab plan. Ask about: Potential risks and side effects Opportunity cost (what else could you do with the same time, money, and energy?) Evidence-based rehab and supports that match your goals Listen to the full interview If you want the clearest explanation of the PESTO trial results—from the lead researcher himself—listen to the full episode with Professor Vincent Thijs. And if you’d like to support the podcast (and help keep these conversations going for stroke survivors who need hope and clarity): Bill’s book: recoveryafterstroke.com/book Patreon: patreon.com/recoveryafterstroke 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. PESTO Trial Results (Etanercept After Stroke) | Interview with Professor Vincent Thijs Confused about perispinal etanercept after stroke? Prof Vincent Thijs explains the PESTO trial results clearly, calmly, and evidence-first. More About Perispinal Etanercept: Etanercept Stroke Recovery: Wesley Ray’s Relentless Comeback Dwayne Semple’s Remarkable Stroke Journey and Perispinal Etanercept Etanercept for Stroke Recovery – Andrew Stopps Support The Recovery After Stroke Podcast on Patreon Highlights: 00:00 Introduction and Overview of the PESTO Trial 04:19 Design and Objectives of the PESTO Trial 11:23 Recruitment and Methodology of the Trial 18:31  PESTO Trial Results and Findings 24:28 Implications and Future Directions for Research 32:15 Conclusions and Final Thoughts Transcript: Introduction: PESTO Trial Results Bill Gasiamis (00:00) Hello and welcome back to Recovery After Stroke. Before we get started, a quick thank you to my Patreon supporters. Your support helps cover the hosting costs after more than 10 years of me doing this show solo. And it helps me keep creating episodes for stroke survivors who need hope and practical guidance. And thank you as well to everyone who comments on YouTube, leaves reviews on Spotify and Apple podcasts. buys the book and even to those of you who don’t skip the ads. Every bit of that supports keep this podcast going. Now today’s episode is about the PESTO trial results and I’m interviewing Professor Vincent Theis. If you’ve ever felt confused by the conversation online about perisponal antenna sept, some people sharing positive experiences while others are feeling disappointed and plenty of strong opinions in between, this episode is designed to bring clarity. We talk about what the PESTO trial set out to test, how the study was designed, what it found within the measured timeframes and what the results can and can’t tell us. Just a quick note, this conversation is educational and not medical advice. Always speak with a qualified health professional about your situation. All right, let’s get into it. Professor Vincent Dase, welcome to the podcast. Vincent Thijs (01:24) Thank you for having me, Bill. Bill Gasiamis (01:26) I’m really looking forward to this conversation. Atenosept is one of the most hotly discussed topics in stroke recovery. And there’s a lot of misconceptions about whether or not it is or is not efficacious. And while there’s a lot of anecdotal evidence where some people have had positive outcomes from injections, there’s also a lot of people’s feedback, which is very negative about their experience with the Etanercept injections and the lack of results. So today, the reason I reached out is because I wanted to get to the bottom of the findings of the PESTO trial. And I’m hoping that you can shed some light on that. The first question basically is, can you start by explaining in simple terms what it was that the PESTO trial set out to investigate? Vincent Thijs (02:22) All right. The PESTO trial was in response to community members, stroke survivors, wanting to find out whether the current practice of administering Etanercept has done in the U.S. in private practice. In Denmark, I hear there are some sites that provide this treatment. Whether the treatment and genders can be actually proven according to the standards that we use in the pharmaceutical industry to get it to become accepted as a standard of care treatment. For that, you need to do what we call a randomized controlled clinical trial, preferably two that show evidence that treatment does what it’s set out to do. And that’s why with this background and the community pressuring the minister several years ago, Mr. Hunt at the time, to fund a trial that would help answer that question. Design and Objectives of the PESTO Trial There was a call was set out to do this trial and several groups in Australia applied and then an independent committee decided to award the trial to the PESTO study group. And then we tried to design this trial to give an answer. So it’s mostly about people that have moderate to severe disability after their stroke that have reduced quality of life. And We wanted to know, does their quality of life improve when Etanercept is administered? And we wanted to test whether one or two injections were needed. Because that’s what we heard from stroke survivors that from Australia and internationally that went over to the US. Well, this is how it’s done. You get one or two injections and there was a paper that had shown big effects with one injection. So that was the primary endpoint, but then we also looked at whether two injections could help. And when you design a trial, you have to make a decision, will we focus on people with. pain after stroke, or will we look at people who have mobility issues or speech issues or cognitive issues? And we saw that current clinical practice actually was people with various impairments after stroke were accepted and received the treatment. And what would have been the advantage of doing say only mobility or only pain? Well, you can then look at the outcome of pain or mobility, does it improve? Or is your cognition improved? But because we wanted to be pragmatic and we know that recruitment in clinical trials needs to reflect how is current practice. So we thought let’s put in all the people with moderate to severe disability, whatever their impairment after stroke and reduce quality of life. And then we looked at quality of life as an outcome rather than an individual impairment. And so what we did then was to use the randomized technique and where it’s left up to the computer to decide what treatment a person will receive, the active Etanercept or a similar looking placebo, and then look at 28 days and we had to make a decision what makes sense 28 days, what is practical. to see whether that injection then had improved quality of life. And then we did another injection again with a placebo or the active drug. And then after 28 days again, we looked again whether that had made a difference. So we have people that had received two times the placebo, one time the placebo, and one active injection. And then we have people that had received two active injections. And then we were able to compare those and see whether they had made bigger improvements if you receive two injections versus one or zero. Unfortunately, we couldn’t show a difference in quality of life at 28 days. And we also couldn’t show an improvement at 56 days after people had two injections. But that was in a nutshell how we designed and the background of the study. Bill Gasiamis (07:25) So the main difference then between the Griffith University study and your particular study was that they did go after a specific improvement in one area, I believe. it in? Okay. So although those guys went after pain, you guys went after just a general improvement in quality of life after the injection and your stroke survivors. Vincent Thijs (07:39) Mostly, think. Bill Gasiamis (07:54) would have been as far as 15 years post stroke. Is that right? Vincent Thijs (07:59) Yes, correct. We wanted to have people early after stroke between one and five years, and then also between people five to 15 years after stroke. That was also for practical reasons. Once you start trial, you see how good recruitment is, how many people want to participate in the study. And we saw that if we went to up to five years. Recruitment was relatively slow. So we added this additional group of people later on after their stroke. that because many people, I’m five years, I’m six years after stroke. Why can’t I get the treatment? And you know, so we also wanted to expand the pool. And that’s also what happens in clinical practice. Current clinical practice, I don’t think the sites and the US and they would refuse the patient six years or so. We just wanted to reflect the people that we see on the website going for this treatment. Bill Gasiamis (09:01) Yeah, yeah. And then the difference between the Griffith trial and your trial as well was the actual dosage of Etanercept the amount that was in the injection. I do believe that your trial was a 25 milligram injection. And I believe that the Griffith University trial was 25 milligram. injection to 50 milligram injection. Vincent Thijs (09:34) Yeah, we just based on what people told us they received when they went to the clinic, also the other sites and then also 35 milligram was chosen because that’s in the patent for the street. Bill Gasiamis (09:49) Okay, I see. So you’re trying to as much as possible mimic what was happening out there in in the private practice Vincent Thijs (10:00) We wanted to answer the question, is current clinical practice, is that beneficial? And that’s what sort of what the call was to do a clinical trial in current clinical practice. You can, you have to make decisions, right? And I think this was the most relevant for a stroke survivor. Bill Gasiamis (10:17) Now that’s really interesting that stroke survivors were able to twist the arm of a minister to get the funding to begin that process of the trial. How long ago did this actually start? Vincent Thijs (10:28) I think it was 2016, 2017 or so. So it takes a while to get the minister and then I think that the trial started in 2019. took a while to complete as well. Bill Gasiamis (10:43) Right understood. Okay So then you recruit people they come along and they go through the trial through the particular trial How does that work on the day do they turn up are they admitted? We’ll be back with more of professor face explanation in just a moment But I want to pause here because if you’ve ever felt stuck between hope and uncertainty, you’re not alone When you’re recovering from stroke, you’re constantly making decisions and some decisions feel high stakes, especially when confronting information that’s conflicting. Recruitment and Methodology of the Trial In the second half of this conversation, we get into the parts that really help you think clearly. What the trial results do and don’t mean, and why placebo responses matter in blinded research, and how to frame smarter questions before you commit time, money, or energy to any path. If you want to support the podcast and keep these episodes coming, You can grab my book at recoveryafterstroke.com/book or join the Patreon at patreon.com/recoveryafterstroke All right, back to the episode. Vincent Thijs (11:51) All right, so we recruited from a variety of sources. So we had kept a log of people that were interested in this. We had a Facebook post in New Zealand, for instance, where we recruited as well. We had people from the Stroke Clinical Registry that were approached. We had a website and people could register their interest if they were doing a search online to participate in clinical trial. So the variety of sources and then we have to determine eligibility that was mostly done either via an in-person visit or remotely via telehealth. We tried to get their medical information, what type of stroke they had. And then we also questioned whether they had this modified rank in scale, the disability they had, the impairments they had from their stroke. so then people came. they were considered eligible, then we scheduled a visit and they would typically come in no overnight stay needed. It was a day procedure that was done. People were then receiving another questionnaire on the day itself to measure their quality of life and other measures like their fatigue levels and how much help they required, etc. And then we proceeded with the injection, which was done. We had bought a special bed that was able to do the, the, the tilting that was required. So we set the people up, injected and then tilted the table. so, we received the drug. It was prepared independently by the pharmacist. So the pharmacist, they took the drug off the shelf or the made the placebo. and they made sure it looked exactly alike. So then somebody from the trial team picked it up from the pharmacist. The pharmacist didn’t tell, of course, what it was. And then the administration happened. So the doctor who administered and the participant did not know what they received. So after the procedure, they were left like this for four minutes. And then after four minutes, people could sit up again. And we waited about half an hour. then we asked them how they were doing, whether there were any adverse reactions, ⁓ and ⁓ then after that half an hour of observation people could go back to their habitual situation. ⁓ it’s a very simple ⁓ procedure to do. Bill Gasiamis (14:35) I believe there was a was there 126 participants Vincent Thijs (14:40) Yes, 126 people participated. had anticipated a little bit more people to participate. So we had hoped 168, but recruitment fell flat after a while and we were not able to find more people to recruit. So we made a decision and then, you know, these clinical trials, they have some funding ⁓ and they require the treatment team to be paid, et cetera, and that ran out. So we had to stop at a certain time. Bill Gasiamis (15:13) Was the study stopped early because of a decrease in the amount of funding or was there an issue with the funding at some point? Vincent Thijs (15:23) Funding ran out. You hire people for a certain amount of years and then you have fewer patients than you anticipate. So you have to stop. Bill Gasiamis (15:32) huh, okay. So would that affect the outcome of the trial? Would you say the lack of funding or the lack of the ability to take the trial further? Vincent Thijs (15:42) Yeah, well, what we had when you do the trial, when you plan the trial, you say, well, this is what we’re going to expect in terms of efficacy. You have to make a guess and say, well, that many people will have an improvement in quality of life if we give them the placebo and that many people will have an improvement in quality of life with the trial drug. And we had thought that about 11 % would improve with the placebo based on an earlier study. And then we had to make a guess because nobody had done this type of study on what Etanosap would provide. But reading the report that was published several years ago now, where 90 % of the people reported improvement in their impairments, we thought, well, Let’s not go for 90%, but a 30 % improvement. And so that was based on that we needed 168 people to participate in the trial. So that was what we call the pre-planned sample size estimation, which is a guess. When we stopped at 126 participants, actually we saw that the results were very different. There was not that 11 % actually in the placebo arm. saw that 58 % of the people also had that improvement and 53 % had it with ethanosab. So our initial guess was very wrong based on some statistical advanced statistical techniques we have. We have quite a lot of power to estimate whether there was a difference. So I think the trial can provide us an answer. It’s large enough to give us an answer about this particular question. Is current clinical practice in these people with this range after their stroke, does it improve? quality of life after a month or after two months. I’m not speaking about early improvement, I’m not speaking about six months down the line. We only can decide what we see in this study. Bill Gasiamis (18:05) So you have some limitations because you can’t have the funding to test one month, two months, six months, 12 months. You have the funding to basically meet the design of your study and then you can report on that. Now what’s really interesting is that the placebo had such a large result. PESTO Trial Results and Findings Vincent Thijs (18:34) What kind of things were people reporting that improved for the people who had the placebo injection?Look, this is, course, when we were in the blinded phase, when neither myself or my colleagues who did these scales, we were totally blinded. And that’s, remember vividly people saying, it didn’t do anything for me. But then there were also people said that they could see again. And so people that had improvement in sensation. Some people had improvement in their speech. there were, we, we observed these things, but we didn’t know whether they were active or placebo. And then surprisingly we had some people in whom we thought, they must have had active drug that turned out to have the placebo, but that’s years after, right? Because it takes a little bit of time to accumulate a sufficient number of patients. And we were only reporting and breaking the blind when the trial was finished. because otherwise you may be biased in all your analysis, et cetera. You don’t want to do that. So you wait until the end of the study to break the blind. And that’s very frustrating for the participants because there were many people that said, I must have had the placebo because it didn’t do anything for me. And there were other people that were, and some people like that, they said, I still want to go to the US. Bill Gasiamis (19:37) I see. Vincent Thijs (19:59) And please, can you tell me if I received a placebo? And I understand it was terribly frustrating for these participants. But we were very strict. No, we don’t want to break the blind. This is against the rules that you have to adhere to in a clinical trial. And so we didn’t do that. Of course, once the trial was finished, we were able to report the results back to the the participants. And then there were some people that were very surprised that they had received the active drug. I remember one person vividly who said, you have to tell me now because I’m going. And then I said, hold off, hold off. And then we told them you had twice the active drug. And so they decided not to go anymore. So you see how From a clinical trial perspective, it’s very important to remain very objective and not being able to see what people have received. From a humane level, of course, I understand it was very important to these people. Bill Gasiamis (21:02) Yeah, that’d be difficult. ⁓ And then I imagine that had the placebo not worked and then the tenisept did work, then there would have been people who would have said, well, I’ve received the placebo. It didn’t work for me. Other people received the tenisept. It did work for them. Why can’t I get the tenisept injection now? Vincent Thijs (21:26) Yeah, and we also had two people, people that had twice the placebo who noticed an improvement and have told me the improvement is still there. Bill Gasiamis (21:35) Wow. Vincent Thijs (21:36) So it. Bill Gasiamis (21:38) That’s amazing. Now was the. Vincent Thijs (21:40) And often that, and I must tell you, often those were relatively little things that seemed to improve both with the placebo and in the active group. And you see that there are changes in quality of life that people have reported, but it happens as well with the placebo. Bill Gasiamis (21:58) Wow. Was the intention of the study that was funded at the very beginning in 2016 by Minister Hunt, was it to determine whether or not this was going to be an effective treatment for people in stroke and therefore to roll it out somehow in the Australian medical system for stroke survivors? What was the thinking for Minister Hunt? Do you know? Vincent Thijs (22:24) Of course, I was not involved in that lobbying to the minister or anything, but it was to bring it on a pathway towards regulatory approval. We know that Etanercept is a relatively cheap drug that you can get ⁓ and is approved already for some indications, especially in people with rheumatoid arthritis, the condition of the joints, but it’s not approved for stroke. And to be officially approved and then potentially re- reimbursed on the PBS. You need to have some trials that have been done such as PESTO. We do different trial phases. One would be a phase two trial and a phase three trial. So phase one is typically in people just to assess the safety and some dosages usually in healthy people. And then a phase two is safety amongst stroke survivors. and preliminary efficacy. And that’s where PESTO was what we call a phase two B trial. And then a phase three trial would then be a trial in many more participants based usually on the results of a phase two B trial. And then usually when you have a phase three trial and it’s convincing and the authorities may approve such a trial. Bill Gasiamis (23:46) So in this case, the phase two B trial, this PESTO trial didn’t find that it’s efficacious. And as a result, there’s not going to be a further trial. Would that be accurate? Vincent Thijs (23:56) Well, based on the findings we have in this particular type of ⁓ way of administering in this particular group of people, I don’t think there’s enough evidence to argue for a phase three trial. It may be that you could say, well, we want to focus on pain because that was more promising. Well, you’ll need to do another trial in that condition. Implications and Future Directions for Research After stroke or maybe within a year after stroke. I mean, there are other possibilities, but at the moment, current clinical practice type trials, I don’t think there’s enough evidence to move forward with that. Bill Gasiamis (24:43) What would the numbers have had to look like for the trial to conclude that there was evidence of efficacy? Vincent Thijs (24:51) Well, I think based on what we have now, you would need to design a much, much bigger trial because there was only a 5 % difference between the placebo and the active group. And actually it was in favor of the placebo. So the placebo did a little bit better, not statistically significant. So it could just be by chance, but you would need probably thousands of people. Bill Gasiamis (25:15) I see. And I imagine there’s not a lot of excitement about funding something like that by the people who fund these trials. Vincent Thijs (25:25) Yes, typically the funders will look at how good is the evidence to pursue this. And if you were a pharmaceutical company on a pathway to development for a drug, you probably would say, well, it looks safe, but it didn’t do what it intended to do. So let’s stop the development of this drug for this indication. Bill Gasiamis (25:45) I say so. I think one of the challenges with the path of administering a TANACEP to stroke survivors is that there seems to be a missing step. And the step to me is determining whether or not somebody is a candidate for a TANACEP. perhaps if we knew more about the stroke survivor, what was actually happening in their particular brain, and we were able to determine some similarities between the people who have had a positive result and we developed a method, then that would make it a lot easier. to say, well, I’m a stroke survivor. I’d like to have a TANACYPT and then go through a process of determining whether or not I was a candidate rather than just guessing whether I’m a candidate or not and then having to pay money to find out whether in fact I was a candidate. Vincent Thijs (26:33) The trial provides a little bit of answers to that. ⁓ You want to identify a marker or a subgroup of people in whom the drug will work particularly well. And so you could look at, and we looked at different things like females versus males, if you’re younger versus older, if you have very severe disability or less severe disability, if you have diabetes, are you early after your stroke or later? That one to five versus six to 15 category. And we could not identify a group in whom the the drug worked particularly well. Now there’s a caveat when you do a clinical trial, it’s really hard to look at subgroups, especially if your trial is relatively small and the PESTO trial is relatively small. So you have to take this with a grain of salt, but it was nothing really promising. that we could identify. So probably you need other markers. If you believe in Etanercept as a drug, you would possibly need to look at what are the levels of TNF alpha, the drug, the molecule that actually is targeted. Unfortunately, there’s nothing like readily available to do that. Could it be that people with a… a stroke in a particular location that would work particularly more than in others, but we don’t have any real way at the moment to do that. Bill Gasiamis (28:08) Okay, so we’re assuming that the people who experience an improvement after they’ve had an attempt to shut that the markers of TNF alpha were lower or higher or Vincent Thijs (28:21) Well, the theory is that they have a lot higher TNF-alpha. Now, as you know, the premise is Etanercept works by reducing this molecule and we have good evidence that it reduces this molecule in the blood, but we don’t have good evidence that it reduces the levels in the brain. That’s where you want it to be. And one of the difficulties and many scientists that work on the Etanercept and ⁓ have said, look, it doesn’t cross the blood-brain barrier. It doesn’t. go against the natural defense that we have to protect the brain against substances that could potentially be harmful for the brain or that have a large size. And the Tandacep we know has a large size would not cross the blood-brain barrier. So it doesn’t reach the brain. And many people look at it with relative skepticism that it actually enters the brain. Bill Gasiamis (29:18) ⁓ And then with regards to rheumatoid arthritis, doesn’t need to cross the blood-brain barrier. It just somehow gets to this, position or the place where inflammation is occurring. TNF-alpha is active and it can easily mitigate the impact that TNF-alpha is causing. In the brain, the brain is protected by the blood-brain barrier and it cannot cross the blood-brain barrier under normal conditions and therefore it can’t get to where the TNF-alpha is. if there’s any TNF alpha, if inflammation is the issue and it cannot resolve it one way or another. So for some people perhaps it can’t resolve it. Now, I don’t understand about Etanercept a lot. I don’t understand exactly how the molecule works, et cetera. But if it was injected into a blood vessel, is that not something that can occur? And if it was, if it can occur, would that then cross the blood brain barrier? Vincent Thijs (30:15) That wouldn’t cause a blood brain barrier, no. You would have to do what we call a lumbar puncture or put a little ⁓ injection into the ventricles and then hope that it would enter the area that is stark where the TNF alpha is elevated. Those experiments have not been done. Bill Gasiamis (30:17) Either. Okay, so a lumbar puncture is probably riskier than… Vincent Thijs (30:44) Well, it’s uncomfortable. It’s uncomfortable and we do it to administer drugs if needed. Some people with brain cancer receive it. There are other trials ongoing in certain areas of stroke where it’s done. Bill Gasiamis (30:58) Then the difficulty is, and my job here is to report back to the community how they should proceed with Etanercept going forward. Now, I don’t expect you to answer that. However, your study probably gives enough information for people to be able to make an even more informed decision than they did before. Previously, what I think was happening is people, and it still happens every day. And I’ve interviewed a lot of stroke survivors who’ve had positive results with Etanercept. The challenge is getting interviews with stroke survivors who have had negative results with Etanercept. That is something I haven’t been able to do. So if somebody happens to be watching and listening to this and they have had the Etanercept shots and they didn’t get positive results, please reach out so that we can share a balanced story of what’s happening out there in the community. Would there be a reason for the community to perhaps begin again to lobby a government or a minister of a government to look at perisponinal tenosept and study it in a different way, like administration via a lumbar puncture. Conclusions and Final Thoughts Vincent Thijs (32:08) I think we need more, probably go back to the drawing table to see whether, because we’re just taking a step back. The idea is that there is inflammation after stroke and we know that there is inflammation after stroke. We don’t, we just don’t know how long it is. We don’t have a good marker. Is it present only for weeks or months after stroke or can it persist for years? The theory is that it persists for years, but if you look at the actual experiments that have been done, it’s really hard to study in humans because we don’t have good tests. But if you look in animals, it’s also hard to do long-term studies in animals, but nobody has really proven that conclusively that there is still after the stroke causes a scar, that process is still really active. Is TNF-alpha years after a stroke still present? Yes, it’s present because we use TNF as a transmitter in the brain or a chemical in the brain, but is it still worth reducing its activity? That’s probably, I think, a bigger question that science needs to answer is to understand that all inflammation piece and the time after stroke that it persists in my Bill Gasiamis (33:35) Yeah, because it could still be the fact that the person has had brain damage. The particular part of their brain that’s damaged has, for example, taken offline one of their limbs and there is no way to recover that once it’s gone. there is no, there may also be no inflammation ⁓ there. So somebody in that situation receiving Etanercept wouldn’t get a result even if it was able to cross the blood-brain barrier because the damage is done and that’s the challenge with the brain is once it’s damaged restoring the damaged part is not possible. Vincent Thijs (34:15) Yeah, look, after this experience with the PESTA trial, I think we need to work on other avenues and I’m not as hopeful with this based on the data that I have seen. Bill Gasiamis (34:28) Yeah Well, my final question then is, are you planning on exploring inflammation and recovery after stroke with any work that you’re doing in the future? Is there any more of this type of work being done? Vincent Thijs (34:46) we’ve just launched a new study, which is not a randomized trial, but it’s trying to get at this common symptom that people have after stroke, which is fatigue and cognitive changes. And one of my post-docs, Dr. Emily Ramech, she’s a physio by background. We just launched what we call the deep phenotyping study after stroke. And we are looking at young people that have had a stroke up to age 55 and we’re taking them into the scanner. We will do a PET scan that’s looking at inflammation. We’re taking their bloods and looking at markers of inflammation and see how that relates to fatigue after stroke. This is between the first month and the sixth month after stroke. That will give us a little bit of timeline of inflammation after stroke. It will give us some information about fatigue, which is very common, but I have no plans at the moment to look at ethanocephaly. Bill Gasiamis (35:53) Fair enough. I appreciate your time. Thank you so much. All right, well, that brings us back to the end of the episode with Professor Vincent Dease on the PESLO trial results. My hope is that this conversation gives you more clarity, especially if you’re felt caught between personal stories, strong opinions, and a lot of uncertainty. The goal here isn’t to tell you what to do. It’s to help you ask better questions and make decisions with your eyes open alongside a qualified healthcare professional who knows your situation. If this episode helped you, please do a couple of things. Subscribe on YouTube or follow the podcast on Spotify or Apple. Leave a review if you can. It really helps more stroke survivors find the show. And if you’ve had an experience you’re willing to share respectfully, positive, negative or mixed, add a comment. Those real-world perspectives help community feel less alone. And if you’d like to support the podcast and keep it going, my book is at recoveryafterstroke.com/book. And you can join the Patreon at patreon.com/recoveryafterstroke. Thanks for being here with me. And remember you’re not alone in this recovery journey. Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience, and we do not necessarily share the same opinion, nor do we recommend any treatment protocol discussed. All content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gassiamus. Content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. 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Introduction After a stroke, recovery doesn’t end when rehab does. For many survivors, that’s when confusion begins. Fatigue, brain fog, limited appointment time, and conflicting advice make it incredibly hard to know what actually helps. And while research is advancing rapidly, most survivors are left trying to piece together answers from podcasts, Facebook groups, and late-night Google searches. That’s why this conversation with Jessica Dove London, founder of turnto.ai, matters. The Hidden Problem in Stroke Recovery: Information Overload Stroke survivors aren’t lacking motivation. They’re drowning in disconnected information — and often too exhausted to process it. Bill shares how, after stroke and brain surgery, even short bursts of research felt impossible. Jessica explains how parents and patients are expected to become full-time researchers — on top of surviving life-changing diagnoses. Why “Just Ask Your Doctor” Isn’t Enough Doctors care deeply. But no clinician can keep up with thousands of new stroke-related publications every week. This gap leaves survivors feeling dismissed — not because professionals don’t care, but because systems aren’t built for rapid knowledge sharing. “You shouldn’t have to rely on luck or Facebook groups to find something that could change your recovery.” How Tunrto.ai Changes the Stroke Recovery Equation turnto.ai doesn’t replace doctors. It reduces the cognitive load on survivors. Jessica explains how the platform: Reads thousands of new stroke resources weekly Filters by your stage of recovery and priorities Surfaces research, patient experience, and expert insight together Updates automatically as your needs change For survivors managing fatigue, this alone is transformative. Real Examples: From Spasticity to Stem Cells Bill demonstrates how Tunrto.ai can instantly surface: Evidence and cautions around emerging treatments Patient experiences that add real-world context Research trends and unanswered questions Instead of hours of searching, survivors gain clarity — and better conversations with their care teams. Why This Restores Hope After Stroke Hope doesn’t come from miracle cures. It comes from visibility — knowing what exists, what’s emerging, and what’s worth asking about. Tunrto.ai doesn’t promise answers. It promises orientation — and that changes everything. Conclusion & CTA If you’re a stroke survivor who feels lost, overwhelmed, or unsure where to look next, tools like turnto.ai represent a new way forward. Learn more at turnto.ai Read Bill’s book at recoveryafterstroke.com/book Support the podcast at patreon.com/recoveryafterstroke You’re not alone — and better answers are closer than you think. 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. When Stroke Recovery Meets AI — Finding Clarity Faster with Jessica Dove London After stroke, finding answers shouldn’t depend on luck. Discover how AI is changing stroke recovery with Jessica Dove London. Turnto.ai Jessica’s LinkedIn Support The Recovery After Stroke Podcast on Patreon Highlights: 00:00 Introduction to the Journey 09:17 The Birth of Turn2.ai 19:07 Navigating Information Overload 27:10 The Onboarding Process Explained 35:28 Real-Life Applications and Success Stories 43:57 Empowering Patients Through Collaboration Transcript: Introduction to AI for stroke recovery Bill Gasiamis (00:00) Hey everyone, if you’ve ever struggled to find information about tools, treatments, or resources that could actually help you on your stroke recovery journey, this interview is a game-changer. One of the reasons I’m so passionate about doing this podcast is because of my purpose behind it. And that purpose is simple, to connect people with information, to connect people with tools, and to connect people with other people. who truly understand what this journey is like. After a stroke, finding reliable up-to-date information is exhausting. You’re dealing with fatigue, brain fog, limited time, and often very little guidance beyond rehab. In today’s episode, you’re going to hear from Jessica Dove London, my new hero, the founder of Turnto.ai, a tool designed to help people like us find relevant stroke recovery information much faster with less effort and far less energy delivered straight into your email inbox. This is not a sponsored episode, but it is an episode about a solution I genuinely believe can change how stroke survivors find answers. Let’s get into it. Bill Gasiamis (01:13) Jessica Dove London, welcome to the podcast. Jessica Dove London (01:16) Great to be here Bill Bill Gasiamis (01:17) Sometimes when people send me emails, they go into the inbox and then they’re kind of like, I’ll look at that when I get back to it, when I get back to it, I get back to it. And I saw the email that you sent to me when you reached out to tell me about this amazing new product. And I thought, well, another amazing new product. There’s plenty of them. And usually the products that people kind of email me about are not relevant to Stroke. And people are just trying to get onto podcasts and all that kind of stuff. And I get it. I’ve got no issue with that. If they’re relevant, I love sending new information to people. And one of the biggest challenges is determining what’s going to be the most helpful thing. How can I get things out that are not just another thing to talk about for the sake of talking about it? And then I didn’t respond to your email because it kind of goes down to the bottom of the list when all the other new ones come in and I’ll get to that. get to that. And then I saw a link in my I comment on my LinkedIn and I thought, okay, this is familiar. I’ve seen this before. Let me check it out. And then I checked it out and thought, what an idiot. Why haven’t I contacted this person back quicker? This product is amazing. But before we talk about turnto.ai, give me a little bit of a background. I just want to get a sense of how it is that somebody comes up with the idea. I know what I’m going to do. I’m going to create a product that brings information to people. more rapidly than ever before so that they can decrease the amount of time it takes to learn new and amazing things that are coming up about their condition. Jessica Dove London (02:50) Yeah, well, Bill, I did really like your podcast. That’s why I linked in you as well. I actually really liked your podcast because, you know, from where I come from, my son has a rare type of cerebral palsy. We actually don’t have a podcast like this where it’s a patient-led, you know, quest for finding the most useful, cutting-edge, relevant type information. So I really liked your channel. But I guess where do, where do, you know, where do a lot of these things come from? from my lived experience. So when my son was 18 months old, he was diagnosed with a rare type of cerebral palsy, which is a little bit similar to Parkinson’s in his rare type. And when I went along, when he got diagnosed, I went along to his appointment, we knew he had something and I took a big research paper along systematic review and the doctor said, nothing you can do to help him. There’s no medication, surgery. She even told me, don’t bother reading those papers. And I just, went on this journey that maybe a lot of people listening relate to when you are given something or you’re recovering, we have this huge life change of wondering what can I do to improve my son’s quality of life? And this real question, like, can I do anything? He’s amazing as he is, but we want to unlock the whole world for him. So I just went on this journey for years, finding treatments for him. And we just kept finding treatments and some were incredibly life impacting. And almost all of them were in the medical literature. I just had to decipher them. I traveled the world, how did every world leader ended up studying neuroscience? We, we had a big YouTube channel where we shared our stories and I went to a huge conference with all these academics and this one world leader got up on the stage and she shared these incredible things coming for cerebral palsy, which actually is some relevance for stroke because there’s a lot of things that are free. They’re, sort of based on neuroplasticity. They’re very accessible. And I actually put my hand up and said, I shouldn’t have to fly around the world. to learn about cutting edge things that could help my son or help people right now. you know, I guess I just live this experience that think many people do where all the cutting edge information can be all over the place. It can live in these research papers. It can live in the patient community. It can live in those incredible healthcare providers, but you have to sign or in clinical trials, you know, you don’t know, you have to piece it all together and then work out what’s relevant for me. because you know, you could be sitting in a Facebook group, you could be listening to podcasts like this, but there’s so much time that is wasted and opportunity that is wasted while you’re trying to work out all these things. And for most people, you don’t have the world leading best healthcare providing team. Who knows everything doing that work for you. You have to do it on your own. So yeah, just live that problem of trying to find the cutting edge thing to help my son and you know, For two years, it took me two years, we did find a whole lot of things. Bill Gasiamis (05:40) Yeah, two years. my gosh. And I mean, you’d give more than two years to your son, but it’s not about that. It’s about, doing it more quickly than two years. And from stroke perspective, do you have a stroke? Your brain doesn’t work properly. And then trying to sit there and get through, data, texts, videos, all that kind of stuff. I only was able to find like very small amounts of time in between. ⁓ feeling terrible most of the time. And then, ⁓ my gosh, I’m feeling good right now. And then it’s a priority. Like what do I do now that I’m feeling good for five minutes or 10 minutes or an hour? And for me, I, I was very keen to kind of, understand what I can do to support myself. And I knew for certain there was stuff that doctors weren’t delivering when able to deliver, didn’t know about, weren’t telling me that if I did the research that, and I found that I could implement something that was easy for me to implement. for me, just perfect example would be nutrition. But in my conversations with doctors, when I asked them about, this something I can stop eating or start eating to help my brain? There was no information out. There’s probably nothing that wouldn’t matter. Just go about the treatment that we’re offering. And then as a mom or a parent, let’s say as a parent who has a child who has needs beyond the quote unquote normal. It’s like, I’ve got to do all these extra things as a parent for my child. And I’ve got to have my life. I’ve got to do work and do all the things that parents do other than just parenting. And then somehow in there, I’ve got to find a flight to a conference to the other side of the world to hear a researcher maybe, and it’s only like a maybe share something that’ll be life-changing and supportive. And that’s kind of… where I was at, was in the same place. And I thought, what I’ll do is I’ll create a conversation so that people can come to me. We can chat about it amongst other things, share stories. But then hopefully somebody on my YouTube channel says, do you know about this? And then that happened. And then that was a problem as well, because it’s like, I don’t know about this. I don’t even know where to begin to have a conversation about that with you. And if I needed to… do the research on something that I was asked about will take ages. Now, one of the questions I had recently was, you know about methylene blue? And it’s this ridiculously kind of current topic about improving mitochondrial function for people. And as a result of that, people are finding out how you can take that and they’re taking it, which I wouldn’t recommend. And, and now I don’t… The Birth of Turnto.ai And now I’ve got to go and do, I don’t know how many searches to find all the data on Methylene Blue and I don’t know where they’re hiding. Read them, spend my entire time to read them, know, spend all my time to read them and then somehow kind of give people feedback on what I’ve read because that’s the role that I’ve decided to play. And now that’s what they’re expecting of me, but it takes ages. It’s forever. So then a little while later, what happened was you, you said, you know, have a look at turnto.ai. check it out, tell me what you think. And then I did. And I was able to see the power of being able to have the research just sent to me in my inbox because I asked the AI to do it and it does it on a regular basis. And in a moment we’ll share about it. But then tell me a little bit about that transition for you from I’m traveling all over the world to nah, stuff that. I’m gonna do that from. my office in Brisbane, in Australia. I’m not going to travel the whole world to find out this information. It’s not efficient enough. How do you move from mum with a problem to mum with a massive solution? Jessica Dove London (09:31) I mean, I guess, you know, those first five years I was just full-time mom and just doing, you know, we did all the things we did into all the therapy centers. And I, you know, I guess it’s really interesting that question you had. you have these really tricky questions or people ask you questions or you’re on a Facebook group and you see people talking about something you’ve never heard about. Yeah. I was just trying to pull those pieces together because I had the capacity to do that reading. Often it was late at night. think one of the biggest challenges is often at the beginning of your journey, you don’t have the context. You don’t know the map that you’re even looking at. All you know is the impact it’s having immediately and the potential future impact and all those really hard things that you’re facing. so probably for those first five years, I was just pulling everything together messily and someone’s trying things, low risk things, all these different things, trying to get the best people to give us that advice. However, you know, after those five years, I went to that REITs big conference and actually initially got an AI grant to do a research project, an AI research project. And I had a really good friend get lung cancer, stage four lung cancer and a good friend get MS. And they just had the same problem that I was having. And so I just knew there was something here. And so initially what we did is we actually just brought all the treatments that exist for cerebral palsy in one place. And there were over 220 treatments and most patient knew about five to 10. And these are, science backed different protocol treatments people are doing and having some impact on. They having some evidence of things that are working. And so the problem is just really wild because you again, you’re told, I’ll just try these few things, but there’s actually legitimate scientific leading people with all these other ideas and some of it’s really working. So I just, I initially I did that. And then when my kids started school, ⁓ I decided to start a tech platform because I saw this as a really huge problem, but I knew I needed a world-class engineering team because I knew AI had to be part of this. And this was before all the LLM, all the open AI. don’t know if people’s familiar with AI, familiarity with AI is. Before all of this amazing sort of last few years, I was using sort of different, more sort of machine learning to try and just bring the data in and categorize it. but really just trying to make it accessible for people. Bill Gasiamis (11:51) Before we continue, want to pause for just a moment. If you’ve been listening to this conversation and thinking, I don’t have the energy to search research papers, Facebook groups, podcasts, and forums just to find one useful thing, you’re not alone. exact problem is why this episode matters. What Jessica has built with turnto.ai is a way to reduce the mental and physical effort it takes to stay informed. after a stroke. Instead of searching endlessly, relevant information is found for you based on where you are in your recovery and sent straight to your inbox. There’s a listener discount available which you’ll find in the show notes and I’ve also created a page with more details at recoveryafterstroke.com/turnto that’s recoveryafterstroke.com/turnto But stay around, listen to the rest of this episode before you go and check out recoveryafterstroke.com/turnto, to get the discount code. All right, let’s get back to the conversation. Jessica Dove London (12:55) yeah, I guess it was definitely a journey I didn’t go from, know, the first few years it was just heads down, fully in care mode, trying to deliver all the care, trying to access all the experts. And then slowly I just went on this journey to eventually being full time running this team of amazing people from the tech space. I knew this should be a tech solution because You know, I think one of the unfortunate things is, is amazing groups out there, amazing orgs out there, but they often are technology specialists. So I don’t build things that can continue to be relevant. They often make really high quality resources and then the resources are actually not relevant even for you doing a search. You know, you do a search and then what happens in a month when there’s something new that’s come out about that. So yeah, we’re on that journey and probably the cornerstone of what we’ve built is this belief we have that all the voices matter. And so research matters, patient experience matter, leading professionals, experts matter. And actually they sometimes can hold different pieces of the puzzle. probably unlike other tools that you’ll see out there and when we show what we’ve built and how we build it, that’s the key thing. The other thing we believe is that new information matters and it’s too much work for one person, let alone a doctor, a specialist can’t even stay up to date on the disease because know, stroke is actually got an unbelievable amount of things that are created every week. can be over 2000 new things every week in stroke that are being published from expert interviews to new research to clinical trials to patient discussions to incredible events. It’s just wild. Like there’s actually so much incredible stuff happening. But you can’t find it all and you can’t read it all. Bill Gasiamis (14:39) Yeah, absolutely. And that’s why when I had a little bit of a play with Tony, with Turn 2… It was cool because I’m not interested in everything that stroke has to offer me. The research has taught me, but I’m interested in certain things and I’m interested on things specifically that my followers and listeners on my podcast want to know about, you know, so I’d love to be able to bring that to them. So then I had a bit of a play and then we’re going to move to that. I’m going to share the screen in a minute and we’ll talk about that actual screen and the solution, but there is an onboarding process, which we’re not going to. show today but can we talk about it a little bit just to give people a sense of how people they’ll come across turn to and then they’ll go okay ⁓ i want to start and then i want to make sure i get information information for just the stuff that i’m interested in how does the onboarding work Jessica Dove London (15:21) Yeah. Yeah, I guess this is again, thing of like, you know, we’ve built a tool that you’re about to see where we want to keep you up to date, read every single new thing and just give you a handful of things. So how do we do that? And so the way we designed this is to find out what’s on top right now. If you’ve just had a stroke, you’re in a very different stage to one year post, two year post, five year post. the reality is of a patient journey is Bill Gasiamis (15:40) Hmm. Jessica Dove London (16:02) you are always changing, know, you know, we have things, new things come up and then you suddenly feel like you’re at the beginning again or new symptoms come up and you get very confused. Like, is this related? I’m like, I have to talk to my doctor. What’s happening here? I’ve just started a new medication. There’s always things happening. So we ask just five questions and the questions are just all about right now. and sort of some key different attributes around your recovery journey or your journey because Sometimes some information is less relevant for certain groups than others. I’m in a cerebral palsy space, your subtype really matters because it’s actually completely different neurology. And so you might find this incredible breakthrough and it just not be relevant for the subtype, which is actually the case for my son. My son has a very rare subtype, which makes like, you know, anything published on his subtype is like gold because you’re like, wow, a new sort of thing has come out. Yeah. So what we’ve done is, made the onboarding about what are you facing this week with your stroke recovery? You know, what is the symptom you’re worried about? And the thing about the tool is, you know, that week it’ll, it’ll go and read the thousands of new things and it will then match you according to what’s on top for you. And it’ll also go and do specific searches on your location. So if you’re living in Sydney, you’re living in anyway, Los Angeles, London, it’ll search for that week for stroke. what is happening in that city. And the reason that’s so helpful sometimes is there are groups, there’s new clinical trials, there’s so many things that are all these incredible people are putting on webinars, like online support, online educational things. So we match you to all of those things every single week. But yeah, really it’s what are you doing with dealing with right now? And then if you get to Sunday, cause that’s when we send our update out and you’ve got something new that’s come up, you just can talk or type and say, hey, I’m not interested, I’m now interested in keto and I’m interested in this and it will just make you, it’ll create new priorities. Cause that’s the real journey of living with a competition. Bill Gasiamis (18:05) I love that it does change at the beginning. It was all about fatigue. How do I improve my fatigue? And then later on it was like, how do I improve my sleep? And then later on it was after, you know, after brain surgery, it’s a completely different, uh, um, inquiries that I was making on YouTube, Google, wherever I was like, you know, how do I overcome a brain surgery, all that kind of stuff. Um, and then also at the beginning, some of those problems I solved like, then Jessica Dove London (18:25) Yeah. Yeah. Exactly. Bill Gasiamis (18:35) I thought, okay, what’s the next one I need to solve? Jessica Dove London (18:38) Yeah, that’s right. The funny thing about health information is though, cause one of the things we’ve built, if let’s say you’ve tried something though, and there has been new research that’s come out about post impact, you may get that in your update because, know, let’s say you did a surgery or you did sort of some sort of intervention there. Sometimes studies coming out about five years post that intervention. And actually that’s really useful for you because what if it, this new potential thing you should be testing for? I think the key to what we, Navigating Information Overload Have learned from building these tools is you don’t actually know what you don’t know. And like, I think most people here have had that experience of sitting in a Facebook group, listening to your podcast. You learn something new and you go, ⁓ I wish I knew this. ⁓ it feels like luck. And I think that is just a really challenging thing because your health is so much more important than luck, but it can feel like that. You know, I can literally remember when I’ve been in a Facebook group and someone first mentioned this surgery that we ended up doing. took us a year to make the decision, but it was like, ⁓ my goodness, what is this they’re talking about? And then I went to my, our surgeon and the surgeon was very, very dismissive even though there was huge body of literature behind this particular intervention. So then I had to find another specialist and so it begins. Bill Gasiamis (19:53) Yeah. That’s a great thing too, as well. Like if you could be facing roadblocks that are based on other people and that, and then if you don’t have like some kind of ammunition to take to them to say, but you know, how about this? That’s one of the challenges. Cause then, you know, they kind of say, well, there’s no data. I haven’t seen it. If I haven’t seen, I’m a doctor. Like, you know, what do you know? How are you going to be the perfect person that makes the decision? gatekeepers of information bother the hell out of me. Like I hate people who have information and think that because they have it, that they sort of hold the key to how that information is disseminated. But then also people who discourage people from doing searches on what may help them, you know, this is my life, it’s my condition. I wanna be able to find things to help me to make my life better. So I don’t have to be in the hospital system so I can go back to life. so I can improve things. So luck is not part of the equation. If I didn’t jump into that Facebook group today and didn’t see that post, I would have missed it for years maybe. Jessica Dove London (20:56) And this stuff just is always happening. It is pretty wild. And again, the reality is that there is just information is everywhere. And I think even for people who favor research, research takes years to come out. And who decides what should be researched? When we did our first research project, when I started this work, one of the things we did is we collected patient stories of treatment reviews. popular treatment at the time, had no research behind it in the cerebral palsy space, but very low risk. It was like an intensive physio type protocol. And I actually shared this with a whole bunch of academics and a world leader came up to me and said, she’s now going to study this treatment. Because again, you know, are not academics sitting in Facebook groups. or they’re not always, know, they’re not, you know, it takes years for these things to even begin to be getting researched. However, at the same time, are, like research has been, can be very, very helpful and it can also, you know, there are definitely a variety of things out there. Some things are snake oil, some things are, some things can look like snake oil and actually be the next best thing because there’s actually a sign, you know, reason why it’s working or we don’t know why it’s working. It is very hard to decide for all of this. Yeah. Bill Gasiamis (22:17) used to be hard. Now it’s a lot easier. Thank you very much. So I’m going to share my screen now so we can have a bit of a look at what we’re talking about. Jessica Dove London (22:19) Yeah. Bill Gasiamis (22:26) so this is the screen. Now, I’ve purposely resisted from clicking on the first two weekly updates at the top because I wanna kind of tell people what happened, why they’re there. But then I wanna go all the way down to the very first catch up that ⁓ I had with the software after I was onboarded, after I answered all the questions and did all that stuff. It came to me, it said, these are some things that we found for you. And, ⁓ it said it found 18 things. It gave me this, ⁓ bar chart thingy, me jiggy here, which is not a bar chart. It’s actually an audio file telling me what it found. ⁓ and it gave me top insights, six things, and it told me one thing that was near me now, just for context. said, I’m in Australia, in Melbourne, but I said I was in New York, New York. Okay. Just so that I can kind of get a sense of what happens when people from ⁓ other places in the world do a search. I kind of have an idea that if I had done the same thing, what type of results I would have got here. But the reason I did that is because I believe it or not, stroke survivors have reached out to me from New York and said, do I know any stroke survivors in New York? I’m in Australia, in Melbourne. Like technically that answer should be no. but I know heaps of people in other areas. But what I don’t know is what’s happening in those other areas. And what Tony found was ⁓ groups, meetups or something along those lines that were happening in New York for people. So I found that really interesting. So I could immediately do that search and get that I click near you, all right, I’m not in New York guys, but if I click near you, look what it found. Hybrid event stroke support groups at Mount Sinai, Sinai, I know I butchered that, but it’s. probably an event that is happening ⁓ in that area. Union Square, I think I know what that is. I think that is in Manhattan. And then it gives its thoughts. It says, this group could help you connect with survivors for emotional regulation and post-traumatic growth. Like, what? That was like a few minutes of searching immediately now. If I had even moved. to New York, it was a brand new place where I’m living and I want to connect with people, I’ve automatically found that. mean, that is fantastic. Jessica Dove London (24:58) So Bill, when you get your update, you go to the, I found you, you can actually flick through all of the updates. And for people as well, can, if you go to click on what I found you, or if you just go back into it and then you can actually flick through them all. So you can flick through the research, the expert interviews, the patient discussions, the online events. And also for people who like email, you can get it all in an email. That’s sort of an easier experience for you, but you can just really quickly flick. Bill Gasiamis (25:06) what I found. Yeah. Jessica Dove London (25:28) through all the relevant things that have found you. And it’s just matching to what you’ve said. So you would have said all those different sort of key things that are important to you. And then the whole thing we believe is we try not to use AI to give you necessarily a generic answer. We’re trying to use AI to find you the most interesting resources that already exist. Bill Gasiamis (25:30) Yeah. Yeah. Yeah, I love it. this one, this week’s daily update. So I’ve had a few of those updates and I’ve clicked a lot of them. And they, as I was going through my mind a few weeks after I logged in for the first time, I would then put in a new search. And then the most recent email that I got or update that I got was this one here. And It has found 17 new things for me and the top insights have been updated because one of the additional searches that I put in later after I did the onboarding was about hand spasticity. And then also I did, and look at this, I did a podcast with, a stroke survivor called Jonathan and it has already found it and brought that to my attention as if I didn’t know about it. And Jonathan Aravello shares his story. That’s an interview that I did with a stroke survivor a little while ago and it already knows that it’s there. And then if you scroll down, I found if you scroll down, you just go through other things that people are talking about. Vivastim is a new product that stroke survivors are talking about because it’s an implantable and it attaches to autonomic, to the vagus nerve and somehow it supports people to improve function and it helps with neuroplasticity and all that kind of stuff. I’m just stunned by all the information that came to me and… The Onboarding Process Explained And I had a question this week in my YouTube channel. Let me tell you what it is. And let’s see if we can just do a search and find some information on that product. STC30 stem cell treatment. I’ve got no idea where to start. How would I answer that question for the person? They asked me a lovely question. What can you say about the effectiveness of STC30 stem cell treatment? So I’m getting asked like I’m an expert in these areas. I don’t mind, but that’s the kind of information that people are looking for. They’re going, how do I find information about that thing when nobody else out there will talk to me about it? They’re kind of like doing a Hail Mary shot. They’re going, I’m going to ask this guy on the podcast, maybe he knows about stem cells. Who would know about that? But check this out. If I do ask a question, if I say,tell me. about ST. C 30. stem cells. I’m going to generate. And I love this part about it too, the searching and the thinking that it does. ⁓ What specific outcomes or improvements are you hoping to achieve? And I’ll just say. ⁓ Less brain fatigue. That’s brain fatigue. Jessica Dove London (28:52) It’s okay. It’s actually you can make spelling mistakes. Bill Gasiamis (28:56) It knows it’s smarter than me. Jessica Dove London (28:58) mean, AI is very good at that. And probably for people watching this, you what would be the difference of this with ChatGPT? Because ChatGPT is amazing and it’s going to get better and better. But the difference of people to understand is we actually have an intelligent data set on stroke. So what we’ve done is we’ve taken the past 10 years of all the stroke information. So from research papers, we’ve actually gone through YouTube and found webinars with experts. We’ve gone through patient discussions, we’ve collected resources. And the reason we’ve done this is because Bill Gasiamis (29:00) Yeah. Jessica Dove London (29:27) Again, I really love Chatjibity. I highly recommend people use it. However, the difference is our belief is all voices matter. So when you ask questions, we’re actually going to give you answers from experts, from patients and from research. So that would be the difference of this tool. And the reason it can take probably up to a minute to find you an answer is Stroke actually has, I Stroke has 450,000 resources in the database that we built for Stroke. So Stroke’s a really, really big database. I mean, it’s trying to look for that answer and then it’s trying to match you to it. I think that’s just, it hasn’t actually restarted. It’s just. Bill Gasiamis (30:05) It’s doing its thinking. It did seventy nine thousand searches. Jessica Dove London (30:09) And it’s trying to just match it to your profile, give you that answer. And it can get, there we go. Bill Gasiamis (30:15) Wow. And then here we go, ST stem cells is marketed as a supplement that claims to support cellular repair and regeneration, but its efficacy and safety are not well established in clinical research. So that’s like a little bit of ⁓ initial information. And then here you go, the patient view, which is so important in this, isn’t it? It’s important to find people who may have had a procedure and have something to share about it. That’s so, so helpful. And then what the research says, how many research papers has it got here? Wow. Look at that one, two, three, four, five, six, seven already research papers. And they’ll all have links to other research papers that, you know, made those ⁓ studies that sort of give those studies the initial information to get the ball rolling on them. And then, systemic review here which check Jessica Dove London (31:15) Sometimes there’s not actually even a full paper on that. I actually don’t know this topic, obviously, but if you go up to the summary, might even say, sometimes you might learn, there’s actually not specific papers on this. However, here are papers that are relevant. you click show style. It’s on the research here. you click post. So if you go down to what research says. Bill Gasiamis (31:31) Where’s the summary? do I do that? Jessica Dove London (31:37) You just scroll down, yep. And then you click show summary, see that pink little, but here we go. It shows you research trends, key findings, unknowns and mixed opinions, and all of it’s referenced. And that’s just because again, we’re trying to show patients as quickly as possible. Is there information? Is there mixed opinions? Because I think sometimes there’s been a tendency to have one answer to these things and there isn’t one answer. And sometimes there isn’t papers, you know? So we actually have trained our tool to Bill Gasiamis (32:01) Yeah. Yeah. Jessica Dove London (32:07) to sometimes not make up answers. And so, you know, we tested it on very rare protocols and it often says, hey, there is no protocol for your subtype. However, here are protocols that are being studied in other sort of use cases. Bill Gasiamis (32:19) Yeah. And then if I do this view source, this is cool too, right? It just goes directly to the article PubMed article. And you can read that. That’s brilliant. Okay. So then, ⁓ And look, here we go again. It’s found my podcast two times here. ⁓ that is brilliant. love it. And then I did this. went, I think I went back and then I asked the question here because I had like a thing that popped up in my brain today. Right. Somebody kind of said, Hey, have you heard about that? And, ⁓ somebody did that. And, ⁓ and then I just can go. immediately into that and go okay where is it i’m just trying to search on my Jessica Dove London (33:05) While you’re searching, guess the thing that we built with our weekly tool as well, so let’s say you really want to learn about STC 30. I think that’s it’s called. You can just put that in your weekly, your profile, and every week our tool will look for that specific topic because that’s the other thing. So if you click strengthen my profile, can you see that purple box down at the bottom? Yep. If you click on strength, you click on that, you can just say, you can type anything new in here and it’s going to then keep searching it. Bill Gasiamis (33:20) How do I do that? Why would I do that? ⁓ yeah? There you go, there’s all of my data that I put in at the beginning, New York, New York, early 50s age group, approximately 13 years post stroke, all the topics that I was interested in. And where would I put that? Would I put that here, add new? Jessica Dove London (33:34) Or if you Yeah, yeah. And if you start, then we’ll know that that’s at the top. Yeah. But you can, to be act, to actually be honest, you can actually, if you go back, I’ll show you an easier way. So at the end of every weekly update, there’s a huge box that just says, me anything new. but if you go back, I’ll show you something on the dashboard as well. Yep. So if you see, do you see want to do a deep dive, see how this says update me the top on the right. Bill Gasiamis (33:52) ⁓ dashboard. Jessica Dove London (34:13) next to ask, yeah, if you just talk at it and say, I’m now interested in this as a priority, it’ll then put it at the top for your next week’s update. Bill Gasiamis (34:13) ⁓ ⁓ okay. Next question I had a day ago, somebody wanted to know about red light therapy. So why don’t I do that? If I press that and then do that, right? Click this button here. Is that the one? Jessica Dove London (34:31) Or you can talk or type, whatever works for you. Bill Gasiamis (34:34) I’m gonna talk, let’s see if it does. Jessica Dove London (34:36) Let’s see if it works with the podcast, whether it’s taken them. Yeah, I think it’s not working just because you’re doing a podcast, because you’re using the speaker. Bill Gasiamis (34:39) Alright. ⁓ no. Okay, so I’ll type I’ll just say ⁓ red light therapy. Jessica Dove London (34:53) This won’t give you an answer. This is just going to go on to your weekly update now, Bill. Bill Gasiamis (34:58) Okay, okay, so if I if I do that Jessica Dove London (34:59) Yeah. And now, yep. So now it’s actually just added it to your health profile whenever you want to know. So for your next Sunday’s update, you’re now going to have red light therapy in there. But yeah, but the reason we put the voice box is it’s actually sometimes useful to talk a bit more like, Hey, I’m thinking about doing red light therapy. I’m really worried about this, this, this, just actually giving more context. Cause at the of the day, if there’s a thousand new things a week in stroke, you know, this is just a matter of how do you, how does Bill Gasiamis (35:11) my gosh, that’s ugly. Jessica Dove London (35:28) How does any sort of system get you what’s relevant? AI for Stroke Recovery – Real-Life Applications and Success Stories Bill Gasiamis (35:32) It’s a game changer. I’m telling you now. ⁓ I mean, you know that, I don’t know why I’m telling you, but you know that this is the one that was the weirdest thing, methylene blue. Do know it’s a food dye? Sorry. No, it’s not a food dye. It’s a clothes dye. I think it’s like a Indigo clothes dye and people take it. And it’s very risky because, ⁓ it’s very few people that, ⁓ actually experiencing the exact condition that’s related to, ⁓ Jessica Dove London (35:41) Okay. Really? Bill Gasiamis (36:01) neurological dysfunction or mitochondrial dysfunction that methylene blue can help for. And then if you take methylene blue and you take too much of it, ⁓ then it decreases mitochondrial function if you don’t have a need for it. And there’s no way of knowing whether you have mitochondrial dysfunction unless you have the right kind of doctor take you through that process and determine whether your mitochondria are functioning properly. I mean, not many people have access to that, but this is what happened when I, ⁓ put that in there, came up with a whole bunch of information again. This is just like the most obscure thing that everyone’s talking about now. And unfortunately, people are taking Methylene Blue ⁓ without knowing whether or not they’re a candidate. And when they request information from me, I want to be able to give them accurate information and don’t be like that. person who holds onto the data and then doesn’t release it. But I’m confident it could say if you’re somebody considering taking Methylene Blue, do not take Methylene Blue. is so, ⁓ it’s such a nuanced bit of like tool. It’s such a nuanced tool and you need to know like the most amazing people in that space and there’s probably only two of them in the world. So it’s like great that everyone’s talking about it. But I feel really confident now about having the information in front of me to share with stroke survivors. And I would not have felt like that if this tool did not exist. Jessica Dove London (37:34) Again, you could also put that into your weekly updates so that it keeps looking for that particular topic. Because I guess the challenge, the reality is, and the challenge for all of us is we hear these things or we don’t even know things exist. And I think, you know, there is the reality. Like I think you’re always looking for that one thing as well, right? Particularly with any sort of neuro condition, you’re like, is there something really big I’m missing? Bill Gasiamis (37:40) Yeah. you Jessica Dove London (38:00) You know, is there something that could really improve when you’re facing something that maybe, maybe there’s a symptom that won’t go away or, you know, in cerebral palsy, it’s a lifelong condition. So you’re all often like, looking for that. Is there something we’re missing kind of experience or there’s a new topic. like just to give you one example, which is a real example is I was worried about my son having osteoporosis. So I told the tool, I’m worried about my son having osteoporosis. I went to the doctor’s consultant and the consultant said, don’t worry, we don’t need to scan. He said we’re going try and them. But the doctor said, don’t worry. And then the week later, my son got very bad knee pain. We ended up doing an x-ray, which showed potential osteoporosis. I pushed and we got a dextrose. And doctor rings me and he says, yes, your son has osteoporosis. And I said, what can we do to treat this? And he actually told me. we wait for children to break their bones when they have cerebral palsy. Now, if you’re a wheelchair user and you break a bone, that could be a year of rehab for your life. Now I’d put this into the tool and in the period of two to three weeks, it had found me two papers studying children with osteoporosis with cerebral palsy and an expert interview. I said to the doctor, why are we not testing his calcium? Why are we not looking at his vitamin D? And the doctor said, you’re right. We need to test those levels. Now like, One, the reality is that consultant just can’t stay to date. Like I actually understand he’s busy. He’s actually serving lots of different conditions. And so like my passion and my hope is that we can do that work for people. because I have organized my son to get these blood tests now because we’re being proactive. Cause I don’t want him to break, break his bones. You know, I care more than anybody. He, know, it’s quality of life. And also when you have a label like cerebral palsy or stroke, Sometimes things can be disregarded, you know, it’s really, they think, ⁓ this is complex. We don’t really know. Well, maybe we just haven’t read the paper from three months ago or that really useful webinar from a conference that was last week. I’m talking about that exact symptom that is legitimate. So yeah, that’s my real passion, Bill is empowering people because, know, I think we all have these stories of being disregarded or. You know, and I do have a lot of hope for the future and I love medical professionals. I have some incredible people that I work with, but curiosity is just not usually the experience of most professionals when they’re, you know, they are just humans doing their best overwhelmed and usually not fully up to date. Bill Gasiamis (40:39) Yep. And they also don’t know what they don’t know. It’s no different to us, right? If they have, if it hasn’t fallen onto their lap and if they haven’t had a lucky day where they saw an article or, know, they’re in the same boat and as frustrating as it can be, and as much as you want to kind of dude, you know, you’re the guy leading my, my healthcare, you know, like I, I’m entrusting you with more than just this blasé attitude at that, like Jessica Dove London (40:43) Yes! That’s right. Bill Gasiamis (41:06) And that’s not helpful either. I totally get it as well. Jessica Dove London (41:08) That’s right. That’s right. You want to do it together. You know, I was on a call this week with not someone from stroke or cerebral palsy, but it was a consult specialist from another disease. I won’t mention what disease, but they said to me on the call, they picked up something from their desk and they said, I have a journal sitting here from early October and I’ve been trying to read it every day. But this person is a surgeon and is very, very busy. And they were telling me to build my tool, like this tool for doctors. She was like, We can’t stay up to date and we really want to, and we do. Like she will read that paper. But it’s such a burden on healthcare professionals. So my real hope in the future is that we go to our professionals and we look together at the evidence. know, there is that, cause you know, the truth is some world leaders obviously in a lot of professionals know a lot more and their lens is very useful of going, actually that is interesting. this is something we hadn’t thought about, or let’s look at this. Just that there’s time limitation. All right, sound good. Bill Gasiamis (42:08) I know they care. And when you’re a surgeon and somebody says, ⁓ emergency just rocked up through the door and it’s 1am, they drop everything and they go right. So then you want to give that person a break as well and say to my care what what do you want to sleep tomorrow morning? Okay, no worries, by all means sleep. And it makes complete sense why a journal could be on somebody’s desk and not get read. I mean, that happens with my taxes. They’re there forever. Jessica Dove London (42:19) Yeah. actually. Bill Gasiamis (42:35) and they need to get done. And I can come up with a million things that I prioritize over that thing because it’s actually a priority. I’m not saying that I don’t pay my taxes. I definitely do. But with a surgeon, you can understand where they would rather spend their time is helping people get through that particular situation that they’re finding themselves in. the, what is it like? It’s like, ⁓ by the way, there’s this journal there yet. I’m going to spend an hour reading that. what somebody needs surgery. No problem. Let’s go. I totally get it. I get it. And this tool kind of enables patients, I think, to have more information and take that to a meeting with a surgeon with a clinical, you know, in a clinical setting, wherever they are, and begin a conversation that perhaps wouldn’t have begun again. That information then does go kind of in that Jessica Dove London (43:09) That’s right. Bill Gasiamis (43:31) either at the front of the mind of that person or at the back of the mind of that person so that they can access it when they need it and then go, you know, I’m going to be curious about that. I’m going to go down that path. Or if you take that to your doctor or a clinician or someone in that space and they say, don’t worry about that, then that’s also a good sign for I need to find a new doctor. I need to find a new clinician, someone who’s going to take the feedback and the information that I bring them seriously. Empowering Patients Through Collaboration Jessica Dove London (43:57) Yeah. 100%. 100%. I think it’s that collaboration. know, we have a person on our team right now. He’s not the most knowledgeable, but just, and he isn’t the specialist, but he’s very supportive and really wants to look at evidence and is always helping us find the right specialist. And it’s just an incredibly wonderful experience to have someone who’s on that side of always validating. then she knows that we’re reading more than she is on some of these topics. And I want to help. don’t want to be doing this alone. Like that’s the other thing you want. You want people to help you and have the answers and give you better. You know, you don’t want to be doing the wrong treatment or wasting that, you know, I always think you can’t try everything even if lots of things worked. But you can do things that don’t work or you can do things that are risky. And I think for so long, has been very risk averse. However, there are so many treatments that are You know, have huge outcomes. You know, we, one of the things we did with our son, he started school in continent. And I listened to a podcast interviewing a world leader out of UCLA. They, um, you know, we’ve actually got a lot of these stories, barely we’ve been able to talk before about some of the things we’ve tried, but it’s a, an external device giving, uh, this is a different one building what we talked about, but it’s a device you put on your back. And it was this new breakthrough about, uh, the spine is connected to motor planning and he. within two days became fully continent. And this is a $300 machine. It was free. The protocol was free and he’s completely continent at school. Like that’s his whole life changed. And the reason I did it is because I listened to a podcast with a world leader and it’s heaps of evidence. There just wasn’t yet evidence in cerebral palsy because they just brought it to cerebral palsy from spinal cord injury. And his whole life changed and I actually have a friend who’s a world leading researcher in this space in cerebral palsy and me and him have spoken about this technology and it’s very exciting. But not everyone can go and talk to this world leading research to go, yeah, this is valid. This makes total sense. You should be trying this. And so how many people are incontinent because of that one particular insight that’s not being shared. know, there’s just so many stories like this of things that are low risk, that have really good. ⁓ potential to change people’s lives. Bill Gasiamis (46:17) Yeah, that’s brilliant. We’re going to obviously get the link to that particular device and we’re going to put it in the show notes. Jessica Dove London (46:23) We should do a session just on devices. I love technology. ⁓ Bill Gasiamis (46:28) Yeah, but that’s the beauty of it, right? We wouldn’t have had that information hadn’t it been for this particular product coming up in the search in the results. ⁓ Jessica Dove London (46:37) That’s right. So one of the things I tell Tony is I want new technology and new equipment. And so last week in my update, it found me a patient comment of someone who’s built a device, a hand device to hold things and they have a web link, but they themselves went and built this device. All the plans are online. And because I’m obsessed with new technology, it’s doing that for me. I’m also obsessed with like new wheelchairs and new, you know, know, new scooters and it’s all. Bill Gasiamis (46:44) you Jessica Dove London (47:06) I love this, like that’s one of my personal sort of like things I’m always looking for. But again, that tool is doing some of that, a lot of that lifting for me, because I can’t read it all. Bill Gasiamis (47:17) Yeah, brilliant. love it. I can’t read it all either. And I definitely don’t know what the obscure things are that people ask for my podcast. And I’m expected to know which is a really, it’s a really lovely thing. Like, you know, like people are coming to me for advice and I want to, I want to be the guy I want to be the connector. want to see people to read. Jessica Dove London (47:37) You can actually share that page when you ask Tony, you can do a URL and share that for your listeners so they can get access to it. Just so you know the bottom so they can just share it and see if it’s useful or not. And that’s the thing like it’s more about is it useful or not for you. Bill Gasiamis (47:44) Yeah, I will be doing that. Yeah, I think what I’ll be doing is answering people’s questions because they’re so lovely to ask them. What I’ll do is I’ll do a search for them on tourney. I’ll record the whole thing and I’ll tell them, you know, one of my stroke survivors who listens to my podcast wants to know about this information. Give me the data. We’ll come up with some research. I’ll answer the question. And then like, I’ll feel amazing that that happened relatively quickly as well, which is going to before for me to actually my gosh, I just had that feeling where I’m like that doctor who gets asked these questions and doesn’t know. So says, my God, I’m going to leave that unanswered or or I’ll tell them there’s nothing about that that we can talk about because there’s no information. I just felt like that doctor where somebody asked him the question and I was like, I’ve got no idea what you’re talking about. Just keep doing what you’re doing or what I’m telling you to do. Whereas now that goes away. That feeling of I don’t think I can help you, goes away. We might not be able to have the answers. We might find out that in fact there is nothing available yet in that space, right? So that’s kind of where Tony will also go. It’ll go, well, there’s nothing here. Jessica Dove London (49:04) and might just find things that are related because that’s the other thing. Like if I’d asked Tony about this, this technology, it’s called spinal. It’s confusing because there’s a few things called spinal stimulation, but it’s trans trans. I’m not going to, I’ll give, can put it in a note. So it’s a technical term, but in the cerebral palsy community, call it spinal stim. Yeah. If I’d put that in, nothing would come back because it was only last year that two research papers had come out about this. However, it would find related things because there is a lot of related concepts. that particular technology and that thinking. Like there was actually a surgery of how that was using the same, doing the same amount of healing. But the benefit of obviously using a machine that you put on your back is it’s not, or brain surgery, which is hugely risky or implanting devices and all that. It’s just not always answers. There’s not always evidence, but there is things, there’s not much happening. And that’s probably my last thought to share is just. Bill Gasiamis (49:49) Yeah. Jessica Dove London (49:57) There is so much happening and I think you’ve lived this bill, like there is a lot of new technologies, new treatments, lifestyles. There’s so much happening in the recovery space and you know, there’s a lot of hope to be had. And that’s one of my biggest feelings of this tool when I use it for myself is hope. literally it found me an advantage. my son is very adventurous and wants to be a, I do not want him to be this, but he wants to be like a wheelchair stunt person. And there was an online event about teenagers getting into skate parks. And I just had such hope that there’s all these people out there trying to make like a Yeah, I didn’t attend because I’m like, he’s only 10. I’m like, no, we can’t do this yet. Bill Gasiamis (50:40) I love that you don’t want to I love that you don’t want him to break his arm roller skating. Jessica Dove London (50:47) You Bill Gasiamis (50:48) I love it. love it. That’s what normal, normal moms do. Right. But there you go. Yeah. Oh, of course it does. That’s Yeah, I love it. Absolutely. Um, that’s exactly why I like Tony because it will do things that we’ve struggled to do for a long time is find resources, information, all that kind of thing. And it’ll do it quickly and it’ll do it. Jessica Dove London (50:51) That’s right. dad does take him to the skate park. His dad takes him. And he goes down. It’s terrible. It’s so scary. Bill Gasiamis (51:15) specifically for you and it’ll send it to your inbox. You don’t have to go anywhere. Now there will be a link for people to click on and go across and get a little discount or some kind of like a, can we talk about that briefly? Jessica Dove London (51:31) Yeah, yeah. So we, this is a low cost AI tool. So we charge two US dollars a week for that weekly update. And it actually costs us $2.80 per update just because we read a million tokens per person to generate that. And we want to provide the most valuable, those value and the most accessible, valuable focus. Not everybody can be spending $30, $40 a month on the really advanced AI tools either. But you can try it for free. So you can just try it for three weeks and see if it’s valuable because end of the day, that’s all we want. And you know, we want your feedback. If you’re like, I’d love it to do this, to do that. We’re a team that really just want to, you know, that’s the beauty of being a technology team is we can build some of these solutions pretty easily. So yeah, you can go through the link and get a 10 % discount, but you can also just try it for free and see if this is valuable for you. Bill Gasiamis (52:22) Yeah, I tried it for free for three weeks and the it’s like having subscribed to the full thing because you’ve got everything that it can possibly do in that three weeks. I’ve got a really good feel for it. So I’ll have that linked as well in the show notes. And then if you’re watching this video and you want to get a sense of ⁓ what this thing is like, what it’s like when I use it, et cetera, I’ll be doing my answers to red light therapy and STC 30. Jessica Dove London (52:29) Yeah, 100%. That’s right. That’s right. Bill Gasiamis (52:49) I’ll be doing all those types of videos. People will be able to see it. The website is turnto.ai. So it’s T-U-R-N-T-O.ai. I’ll have the links in the show notes for that as well. Jessica, thank you so much for reaching out, persevering when I was being a little bit slack with my inbox and then, yeah, kind of developing this tool with your team and bringing it to us. really appreciate it. that you’ve done that and that it’s there because it’s definitely going to improve. It’s going to decrease the amount of time that I take to find information to help me as well because I’m a stroke survivor and I’ve got my own stuff I go through. So thank you for that. Jessica Dove London (53:30) been great to be here, Bill Gasiamis (53:31) You’ve just heard how AI can fundamentally change the way stroke survivors find recovery information, not by replacing doctors, but by reducing overwhelm and helping us ask better questions. In this episode, we explored why stroke recovery information feels so scattered, how fatigue and brain fog makes searching harder and how tools like turnto.ai can bring clarity, speed and hope back into the process. If this conversation resonated with you, I encourage you to explore the tool for yourself. You’ll find a listener discount code in the show notes. More information at recoveryafterstroke.com/turnto, and remember this podcast exists so that no stroke survivor ever has to feel like they’re doing this alone. If you would like to support the work that I do here, you can support me on Patreon at patreon.com/recoveryafterstroke. Your support helps me continue recording these conversations and working toward my goal of a thousand episodes. Thanks for listening. I’ll see you in the next episode. The post Tunrto.ai for Stroke Recovery: Why This Tool Is a Game Changer for Survivors appeared first on Recovery After Stroke.

Double Vision After Stroke: What Jorden’s Story Teaches Us About Brainstem Stroke Recovery Double vision after stroke is one of those symptoms no one imagines they’ll ever face—until the day they wake up and the world has split in two. For many stroke survivors, it’s confusing, frightening, and completely disorienting. And when it happens as part of a brainstem stroke, like it did for 45-year-old attorney Jorden Ryan, it can mark the beginning of a long and unpredictable recovery journey. In this article, we walk through Jorden’s powerful story, how double vision after stroke showed up in his life, and what other survivors can learn from the way he navigated setback after setback. If you’re living with vision changes or recovering from a brainstem stroke, this piece is for you. The Morning Everything Changed Jorden went to bed preparing for a big day at work. By morning, nothing made sense. When he opened his eyes, the room looked doubled—two phones, two walls, two versions of everything. He felt drunk, dizzy, and disconnected from his own body. Double vision after stroke often appears suddenly, without warning. In Jorden’s case, it was the first sign that a clot had formed near an aneurysm in his brainstem. As he tried to read his phone, he realised he couldn’t. As he tried to stand, he collapsed. And as nausea took over, his vision became just one of many things slipping away. He didn’t know it then, but this was the beginning of a brainstem stroke recovery journey that would test every part of who he was. When the Body Quits and the World Keeps Moving Even when paramedics arrived, the situation remained confusing. “You’re too young for a stroke,” they told him. But the double vision, vomiting, and collapsing legs said otherwise. By the time he reached the hospital, he was drifting in and out of consciousness. Inside the MRI, everything changed again—his left side stopped working completely. He couldn’t move. He couldn’t speak. He couldn’t swallow. His ability to control anything was gone. For many survivors, this is where the fear sets in—not only the fear of dying, but the fear of living this way forever. Understanding Double Vision After Stroke Double vision happens when the eyes no longer work together. After a stroke—especially a brainstem stroke—the nerves that control eye alignment can be affected. Survivors often describe it the way Jorden did: blurry, overlapping images difficulty reading nausea when focusing a sense of being “detached” from reality exhaustion from trying to make sense of their surroundings In Jorden’s case, double vision wasn’t the only issue, but it shaped everything that came after. It influenced his balance, his confidence, and even whether he felt safe leaving his home. Three Weeks Missing: The Silent Part of Recovery Jorden spent nearly three weeks in a coma-like state. Days blurred together. Friends visited. Family gathered. He remembers fragments, but not the whole chapter. When he finally became more aware, nothing worked the way it used to—not his speech, not his swallow, not his limbs, and certainly not his vision. This is something many survivors aren’t prepared for: Stroke recovery often begins long before you’re fully conscious. Starting Over: The Fight to Stand Again Inpatient rehab became Jorden’s new world. It was full of firsts, none of them easy. The first time he tried to sit up. The first time he attempted to transfer out of bed. The first swallow test. The first attempt to speak. Everything required more energy than he had. And yet, small wins mattered: “When my affected hand moved for the first time, I felt human again.” Double vision made everything more complicated, especially balance and spatial awareness. Even brushing his teeth triggered trauma because of early choking experiences in hospital. Still, he kept going. Life Doesn’t Pause for Stroke Recovery Just like so many survivors say, the world didn’t stop for Jorden to recover. On the very day he left inpatient rehab, his close friend—who had also lived with paralysis—died by suicide. Not long after, his dog passed away too. It felt unfair. Cruel. Like everything was happening at once. But even in that darkness, Jorden found a way to keep moving. Not fast. Not perfectly. Just forward. Learning to Walk Again With Vision Working Against Him Double vision after stroke made walking terrifying. Every step felt unpredictable. Every movement demanded complete attention. He used a slackline as a walking rail. He held onto countertops, walls, chairs—anything that would keep him upright. He practised daily, even when the exhaustion was overwhelming. This is something survivors often underestimate: Vision problems drain energy faster than physical limitations. Your brain is constantly trying to make sense of visual chaos. Of course you get tired faster. Of course progress feels slow. But slow progress is still progress. Humour as a Survival Tool Many survivors rely on humour to keep themselves grounded. For Jorden, it showed up in moments like these: His leg falling off the footrest of a wheelchair and being dragged without him realising. Gym sessions where he pushed through fatigue—even after peeing his pants slightly. Laughing at situations that would’ve once embarrassed him. Humour didn’t erase the trauma, but it gave him permission to keep going. “Now it’s me versus me. Every step I take is a win, even if no one sees it.” What Jorden Wants Every Survivor to Know Recovery doesn’t end after 12 months. Double vision after stroke can improve—even years later. Brainstem stroke recovery isn’t linear. You’re allowed to grieve what you lost and still fight for what’s ahead. The simplest achievements matter. Hope is not naïve—it’s a strategy. His story is proof that even when everything falls apart, life can still move forward. If You’re Living With Double Vision After Stroke You are not alone. Your progress might feel invisible. Your days might feel slow and frustrating. But your brain is still rewiring, still adapting, still learning. And you don’t have to navigate that alone either. Take the Next Step in Your Recovery If you want guidance, support, and practical tools for rebuilding life after stroke, you’re invited to explore the resources below: Read Bill’s Book: The Unexpected Way That a Stroke Became the Best Thing That Happened Join the Patreon: Recovery After Stroke 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. Jorden Ryan: Living With Double Vision After Stroke & Finding a Way Forward He woke up seeing double, and everything changed. Jorden’s journey through double vision after stroke shows how recovery can begin in the darkest moments. Jorden’s Facebook Highlights: 00:00 Introduction to Double Vision After Stroke 03:15 The Day Everything Changed 10:26 When the Diagnosis Finally Made Sense 16:32 Surviving a Second Stroke 21:47 What Recovery Really Feels Like 32:16 The Emotional Toll No One Talks About 44:57 The First Swim After Stroke 54:08 Finding Light in the Darkest Moments 59:28 Living with PTSD After Stroke 01:15:01 Being Told “You’ll Never…” by Doctors 01:26:40 Finding Meaning After Stroke Transcript: Introduction to Jorden Ryan’s Double Vision After Stroke Bill Gasiamis (00:01) Welcome again to the Recovery After Stroke podcast. I’m Bill Gasiamis. And if you’re listening right now, chances are stroke recovery feels confusing and isolating. I get that. I’ve been there. Leaving the hospital, feeling lost, desperate for clarity and unsure of what comes next. That’s why this podcast exists. Recovery After Stroke gives you real stories and expert insights that help guide your recovery so you can feel more confident, informed. and in control of your progress. And so you never have to feel alone or uncertain again. Today you’ll hear from Jordan Ryan, a 45 year old attorney who woke up one morning and nothing worked anymore. His story is raw, honest, and filled with moments that every stroke survivor will recognize. Fear, frustration, identity loss, and the courage to begin again. But I won’t spoil the episode. I’ll let you hear it from him. Jordan Ryan, welcome to the podcast. Jorden Ryan (00:58) Thank you, Bill. Happy to be here. Bill Gasiamis (01:01) Great to have you here. So if I recall correctly, your stroke was in March, 2024. So not that long ago. What was life like before that? Jorden Ryan (01:10) Life, I would say, was pretty normal. I didn’t have any symptoms or anything and I was a attorney. I walked to work every day about two miles and everything was going well. So right up until the night that I went to sleep, I had no symptoms at all. Bill Gasiamis (01:26) What kind of person were you then? Your routine, for example, and your relationships, where were they at? What kind of life did you lead? Jorden Ryan (01:34) I was awesome, right? No, just kidding. Yeah, they were good. Like I had a lot of friends and work colleagues and they did a lot. Like I was mostly a social person and went out a lot. So not home that much. I mean, I made a lot of friends in my loft, like down the halls were a lot of friends, but I lived by myself. Bill Gasiamis (01:55) ⁓ Well, if you thought you were awesome, I’m going to go with that. I got no problem with you thinking you are awesome. What about your health? Did you have a sense of your health? You know, we often talk about how we felt and what we were like and how energetic we were. Did you have a sense of where your health was at now in hindsight? Jorden Ryan (02:17) No, I did not. Actually, ⁓ I had a deviated septum from somebody hitting me in the face a while back from me trying to stop a fight. And so it took three surgeries to finally get it correct. Like they had to take a piece of my rib and some of my ear to straighten out my nose. But anyways, I say all that because it made me gain a lot of weight and I guess have sleep apnea. I didn’t know that, but you know, the girl I was dating at the time told me. So anyways, I got it fixed. And I had just seen a person to help me lose weight, the doctor and everybody. so I thought my health was good. And I had probably maybe a year and a half ago, I got into a jet ski, just knocked on conscious when I hit the water. So they did a cat scan and I didn’t know, but I thought that when they did that, I was fine. I was healthy. I didn’t know it would take an MRI to know that stuff. So I felt. totally fine until the event. The Day Everything Changed Bill Gasiamis (03:17) So after the nose surgery, things started to improve with regards to your weight and your sleeping. Yeah. Jorden Ryan (03:22) I don’t know that, like, I tried to get a CPAP machine before my surgery and yes, I was starting to work out more but I was still a little bit tired I guess but I mean nothing like, un-normal like, really bad or anything like that. Bill Gasiamis (03:38) Yeah, I do hear that sleep apnea is kind of that strange kind of a thing that people don’t realize they have until somebody diagnoses it and says to them, this is why you feel so drained, so tired all the time. And then they get it resolved in one way or another and things improve, especially with a, sometimes with a CPAP machine. So, ⁓ but then you’ll fit an active and you were pretty well. So take us back to that moment of that first stroke or what? What was it like? What happened? Jorden Ryan (04:08) So when I had ZPAP like to get a diagnosis or whatever they sent something in the mail and you just put it on your finger it was not as comprehensive as an actual sleep study and they said well that will be fine anyway so I got the machine it was very hard for me to sleep with so it would keep me up it did the exact opposite of what it was supposed to do so anyways that night I went to bed I had a big day the next day work call international call and I was gonna be the only one on the call, only attorney on the call. And so I woke up, I could not sleep, which was kind of normal with the CPAP machine. So I watched a movie and then went to sleep maybe an hour before it was time to wake up. And I went to bed and my alarm went off and I got up and I felt like really strange. I saw double, basically like I felt like I’d been drinking all night or something. Then, ⁓ I called into work and said, I’m sorry I cannot help you. Like, I was looking at my cell phone, which I do all the time, and I couldn’t read it or anything like that. being, you know, kind of naive, I think I took a quick shower, like, rinse some cold water on me, thinking maybe that would fix it. No, that’s ridiculous, but I thought it would, and when it got worse, that’s when I called on my one. Bill Gasiamis (05:35) Yeah, how long did they take to arrive? Do you feel Jorden Ryan (05:38) Mmm, I felt like forever, but I think it was pretty short. I lived in the city So the ambulance was right down the street. So I think like maybe 15 minutes or something like that Bill Gasiamis (05:49) Were you able to let them in? Jorden Ryan (05:52) I was, I, you know, the dispatch 911 person said to make sure I unlocked the door first. I thought I was having a stroke, but I fell down on my knees and laid against my bed and it was very difficult to go open the door to let them in. So yes, I was able to unlock the door and I did that. And I just started throwing up like more than I’ve ever vomited before in my life. Like something was really wrong. my leg went out. I didn’t know that it like couldn’t move at all. I just fell backwards and it was kidney due to throwing up. So then they came and I was still able to stand and talk and I felt, I mean, other than throwing up and double vision, I felt fine. So they told me that I was probably too young to have a stroke and that maybe it was just ready to go. So I was thinking that, okay, well I’ll just go to the hospital and you know, get checked out and I’ll come home early. But it seemed to get worse as things were going. I pulled myself up onto the gurney the EMTs had and I remember thinking like I’ve got to go to the hospital now and they were like being nice and getting my stuff and my phone and whatever else and if I threw up they were getting the trash can and I remember thinking I didn’t care if all of my stuff was stolen. I need to go to the hospital now. So we definitely got up there. When I was kind of in and out of consciousness by that time and I got to the hospital and they checked me out like an actual MRI. And when I was inside of it is when my left side of my body completely quit working. So I didn’t know what was going on. I mean, I had no clue. So I pulled myself out of the MRI. And some people get claustrophobic or whatever, but this was a square machine and because I felt sick already and half my body quit working while I was in there, it really put fear in me to get out. Bill Gasiamis (07:59) ⁓ So you had the right to the hospital, they saw you rather rapidly before they got you into the MRI? Jorden Ryan (08:10) The EMTs did see me pretty quick. They did not think I had a stroke, so it wasn’t as maybe punctual as possible. they were still… I mean, the fire department, I think, was maybe a quarter of a mile from my house. So they got there pretty fast. Bill Gasiamis (08:27) Yeah, okay. So when you got to hospital, what was that like? What happened then? Jorden Ryan (08:33) Yeah, by the time I got to the hospital, I was barely able to be coherent at all. Like someone would say, hey, Jordan, I would bring me to for a second, like, what is your phone number? And I could answer, but then I would be out again. when they were taking me to the MRI, they kind of with me. And this was the first time that I was frightened for my life. I think that one of the nurses was like, I can’t believe they’re going to waste the time to do MRI on this person. He’s gonna die anyway. There are people that need them. Machine. Bill Gasiamis (09:04) Wow, they didn’t say that, did they? Jorden Ryan (09:07) Well, I was like, couldn’t talk, couldn’t move. I don’t know if they said it for real, but I think so. I believe that’s what they said. then I was like, this is not how I die. I’ve done so much crazy stuff. can’t be just cause I was going to work early in the morning. ⁓ Bill Gasiamis (09:22) Wow. So you have a sense that that’s what they said while you’re being, while you’re on the bed being moved to the MRI. Jorden Ryan (09:32) Well, I was in going to like a holding area, like a waiting area to do MRI. Yeah. And so they left me and I couldn’t move. And so it was pretty scary. Yeah. And then after the MRI, the nurse did say, you know, we need to call your family. And so I did unlock my iPhone and I remember her calling, but it’s kind of hazy in and out of that. And I think They said, need to call the family so they can say their goodbyes. I think I overheard that. And I was like, what is going on? This can’t be this serious, right? So I really do believe I did hear that though. Bill Gasiamis (10:12) Seems like they may have very quickly upgraded your condition from vertigo, which they originally said when they arrived and seems like they kind of knew that something else dramatic was happening. Jorden Ryan (10:19) Yeah When the Diagnosis Finally Made Sense That’s correct. I wish it would have been just ready to go. Right. But it was all of a sudden went from, you know, pretty good news or decent, extremely dire consequences or like something bad was going to happen. Yes. Bill Gasiamis (10:42) Yeah. How old were you in 2024? Jorden Ryan (10:46) I was 45. Bill Gasiamis (10:49) Yeah. And do you have a sense now? Do you understand what it was that caused the stroke? We’ll jump back into Jordan’s story in just a moment. But first, I wanted to pause and acknowledge something. If you’re listening to this and stroke recovery feels confusing and isolating, I want you to know you’re not imagining it. I know exactly what that feels like. That’s why I created Recovery After Stroke to bring you real stories and insights that guide your recovery and help you feel more confident, informed and in control. And if you’d like to go deeper, remember to check out my book, The Unexpected Way The Stroke Became, The Best Thing That Happened, and support the show on Patreon at patreon.com slash recovery after stroke. Jorden Ryan (11:34) Yes, I do have ⁓ an aneurysm in my, ⁓ in the brainstem. can’t, it affected the pontine area and the salabella. Like I cannot remember the nerves. Unfortunately, I’m sorry. The veins that it’s in, but it is really big and the blood being kind of, ⁓ kind of mixed around. mean, like because my vein is so wide, the clots can form just. Yeah. Bill Gasiamis (12:03) Okay, so with an aneurysm, you’re at risk of it bursting, but then because of the different shape, the high pressure and the low pressure systems that occur in the aneurysm create a different blood flow. It causes the blood to turn into a clot and then perhaps get stuck there. And then when it gets big enough, it can break off or move and then it causes the clot. Jorden Ryan (12:31) Yeah, I don’t know if it breaks off and or just makes a clot and get stuck in there, but same concept, I think. Right. And so, yeah. Bill Gasiamis (12:40) Okay, so then you know that now after they did the MRI, what happened then? Did you have to ⁓ go through some kind of a procedure to sort out the clot and to remove the blockage and to fix the aneurysm? What was the situation? Jorden Ryan (12:59) Yeah, unfortunately they cannot fix aneurysm. They are just throwing as much medicine as they can, like all the tools that they have at the disposal at this time. But after they found out I had a clot, they’re just kind of like, let’s see what happens now. So that is when I went kind of again unconscious in probably about three weeks. I do not remember very much at all. Bill Gasiamis (13:26) Okay. Was that because they were, were in an induced coma to help you with it, with the healing? Jorden Ryan (13:32) I don’t think it was induced. think it was just my body went into a coma. mean, at the time I thought probably I was just very tired because I’d only slept an hour, but I mean, three weeks is a long nap. So a lot of my friends come in to visit me in the hospital, but I was like, I felt like just tired, but I didn’t feel bad. Like I was going to die or something. But so it was very strange because I felt very coherent. Like every day is just a different day. but my body like wouldn’t move like I could tell my left hand to move and it would not. So, but other than that, like, ⁓ I felt normal so to speak. Bill Gasiamis (14:13) I can see those three weeks. Did you have a sense that you had a stroke? Did that actually sort of say you’ve had a stroke? Did you understand that for the first time? Jorden Ryan (14:25) Yeah, I understood that I had a stroke, but I just didn’t understand what that meant. Like, for example, to sit up, which I would do in my whole life, I was not able to do that anymore. So during that three weeks, they would have a hoist system to move me to a couch. So I wouldn’t get bed sores, I think, you know, just precaution, but that was like a really scary, like I did not like that at all. was, which would normally be super easy. ⁓ Yes, they said I had a stroke, but I had no idea how bad it was. Bill Gasiamis (14:58) Yeah. family and friends. You had people rally around to do people have to fly. Excuse me. Do people have to fly in or come from out of town or were they all nearby? How, how did you go and see that? Jorden Ryan (15:13) I think that my sister put something on Facebook, on my Facebook. And so I had people close by and I did have people fly from a couple of different areas because at that time I think I was in ICU. So, you know, that may be the last chance I had to talk to me. So they did come say goodbye, but the hospital for so long, I mean, people got me flowers and I would think that would be as long as possible, but then those flowers would die. and people would bring plants and when those died, I mean, wow, that’s really a long time to be in the hospital, you know? And the plants died because I couldn’t water them because I’m paralyzed, so, at that time. Bill Gasiamis (15:54) Yeah, how long were you in hospital in total? Jorden Ryan (15:58) The first stroke I was probably, I got out May 17th, but that’s out of the inside rehab that what do you call inpatient rehabs? think that I was in hospital for maybe three weeks, maybe a month. Like, you know, they downgraded me from ICU for a week and then sent me to the internal rehab. Bill Gasiamis (16:23) Yeah, so the stroke was March 22 and then you got out of hospital in May. Jorden Ryan (16:29) That’s great. In mid-May, yeah. Surviving a Second Stroke Bill Gasiamis (16:32) Yeah. And you said that that was the first stroke. So was there another stroke? Jorden Ryan (16:37) Yeah, it’s crazy. So I had my first stroke and then I really tried hard like no sugar, no pop, no alcohol. I did everything I thought is best I could and even in rehab they had me bake cookies and I didn’t eat them because they had sugar in them. And then I had another stroke when I woke up to go to rehab. So that was October 7th. So it was, it started out with just my hand wouldn’t move like it should like I was regaining everything back pretty well from the first stroke. And I thought I was Superman basically. I was healing pretty fast and I was like, I beat it. This is great. And then right back to being in a bad stroke and being a wheelchair and all of that. Bill Gasiamis (17:25) So the same issue in the cerebellum near the pons again caused another clot or was it just something else that happened? Jorden Ryan (17:34) No, you’re right. It was the same thing, basically affected the same areas of my brain. So they say that your brain with spasticity can do like a detour. So now I have a detour of a detour, basically. So my brain had just rewired and was working pretty decently and then that area got damaged as well. Bill Gasiamis (17:57) Okay. And were you on blood thinners or something to help thin the blood to kind of minimize the risk of another blood clot or? Jorden Ryan (18:06) Yes, I was on the Eloquist, so I thought that that would be enough, but it was not. So now I am also on aspirin, but it’s just a small pill every day. I think that, like I said, they don’t really have a whole lot they can do. So they’re just telling me to take this medicine out for the best and maybe it will happen again and maybe it won’t, but they can’t operate on it because the risks outweigh the reward. Like there is a Good chance of death. Bill Gasiamis (18:37) Yeah, understood. How long did you spend in hospital for the second incident? Jorden Ryan (18:42) I was out, ⁓ towards the end of November. think mid and like either the second or third week in November. Bill Gasiamis (18:52) And then when you left hospital that time, you left with the deficits, which had kind of eased up or you didn’t really have before the, after the first one, is that right? Jorden Ryan (19:04) Yes, that’s right. I will, will wheeled out in wheelchair and had no use of my leg or my arm and my face was not really healed from the first stroke, but a little bit and I still had that too. I could not talk. I couldn’t eat. I couldn’t drink. Like, I mean, I could, guess, but not how, yeah. So like holding glass to my face would come all over down my face and stuff. so This area right here always felt wet. Like it felt like I was in a pool, even though I wasn’t. So I couldn’t tell if I had food all over me or what have you that I would have to rely on people to tell me. I could chewing a salad is, I mean, it was really, really hard. That was kind of the, as I advanced, that was something I could do. My first stroke, I could not, you know, a steady is it. I don’t know if you know what that is for using the restroom. It’s like a basically a dolly. put you on and I had a really hard time even trying to use that. I went through a lot of swallow tests. I could not swallow my own saliva. So that was very difficult for me. ⁓ They brushed my teeth and I felt like I was gonna die. I could not breathe. Like probably for that went on for like five minutes. Like, I mean, I could breathe, sorta, but it was very difficult. Bill Gasiamis (20:29) They brushing your teeth for you and it, and it, and triggered some kind of a reaction or. Jorden Ryan (20:34) Like the yeah, the saliva that you have in your mouth that is I mean was enough for me to drown in basically I guess Yeah Bill Gasiamis (20:45) So it wasn’t the actual tooth brushing. It was the saliva that was being generated that you couldn’t. Jorden Ryan (20:50) I so. didn’t know for sure what it was, right? Like, but I’m pretty sure was alive. It was something I couldn’t manage. That’s for sure. And it just tasted like toothpaste probably because I just had done brushing my teeth. But they did give me a peg tube so I could get food and nutrition and water in me. However, the way that they installed it the first time was ⁓ caused ulcers in my… I think in my colon, so I had to go back to the ICU. Bill Gasiamis (21:24) Yeah. Such a dramatic time, right? A lot of stuff going wrong. What’s going through your head at the time? Because you went, like we said, like it was a year earlier, everything was going fine. Everything was all okay. And now you’re dealing with all this stuff. How do you, you know, what are you saying to yourself? How do you feel about what’s happening to you? What Recovery Really Feels Like Jorden Ryan (21:47) I wish that I could give you like a really good answer, but to be honest it was more like, why is this happening to me? I can’t believe this is happening. I’m too young. Like I have to take decent care of myself. I cannot believe this. I mean, when I was in the hospital, I was watching like my 600 pound life and like, I’m just saying that I was, I thought, you know, at least that healthy, but at that time I was really devastated by what was going on. Bill Gasiamis (22:16) Yeah, you would be, it makes complete sense, right? How do you go from being quote unquote normal? Everything’s just going along as it always has. And now all these hurdles that come your way that are really challenging to overcome. you probably don’t have the skillset to deal with them in such a dramatic short amount of time. Jorden Ryan (22:17) Yeah. Yeah, I think that’s right. And I think probably if it would have just been on me, maybe I could have, but I was like, I’m going to be such a huge burden to my family in my way life is going to be so bad. Like, I was just like, how is this happening? You know, I don’t smoke and like, I don’t do heavy drugs or any of that stuff. So what is going on? And then they said, well, you must drink a lot of energy drinks. And I was like, no, I don’t drink any energy drinks. So they’re like, we don’t know what’s going on then. So just that was. So for me, I really didn’t know what was going on. Bill Gasiamis (23:15) Yeah. And in hindsight, it was just random. It’s just one of those things with the aneurysm and how can you possibly, how can you possibly deal with it when you don’t know that it’s happening to you? Similar to me, like I had a brain hemorrhage three times because of a blood vessel that I was born with. I wasn’t having the best lifestyle, but I also wasn’t causing it. I also didn’t. I wasn’t able to solve it. Everything was kind of handed over to other people. It’s not, it was nothing. It was not up to me. And I had to just kind of go through it. Jorden Ryan (23:51) Very similar. was, you know, couldn’t be in charge or control anything basically, like even really simple things. I mean, I had a diaper on, I couldn’t even go to the restroom by myself. So it was just very hard. It was a lot of stuff all at once, right? Like, it wasn’t just like I a cold or something. It was very difficult. And at first, when I was there, I couldn’t talk. So people would come and visit me but and to me what’s very strange is that my voice sounded exactly the same before the stroke which it didn’t in real life I was probably like I have no idea what I sounded like but people couldn’t understand me so I would say something to them and they’re like sorry I can’t understand you but in my head I said it perfectly it sounded like me I can hear ⁓ like my slur now but I could not at first Bill Gasiamis (24:47) Yeah. Yeah. It was there somebody that you met who helped support you and guide you through those really sort of tough bits early on, like was there kind of a mentor or somebody that came out of nowhere and just helped you navigate this? Jorden Ryan (25:06) ⁓ I don’t know really like who navigated like how it happened, you know, I had a chaplain that came in there maybe a doctor would help I Didn’t have my phone or anything at the time But when I was able to do that I saw your channels and stuff and so I listened to it and probably the totality of a lot of things there wasn’t like a one person or one thing that helped me really a lot so I remember being kind of upset at you because you said it was the best thing that ever happened to you and that was it was too new for me. I was like, what do you mean? That’s not possible. And a nurse came and said, well, you have the beautiful blue eyes and that my eyes are green. So I was like, well, maybe my hair will grow back and I’ll have blue eyes. Maybe it’ll be the best thing that ever happened. But yeah, I mean, I wasn’t really mad at you. I just said the time I could not accept those that verbiage. Bill Gasiamis (26:02) that is perfectly understandable. And it’s exactly why I chose the title, not to piss people off or make people upset while they’re recovering. In fact, I never expected that people would find it so early on in their journey. I just thought it was a story I was gonna tell and it was gonna go out there. But of course, the very first time I spoke about my book a few years ago on YouTube, the very first comment was a negative comment along the lines of, Similar to what you said. It was a bit more rude. It wasn’t so polite ⁓ And I and I was like, ⁓ no, no, no, you guys have got it wrong I don’t think I think you missed the boat. No, sorry. You missed the point the point being that It was really terrible when I was going through it for three years But when I came out the other side, there was a lot of personal growth. There was a lot of ⁓ Things that I had appreciated that I’d done that I’d learned that I’d overcome etc that became the reason why I was able to say it was the best thing that happened to me because I started a podcast, I wrote a book, I’ve spoken publicly about it, I have this platform, I’ve created a community, all these things, right? So the things that I didn’t know that I was lacking in life before the stroke, I thought my life was complete, waking up in the morning, going to work, coming home to the family, cooking dinner, paying the bills. paying the mortgage, the car lease. I thought it was all cool, all complete, but I was kind of unhappy. There was a lot that I was lacking in my life. And only because of the stroke journey, the end result of the podcast, the book and all that stuff, did I realize, ⁓ actually the… Aftermath, the things that I have grown and discovered were the best things that happened to me. And it was because of the stroke. It’s such a weird and dumb thing to say. Like I can’t even wrap my head around it, that I had to go through something so dramatic to accomplish some amazing things. I wish I would have just done it before the dramatic events. I wish there didn’t have to be one. And that being said though, I’m 13 years. post stroke, the first one, and I still live with the deficits. I still have problems sleeping on my left side because it’s numb and it’s burning and it tingles and all that kind of stuff. When I get tired, I still have balance issues when, ⁓ you know, sometimes my memory is a bit flaky because of it, but you know, a little bit, I still have deficits in my muscles and spasticity and all that kind of stuff and it hurts. I’ve accepted that part of it. how it feels in my body, but I’ve also ⁓ gone after the growth. Like I’ve really, ⁓ seriously, dramatically gone after the post-traumatic growth that comes from a serious episode. And what I hope- Jorden Ryan (29:10) explaining that in other episodes. was just my friend that I had heard and I was still like too bitter to hear that. Right. And now I kind of make sense. Like there are a of things that I didn’t appreciate as much as I should have. All the cliches, know, kind of true. Like I wake up and like that is a good day then because most of my stroke, both of my strokes came from when I was sleeping when I woke up. So kind of like Bill Gasiamis (29:21) Yeah. Jorden Ryan (29:38) Even being in the hospital, I saw more sunsets than I did in my regular life or post stroke, whatever you want to call it. I definitely get it and I can appreciate what you’re saying now, but after that time, was just more difficult. Bill Gasiamis (29:45) Yeah. I definitely come across people regularly, even though ⁓ I’ve been speaking about it for a little while, who come across the first podcast episode that I’ve done, that they’ve found in the 370 odd. And then they hear me say that again. And then there’s also, there’s sometimes a repeat of that incident where I know exactly where they’re at. Like I know exactly what’s happening. I know they don’t know that. And then what I hope that happens is say in three or four years, they can, when they go, there was that crazy guy who said stroke was the best thing that I wonder what that was about. I’m going to go get that book now and I’m going to read it. And I’m going to see if I can, you know, shift my mindset from perhaps something that’s been bugging me to something that we can grow from. And the book has got 10 steps to recovery and personal transformation. It not 10 steps to getting your perfect walk again, or making your hand work perfect again, or you know, getting rid of your deficits. It’s not that kind of book. It’s an inspiring book. We’re trying to give people some tools that they can use that doesn’t cost them any extra that will improve the quality of their health and their life. And it doesn’t matter how injured you are because of a stroke. That’s what the book helps people to do. I love challenging people. I’m not, of course, you know, I’m not intending to make people think that I promote. stroke is something that they must experience as ⁓ you know. Jorden Ryan (31:23) the ⁓ Bill Gasiamis (31:26) Yeah. ⁓ It’s not on audible. I am going to remedy that at some stage. I’m going to remedy that and I’m going to get people the ability to listen to it because ⁓ Jorden Ryan (31:46) Well, I will be your first customer, hopefully. Bill Gasiamis (31:49) Yeah, a he-man. Jorden Ryan (31:51) cannot read because my eyes are cro- like not crossed but I have double vision so they are off I cannot read so but yeah Bill Gasiamis (32:01) ⁓ After your three weeks in ICU the first time, I think you began inpatient rehab. What were those days like going through that first few motions of trying to get yourself up and about? The Emotional Toll No One Talks About Jorden Ryan (32:16) Yeah, it was very emotional, right? because you want right away, I thought just to get back to where I was. And I mean, I read some other things and I had friends of friends send me stuff and that chapter of my life is over. I mean, it was a good one, but it’s time to rewrite another one, right? Like I have to move forward. So the whole journey was really difficult. Probably took me longer than most people, but, ⁓ I was very lucky in the fact that I had a friend that had told me like, hey, you have done hard things before you were, you know, in Muay Thai, you were a attorney, you can do it again. And then in my mind, I was like, you’re not a brain doctor. What are you talking about? Leave me alone. So even though the expression was being really nice internally, that’s what I was thinking. Then I saw something like, um, it was, you know, I think it was a PT, a physical therapist who said, think that you’re gonna heal yourself in three hours a week or a day or whatever, that’s not it. Then I had another friend who told me that his sister had a stroke and she wished she would have done more during recovery. So I eventually got to the point thinking like, well, all these doctors are saying it depends, which is a fair answer, right? And I tell clients that and they hate it. But I thought that’s better than absolute no. They’re not saying and so they’ve made it to me like, well, maybe I won’t get better, but it’s not going to be from me not trying. I think another one of the people on your episodes ⁓ saying like they were always very positive and I was like, that’s not me. That’s I’m not 100 % going to be better. That just wasn’t my attitude during it. I mean, it’s good. wish I would have been, but unfortunately I wasn’t. But it kind of. Over time it’s gotten better, but at first it was very difficult for me. Bill Gasiamis (34:17) Yeah, that’s completely understandable. ⁓ You had, did you have some small wins in rehab that kind of made you shift a little bit slowly and kind of realize you’re making ground or things are, you’re overcoming things. Jorden Ryan (34:35) Yes, I did. I was very lucky in the fact that, I mean, I would just notice my therapist face like when my affected arm started to work or I did something, they didn’t say like, that’s unbelievable. But it was kind of like I was making progress faster than a lot of people. And I’m not saying I’m better. I was very lucky and I would never come to other people, but they were like, wow, that’s really amazing that you’re able to do that. So it was, it felt good. Being able, like, even just to move my finger, like, in my defective hand for the first time was huge, and then I was able to use my thumb to… I feel human again. I mean, to be honest with you, when I couldn’t talk and I couldn’t move and everything, it just felt weird, like it wasn’t me. Bill Gasiamis (35:22) Yeah, absolutely. So were there some setbacks during that time as well? Jorden Ryan (35:27) There were some setbacks. I, again, I watched one of your episodes and a gentleman told me, like I said, he had the fatigue set in later on in his journey. And so one of the things I was like, well, I’m so lucky that I don’t have that because I go to the gym pretty often. And that would be devastating to have fatigue. And then I also had fatigue. I mean, to the point where I didn’t want to move around at all. didn’t want to get out of bed hardly so there’s setbacks in the fact that like my my sister and brother-in-law luckily took me in I mean they were like ⁓ angels so to speak but they live in a big one bedroom app like one one floor house I meant to like a ranch style and just going to the bathroom was a setback because it would take forever to walk down the hall or whatever I mean it was my gate it was a walking style was Pretty hilarious there, you saw me. Bill Gasiamis (36:27) And then fatigue doing that walk also then ties you out. Jorden Ryan (36:34) Yeah, just walking to the bathroom did tire me out. So, like, to brush my teeth, I’m already scared of, like, not feeling well. Plus, walking all the way there and brushing my teeth and walking all the way back, it would be… I would really have to get my strength together to do that. Bill Gasiamis (36:53) A journey, a proper journey. Jorden Ryan (36:55) I had to do it because I didn’t want to wet myself or soil myself, but it was very difficult. mean, looking back, it’s like, wow, that stuff was so easy now. But at that time, it was not easy. was very difficult. Bill Gasiamis (37:11) Yeah. I remember being in a similar situation and I don’t have that far to go to the toilet from my couch where the lounge room is and the TV is. But I remember going to the toilet and getting back to the couch and then being completely wiped out. that’s it. I was done for hours, done for hours, just sitting there resting and then hoping to get enough energy to get back up off the couch and be okay. Um, that was very early on. That was probably a few, maybe about four five months after the second bleed, it was still very dramatic. And I couldn’t really appreciate how ⁓ I took for granted that trip before that. Like it was just, it never crosses your mind. Jorden Ryan (37:55) You wouldn’t even think about it, right? Like getting out of a car to walk to the house was very difficult for me. Or when I came back, I would just fall on my bed because I was worn out. But before that, before my stroke, I would not ever think about that kind of stuff. Yeah. In a wheelchair at first, but I walked around the house with a walker and like two laps inside the house would wear me out. That’s maybe one. Bill Gasiamis (38:11) Yeah, hell no. Jorden Ryan (38:24) Like, one hundredth of a mile is not much, or not even close to a kilometer, and that would wipe me out completely. Bill Gasiamis (38:32) Yeah. You find yourself thinking about the steps that you’re taking. Are you putting a lot of brain energy into the actual task? How your leg is moving? What was the process like for you? Jorden Ryan (38:44) Yes, my- so all the things that your body does without you thinking about were affected in me. Like blinking, I have to think about it. To move my arms at the same time, I have to think about it. So to walk was- I had to really be like, okay, which foot goes first? Left foot. Okay, now what foot goes next, right? It sounds ridiculous, but that’s really what I was like. My mind was, I had to think every time like learning to walk. I was like, what hand goes in front? with what foot? Like it was, I mean, very, very basic, like to the beginning, right? Like before elementary school, like it was, so everything I did was taxing mentally because I just had to think about stuff that you don’t normally think about, right? Like Okay, I should breathe. It wasn’t quite as bad as that, but that’s pretty close. Bill Gasiamis (39:37) Wow, So in the notes that we shared between us, you mentioned something about the first time you were taken out of hospital ⁓ to go and eat, I think. Tell me a little bit about that story. What happened then? Jorden Ryan (39:53) Sure, so I noticed, to start a little bit further back, I lost my hearing. It wasn’t when I first had my stroke, but when I was in rehab, they were actually changing my diaper. And so I would lay on each side and I noticed when I laid on the side, I could not hear them. They were telling me to roll over or something. And so I had lost my hearing completely. Then, um… When I got out of the hospital, my friends and family and whatever got together and took me out to eat and the noises were so loud that my senses were too heightened. It was confusing to me. I had a lifetime of going out to eat with friends and going to drinking or whatever. This was just a lunch and I couldn’t really handle it. It was almost too much for me. The car ride from maybe a three hour car ride, had to close my eyes because I would feel sick if they were open. it was, I realized just how different my life is gonna be, right? Bill Gasiamis (40:59) Yeah, did that make you want to avoid those types of events? Jorden Ryan (41:02) Yes, I have to push myself to do that kind of stuff because I don’t know, I think it’s easy to become depressed, right? Like, it’s easy to just be like, I will just sit here on the couch, watch TV. I don’t really watch TV, but… And even that is hard with my eyes doubled, but I mean, like, I push myself to hang out with friends or go to eat or something. But it’s very difficult. I would rather just stay home. If you just ask me, like… I mean, I’m always excited to go out with people, that’s not what I mean, but it just is easier to stay home. Bill Gasiamis (41:37) Yeah, I understand that easier to stay home. It’s a trap as well, isn’t it? It’s a, if I stay home, I don’t have to deal with all those difficulties, all those challenges. I don’t have to overcome anything. I can just have the easy way out. But then that you pay a price for that as well. That’s not, it doesn’t work like that. You have to pay the price of, well, then you don’t go out and then you’re alone again. And then you’re in your thoughts again. Then you don’t interact with people again. And It’s not the easy way out. seems that way, it’s potentially leading you down a path that you don’t want to go down. Jorden Ryan (42:11) You’re exactly right. I tell people that because I’m so lazy, I try so hard now because I don’t want to have that life like that forever, you know? So I try very hard now so I can be lazy if that makes sense. Bill Gasiamis (42:26) That makes complete sense. love it because it’s kind of like you’re lazy. Jorden Ryan (42:31) Right, exactly right. You know, because going to the bathroom, if that’s hard forever, that’s gonna be terrible. I gotta get up and walk and have to go out with people. then life is not as hard, hopefully, because you’re doing the things, right? So. Bill Gasiamis (42:47) Yeah, yeah, and you’re getting all the genuine awesome things that come from interacting with people, going out, being ⁓ in public. ⁓ I know what you’re saying about the kind of the earning our lazy kind of thing, right? Because I would say to myself, ⁓ Saturday, I’m gonna go hard. Now, hard for me might’ve been just to literally go to an event and stay an hour longer than I normally would have stayed, whether it was a family event, a party or whatever. And then I’m gonna be really exhausted tomorrow. I know that tomorrow I’m gonna be really, and I’ve got nothing booked in. I’m gonna do absolutely nothing for the entire day so that I can go out and go hard tonight, whatever tonight looked like, whatever that was gonna be like. And that was where I earned my recovery, my lazy. I’m sitting on the couch and I’m watching TV or I’m reading a book or I’m not doing anything. That’s exactly how I kind of used to talk to myself about doing nothing on the following day. Jorden Ryan (43:54) That is a good way to put it, earn your laziness. Like that is exactly what I did. I did something hard or out of my comfort zone and then when I was lazy I felt better about it. If I just wanted to stay home and watch TV, I mean I would have won the lottery basically, you know, like that would be my life. But because that is not what I want to do, doing hard things and then being lazy is a good way to look at it. It would make me feel better about myself. people and everything just kinda makes it harder to be depressed. Bill Gasiamis (44:32) Yeah, agreed, 100%. I would encourage people to get out as much as they can. ⁓ Now, I’m very interested in your thoughts about this. Your first swim, I wanna know what that was like, cause I had a first swim as well. I remember my first swim after waking up from surgery, not being able to use my left side and needing to rehabilitate it. ⁓ What was it like for you to experience that? The First Swim After Stroke Jorden Ryan (44:57) Yeah, so I’ve been swimming before I can remember when I was a kid. So like being by a pool was very scary for me because I thought if I fell in, I could not like get out. And I got in the pool with a life jacket to try to walk and doing I don’t know what this stroke is called where move both arms like that. But only one would work at a time. But I’ve been doing it forever. So it was so strange to be in the pool and not both my arms work together. It was almost like I didn’t expect that that late in my recovery It was not that long but still it was strange to me probably maybe a month after I got out of the hospital so luckily my mom took me to the pool quite a bit and Pushed a wheelchair even though it’s really heavy and she is older so Bill Gasiamis (45:50) Yeah, I went to the pool for the first time during rehab. They asked me if I had anything particular I wanted to work with or a particular exercise I wanted to do. And for me going into the pool, I felt safe that I couldn’t fall over. So we kind of did aqua aerobics and my left side wasn’t working well, but in the pool you couldn’t tell that it wasn’t working well. then put on a, it just felt normal. It felt normal. It kind of. ⁓ appeared like it was working normally, but it felt strange because the water pressure on my affected side, that was different. Feeling the water pressure on my affected side for the first time was really strange. What was cool about it is they gave me a life vest, so there was no chance of falling over, drowning, dying, or anything like that in the water. And it was really a real relief because my body felt really free for the first time. And then as I got better and we started to get out and about, One particular summer we went to a ⁓ waterfall here near where I live. And in the pond at the bottom of the waterfall went for a swing. But the difference is ⁓ fresh water ⁓ is different from salt water. And I had never swum in ⁓ fresh water. Jorden Ryan (47:11) Yeah, there’s a big difference here, right? Bill Gasiamis (47:14) Wow, you’re heavier, you sink quicker. And I went for this very short distance swim and I was completely out of breath and fatigued like really rapidly and needed somebody that was with us to help me get out because I hadn’t realized how much more taxing it would be to do the swimming motions or do all those things and stay afloat. ⁓ And it was really scary because it was the first time I learned that. Jorden Ryan (47:17) Yeah. Bill Gasiamis (47:42) I am not as capable as I used to be ⁓ in the water. Jorden Ryan (47:47) Yeah, I think that brings up a good point for me is that people that try to help me tell me like, be careful. There’s a table there or something like very obvious, right? But they don’t know what I’ve been through and what I can see what I can’t. have to be ⁓ appreciative of them saying that stuff instead of annoyed. Like I usually am so yeah. I did a triathlon in the ocean and it was so much easier. I was pretty happy. I was the other way around. I’m used to swimming in fresh water and then in salmon and salt water and that was all post stroke. But I can know what you mean. There’s a huge difference. Bill Gasiamis (48:27) What’s your Yeah, you’ve done a triathlon post stroke. Jorden Ryan (48:33) No, I’m so sorry. I meant before stroke. ⁓ Yeah, I did one back when I was healthier, but it is hard for me to even raise my arm. I can kind of do it now, but so I just did water aerobics actually today. And I mean, I am the youngest person there probably by seems like 30 years, but in the worst one there, like you can definitely tell I have a stroke. Yeah. Bill Gasiamis (48:59) Yeah, yeah, yeah, yeah. What’s cool about, what’s cool is that now there’s competitions where people can go and compete ⁓ after they’ve been, like the Paralympics is a classic example, right? And all the events leading up to the Paralympics where people can go and compete, get physical, even though they have deficits. That wasn’t something that was possible decades and decades ago. It’s a fairly new thing. I love that even though people are injured and they’ve had difficult times, perhaps their limbs aren’t working correctly. Some people still decide, I know I’m gonna be a competitor still, I’m gonna be with one arm, with one leg, with whatever my, whatever I have left, I’m gonna do the most I can and compete as much as I can to be the best in my particular sport. I love that about the things that people can access today about participation in sport, even though they’re injured. Jorden Ryan (50:02) Yeah, for me, it is much different. Like I used to be a very competitive person and now it’s me against me, right? The me against the stroke or whatever. Like I don’t care that somebody can run really fast. Like, I mean, that’s good for them, but for me getting outside and even getting to the event was difficult. Now to, you know, sit in a tricycle or whatever it happens to be is just, it’s more like a golf or something like that where it’s just you against you, you know, so. It is good that they have that kind of stuff, I think. Like, I’m looking at bikes for mountain biking with three wheels and stuff, so. Bill Gasiamis (50:39) Yeah, I love what you just said you against you. It’s like you against your mindset. Jorden Ryan (50:45) I think it’s just… I don’t want to say me against the world but everything is so… ⁓ difficult I guess? Like everything is a win so if I get in a car to go to the event if I get a bike that I can ride even a tricycle like that’s win if I can finish the event well that’s a win before it was like what place that I get now that’s not important to me I mean sure I guess is this not as important as it was before. Bill Gasiamis (51:15) Yeah, your priorities have shifted. Jorden Ryan (51:18) Yeah, very much so. Like, I think that I have a lot more empathy for people that are disabled. It just clearly opened my eyes. And even though I work in the law, I am used to disability act or whatever. And I was like, these people, now I totally get it. You know, so I understand like why they should have these laws in place. So here in the States, I mean, Bill Gasiamis (51:44) Yeah. Yeah, same with us in Australia. mean, there’s lots of laws to try and protect people who have a disability of some kind, injury, whatever you want to call it, so that there’s less discrimination, so that there’s more services, so there’s more access. ⁓ It’s one of the best conversations that people have because they kind of say, well, we know that this particular service that is going to be provided is going to be provided for all the population and 93 % of the population, for example, it’s not a real number, will be able to access it beautifully. What about the other 7 % who are not gonna be able to access it? We need to think about them. We need to think about how they’re going to go about ⁓ traveling on this service or accessing this service or getting in and out of this particular office or building and all that stuff. is taken into consideration in the design and planning phase now. So you can move around Melbourne, my hometown, in a electric wheelchair or a regular push wheelchair. And you will not have to worry about getting on a train, getting on the public transport, a bus, the tram, ⁓ going down a curb, all the curbs are ⁓ angled down. So this beautiful, nice smooth path towards the road and then up again. Jorden Ryan (53:13) Yeah, that sounds very nice. I think I was just ignorant to people’s needs, I guess. And now I learned firsthand how important they are, right? So I was just like, man, that’s a lot of money to do that. But it makes sense if someone says, well, we have 99 bathrooms, but you can’t use any of them. It doesn’t do me much good, right? So to have this kind of, yeah, right. Bill Gasiamis (53:22) Yeah. Yeah, what’s the point? Finding Light in the Darkest Moments ⁓ Now, the thing about stroke is that unfortunately life doesn’t get put on hold for us to recover from it and then let us get back into life as if we were okay. And I remember going through the third bleed and then a couple of weeks later, literally two weeks later, I think, maybe about a week later, my mother-in-law passed away. And then we had to have her funeral before my brain surgery. and my wife had to deal with all of that, right? You also, you lost one of your friends soon after you got out of, I think it was at rehab. Jorden Ryan (54:19) It was the day I got out of, ⁓ like inside the hospital rehab, inpatient rehab, like he was a good friend and he also had, I think a something to do with he had a tumor on his spine or something that was removed, but it left him slightly paralyzed. Like he was, he had both arms and I remember being in the hospital being jealous of him because Such a little thing like, wow, this guy can go to the bathroom by himself. I wish I could do that, right? But unfortunately, yeah, he died by suicide the day that I got out. It was devastating and very hard. I mean, that was somebody I planned on spending a lot of time with because he lived in the same city that my sister took me in that I was going to hang out with. I mean, not just about me. It was just sad that that happened, obviously. Bill Gasiamis (55:14) Yeah, of course, man, that’s pretty sad. And also, then your dog passed away. Jorden Ryan (55:22) Yeah, so this guy, he had told me my last message with him, well almost last was, we didn’t ask for this, but we’re gonna get through it together. And then, you know, he took his life, so that made me seem like, what should I do now? Then my dog died, which was a big deal to me because, okay, now I have all this time to pet him or play or whatever, and you know, it was pretty dramatic. dick dab that, but I felt like I was in a country song. Bill Gasiamis (55:55) How did you get past it? Jorden Ryan (55:56) I don’t know, think that you you kind of learn to just roll with the punches as I say because there’s so much in life that I can’t control that I mean, just, stuff happens right? You just have to do your best and I try to tell people like, it’s very easy to be in darkness or the negativity but it is my job to open up the light, open the window or whatever, not literally the window but to see all the good things that are happening. around me. So I mean, there are so many amazing things. So I have to open that up and not stay in the darkness too long. I can’t stop from happening personally, like this part of my life, but I can get out of it. Like luckily I have those tools, so to speak. Like I can be like, okay, this is happening. This is amazing. Or my family is healthy or whatever it happens to be or just people being really nice, seeing that, right? But I did have, my hand was like clawed and I would open the door and some people were nice and be like, let me get that door for you. Well, I cannot open my hand to let go of the door. It would almost knock me over several times. So kind of funny. Bill Gasiamis (57:13) always funny opportunities like to things to laugh at in that moment. I remember being wheeled in my wheelchair when I first got out of hospital, out of the hospital ward and we were just going around the hospital grounds just to get some sun. My wife was pushing me and I couldn’t feel my left leg and it fell off the, you know, where the feet sit in the wheelchair, the footrest. It just fell off the footrest and it was getting dragged. beneath the footrest and kind of the wheel of the wheelchair and it was kind of getting dragged and I couldn’t feel it had no idea but my wife was struggling to push the wheelchair Jorden Ryan (57:54) She’s like, is wrong with this? It’s so hard. Bill Gasiamis (57:57) She was going, well, this so hard to push. And then we had to have a look around and realize the reason it was hard to push, because my foot is under the wheelchair and I have no idea that it’s there and it’s getting stuck. ⁓ We laughed about it because what else are you gonna do at that moment? It was pretty ridiculous and funny at the same time. Jorden Ryan (58:16) That is exactly right. I would say that if I had to give credit to one thing, it would probably be my odd sense of humor now, right? Like there’s so many things to laugh at that it’s hard to say, Matt. That situation you had, it could have been really devastating to you or whatever, or you can be like, that is pretty funny, right? So I had something similar happen to me. My foot came off the wheelchair, but it just stopped. I didn’t feel it. my leg, but I mean, it felt like I ran over a rock or something like, so similar, not the same, but similar to me. Like, didn’t know if my leg would ever come back, you know? So people are all different levels of their journey. Like I was not upset, but I was surprised to see people in patient rehab. They could walk so well. like, Hey, we are really struggling over here. We’re in a wheelchair. That’s not the right attitude to have, but that’s how it was, you know, Bill Gasiamis (59:12) Yeah, absolutely. Jorden Ryan (59:14) are fine, get out of here, let us sick people alone, leave us here, so. I mean, I am lucky in the fact that I’m getting a lot more back than I thought that I would, so everything from now on is icing on the cake, so to speak. Living with PTSD and Double Vision After Stroke Bill Gasiamis (59:28) Bonus for sure. I think you talked about PTSD around brushing your teeth, right? How does that show up in your daily life? Do you have moments when that kind of rears its ugly head? Jorden Ryan (59:42) Well, I just moved into a new house and the bathroom is right next to it and it’s not so bad now. But when I had to walk and it was more difficult and I had PTSD and self-diagnosed. So I don’t even know if it’s a real thing. It was very scary, right? Like it would almost like give me nightmares. It was so scary. Bill Gasiamis (1:00:05) This triggering more than anything, was it? Jorden Ryan (1:00:08) Yeah, that’s right. Triggering, guess, is a better way to say it. Yes. So I would be worried and I would be like not wanting to go brush my teeth, even though I know that’s part of hygiene and very important to do. Right. So now I don’t I think I’ve brushed my teeth enough without having a problem that it’s okay now. But at first, like it was extremely difficult. I had the swab things that look like big Q-tips in my mouth. they would say, use this to pull out the saliva and the, you know, whatever it was. So that’s how I would, I had to brush my teeth like that, then wipe it out. And it was much different feeling. mean, there are so many odd things that happened I can’t remember. And I wanted to tell people on your broadcast because, you know, it is difficult to lay there and be hurting and like so bad with your deficits and seeing a lot of people that are healed because you don’t know if you’ll ever get there. So I wanted to say that just because like you are bad and your deficits are bad, there is help. There’s a chance. I don’t know for sure everybody, but there is, I think hope is, I learned about it in the hospital and I think that it’s very important to know that there’s possibility of getting better. Bill Gasiamis (1:01:29) I love it. You worked in law. What kind of role did you play? Jorden Ryan (1:01:34) Basically it looked at contracts to make sure that that was it. I had a… My work is actually surprisingly amazing. Like I worked for the company for about a year and a half. My company sent me get well cards like every week for like six months. Like I couldn’t believe how amazing they were. Because when I was stuck in my bed during like 4th of July, which is huge here in America. At least I had the cards to look through, know, so that was very nice. But my actual job role was I worked with a small team here and we did contract work to make sure that there wasn’t anything that was, you know, bad for us. Bill Gasiamis (1:02:18) Everybody ⁓ who works uses their voice. We communicate with it. We ⁓ express ourselves. ⁓ We argue with it. We do all sorts of things with it. Voice, right? So so important, right? To have your voice. What was it like when you realized that your speech was different and that, did that kind of shift your identity or make it feel like it was different or changing? How do you deal with it? Jorden Ryan (1:02:48) Yeah, actually I that was one of the most pressing things like my leg not working my arm not working my eye not working was like Okay, but did not be able to talk like the people that flew in and I can’t even say hi or thank you for coming or anything It really made me not feel like a human to be honest with you. I just It was a terrible feeling and so it was that was one of the main reasons that I didn’t want to go on basically because I couldn’t communicate at all. Some people have it where they can’t think words or where they can’t do the, I mean, I couldn’t say anything. it was very difficult, it was very hard to not be able to talk to people because I do communicate every second of my life as far as I know. So to not be able to communicate at all, it was very difficult. I had to point at things and try to write stuff out even though I couldn’t write. So it was… pretty hard. Bill Gasiamis (1:03:48) Yeah, pretty hard. Indeed, were you guys using boards or any particular devices to help with the communication in early days? Jorden Ryan (1:03:57) In the early days I had a board but because my right hand was also affected with my salivator I think this had like 25 to 50 percent I couldn’t write with either hand so it was chicken scratch that you could barely read or anybody could barely read so as much energy as it was like it didn’t really make sense to do. They had something on my face the vital stem is what it’s called to help be able to swallow. And luckily, think that helped my, you know, it’s hard to say what heals you because there’s so many things that play a part in it. But I was able to, somebody could understand some words that I said at least. So that was a very positive start. Bill Gasiamis (1:04:45) Yeah. Let’s talk about your rehab and your process. Tell us a little bit about what worked for you and why. Jorden Ryan (1:04:56) Yes, let’s see, I lived in an area that was very cold and my doctor at the time said we’re not gonna do telehealth and that was very difficult to go out in the cold and my body would freeze up and what have you. So that was not good, I had to switch that. My first thing that really helped was I had a slack line. It is basically a dog run for lack of better way to say it. And I had a harness and that I put on the slack line was about waist high. and I just walked and I did that because there was a rail at the YMCA that I walked by and I was like, wouldn’t that be nice if I had an outside rail that I could just use to walk and so I had slack line and then underneath it, I wore it out like a dog or a cow walking all the time and like because I could not use my my left leg was not very strong at all but it was getting stronger. You know, I tried to jump like up and I could not even inch vertical it was zero and I couldn’t bend my legs up so I think that was the start of something that really helped me because I could go do it like any time of day or night I mean I didn’t do it 2 a.m. but I did it it was easier to do instead of having to rely on someone to give me a ride somewhere ⁓ Bill Gasiamis (1:06:17) Yes slackline. Jorden Ryan (1:06:19) What? Bill Gasiamis (1:06:20) Get a slackline. Jorden Ryan (1:06:22) I got it off of Amazon. Yeah, just put it up there. But I didn’t use it like a slackline. didn’t watch. Bill Gasiamis (1:06:25) Okay. Yeah, I understand. ⁓ I just didn’t know it was a thing that you could even get one. I mean, I’ve never had one. I’ve never thought about one, but like it makes complete sense now, but I didn’t realize. I should have realized that you can get everything off Amazon, but that’s all right. I was just trying to wrap my head. Jorden Ryan (1:06:49) There are tons of things I didn’t think of right so I mean everybody Usually thinks of something that works for them But the slackline with it being strong enough to hold your weight walking on it was strong enough to hold me up and so it was really fantastic and I could tell if I was gonna get tired and I had a place to sit out there and so it was really good I mean when I first started that was that was all the rehab I needed kind of to me. I had also a A thing that is battery operated that sends like so your hand will go like this I can’t remember what it’s called it’s like vital stem but just on Amazon too and I would work that every day tried to get my hand to open and tried to because they try to get you to turn a key imagine a key like you’re starting your car but with your other your affected hand and this would help that like it would wake up those muscles so kind of Bill Gasiamis (1:07:49) Yeah. Jorden Ryan (1:07:50) So that was very helpful too and I got some I guess I would say they’re kind of like child’s books. There were stroke books on Amazon as well or I would draw. And it was so scary because I was always told use it or lose it. And I was like, well, what about sex? Like, mean, I didn’t say that probably because I was too embarrassed, but to keep hearing use it or lose it forever, like and not have a girlfriend or a wife, I was like, well, am I never gonna have sex again? And that was very scary to me. Bill Gasiamis (1:08:23) Yeah. Do that remedy itself. Is that something that’s happened since then? Jorden Ryan (1:08:27) It is, it has not happened yet, but I don’t have the same concerns that I had. Like I think to say it politely, I think that I’m able to perform in the bedroom. don’t know though. So maybe I’m going to say that I can’t just to feel better about myself, but definitely my libido or whatever has gone down, you know? So, ⁓ it is what it is, as they say, like maybe it will pair, maybe it will not. don’t know. Bill Gasiamis (1:08:57) Yeah, I know these things change. Sometimes libido gets definitely, not sometimes, often. For both men and women, libido gets impacted negatively after a stroke. And it can recover as well. But there’s also, for men, there’s also things you can get to help you. ⁓ It might be that you need to have your testosterone looked at. It might be that you need to have a Viagra if necessary. There’s ways that you can get around it. Jorden Ryan (1:09:21) The testosterone is hard for me. say with my ⁓ aneurysm that I should not take testosterone even though it is now. But you’re right, all the other things, the Viagra, what have you, yes, you can do that. It was somewhat scary to me because a neurologist, brain doctor, had told me that stroke should not affect your sexual ability at all. I was like, well, maybe I’ve been in the hospital so long, that’s the problem. And so I just didn’t, I mean, as you know, you just don’t know. So hopefully, yeah, I will be able to talk to the doctor about that. I think after being in the hospital the first time, my modesty is kind of out the window. Like I had to do so many things in front of nurses that asking difficult questions is not as difficult as it once was. Bill Gasiamis (1:09:57) Yep. Yep. Yeah, I imagine having had your diaper changed by a nurse at the age of 40 something is probably one of those moments that kind of says, well, I’ve done that. If I’ve done that, everything else is a piece of piss, so to speak, after that, as we say. Jorden Ryan (1:10:27) Yeah, you’re right. Right, that’s exactly correct. Bill Gasiamis (1:10:39) I hear you. ⁓ So after being discharged, right? What was it like to navigate your life again on a daily basis? How did that feel? What was it like to go through regular, well, quote unquote, regular life again? Jorden Ryan (1:10:56) ⁓ it was very difficult for me. I was lucky that I don’t have a wife or maybe unlucky and children. So, you know, sometimes I would just stay in bed or I would just listen to a book on seat or I guess MP3 out of a bubble or something like that. And, ⁓ everything, it was extremely difficult for me. Like I said, I would try to get my, the first one, I to take my walker. It’s so scared because when you’re in the hospital, Everything is with somebody like you can’t get up out of your chair. You can’t go do anything So all of a sudden you’re just you’re free like go ahead And like the same day or the day before this was a big no-no now. I can just do it and like yep so I mean, I’m still scared to cut things with the knife like vegetables stuff because I’m on blood thinner and I don’t want to have an accident I mean you don’t know what you don’t know so I cognitively, I think that I’m there, but I also think that could walk, right? And that’s not true. So I don’t know what could happen and what could not happen. So rehab is just, I try to do, be dangerous, the safest I can. Like I walk, but I try to make sure that I can grab onto something or if I’m gonna like try to walk, I can fall or I’ll be by my bed or something like that. And so it is difficult to try to be by myself even now. It’s been a over a year. Bill Gasiamis (1:12:24) It sounds like it’s good therapy even though it’s difficult. Jorden Ryan (1:12:28) Yeah, it is. think that was one of the very positive things about living by myself was that I don’t have an excuse to not do anything, you know, because people are really nice and they’ll take care of you and maybe overly sometimes not because, I mean, they just don’t know. And I’m not going to say no necessarily, even though I should. I don’t have the choice. You know, I have to do it. let’s see that learn how to do it because I, my right hand is still pretty good. when they say they tie their hand up or whatever. I didn’t do that, but I imagine having kids would be difficult for me because I couldn’t barely do things with my left hand. Like, forget it. I would just do it with my right hand. anyway, I say that because yes, I am learning a lot more now, even though ⁓ it has been over a year. It is scary to read stuff, facts, I think that are outdated that say, you know, your height and specificity is a year. Then after that, Probably not as much. Things aren’t gonna happen as fast. I have not found that to be true, but who knows? Bill Gasiamis (1:13:36) Some of those old sayings are, I think, outdated as well. And one of the most outdated, most ridiculous things that you hear is when doctors say, you’re probably not going to get any better than that. That still happens, even though that should have stopped in 1933. It’s ridiculous that people still say that, but they do. I don’t know why, but they somehow get embedded in language, some of these things. Jorden Ryan (1:14:03) I was told that just I think this month actually because they have a device that they can put in your neck and it messes with your vagus nerve I think. And yeah and the doctor said well you’re not gonna get any better than you are anyway so don’t worry about it. And that was like okay like like he was like that’s the best like I said did I work on it still he’s like nah that’s the best as it will get. thought I mean Bill Gasiamis (1:14:13) Yeah, we’ve a ste- Being Told “You’ll Never…” by Doctors Jorden Ryan (1:14:33) it, I can take that verbiage, luckily, and use it for proving him wrong. Right? Like, I think it would be easy to be down again. And instead, I’m just like, well, I’m going to show you that you don’t know what you’re talking about. Even though this person has way more education than me. And, you know, kind of on a pillar or a platter, like higher up or whatever you want to say, just like, well, here what you had to say to me. But you know, I think that If I did have cognitive issues, I would really have a hard time going through the medical system and especially what doctors say. It is, I mean, it is scary. I’ve had more doctors than I can imagine, different cities and different areas and they say different things. So again, I took that to my advantage of I got to choose my own destiny instead of a doctor saying, that’s the best you will get ever. It’s like, yeah. Bill Gasiamis (1:15:29) Yeah, I love it, man. That’s the best way to go about it. I’ve spoken about it so many times on these podcasts, people saying, hearing dumb stuff from doctors. And then it’s like, I don’t know. I don’t know why it still happens. It shouldn’t be happening. I’d love to get a doctor when they say it, pull them aside and go, that’s the dumbest thing you could ever possibly say to a human being. Never say that ever again. ⁓ I kind of did that when I had thyroid surgery. I had half of my thyroid removed ⁓ just before my after my stroke, my brain surgery about a year and a half later. And the surgeon came in after we’d done all the tests and she was trying to encourage me to have the surgery. And she said, we’ve got the results from your tests. They’re inconclusive. So she goes, But that doesn’t mean it’s not cancer. So it could be cancer and it could not be cancer. And then she closed the door and walked out of the room and I was. Jorden Ryan (1:16:35) Yeah, you decide. Bill Gasiamis (1:16:37) And I was in the room with one of her, I think you guys might call them attending, just a very fresh new doctor that’s learning. And she looked at the young doctor looked at me with horror, shock horror. And I looked at her and I said, don’t ever do that to a patient ever. Don’t worry. I said, it’s not your fault, but that’s disgusting what she just did. That’s terrible. So then I waited for our meeting, which was gonna be about. 10 or 15 minutes later. And when we went in the meeting, ⁓ the surgeon came to me and said, ⁓ hi, how are you? How’s things? And I said, look, I’m okay, but I need to talk to you about what you said to me earlier. She goes, what did I say? I said, you said you dropped the C word, then you closed the door and you walked out. Jorden Ryan (1:17:27) Yeah, that’s pretty big word. think even bigger than the other C word. I think that is pretty bad. Bill Gasiamis (1:17:34) I said, you can’t do that. You can’t do that to a human being. Now I’m not the kind of guy that would get offended or upset about that because I know it’s not cancer, even though you don’t want to rule it out. But that’s not how you have a conversation with a human being. Let’s do me a favor. Let’s rewind and go back to the beginning and let’s talk from scratch. I’ll come in the door, you introduce yourself again and we’ll start off like that. And we did that. ⁓ We a little role play. She was devastated at the same time, but I think that was a little lesson that made her think about maybe be careful with what you say in front of patients who could be vulnerable in your care. They’re in your care, so they’re vulnerable. They’re coming to you for support, not for trauma. Jorden Ryan (1:18:06) Yeah. Yeah, I think I need you to go to my appointments with me. Tell the doctor some of these things because you’re right. Some of them do say stuff that is… I don’t know if they don’t know that it’s outlandish or they just do it so often they don’t realize it but when you are a patient and you hear something like that it’s a big deal. They say it like it’s nothing but yes of course it is a possibility but you know come on but… I have all these surgeries they can do for me ⁓ such as a cochlear implant where I can hear out of this year because it’s so difficult but I can’t not come off the blood thinner. So there’s only a 5 % chance that I could have another stroke or so they say but man the strokes are hard. I remember walking around the YMCA one lap was no 10 laps was a mile and I was like this is crazy because I could only do maybe two with my uh, Walker, and I heard you saying that you learned to walk twice, I was like, oh, I don’t think I could ever do that. And, uh, I remember thinking, I guess I would do it a hundred times if I had to, but boy, I sure wouldn’t want to. Bill Gasiamis (1:19:35) Yeah, I actually didn’t learn to walk twice. I learned to walk a second, once only. So maybe I explained it a little bit incorrectly or something, but yeah. I know people that have though. I definitely have interviewed people that have had to go back again and go again and go again because they kept having multiple episodes. So. Jorden Ryan (1:19:56) You were my full model. So, no, I’m just kidding. I had to do it, you know, two other times other than when I was an infant, whatever, baby, whatever, it was so… ⁓ Bill Gasiamis (1:20:09) I don’t care if you got it wrong and I was your role model and it didn’t happen. It was just imagined. I’m glad that it worked out for you. Jorden Ryan (1:20:16) I should say thank you because people were like, I can’t believe you’re doing so much and you’re doing so well after my first stroke. And so when I had my second one and it put me right back in a wheelchair, it was so much harder. Like it was hard to explain how much difficult it was. People say like, well, you already know what to expect, even though I didn’t because it’s the brain, like who knows what it is. Like it was much harder. Bill Gasiamis (1:20:18) Great. It’s more injury, it’s less brain that you’ve got to work with now every bloody time. Jorden Ryan (1:20:49) Right, so even though got back quick after the first one, the second one was so much harder mentally and physically and all that kind of stuff. But yeah, you were, you inspired me one way or the other. Bill Gasiamis (1:21:05) glad. I didn’t really care how I did it as long as I did it. Jorden Ryan (1:21:09) Outwalking was, you know, a nice thing to see. Like, you do some of your podcasts, I think anyway, if it was you, maybe I’m confused, that you do some outwalk outside. Bill Gasiamis (1:21:19) Walk. Right? I did, yeah. They’re my favorite ones to do, but they’re the hardest ones to do as well because ⁓ they require you to be really in flow and out of your head. So if you’re thinking about what you want to talk about, it’s really hard to do it. And also I get really self-conscious when people walk past me and I’m talking to a stick ⁓ and a camera. It’s just a bit weird. I know heaps of people are doing it and they’re comfortable with it and it’s good content because I know people love watching it, but it’s just so hard to do. And especially in winter, like I don’t want to be outside doing that stuff in winter. I don’t mind sitting down here and doing it. I will do some more walking once. I definitely will. But I think I’ll prefer to find somewhere where that’s a little more secluded where I don’t have to worry about people coming into my frame or into my field of view or something like that. It’s just so hard. Jorden Ryan (1:22:16) Yeah, well, I just appreciate it for sure, because when I was learning to walk, could not. Having a phone in my hand was a pipe dream, so to speak, because I had to look every step, every inch to control my body. So to even think about having a phone and walking was so difficult. So seeing you outside and enjoying the nice weather was a treat for me. I’m not saying you have to do it anymore. was, you know, it’s out there to see for people. So that was really good. Bill Gasiamis (1:22:45) I will, I definitely will though. ⁓ What kind of guy are you becoming? How would you describe yourself today? Jorden Ryan (1:22:53) ⁓ How would I describe myself? I don’t know. I don’t think that I’ve tried to do that. So I will try to right now. I just think Perseverance, mean water I just whatever comes at me. It’s just more of a well, okay Let’s see what we can do about it. Like before it was not like that I would try to stop life from happening, but Unfortunately, I don’t have that kind of power life happens, right? So I’m more like well I can only do what I can do and like the rest, whatever. You know, so that I think that’s the kind of person I am now. It’s been a major mind shift, totally different than what I was before. And instead of worrying about every little thing or maybe I won’t wake up tonight. mean, I just let’s get, let’s go after it. Let’s get it done. Right. So I don’t know. It is scary too. It’s sometimes to go to sleep because I have my CPAP machine on. And then I’m like, maybe this will cause another stroke. Maybe I should stay awake. That’s ridiculous, I have to get some sleep. But I’m just, now I think that I just do it, you whatever it happens to be. Whether it happens to be walking down the hall or it happens to be, the good thing about me now is that I don’t care what I look like. I don’t care about like… I have my why or whatever and so nothing else matters, right? I’m dialed in. Like I don’t care if I have food on my face or like one bad example is I was working out the why and workout was like standing up. It wasn’t hard. It wasn’t like hardcore aerobics or anything. And I peed my pants a little bit. Like instead of not working out and not doing anything and going home, I just was like, ⁓ I guess, I mean, it wasn’t like all over the equipment or anything, but. It was enough that I was like, okay, I will stay at the gym and get things done where before I would never do that. Bill Gasiamis (1:24:51) Yeah, I love it. David Goggins, you know David Goggins? mental runner who doesn’t stop running under any circumstances. Nothing is going to get in the way. That was very Goggins-esque what you did. ⁓ I paid my pants. So what? Keep going. Jorden Ryan (1:25:12) Yeah, I mean he’s a little bit crazy as far as I know but yeah, maybe I am more like him now I mean it was like well that that happened. Let’s keep working out. That’s what I came here to do so and again people are like why are you at the why for three hours and you know, just standing there was workout for me it was not Like I went and ran seven miles an hour or something for the whole time just being away and out of the house and trying to do something so I’m very dedicated to try to get better. Bill Gasiamis (1:25:45) Yeah, a marathon can look different for everybody, you know, it doesn’t have to be 42 kilometers. A marathon can be literally just getting out of bed today and going to the toilet and then doing it quicker tomorrow or feeling safer tomorrow or feeling more stable tomorrow. know, that can be the marathon. It doesn’t have to be a feat of endurance that lasts for 42 kilometers. It can just be, got up, I got out of bed, I succeeded. and tomorrow I’m gonna be better at it. Jorden Ryan (1:26:17) I love that and even if you are worse at it, like the desire to get better at it the next day, like it’s just a totally different mindset. can’t, I wish I could put it in a book or be good like you and do podcasts, but it is completely different. Like if I did worse, it is still like, okay, well tomorrow I’ll do better. It’s okay, no, it’s not a big deal. Finding Meaning After Stroke Bill Gasiamis (1:26:40) Yeah, yeah. If you could distill your recovery into one lesson or gift, what would it be? Jorden Ryan (1:26:45) Boy, that’s pretty difficult. I would say that, I don’t know, maybe love is my religion or I think just being alive is enough sometimes, right? Like, okay, I am not who I used to be. I could either be sad about it forever. I could be like, hey, I’m alive still and I get to see my nieces grow up or I get to see amazing things. can still, and you know, I about lost my… vision the second, well both times, you know the second time and I was kind of pretty upset because one thing of me all the way through my body was messed up and I was like well if only my both my legs were good that would be great right or both my arms were good I could at least do the wheelchair pause like pretty good or I wish both of my eyes were tight I could read what I have all this time off but none of the I was thinking how selfish is that? I mean I have one thing that works so I need to get it together right and live the best life that I can. I think that is probably what I would say one sentence is ⁓ live the best life that you can. Whatever you’re into if it’s doing nothing then it’s fine but if it’s just be happy be content of what you have. Bill Gasiamis (1:28:05) That’s beautiful, mate. And on that note, thank you so much for joining me on the podcast. I really appreciate you sharing your story. Jorden Ryan (1:28:12) I really appreciate what you’re doing, like not just to boost your ego, I mean you’ve really helped me a lot so, and hearing other people’s and getting through so thank you so much for your time and have a good Bill Gasiamis (1:28:26) Well, thanks again for listening to Jordan’s story. His journey through two strokes, double vision, fear, setbacks, and the fight to stand again is a reminder that recovery isn’t linear, but progress is always possible. If stroke recovery feels confusing, isolating, I completely understand. I’ve lived that part too. That’s why recovery after stroke exists to give you real stories and insights that guide your recovery so that you can feel more confident, informed, and in control of your progress. If you’d like to go deeper, remember to check out my book, The Unexpected Way That a Stroke Became the Best Thing That Happened. You can get it at recoveryafterstroke.com slash book and support the show on Patreon at patreon.com slash recovery after stroke. Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed. All content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gassiamus. The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. 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Hemorrhagic Stroke Patients Recovery: Jonathan’s Journey Through Chaos and Renewal When the clock struck midnight on January 1st, 2021, most people were celebrating a fresh start. Jonathan, at just 35 years old, was unknowingly entering the most challenging chapter of his life. His speech had begun to slur, his head pulsed with pain he couldn’t explain, and within hours he was rushed to the hospital during the height of COVID restrictions. That moment was the dividing line between the life he once knew and the life he would rebuild from the ground up. This is a story about what hemorrhagic stroke patients recovery really looks like, the kind that forces you to confront who you used to be and decide who you’re going to become next. Before the Stroke — A Life Built on Momentum Before everything changed, Jonathan was thriving. He worked in food science — a field he loved, filled with global imports, inspections, and ensuring food safety for the public. He enjoyed hiking, biking, dinners with friends, and a vibrant social life in the city. He’d finally built independence, moved into his own space, and was exploring a new relationship. His life had rhythm, structure, forward motion. But as many survivors later recognize, stroke doesn’t appear at a convenient time. It arrives abruptly, often when everything seems stable. And for people seeking to understand hemorrhagic stroke patients recovery, this contrast before and after becomes a core part of the journey. When the Body Sends Signals In the days before the stroke, something felt off. Jonathan experienced intense migraines, stronger and stranger than anything he’d felt before. But like so many young survivors, he didn’t recognize them as warning signs. Then, on New Year’s Eve, his speech began to fall apart. Words wouldn’t line up. Sounds emerged out of order. His girlfriend noticed instantly: something was horribly wrong. In minutes, Jonathan went from preparing to welcome the new year to being rushed through hospital doors under strict pandemic protocols. He had no idea this day would reshape him forever. Early symptoms often become the first chapter of hemorrhagic stroke patients recovery, because they reveal how quickly life can break open. The Diagnosis No One Expects at 35 Doctors discovered an AVM — an arteriovenous malformation on the left side of Jonathan’s brain. It had ruptured, causing a hemorrhagic stroke. The bleed had stopped on its own and even drained naturally, something his neurologists called miraculous. Still, the damage was significant: His speech was severely impaired His mobility weakened His memory disrupted His emotional world destabilised He heard the words “hemorrhagic stroke” and “AVM rupture,” but they didn’t make sense at the time. Many survivors describe this moment as surreal, as if the diagnosis is happening to someone else. “When your own words disappear, your whole identity feels like it’s gone with them.” Recovery in Isolation — A Stroke During COVID After only seven days in the hospital, Jonathan was sent home in a wheelchair. There were no open rehabilitation centres, no inpatient programs, and no in-person speech therapy available. Therapists arrived at his family home wearing full PPE, “like a movie scene.” Everything felt unreal. Occupational therapy Physiotherapy Cognitive rehabilitation Speech therapy (virtual for an entire year) Social work support Nutrition guidance All delivered at home, all while the world was shut down. This is the reality for many navigating hemorrhagic stroke patients recovery during unpredictable times: healing becomes a collaboration between professionals, family, and faith. Losing Everything — And Feeling All of It The physical deficits were challenging, but the emotional costs cut deepest. Jonathan lost: His job His independence His ability to drive His long-term relationship His financial stability His sense of identity Anger, sadness, frustration, and confusion were constant companions. These emotional injuries rarely show up on scans, but they shape recovery just as strongly as the physical ones. And like many survivors, he wondered: Who am I now? Will I ever get myself back? This is where recovery becomes something deeper than rehab. It becomes a reorientation of the self. The Turning Point — Gratitude and Mindset Shift One of the most powerful moments in Jonathan’s story came when he realized he could walk again. And speak again. And see his family. And simply breathe. He realized: I am still here. I have another chance. Gratitude is rarely the first emotion during a stroke recovery. But eventually, it becomes one of the most transformative. Mindset is one of the greatest predictors of hemorrhagic stroke patients recovery, not because positivity fixes everything, but because a resilient mindset helps survivors keep trying even when the path is uncertain. I’ve been there myself. When I experienced my strokes, I knew instantly that certain habits and patterns in my life had to change. Not because anyone told me to, but because something inside me shifted. You begin to recognize what no longer serves you. And you begin to aim your life differently. Faith, Identity, and Rebuilding From the Inside Out For Jonathan, faith became a compass. He studied scripture. He leaned into prayer. He found community in his church and mentorship in his pastor. Whether someone practices religion or not, the principle is universal: Recovery requires trust — in yourself, in the process, in the possibility of your future. Faith, in its many forms, becomes a stabilizing force in chaos. From Survivor to Guide — Serving Others Through His Pain As Jonathan regained strength, he realized he wanted to give back. He became a volunteer with: March of Dimes Canada Heart & Stroke Canada He now supports survivors aged 20–80 in both English and Spanish, one of the most unique and powerful aspects of his journey. The moment a survivor steps into service, their recovery deepens. Helping others expands meaning, connection, and purpose. I saw this in my own journey when I became a stroke advocate and launched this podcast. Jonathan discovered a simple truth: Helping others helps you heal too. Visit: recoveryafterstroke.com/book patreon.com/recoveryafterstroke Building a New Life — Marriage, Mentorship, and Hope In 2024, against all expectations, Jonathan got married. He started his own mentorship initiative for survivors, still volunteers across Canada, and continues to rebuild his life with clarity and gratitude. His story is less about “getting back to normal” and more about discovering a new, purposeful version of himself. What Jonathan Teaches Us About Hemorrhagic Stroke Patients Recovery Recovery is not linear. Identity gets rebuilt, not restored. You don’t need to do this alone. Emotional healing is just as real as physical healing. Gratitude can shift your entire experience. Community accelerates recovery. Most importantly, your life didn’t end with your stroke — a new one began. A Young Man’s Fight Back: Jonathan’s Hemorrhagic Stroke Story A young survivor’s journey shows what hemorrhagic stroke patients recovery can look like — courage, faith, and rebuilding life step by step. Instagram Youtube Facebook TikTok Website Support The Recovery After Stroke Podcast on Patreon Highlights: 00:00 Introduction to Jonathan’s Journey 01:31 Life Before the Stroke 05:41 The Day of the Stroke 14:02 Hemorrhagic Stroke Patients Recovery 23:05 Emotional Challenges Post-Stroke 31:38 Overcoming Bad Habits and Health Challenges 37:38 Finding Purpose Through Volunteering 45:31 The Role of Faith in Recovery 55:32 Understanding Suffering and Connection to God 01:01:01 Building Community and Fellowship 01:05:31 Future Goals and New Beginnings Transcript: Introduction to Jonathan’s Journey Bill Gasiamis (00:00) Today’s episode is one that really stayed with me long after we finished recording. You’re going to meet Jonathan, a young stroke survivor whose life changed in a moment he never expected. And what makes this conversation so powerful isn’t just what happened to him, but how he tried to make sense of it, rebuild from it, and eventually find direction again. I won’t give away the details. That’s Jonathan’s story to tell. But I will say this. If you’ve ever struggled with the fear, uncertainty, or emotional weight that comes after a stroke, You may hear something in this journey that feels uncomfortably familiar and surprisingly reassuring. Now, before we get into it, I want to mention something quickly. Everything you hear, the interviews, the hosting, the editing, exists because listeners like you keep this going. When you visit patreon.com/recoveryafterstroke, you’re supporting my goal of recording a thousand episodes so no stroke survivor ever has to feel like they’re navigating this alone. And if you’re looking for something you can lean on, throughout your recovery or while supporting someone you love, my book, The Unexpected Way That a Stroke Became the Best Thing That Happened is available at recoveryafterstroke.com/book. It’s the resource I wish I had had when I was trying to find my way. All right, let’s dive into my conversation with Jonathan now. Jonathan Arevalo, welcome to the podcast. Jonathan Arevalo (01:23) Yes, hi there Bill. Bill Gasiamis (01:26) Jonathan, tell me a little bit about what life was like before the stroke. Life Before the Stroke Jonathan Arevalo (01:31) Well, life before stroke at 35 years old was good. It was really good. I had the opportunity to travel a lot and also I worked for a company related in foods. And it was something that I had a passion for since I studied that in university when it came to studying chemistry. biology and also food sciences. And during that time is what led prior to my stroke, which was in January 1st, 2021. Bill Gasiamis (02:14) So you did, ⁓ you worked in food sciences. What kind of work did that involve? What does a food scientist do? Jonathan Arevalo (02:24) So for that type of job, worked as ⁓ specifically, it was QA coordinator, which I was in charge of all food products that come from all over the world into Canada, where I had to do audit checks, inspections, and make sure that every single fruits and vegetables had to meet the requirements, which are government requirements, and also meeting specifications. for the safety, the safety before it goes out to the public. Bill Gasiamis (02:57) Wow. Was that a government job? Jonathan Arevalo (03:00) It was not a government job. It was more of a food company that is known all over North America. Bill Gasiamis (03:11) So just a very popular food importer for example that brings different products in and you’ve got to check them and inspect them So what do you do you opening boxes and looking literally at the food before? ⁓ gets the tick Jonathan Arevalo (03:26) Yes. So before anything gets accepted, ⁓ I receive C of As, which are certificate of analysis that come from different countries. And I need to go through all of those to make sure it meets government regulations and at the same time for the health and safety. So all of that, ⁓ I had to make sure both reading it and as well physically inspecting myself. Yeah. Bill Gasiamis (04:01) I understood. What about home life? What was that like? How were you? Where were you living? Who were you living with? Jonathan Arevalo (04:08) Yes. So when it came to that, I was living in the city and I was living with ⁓ an ex-girlfriend who I was during that time. And what it was, it was a different change in life where I started to adjust a new relationship. And at the same time, I was adjusting in building my independence outside from home. and starting like my own life differently. But everything went well until things started to change when it came to relationships and also work and also other things that came along with it over time. Bill Gasiamis (04:58) What did you do for downtime? Do you have some hobbies or are there some things that you enjoy doing after work or on the weekend? Jonathan Arevalo (05:07) Yes, yes. Usually, ⁓ would mostly hang out with friends, go out to meet up with friends to different places. We’d go out for dinner, out in the city. And also, I was very active, so we would go to different trails to do hiking. ⁓ Or also biking, like riding the bike and all that. So different activities like that to stay active. The Day of the Stroke Bill Gasiamis (05:41) Do you remember the day of the stroke? did you start noticing something going wrong? What happened on that particular day? What was different about that day? Jonathan Arevalo (05:52) Yes, well leading to the stroke, was more during Christmas time. So in ⁓ this exact same time in December, where it was leading to my stroke that I started to get certain signs of, I wasn’t too sure what it was though, because I was getting some headaches and something very intense that I never had before, which are migraines. And that was leading prior to the stroke and starting the new year. so then pretty much like on the 31st, leading to January the 1st, was the moment that I had my stroke. And then my ex-girlfriend who I was with during that time, which is already almost five years, ⁓ she noticed that my speech was, was, was going off. I had a lot of slurs in my words. I was getting like very intense headaches and it just didn’t seem normal. So she started to question and ask me questions that didn’t, didn’t make sense. So she automatically ended up calling emergency and I got rushed, ⁓ through emergency to, the hospital. starting the new year. Bill Gasiamis (07:22) Well, so first of January 2021, was it? Jonathan Arevalo (07:27) Yes, January 1st, 2021. Correct. Bill Gasiamis (07:30) Wow, man. First day of the new year, straight into hospital. Jonathan Arevalo (07:34) straight to the hospital, but not only straight to the hospital, but it was also during the time of COVID. And so that made it even more complicated because in the hospital, there was different cases going on at the same time. And whether it’s doctors, nurses, or different people entering and going out, ⁓ there was Bill Gasiamis (07:42) Uh-huh. Jonathan Arevalo (08:04) a lot of restrictions that was going on that certain people weren’t allowed to go in unless it was an emergency purposes. And also I had to wear a mask and all that because they weren’t sure whether I had COVID or it was something else. Bill Gasiamis (08:26) So do you, is this a story that you remember or somebody has told you about what happened that day? Because sometimes people hear the story from others, but they don’t remember going through it or what they were thinking or what they were feeling. What were you thinking or feeling during this whole thing with the strange migraine and then being taken to the hospital? Jonathan Arevalo (08:49) Yeah, for me, I slightly remember since I had ⁓ very, very like, like vague ⁓ scenarios that I was ⁓ that I still remember. But there’s other occasions that I don’t remember anymore. Like I lost a lot of that memory during that period of time because it happened so quickly that that it was also a first time experiencing having a stroke. But I do remember like certain scenarios of being picked up from paramedics and then being rushed to the hospital. And then from there, not that much what happened afterwards, are certain things that I’ve forgotten or it’s hard to remember. Bill Gasiamis (09:46) Yeah, so you’re in the hospital. Do you understand when they tell you that we’ve discovered that you’ve had a hemorrhagic stroke? Like, are you aware of that? Or is it just noise? What’s it like to be told that you ever had a bleed on the brain? Jonathan Arevalo (10:04) Yeah, I find it that it’s very hard to understand that because I didn’t know what a stroke was in that time. And not only a stroke in general, but also the type of stroke that I had, which was a hemorrhagic stroke. But not only was it hemorrhagic stroke, it was as like the couple of days passed by, I was also transferred to another hospital since the hospital where I was at, didn’t have the adequate ⁓ neurologist and specialist for stroke. So I believe it was on the third day or something like that. I was taken to another hospital where they do have specialists, neurologists and all that related to stroke. So they took my case because it was something very important. And at the same time, they didn’t understand how I survived it as well because it wasn’t just a stroke on the left side of my brain. They found that it was an AVM. So it’s called anterior venous malformation, which could be caused from childbirth. As you get older, it could start to develop where you really don’t know because it’s internal. So what triggered it was an aneurysm that made it rupture. Bill Gasiamis (11:43) We’ll be back to Jonathan’s story in just a moment. wanna pause for a second and ask you something important. Why do you listen to this podcast? For many people, it’s because they finally hear someone who understands what they’re going through or because they learn something that helps them feel less alone in their recovery. And here’s the part most listeners never think about. This show only stays alive because of people like you help it keep it going. There’s no big company funding it, no medical organization covering the costs. It’s just me, a fellow survivor doing everything I can to make sure these episodes exist for the next person who wakes up after a stroke and has no idea what happens next. When you support the podcast, you’re making sure these conversations stay online. You’re helping cover hosting and production fees, and you’re making it possible for new survivors months or even years from now to find hope when they need it most. Hemorrhagic Stroke Patients Recovery Some people think my support won’t make a difference, but that’s a misunderstanding. Every single contribution is what keeps this podcast available for free to the people who need it most. And if you want to go even deeper on your recovery, you can also grab a copy of my book, The Unexpected Way That a Stroke Became the Best Thing That Happened at recoveryafterstroke.com/book. Yeah, I know all about arteriovenous malformations. That’s why I’m… talking to you on this podcast because I had one of those in my head on the right side, near the cerebellum and it bled for the first time in November, in February 2012 was the first time my one bled. ⁓ But ⁓ I had numbness on my left side, the entire left side for a whole week before I went to the hospital. And then when they scanned my head, they said, we found a… a shadow on your brain. The shadow on my brain is the white part on the brain scan on the MRI that reveals the bleed and the bleed. The bleed was caused by this blood vessel, faulty blood vessel that they called an AVM that burst and then created a lot of trouble, right? And then the whole journey begins and then it’s just, you know, starting out. So, with mine, eventually they removed it from my head with brain surgery. How did they rectify the bleed in your brain? What did they do to stop it bleeding? Jonathan Arevalo (14:15) Well, it didn’t, it stopped on its own actually. ⁓ Bill Gasiamis (14:19) Sometimes they do that. I was told that sometimes they stop on their own and they don’t have to take any further action. But with mine, it bled another two times and they had to have brain surgery. But with yours, luckily, it stopped bleeding on its own. Jonathan Arevalo (14:34) Yes, Bill. So in reality, it was a miracle. It was a miracle behind it because it stopped the bleeding, but it also drained the bleeding that was inside. So it was like a drainage on its own. And that’s the miracle itself. And the doctors had a team of 10 in the hospital trying to monitor me. and see exactly how did it happen and at a young age and someone that’s healthy and doesn’t have a history of being in the hospital or anything such as that. So that was the miracle itself. So the neurologist ended up ⁓ with their team. They ended up having, I had an angiogram. And the angiogram was done through the side of the groin that goes up to your head, which they tried to ⁓ detect exactly the AVM. And that’s how they were able to find only one specific one that ruptured. Bill Gasiamis (15:53) Yeah, I had the same procedure through the groin and ⁓ they put the the contrast into the brain and then they take photos of that and it shows exactly where it’s bleeding. And that’s an interesting experience because you’re awake the whole time and they go past your heart and they go up into through your neck and then they go into your brain. Jonathan Arevalo (16:11) Yes. Yes, it is. was like an experience that it’s hard to explain, but I felt like electricity in my body. And I don’t know why I felt electricity in my body, but I felt like shocks in my brain or like fireworks. And I was thinking, what’s happening? Bill Gasiamis (16:19) Pretty crazy. Fireworks. Jonathan Arevalo (16:47) But the hardest part, Bill, was the fact that I had lot of difficulties in speaking. So words wouldn’t come out. For me, was like I tried to explain myself through, I don’t know how to say it, emotion. So like facial, facial expression, kind of like when you feel in pain or something like that, or you’re trying to say things. So I had a lot of difficulty for that period of time. And also, since it happened on the left side of my brain, on the opposite side from arm to leg, I had ⁓ difficulty with my mobility. And also with my memory, my memory was affected. ⁓ about a percentage amount. it was very hard ⁓ my first year. It was very difficult. Bill Gasiamis (17:59) I was 37 when I had mine and you were 35. Jonathan Arevalo (18:04) 35. Bill Gasiamis (18:07) Yeah, very young, very young age and then a lot of challenges. So who was supporting you when you were at hospital? Was it your girlfriend at the time and other family members or nobody able to come because of the lockdowns? Jonathan Arevalo (18:21) Yes. So because of the lockdowns and all that, the only person that I had the permission ⁓ for that support was my sister, my older sister. So she ⁓ would be the only one that just by phone, so not in person, because ⁓ my family lived two hours away from the city. And since they live very far away, ⁓ ⁓ My sister was the only one that had communication with the doctors, with the nurses and any specialist when it came to my case. Bill Gasiamis (19:02) Wow. After surgery, after you woke up from hospital, the first seven days, you said the better week you’re in ⁓ that situation. Jonathan Arevalo (19:17) Yes, for a week. ⁓ so they ended up not doing anything. I’m not too sure why. And they let me go home. Bill Gasiamis (19:29) Wow, so they had drained the blood already out of your head and then just sent you home Jonathan Arevalo (19:35) They sent me home on a wheelchair. So what happened was that I ended up getting picked up by my sister and I didn’t go back to where I was currently living in the city. Instead, I went back to the countryside with my parents who ended up becoming my caregivers. Bill Gasiamis (19:59) So you had a, they sent you home in a wheelchair. Did that mean you couldn’t walk when you were sent home? Jonathan Arevalo (20:08) I could walk a bit, but not too well. Bill Gasiamis (20:12) So there was no rehabilitation option, you didn’t get rehabilitated, they didn’t give you occupational therapy or anything? Jonathan Arevalo (20:19) They did that at home as well. Because of COVID, I ended up receiving rehabilitation at home. ⁓ When it came to walking, speaking, understanding, cognitive, and social worker, and nutritionist, all of those types of therapists, ⁓ they had to dress up in a suit as if… As if they’re going to see someone who’s with a virus or something. So it was like watching a movie. Bill Gasiamis (20:55) Wow Yeah, pretty crazy times. So you did get rehabilitation. They did ⁓ support you with therapy for speech and all that kind of stuff. ⁓ How long did all of those therapies last? Was it? Jonathan Arevalo (21:16) Yes, that lasted for seven months. Bill Gasiamis (21:20) Wow man, all at home. Jonathan Arevalo (21:23) all at home, ⁓ in person, and also virtually the way we’re doing right now. Bill Gasiamis (21:29) Yeah, was it virtually for speech therapy? Jonathan Arevalo (21:34) Yes, virtually it lasted longer than seven months for speech therapy. It lasted a year. Bill Gasiamis (21:40) Wow, Yeah, that that’s kind of cool that even though they were going through a really difficult time in Canada, with lockdowns with all the stuff that ⁓ happened because of COVID that you still got access to all of the necessary tools to help you overcome what it was that you went home with. Jonathan Arevalo (22:02) Yes, yes, I’m very thankful. I’m very thankful that I received the support that I needed and also the support of my caregivers, my parents and my older sister, because mainly my older sister was the one that was on top of everything. So that way I may receive everything the moment that I got released from the hospital. she ended up getting everything that I needed, so that way I get that support automatically right away, over the time, yeah. Bill Gasiamis (22:40) Wow, that’s excellent. So, however, now you’re living in different circumstances under lockdown, very difficult to access all these things, like things are seriously have gone wrong for you, know, quote unquote, in your health journey, okay? What is it like dealing with the emotional side of that? Emotional Challenges Post-Stroke Jonathan Arevalo (23:05) Very difficult. I was very angry. I was very frustrated. I was very upset. I was confused. Those are the different emotions that I felt. And I believe that many other stroke survivors would feel the same way. Because I find it that whenever something has been taken away from you, then it hurts a lot. And it hurts you a lot because it’s kind of like not being yourself anymore. So you have something that’s been taken away from you. And so I did lose quite a lot. I lost my job. I lost the ability to drive. So I had to sell my car. And I also ⁓ lost that relationship that I was in. that relationship ended. And I also wasn’t earning any money as well. So the only caregivers were my parents. had to live with them again. And for the past four years of recovery, which I’m still in that recovery stage of stroke, but I’ve improved a lot though. I’ve improved a lot and which I’m very, very thankful. And that just goes based on just having faith. And that’s where I started to change my life. I started to change my life the moment I started to change my mindset, the way I think. And because the moment I started to change the way I think, it was the moment that I was just much more grateful for even though I lost everything. I was simply grateful to be alive. And that was much, much more meaningful than everything that I had. Bill Gasiamis (25:08) than being grateful for a car, for example. Jonathan Arevalo (25:11) Being much grateful for having the second opportunity to live when possibly I wouldn’t be here telling my story. Bill Gasiamis (25:20) Yeah, I totally get that. I went through a similar experience, know, gratitude. Even if you’re not able to come up with something that’s as meaningful as I’m grateful to be alive, like maybe you’re grateful because, I don’t know, there’s a roof over your head or, I don’t know, somebody said something nice to you or whatever. Like you can be grateful about many things, but- being grateful to be alive. Well, that was an easy one for me as well. I totally get it. That’s what I went through. And I had another opportunity to make things right, to support ⁓ myself in a different way, to think in a different way, have it, to try different things and experience things that I’d never experienced before. What, what was the thing that kind of made you feel grateful to be alive? I know that Do you know what I mean? There’s a layer beneath that. is, I’m alive, okay, but what does that mean that you’re grateful to be alive? I get it, but there’s more to that. Jonathan Arevalo (26:33) Yes, of course. Yes. I’m grateful for being alive because I have a second opportunity to change my life to something even better when it comes to helping others, when it comes to being a difference from our old self. Sometimes we don’t get a second opportunity to reflect, but I had… four years, and it’s going to be almost five years, of the opportunity to reflect, of being thankful for, as you said, a place to live, for having my parents, for having my sister, and for having other loved ones that were there praying for me so that way I may live and not die. And at the same time, ⁓ Just being able to walk, to see, to speak, to understand. I was able to regain all of that that was lost. those were the reasons why I was grateful for. Bill Gasiamis (27:48) Yeah, your, ⁓ so your mindset and who you were and how you acted and how you behaved. Like, are you a very different person than the person beforehand? Like, what were the issues with your mindset? What were the issues with the way that you turned up in the world that you needed to tweak to be a better version of yourself back then? Now, I say that because many stroke survivors will say, I want to go back to how things were before stroke. And I’m like, I didn’t want to do that. Like, that’s not a good place to go. You’re smiling. So I’m imagining that you think a similar way. Jonathan Arevalo (28:30) Yes, agree with you, Bill. I find it that sometimes we don’t change our old habits, let’s say. Sometimes we carry habits or cycles in our life that we think it’s good, but in reality, it’s not something good that actually ⁓ represents us. or does good for others or even for ourselves. So myself, I can say that I had everything that I wanted and I had the opportunity to do pretty much everything that I wanted. But at the same time, I wasn’t completely happy. And at the same time, we carry certain bad habits because we think according to society, where society will will accept you based on the things and the patterns that you follow society. When it comes to doing certain bad habits that you think that’s good, but in reality, it’s not really good because you’re actually hurting and damaging who? Yourself. Which is something internally, both mentally, physically, and emotionally. But over time, When you start to reflect on your old habits that weren’t completely fulfilling or bringing that happiness or that peace or that joy, then in reality, it’s nothing good. It’s only for the moment. And sometimes we keep on rushing and doing things for the moment to get that pleasure. But that pleasure only lasts for a moment. So I had to change. And this recovery over these almost five years was a recovery not to just change myself, but to change the way I think, the way I speak and the way I act, because it’s a full connection. And that full connection is the reason why now what I’m currently doing is helping other people, other stroke survivors and other people with disability and also mental health, because we find it that each day The world is getting worse, not better, but worse. Why? Because we live in a broken world. And the fact that we live in a broken world is a reason why there’s many, many men and women that are looking for pleasure, but for the moment. And that’s something that I had to learn for myself the hard way. Even though I wasn’t in drugs, even though I wasn’t an alcoholic, even though I wasn’t doing harm to people, but I would still have bad vices or certain things that still didn’t make me happy. So that’s the main reason why. Overcoming Bad Habits and Health Challenges Bill Gasiamis (31:38) Yeah, it’s exactly my experience as well. Like I had some bad vices that were not ideal. They seemed minor, but the behavior, the habit behind it was not minor. It was major because it was there for many, many years. And if it continued to go on, wouldn’t be helping in a positive way. It wouldn’t be achieving a positive outcome. will be achieving something that my head thought was a good idea at the time, but not really something that is meaningful, purposeful, useful in life. Smoking was one of those things I used to smoke. And people, often I had a friend of mine who would say that that thing will kill you if you keep doing it. And I was like, yeah, don’t worry about it. That’s a problem for Bill in the future. It’s not a problem for Bill today. However, Bill of the future had a bloody brain and… a brain AVM bleed in his head. that became a 37. Really, that became a problem for Bill. Now. And I was smoking from about the age of 13, something like that, on and off. And my friend was telling me that from probably the age of 17, 18, 19, 20, 21. It didn’t take a lot of years to get to 37 and then be experiencing you know, negative impact of a health situation. And I realized that I’ve got to make some massive changes. And obviously, to me at least, it was the most obvious thing that I have to give up smoking. Also alcohol, even though I wasn’t an alcoholic, I had to stop drinking alcohol. And now I very, very rarely drink alcohol. Even 13, 14 years past the first bleed, I very rarely have an alcoholic drink. ⁓ So it’s amazing what came to my mind. I immediately knew the things that I had to change. No one had to tell me, ⁓ well, since you’re ⁓ having a stroke, since you can’t walk properly yet, since your left arm doesn’t work correctly, why don’t you think about fixing this, changing that, doing this, doing that? No one had to tell me. Inside of me, instinctively, I knew what I was doing that was not supporting me, was not supporting my mission in life and my goal in life. And it was the easiest thing to change. ⁓ I did receive some help though. I didn’t do it alone, right? So I had a counselor, I had a coach, a life coach. ⁓ I sought out the wisdom of people that were older than me, smarter than me, know, been on the planet longer than me whatever. And I did it together with other people, not just on my own, because change is not very easy, especially when you remove an old habit and then you have to replace it with something. Initially, replacing it with something feels a bit strange and you don’t know if it’s the right thing that you’ve replaced it with and how that’s going to look like in six months or 12 months. So that’s what I found was that in order to help me find the right things to replace the things that needed to be left behind. I needed to seek the support of other people, counselors, coaches, et cetera. Did you have some support in that part of your recovery so that you can kind of make sense of all the changes that were happening in your body, in your emotions and in your life? Jonathan Arevalo (35:15) Yes. So I ended up joining a nonprofit organization here in Canada called March of Dimes. And March of Dimes provides support for stroke survivors, people with disability, and they have peer support. And it’s a form of counseling with other stroke survivors. And they do this within all of Canada. And also through Heart and Stroke as well, which is another nonprofit organization, Heart and Stroke. So both of them, would do this virtually where I would seek support to talk to someone based on what I’m going through, my thoughts, my emotions, and also telling my story. And from that moment, I said to myself, I want to do the same. I want to give back to the community and to other survivors. So I ended up becoming a volunteer. And for the past three years, I’ve been a volunteer at ⁓ March of Dimes and also Heart and Stroke, where I ended up becoming an advocate. for both nonprofit organizations. And you can also see me on their website on both of them where it tells my story, but also the fact that I volunteer helping out people from the ages of 20 to the ages of 80 years old in two languages now. So I do it in English and Spanish. And it feels really, really good. It really does. Bill Gasiamis (37:09) Yeah, we have very similar stories and journeys. So I went and connected with the Stroke Foundation here in Australia and then provided became an advocate so that we can raise awareness about stroke and then started doing some speaking on their behalf at different organizations. And and like you said, like it gives you a lot of purpose and meaning. It makes what happened to you worthwhile. You know, it’s a very important part of, well, why did this happen to me? I don’t know. You could come up with a lot of negative reasons why something bad happened to you, but what am I going to do about this? And how can I transform this in a way that can help other people? Well, that is a better question to ask. And then volunteering is the best way to do that. I volunteered probably from 2013 through to about 2019. Finding Purpose Through Volunteering For about six years I volunteered. And at the same time I was running the podcast, I started the podcast in 2015. ⁓ And it was just ⁓ meeting other people who had understood me as well in those communities. That was fantastic. Being able to connect with people like that and feeling like, you know, this person really understands what happened to me because it happened to them in a different way, but they have a similar kind of recovery. And… we are aligned in our mission to support others and make a difference and not to make it just about us because that’s a really difficult thing to ⁓ do is you you become anxious and depressed when you just make it about yourself so making it about other people’s stops that thinking pattern ⁓ and I just love the journey that you’re on because you’re very early on in the journey and I can see it’s going to continue ⁓ to be that kind of meaning making journey. I found that I said that I discovered my purpose after the stroke. Now you would have thought that somebody who was married had two children, had plenty of purpose in their life, plenty of meaning. Why do I exist for my children? To support them, to teach them, to make them great men, to ⁓ give them the opportunities in the world, in the community, except They move out of home eventually, and then they become independent. And then your purpose and meaning has to shift. It cannot just be about them. You can include them in your purpose and meaning because you love them, they’re your children, et cetera, in my case. But, you know, they don’t need me now to be the guy that shows them the way of the world and… educate them and prepare them and all that kind of stuff. They are doing it on their own. When they do need me, they come for five minutes or 10 minutes. We have a conversation and they’re done. So it’s important to shift that energy that I had as a parent to other people who need support in the early days of their experience when they have a negative health experience so that we can help guide them through that adversity and overcome and then maybe grow and be a better version of themselves in a few years down the track. Jonathan Arevalo (40:41) Yes, I think that it’s important to be a good example, a good leader, whether it’s at home or everywhere we go. We always need to be a good testimony. And the way I’ve learned that is also through my dad, which he taught me at a young age to be to be a man of righteousness, where he shows a good example through his good actions, but not only through words, but through actions, right? Because sometimes we may speak and say a lot of things, but we don’t live it. But when you live it, it makes a huge difference. And whenever we show those examples, whether it’s… to anyone, any family members, strangers, or anything like that. We need to be like that everywhere we go. And that’s something that I’ve learned a lot, that we need to be a good example to anyone. Bill Gasiamis (41:47) Yeah, I imagine that in the last five years you would have had some setbacks as well. What was the hardest challenge to overcome, do you think, for you? Was it physically or was it emotionally? Jonathan Arevalo (41:59) ⁓ I think it was more emotionally than physically. But it’s something that I was able to work on because even myself, ended up seeking support. And not only through these nonprofit organizations, but also within the church. So I ended up going to church and I had one of the pastors being my mentor ⁓ for a year and a half, and he ended up helping me out a lot. And it was a big amount of support that I received also from my dad and my mom and my sister. So I always had ⁓ a close family support. Yeah. Bill Gasiamis (42:54) Yeah, the church is very common in people’s recovery. You hear a lot about people reconnecting with their church or even if they were still connected with their church, getting supported and having people turn up, ⁓ provide food, provide counseling, provide encouragement, all sorts of things. ⁓ And it sounds like it’s a fantastic community. And then you also hear from people who had ⁓ non-church type of. communities who come forward, support them and give them ⁓ the things that they need to kind of get them settled and in some kind of routine where they can continue recovery in their own way. ⁓ But there would have also been hard times, right? Where, because most people, and on my podcast, we talk about all the amazing things that stroke survivors do and they overcome, et cetera, but there’s also a… really, really hard times. I went through what I would call rock bottom moments, found myself in the abyss. Did you find yourself there at all? Had you experienced kind of that really down negative part of stroke ⁓ in your mental state and your emotional state as well? Jonathan Arevalo (44:09) Yes, ⁓ within the first year. So the first year was everything like I mentioned earlier about feeling angry, frustrated, ⁓ sad and all that. The first year was the hardest part of ⁓ just not knowing what to do. And the only support was ⁓ through my parents that helped me a lot to kind of take away those negative thoughts. And also getting into the church where I had support with the pastor. And then myself just changing my mindset where I had to start looking more into, more to God because I find it that without God we’re nothing. And based on my faith, that’s what gave me the strength, the encouragement, and the joy that was taken away the moment I had my stroke. So my faith in God was what gave me the strength and gave me the encouragement to move on forward. The Role of Faith in Recovery Bill Gasiamis (45:31) Let’s talk about faith for a moment because people may not believe in God. Some people may not believe in God, a God, their God, whatever. faith on its own as a experience is something that we, if we practice, ⁓ is really supportive of recovery. So faith in ourselves, faith in the medical system, faith in any situation where We have to put our kind of our life in the hands of other people. That’s what we’re practicing for people who don’t have faith in God or who don’t have a God or don’t believe in God. You still have to practice faith and you practice faith every single day. ⁓ I wanna go and receive one of my medications. You have to have faith in the medication that is going to work for you and it’s going to actually do the job. that it’s meant to do. Keep your blood pressure down, for example. I’m on blood pressure medication. ⁓ When I drive my car, I have to have faith that the other person is gonna stay on their side of the road and they’re not gonna come on my side of the road. And you know, 99.999 times out of 100, that’s exactly what happens. know, ⁓ when I have, when I’m driving the car, once again, I have to have faith that the lights that I stop at are going to, in fact, when it’s red on my side, it’s going to be green on the other side. And at some point it’s going to switch and it’s going to go green on my side and it will definitely go red on the other side so that we don’t collide. You know, there’s faith. We practice faith all the time throughout our day, throughout our whole life without even really knowing it and without needing to practice faith in a religious way. ⁓ And that’s what I’ve kind of got out of my whole, my whole journey is I didn’t find God so much in that I see God differently these days. I kind of believe that God is me. I am God, God is within me. So when I request a solution, if I use the word God in the sentence, God guide me to find the answer to this difficult question, what I’m actually doing is I’m having an internal conversation with myself. And I’m asking myself, my unconscious self to guide me to find the answer in this particular way. And that way I can combine God, the non-religious version of God, we’ll call it spirit or our creator or whatever you want to call it. And I can embody that and then make it part of me. And then in the right context, I can access the wisdom of God, the creator, nature, whoever, and I can be guided instinctively to follow my gut to an answer. And then if I go down a particular path that was not that way, and I find the wrong path, I can redirect, go back in, redirect and go again. So I became I suppose more, maybe the word is spiritual, it’s probably not the right word, but it’s how I kind of practice my, what you might call connection to God and faith. That’s how I practice it. How does that sound to you? Jonathan Arevalo (49:08) Yes, for me, it’s having faith is believing without seeing. And whenever you build a relationship with God is the moment that you start to learn who God is. And when you read God’s Word, God’s Word teaches us about His promises. His promises that He has for each one of His children, which God created, heaven and earth and everything that we see. And the fact that we breathe and and all that, that’s God who does that. there was this, the other day I was reading and it’s ⁓ in the Bible in the book of Isaiah, who’s a prophet. And it was based on the story of a king and the king is his name is Hezekiah. And Hezekiah had an illness, but not only that, it said, actually, can I read it in? in a second. So it says in his book that It says in Isaiah 38, it says, In those days, Hezekiah became ill and was at the point of death. The prophet Isaiah, son of Amoz, went to him and said, What is what the Lord says? Put your house in order, because you are going to die. You will not recover. Hezekiah turned his face to the wall and prayed to the Lord. Remember, Lord, how I have walked before you faithfully and with wholehearted devotion and have done what is good in your eyes. And Hezekiah wept bitterly. Then the word of the Lord came to Isaiah. Go and tell Hezekiah, this is what the Lord, the God of your father, David, says. I have heard your prayer and seen your tears. I will add 15 years to your life and I will deliver you and this city from the hand of the king of Azariah. I will defend this city. This is the Lord’s sign to you that the Lord will do what he has promised.” So when I read that, I said, wow, how amazing God is that not only does he give promises to either kings and all of that during 2000 years ago in history and how God is still faithful to each one of us. Why? Because each one of us have a purpose and because God has created us with purpose is the reason why his love and mercy is so great. And that’s why I’m thankful for it I know that God is faithful and because his faithfulness He’s given me a second opportunity to live. Bill Gasiamis (52:16) Yeah. So you you take your Bible everywhere now. Jonathan Arevalo (52:21) I take his word everywhere in my heart and I find it that his word is real and is truthful because without God’s word, there’s no life. Bill Gasiamis (52:28) Yeah. So what about before stroke? Were you somebody that knew the scripture? Were you somebody that ⁓ had that type of connection to the word? Jonathan Arevalo (52:47) I didn’t have that connection as much as I have it now. Bill Gasiamis (52:51) Yeah. That’s cool. Jonathan Arevalo (52:53) And that goes based on like we spoke earlier about having a relationship. It’s not really following a religion. It’s knowing that there’s something greater than us. That’s the difference. Bill Gasiamis (53:05) Yeah. I agree with that. Jonathan Arevalo (53:09) And when we know that there’s something greater than us, then we can see that things change. But only things change only if we change ourselves in the inside. Because remember, this world that we live in, as I said earlier, we live in a broken world, right? A broken world where we find a lot of chaos and a lot of things going on. But without that love, without that peace, without that joy, that can only come. through the creator, which is God. And that’s the only way that you can actually be molded to the righteous man of who God has created in us. But we just need to know how to find that. And that way is through His word. His word teaches us that. And the moment that we apply that to our lives, day by day, the same way like with our health, our sickness, our weakness, our insecurities, How can we change that? We can only change it the moment that we apply it into our lives, little by little. And through that is the moment that we can see transformation and a step of moving forward and also breakthrough. Breakthrough is only done through changing our old selves. Because our old self is very hard to break, because we still carry that. Understanding Suffering and Connection to God Bill Gasiamis (54:35) Yeah, I agree with a lot of what you’re saying. Some people will be listening and going, well, if God is so good, why did God do this to me? You know, some people are far more injured because of stroke than you or I, even though your injuries and mine are all valid. There’s people who won’t walk again. There’s people who lose their memory, who can’t remember anymore. There’s people who cannot get their speech back. There’s people who’s… left arm, right leg won’t work again, then there’s people who will pass away. And then some of those people find that they’ve been harshly treated by God, by their maker, their creator. How do you talk to people like that to make them feel like it’s not personal? God, your creator, your maker has not gone after you and ⁓ is not punishing you. Like what do you say to people who lose connection with spirit, with God, with their creator? Jonathan Arevalo (55:40) Yeah, well, what I can say is that that God is so merciful, right? And because God is so merciful and through His love, we see in God’s Word that He died for us in the cross for our sins and is due to sin that we go through all these challenges. And that’s the connection through a broken world that we live in. is because everything comes from sin. And sometimes it’s hard to say, why is this happening to me? Or why am I not getting better? Well, everything goes back to sin. And because until we kind of, until we accept Jesus Christ, but not only accept Jesus Christ, but at the same time, God allows certain things that we have to go through. We have to go through certain challenges or obstacles, right? But it’s really hard to say. I find it. Maybe to answer that question. Bill Gasiamis (56:47) Yeah. I actually don’t mind the word sin when you use the word sin, because I’ve recently discovered ⁓ some people’s meaning of the word sin is to take that an incorrect aim to aim in the wrong direction. And I really relate to that. So when I sin, I don’t kind of see it as a, ⁓ you good, me bad. Like, do you know, don’t, I don’t sort of see that type of thing. It’s just aiming in the wrong direction. For example, previously my life was led by my head. It was my head that was telling me this sounds like a good idea. Yeah, we should have three cars. We should have the biggest house possible. We should do all of that. My head was guiding my life, whereas now my head is supporting my heart to guide my life. That’s why the podcast exists, because the podcast is not about what my head thinks is a good idea. Because if my head thought it was a good idea, this podcast should be making a shitload of money and it’s not making a ton of money. That’s why I request support from Patreon. That’s why I wrote a book to make a little bit of money so that I can ⁓ cover the costs of recording, editing, uploading, hosting a podcast. Like that’s the reason why it needs to make money, but it doesn’t need to make hundreds of thousands or millions and millions of dollars. My head in the old days would be going, dude. Don’t ever do 400 episodes of stroke survivors podcast. I’m not interested in that. And I, and I would be going, okay, what do I need to do? And my head would be going, you need to 24 hours a day, seven days a week and make as much money as you can. So you can have all the things that we’re told by the marketing companies that you need to have. I see that as a sin. Do you understand? That is the wrong aim. I’ve taken aim. dude and I’m putting all my energy into the wrong things. Whereas now I’ve taken aim and adjusted and now I think I’m aiming in the right direction. It’s about purpose, meaning, connecting with other people, helping other people, supporting other people. I’m no longer sinning in that particular way. That’s the literal description of the word sin. So it’s really important that I learned that because if I didn’t learn that I would be taking when I hear the word sin as a me bad, everyone else good. And that’s definitely not what it is. And that’s what I think the, the bleeding in my brain helped me adjust the aim, redirect where I was heading in my life, who was important, why they were important to me. ⁓ and, and my community is not a church. but I’m creating my own community on this podcast, know, 400 interviews, people who reach out from you all around the world. It’s the same kind of community, giving community as a church community is. We support each other, we help each other, we give people information, we connect other people with ⁓ doctors and conditions and solutions. So it’s like, yeah, that’s what I was lacking. I was lacking community. Jonathan Arevalo (1:00:01) community. Bill Gasiamis (1:00:02) I was lacking people who understood me and who were similarly aligned to me. You know, I was connecting with people who were sinning in their own way because their direction was all wrong and we were finding each other and we were making life harder for ourselves by being all in our heads and not connected to our body and our heart, right? Jonathan Arevalo (1:00:23) Yeah, that’s right. Bill Gasiamis (1:00:25) That’s kind of my religious journey without connecting it to a religion or to a religious chapter or to a church in a particular location. But I still feel like it’s a religious journey, you know? Jonathan Arevalo (1:00:39) Yes, like the moment that you build fellowship as we’re doing right now, we’re sharing our stories and we’re sharing our journey as stroke survivors. And through this story is what shows which is what shows purpose and also can leave an impact to others, survivors. Because if we don’t show a difference and if we don’t help support other people, then what purpose do we have on this earth? Right? We’re here to help one another and to be different in a good way. Building Community and Fellowship Because every single time we’re always going to be going through different challenges. Whether it’s negative thoughts or everything that we see on TV. Because every single time that we’re looking at the news is always bad news, So all those negative thoughts are something that we are affected day by day. And the only way that we’re able to overcome those negative thoughts is by putting ourselves surrounded in other things. Other things that can help us strengthen our mind, our body, and emotions. But that’s something that takes day by day. Bill Gasiamis (1:02:14) Yeah, I love it. I love your journey. I love how similar we are in our path, even though we talk about it in a slightly different way. ⁓ Leading a good example is something that was very important to me. I want to be a good example for my kids. In my book, ⁓ the dedication says to all the stroke survivors who are dealing with the aftermath of stroke. and despite it all are seeking transformation and growth. And that’s the first part of the dedication. And the second part of the dedication says to my family, I hope that that I have set a good example. I mean, my only goal, my only goal is to set a good example, to show them when adversity comes, how you can respond. There’s a Jonathan Arevalo (1:02:59) Thank Bill Gasiamis (1:03:10) I think there’s a way to respond that’s wrong. And then there’s many ways to respond that are right. There’s a one, there’s unfortunately, you know, responding by going back to the way that you were before, think is the wrong way to respond. then finding a new path forward, taking aim and choosing the wrong direction, sinning, and then readjusting, and then going again in another direction, I believe. like is the example that we need to set for other people just so that my kids can see in the future when they go through a tough time, they go, I think I remember one way that my dad did it that might be supportive of my recovery down the path and see, okay, this is what dad did. I don’t need to do what dad did, but this is kind of how he thought about that and how he approached that. That’s really. what I was sitting out to achieve. And I think I’ve achieved that and I feel really good about that, you know. Jonathan Arevalo (1:04:17) Yeah, no, I think that’s excellent, Bill. I’m glad that you were able to create a podcast. And ⁓ thank you for this opportunity because I never thought I’d be able to share my story. And as well for the fact that your sharing was called, ⁓ that you created a book to tell about your stroke survival. And I think that that’s going to impact many, many, many other survivors. They’re going through difficult times and I think that’s amazing. Bill Gasiamis (1:04:52) Yeah, thank you. A lot of people have bought it. I think there’s at least 600 copies being sold at this stage. And that’s not a lot. It’s not a million copies, but ⁓ it was never about the number. It was just about having it available just so that people can come across it if they need to and ⁓ read it and just see a different perspective of how you can approach your recovery. ⁓ You can get the book at recoveryafterstroke.com/book for anyone that’s watching and listening. So as we kind of get to the end of this interview, tell me what’s next for you. What’s on the to-do list? What goals do you have that you want to achieve? Future Goals and New Beginnings Jonathan Arevalo (1:05:31) Yes, well, what I’ve been able to achieve ⁓ was that I ended up getting married this year. Thank you. It wasn’t something expected because I thought maybe it’s not going to be possible to meet someone based on my condition and everything, but… Everything changed. And so I got married on April 11th of this year. So I’m now married. And the other thing that I started this year was besides the volunteering, I also created ⁓ my own like small business when it comes to mentorship to help other people, which are people that are either stroke survivors. People with disability and also mental health. And I created my website on that to help a lot of people. And it’s ⁓ non-profit at the moment, which is donation-based. And I’m still helping in the community. I still volunteer. And I still ⁓ help out in the church and many other places. So those are the things that I’m still currently doing. Bill Gasiamis (1:07:02) Fantastic, man. So the website, we will have the links to all of the different social media and your website, et cetera, for people to follow if they want to connect with you. ⁓ The journey that you’re on, you’re calling it the 20, the project 21. Jonathan Arevalo (1:07:28) Yes. The reason I called it Project 21, because this journey that I’m going through is like a form of a project. And everything started in 2021. So that’s why I decided to pick something unique and different and call it Project 21. Bill Gasiamis (1:07:51) Yeah, fantastic, Jonathan. I really appreciate our conversation. Thank you for reaching out and joining me on the podcast. I love the work that you’re doing and will continue to do. There’s many, many years ahead of you of doing fantastic work and I look forward to keeping in touch and finding out how your journey unfolds. Jonathan Arevalo (1:08:14) Yes, thank you, Bill. I appreciate it. Bill Gasiamis (1:08:17) Well, thanks so much for listening to this episode of the Recovery After Stroke podcast. And thank you to Jonathan for sharing a story that takes a lot of courage to revisit. One thing I hope you take from this conversation is that recovery is never just physical. It’s emotional, it’s messy, it’s confusing, but it is also an opportunity to rediscover who you can become. Jonathan’s journey shows that healing doesn’t always look like we expect. And sometimes the smaller steps forward end up becoming the most meaningful ones. If this episode helped you feel understood or gave you something to think about on your recovery path, remember to visit patreon.com/recoveryafterstroke. Some people believe their support won’t make a difference, but that’s an assumption that simply isn’t true. Every contribution helps me continue producing these episodes, keep them online and moving toward my goal of recording a thousand conversations. So no stroke survivor ever has to feel like they’re going through this alone. And if you haven’t already, you can also order my book, The Unexpected Way That a Stroke Became the Best Thing That Happened at recoveryafterstroke.com/book. Many listeners expect it to be just my personal story, but it’s actually something much more useful. It’s the guide I wish existed when I was confused, overwhelmed, and trying to figure out how to rebuild my life after stroke. Thank you again for being here, for listening, and for supporting the work in whatever way you can. You’re not alone in this. and I’ll see you on the next episode. Importantly, we present many podcasts designed to give you an insight and understanding into the experiences of other individuals. Opinions and treatment protocols discussed during any podcast are the individual’s own experience and we do not necessarily share the same opinion nor do we recommend any treatment protocol discussed. All content on this website and any linked blog, podcast or video material controlled this website or content is created and produced for informational purposes only and is largely based on the personal experience of Bill Gassiamus. The content is intended to complement your medical treatment and support healing. It is not intended to be a substitute for professional medical advice and should not be relied on as health advice. The information is general and may not be suitable for your personal injuries, circumstances or health objectives. Do not use our content as a standalone resource to diagnose, treat, cure or prevent any disease for therapeutic purposes or as a substitute for the advice of a health professional. Never delay seeking advice or disregard the advice of a medical professional, your doctor or your rehabilitation program based on our content. 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