Podcasts about Aphasia

Episode 138 When One Plus One Equals Three: A Conversation with National Aphasia Synergy               In this episode you will discover: 1.  People with aphasia hold the map. At NAS, people with aphasia don't just have a seat at the table — they built the table. Real peer leadership changes everything about how an organization thinks and acts. 2.  Recovery is about more than speech. The isolation and psychological distress that follow aphasia are just as real as the communication challenges — and just as deserving of attention and support. 3.  Peer-befriending is life participation in action. When people with aphasia support one another through shared experience, that's not a supplement to good care — it is good care. 4.  Sinergia: one plus one equals three. When survivors and professionals work as true equals, something greater emerges than either could create alone. June is National Aphasia Awareness Month, and around here, that means it's time for one of my favorite podcast traditions. For the past few years running, we've spent this month in conversation with people who know aphasia from the inside — those living it every day. Today is no exception, and this one is a conversation I've genuinely been looking forward to.   Welcome to the Aphasia Access Conversations Podcast. I'm Katie Strong from Central Michigan University, where I lead the Strong Story Lab, and I'm a member of the Aphasia Access Podcast Working Group. Aphasia Access is dedicated to transforming services and environments so people with aphasia can participate more fully in life — and today's guests are living proof of exactly what that looks like.         Today I'm speaking with two leaders from National Aphasia Synergy — known as NAS — a peer-led nonprofit founded in 2021 by people with aphasia, for people with aphasia. NAS was built on the belief that those living with aphasia are best positioned to support others on the same journey. Through peer-befriending, technology empowerment, and community building, NAS works to end the isolation that so often follows a stroke — connecting people across the country through a shared sense of what they call Sinergia: the idea that when survivors and professionals work as true equals, one plus one equals three.   Today's conversation feels especially meaningful to me. I've had the privilege of seeing Trish and Amy in action at conferences like Aphasia Access and ASHA — learning from their presentations and watching their advocacy make ripples far beyond those conference walls. As someone who researches friendship and aphasia, I've followed the peer befriending movement closely — it began in the UK, and when I heard that NAS was bringing it to the United States, led by a peer organization, I thought: this is what life participation actually looks like.   Before we get into the conversation, let me tell you a bit more about our guests.   Trish Hambridge is the President and Founder of National Aphasia Synergy. Trish has lived with aphasia since her stroke in 2008, and that experience is the foundation of everything she has built. A former project manager for AppleCare, Trish has become not only a powerful advocate but a published researcher — partnering with research teams to influence the questions being asked and the evidence being built in our field. Her co-authored work spans game-based rehabilitation design, posttraumatic growth in aphasia, and the measurement of motivation and psychological needs in aphasia rehabilitation — all published in leading journals including the American Journal of Speech-Language Pathology. She has spoken at conferences including the Aphasia Access Leadership Summit, Aphasia Access Chautauqua and ASHA, serves on the Disability Advisory Committee in Dunedin, Florida, and is a member of Voices of Hope for Aphasia. Her vision brought NAS to life, and her leadership — in the clinic, in the research literature, and in the community — continues to shape it.   Amy Walters is the Vice President of National Aphasia Synergy. Amy has lived with aphasia since her stroke in 2018 — a stroke that, in a striking twist of fate, occurred while she was attending a neurosurgical conference. A Harvard graduate with a Master of Public Health from Johns Hopkins, Amy spent 30 years as a senior leader in the medical device industry before her stroke, and she has channeled that same expertise and drive into aphasia advocacy. She has presented at neurosurgical conferences to raise awareness, participates in aphasia groups across the country, and brings a remarkable combination of professional knowledge and lived experience to everything NAS does.   So — let's get into the conversation.   Katie Strong: Trish and Amy, welcome. I'm so excited to have you both here today and learn about what's going on in National Aphasia Synergy.   Trish Hambridge: Thank you for the chance to meet.   Amy Walters: We are so pleased to be here with the Aphasia Access Community. Katie Strong: Well, we're delighted that you are sharing your time and expertise with us. I wanted to get started by asking about National Aphasia Synergy. How was it created? Just wondering if you could share the origin story of the organization and how that concept of synergy or working together defines your mission. Trish Hambridge: Long time ago, I had a stroke, major stroke. But I was the same person then as I am now. I remember sitting on the hospital patio in San Jose and Karen, my good friend from college and speech therapist was there, and she was teaching everyone about aphasia. My friends and family were so patient. I remember my Dad talking to me and say, "You are stubborn." and I said, "Thank you!" Because that choice – being subborn - changed everything and gave me the chance to get my identity back. Katie Strong: So, Trish, just to verify, you're saying your stubbornness got you where you are right now. Trish Hambridge: Yes, but yes! Katie Strong: Love it. Trish Hambridge: Sorry to say, I have issues! But going back to the beginning, I had only had five words. Even my 'yes' and 'no' were flipped. Traditional homework is not my cup of tea. Shhh! Quiet, I'm lazy! I needed a better strategy, and I found it with P2Go. It's so much more than an app. It is the tool that gave me my voice back. Katie Strong: I love that, so if I'm understanding correctly, traditional homework is not for you, and that you really needed something that was technology based, which goes back to your expertise in your life, career to be able to really help you communicate, and it was the P2Go. Trish Hambridge: Yeah, yeah, is small, is so, is easy, my opinion. Katie Strong: Well, that's what we're here for today, is your opinion. Trish Hambridge: In 2016, a move to Dunedin, Florida changed everything. I joined Voices of Hope and finally found my community. Then the pandemic hit. But it couldn't stop our connection. We moved to Zoom. I want to be honest, though: some of my friends didn't make it through that storm. Their pain is part of this journey. We build this community in their honor. Katie Strong: Oh, that's really touching, you know. It is. It's hard, so many friends don't stay in our lives for many reasons, but aphasia can really be a challenge for friends sticking around. Trish Hambridge: Yeah, and the technology is not my cup of tea. Katie Strong: Wonderful, wonderful. Thank you for sharing that. Trish Hambridge: In 2021, I stepped up. I moved from a 'Lead Pathfinder' to the Founder of National Aphasia Synergy. I reached out to Debbie Yones, the big cheese of Voices of Hope. She and the Board Director gave me wise advice to help me grow. I didn't do it alone. My sister and my sister-in-law helped me think through the logistics. They helped me build the support for the nonprofit. Because of them, my vision became a reality. Katie Strong: So, your consultation with those important people to your life really helped National Aphasia Synergy become a reality. Trish Hambridge: Yeah. Finally, I asked Amy to join the mission. She became part of the organization. Now, we are moving forward together. Katie Strong: Thanks, Trish. I love that. Amy Walters: Thanks, Trish. Nine years ago, I had my stroke at the neurosurgical conference. Ironic, right? Yeah, the conference was in Colorado Springs. I was in a medically induced coma for 10 days and diagnosed with Global Aphasia. Then I was airlifted to the Shepherd Center in Atlanta, Georgia, where I had a craniotomy and cranioplasty. On the flight I remembered thinking, "Am I in a simulator? What's happening to me?"   Katie Strong: Wow! That sounds surreal! Amy Walters: My career was in clinical affairs for a medical neurosurgical device company, so I am professionally and personally familiar with neuroplasticity. I know how crucial neuroplasticity is to our physical, mental, and emotional recovery. National Aphasia Synergy was born from a deep need for collaborative survivor-led company. Katie Strong: The advocacy you're doing is really amazing, and I'm so excited for our listeners to be able to hear more about it. Amy Walters: Thank you. When we look at the aphasia community today, we see massive gaps. Most organizations are built for us, but they aren't led by us. The 'medical way' focuses only on the speech deficit, but it leaves a gaping hole in mental health, identity, and social connection. The research is heartbreaking: 40% to 60% of stroke survivors with aphasia experience chronic depression, and in early recovery, a staggering 93% experience high levels of psychological distress. This isn't just about the survivor—46% of our family members also face depression. Our mission is to bridge those gaps. We aren't just here to 'fix' speech; we are here to empower the whole person. We call it Sinergia—the Greek word for Synergy. It means we don't work in silos. We don't have 'experts' on one side and 'patients' on the other. We have a partnership where 1 plus 1 equals 3.   Katie Strong: I love it!   Amy Walters: We are moving away from the isolated patient model and toward a Sinergia where survivors and professionals work as equals to reclaim our lives. We are here to educate and empower our peers to use technology to reclaim their voices. But more importantly, we are here to promote peer-befriending. We reach out to those who are new to this path or struggling to find their way, because no one should walk this road alone. Katie Strong: I know, Amy, I just am so excited. I've been watching this peer befriending happen over in the UK, or reading about it, and hearing about it, and I was just so delighted when I heard that National Aphasia Synergy was taking this up and helping us to, to have a really solid connection. I think one of the things that breaks my heart the most is when I meet someone who has aphasia, who's been living with aphasia for a really long time, and they've never met anyone else who had aphasia. Amy Walters: Heartbreaking. Katie Strong: It really is. It really is. Amy Walters: Our goal is to develop a national community that encourages optimism. We believe a positive outlook isn't just a 'nice feeling'—it is a strategy for recovery. Katie Strong: Heck, yes! Amy Walters: At NAS, we don't just look for what's lost; we build on the strengths that remain. There were gaps in the Aphasia Community. Trish Hambridge: Speech Therapists and care partners are vital to recovery. They have good intentions, but the 'medical way' is often the wrong way. Katie Strong: Yeah, yeah, it's not quite the right way. Trish Hambridge: Many researchers only survey the Speech Therapists and the partners. But what about me? What about us? What am I, chopped liver? Think about the last time someone completely iced us out. It hurts, right? It honestly chips away at our sense of self, leaving us clueless as to where we actually fit in. Katie Strong: Yeah, so Trish, just to recap this for the listeners, you're saying when somebody ices you out, you're asking the listeners to reflect on how that really feels, Trish Hambridge: Yeah, I email [a researcher], and have offered [to be a part of their team] but they are like "Oh no, but sorry." Katie Strong: I hear, I hear you. Yeah and I think what you're bringing up - and you and Amy are bringing up such a great point that as the aphasia research community has not always included people with aphasia. Or they're only including people with mild aphasia versus more severe types of aphasia, so I love that you're calling this out and shining light on it. It's, it's time. Trish Hambridge Here's what the research tells us. Therapists and partners see the journey from the outside. But those of us living it? We know the honest truth. Katie Strong: Yeah, yeah, so as the clinicians, the therapists, and the care partners see that journey from the outside, and you all are living it for sure. Trish Hambridge: It is the 'Chicken and the Egg' problem: Does the partner change first? Or does the people with aphasia change? The answer is: The Environment. We must change the environment to find true recovery. We need to move from being 'patients' to being Lead Pathfinders. Katie Strong: Yes, so I love it. You're, you're flipping the script there and reclaiming your identity, or renegotiating it from that patient role to being a lead pathfinder. I love that terminology. Thank you. Thank you. One of you said this earlier that organizations are for people with aphasia, but National Aphasia Synergy is led by people with aphasia. Why is this distinction critical for the community to understand, and how does it change the way an organization is run? Amy Walters: Right, Katie. In the past, organizations were built for us, like a charity. But National Aphasia Synergy is different. We are led by people with aphasia. We are moving from 'being helped' to leading. This is more than an organization. It is a revolution of identity. At National Aphasia Synergy, we are flipping the script on leadership. Our Board makes decisions with one clear priority: putting voices with aphasia at the forefront. That means leaders like Trish, Bruce, and me are the ones making the big calls. We collaborate with wonderful professionals, like Kait, our SLP, Helen, our Financial and Secretarial support and Will Evans, our Volunteer Consultant. They are essential to our success. They ensure our communication is accessible and our business stays strong. I always think of our board meetings being like a United Nations meeting with "international representatives" (i.e., China, France, Japan, etc.) each of us is coming to the table with a different lived experience, different aphasia types, etc. We work together to "translate" and work through our differing communication styles. But make no mistake: The people with aphasia are the primary drivers of the vision. The professionals provide the tools, but we hold the maps.   Katie Strong: Such a great analogy. I love it and it also sounds like your work is fun too.   Amy Walters: Driving you crazy, but you mean you mean you mean, yeah. Hold the phone!   Katie Strong: Oh, that's great. I love it. Well, what does National Aphasia Synergy offer that others should know about? Trish Hambridge: Look at what we have built together: First, our Peer Befriending Program. A team of four SLPs and four people with aphasia worked as equals to create our training. Today, we have 15 volunteer Allies trained and ready to support the community. Katie Strong: I love it. So, 15 people with aphasia, volunteer Allies, have been trained as peer befrienders to go out and connect with other people who newly have aphasia. Trish Hambridge: Right, but anything like… Katie Strong: Or rather, anybody who has aphasia that they're wanting to connect with. Trish Hambridge: Come! Come! But we meet on Zoom.    Katie Strong: On Zoom, right? Yeah, absolutely. This is all virtual, which is amazing, you know, because you get a good reach, a really, a really great reach. What else is going on? Amy Walters: Second, our Aphasia & Mental Health Video. We have four excellent SLPs sharing the research, stats, resources and the power of neuroplasticity. And we also surveyed 10 people with aphasia to capture the honest truth of our emotional journeys and provide 10 essential tips for recovery. Trish Hambridge: I always start with a roadmap. But originally, we were filming something completely different. But three weeks before the shoot, I went to Debbie and asked: 'What do you think?' She said, 'There are enough basic videos out there... why doesn't NAS focus on Mental Health?' Katie Strong: Yeah, okay. So, you were doing all this planning, and then three weeks before the shoot, you went and talked to Debbie and said, "What do you think?" And she said, "There's already enough videos out there on basic aphasia, but not on mental health. I love it! Trish Hambridge: Yeah and so I agree!!! We agreed right away. We made a right turn...  And changed the plan on the fly! I ran a preview for my friends at Voices of Hope. They loved it, but they asked the killer question: 'Where is the actual resource? Where do we go for help?' Katie Strong: Trish, you are speaking to my heart here, and I know I'm one of those "outsider perspectives" as a clinician. But we just don't have great resources for mental health. It's really challenging. So, I love that your friends at Voices of Hope called you out on that. What happened after that? Amy Walters: That was the lightbulb moment, right? Trish Hambridge: Yeah, a video wasn't enough—we needed a map. So, we built the Aphasia and Mental Health Resources paper. The researchers and I had some serious back-and-forth debate, but that's how you get a solid plan. We ended up with something really cool: real tools for real people. Katie Strong: Love, love it! Trish Hambridge: Third, our Adaptive Growth Culture paper. This provides a brand-new map for recovery that the whole world can use to look past the 'broken parts.' Katie Strong: Yeah, Trish, I've heard you speak on this. That talk you gave it, ASHA. I'm going to say listeners, particularly clinicians, you should check this out, because we need to get our clients with aphasia, our lead pathfinders with aphasia to be able to  think in this sort of way, so yeah, Trish Hambridge: But like I have like the speech therapist and the caregiver, and people with aphasia -  it like, look right -- is the good plan. Katie Strong: Love it, fantastic, Amy Walters: Kait and I shared five powerful aphasia stories on video to show our diversity, our strength, our inhumanity, frankly. All of this lives on our National Synergy website. These aren't just projects, they are the proof that when people with aphasia lead, we create world that actually works for us. Katie Strong: Oh, this is fantastic. And we'll have links to your website in the show notes, but you can certainly Google National Aphasia Synergy, and the website pops right up. I've been exploring it for a little bit, but I was looking at it again this morning, and there's just such great, great stuff on there. So please go and check it out. Well, I'm curious, Amy and Trish, what's on the horizon for National Aphasia Synergy, and how can our listeners, whether they're Aphasia Access members or people living with aphasia get involved or support your work. Amy Walters: We are so proud of what we have built, but we are just getting started. This is our Call to Action. Trish Hambridge: We want the world to get excited about Mental Health!  Katie Strong: And I think get excited about your Adaptive Growth Culture too. Trish Hambridge: Yeah! We recently presented a poster at the Chautauqua virtual conference, and the feedback from Aphasia Access members was powerful. The keynote speaker, Dr. Nina Simmons-Mackie, spoke about moving from 'managing a condition' to 'owning a life.' That is exactly what we do! We focus on the strengths, the emotions, and the identity that the old medical model ignores. Katie Strong: Yeah, so okay. So, Trish, you, you were, I think you presented you National Aphasia Synergy presented a poster at the Chautauqua, the Aphasia Access Chautauqua recently. Trish Hambridge: First time presenting a poster! Katie Strong: I love it, I love it. Yep, and the feedback that you got from the Chautauqua attendees was spectacular, right? And that's when, and, and, and Dr. Simmons-Mackie or Nina Simmons Mackey took that idea and we wove it into her keynote at the end, right, and talked about how it's important for us to support people and people with aphasia and care partners move from managing a condition to owning a life. I mean, that that's powerful stuff. I love it! Trish Hambridge: I'm so honored. Katie Strong: Well, you are out there making an impact. Amy Walters: Thank you. We are building something historic, and we want you to be part of it. Here is how you can join the revolution: Trish Hambridge: To the speech therapists and researchers, Help us build our evidence base. We want the test that adapted growth culture map to prove how it improves mental health and builds confidence. Don't just watch from the sidelines—come test this with us! Soon, I'm taking the Adaptive Growth Culture to the global stage. I'll be at the International Aphasia  Rehabilitation Conference in Athens. Katie Strong: You'll be at the International Aphasia Rehabilitation Conference, or IARC, in… Trish Hambridge: Athens!! I am presenting our Adaptive Growth Culture Poster to the top minds in the field. Katie Strong: Fantastic. Trish Hambridge: We have built the roadmap. Now, the researchers will provide the data-driven proof. It is time to see the Adaptive Growth Culture in action. We are moving from lived experience to clinical evidence. Katie Strong: I love it, moving from lived experience to clinical evidence. Amy Walters: That's right, that's right, Trish. If you run a community group, a local program, or a support network, we want to connect with you. Help us build this referral network so that no one is left behind in isolation. We aren't just looking for 'places to go' to pass the time. We are looking for places where we can belong and grow. We are looking for communities that see our potential, not just our deficits. To my peers with Aphasia: Your voice is our power. Share your story or send us a shout-out with your favorite tips and tricks. We also need Buddies for our Peer Befriending program. Help us show the world that we are truly 'owning our lives.' To the Volunteers: We are looking for passionate people to join our Board of Directors. We specifically need one more person with aphasia, as well as SLPs, care partners, and friends. The only requirement? You must believe in the Adaptive Growth Culture. Whether you have the tools or you hold the map, there is a seat at the table for you. Visit us and let's grow together! Katie Strong: Amazing. I hope that our listeners will take you up on the offers that you just laid out there, and that they'll also go out there and share with others that they need to hook everybody up with National Aphasia Synergy. It's a great organization. I enjoyed learning about it more today. And Amy and Trish, I so appreciate you both being here with us and sharing your stories and the amazing work that's going on in National Aphasia Synergy. Trish Hambridge: Thank you. Aphasia Access is fantastic! Katie Strong: I'm glad that you're enjoying Aphasia Access, too. It's a great network, and it's great that we're having lots of communities continue to grow and blossom to support people living successfully with aphasia.   Amy Walters: Hear, Hear! Katie Strong: Thanks. You too. Amy Walters: Thank you. Katie Strong: Have fun in Greece. Trish Hambridge: Yay! Amy Walters: Jealous! Katie Strong: Me too, me too. Amy Walters: Bye, bye. Trish Hambridge: See you. Bye.   On behalf of Aphasia Access, thank you for listening. For references and resources mentioned in today's show, please see our show notes, available on our website at www.aphasiaaccess.org. There you can also become a member of our organization, browse our growing library of materials, and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@aphasiaaccess.org. For Aphasia Access Conversations, here at Central Michigan University in the Strong Story Lab, I'm Katie Strong.     Resources   Below is a list of links to the National Aphasia Synergy (NAS) resources and other organizations as discussed:  NAS Website:  https://nationalaphasiasynergy.org NAS email:  info@nationalaphasiasynergy.org   NAS Facebook page:  https://www.facebook.com/WeRSynergy (to keep up with what's going on at NAS and for inspirational, adaptive growth mindset content) NAS YouTube Channel: https://www.youtube.com/@nationalaphasiasynergy1410 (to watch our Aphasia Stories series, learn about resources, and tune into our quarterly video newsletter, "The Synergy Turf" to hear real people with aphasia) NAS Adaptive Growth Culture paper: https://drive.google.com/file/d/1VIq0juI4FTPKqF0Cev8qZAI5I5po5ouO/view?usp=share_link NAS "You Have Options!" Paper:  https://drive.google.com/file/d/1PBgvb1mDrjnFASaK_dpGL2gnZND_CjaU/view?usp=share_link NAS Aphasia & Mental Health video: https://www.youtube.com/watch?v=GThkxrKbQTI NAS Aphasia & Mental Health Resource paper:  https://drive.google.com/file/d/1pXbFLtZJ8KZ9Pxpg3HVZHBEd_D7BnsED/view?usp=share_link NAS Aphasia Stories video series: https://youtube.com/playlist?list=PLk1GJP6QGrPDOapMhQlmAUBHfVb5-Mnfi&si=BIuoNmeu-TM-ab65NAS  Peer Befriending: To get involved with NAS Peer Befriending, contact  info@nationalaphasiasynergy.org o Flyer:  https://drive.google.com/file/d/1dCETc1pZck59mw6OgaEjZGnXWOcdSlCh/view?usp=sharing o Video:  https://youtu.be/0RNvCeh0BKM   Referenced resources and organizations: Proloquo2Go AAC App mentioned (what Trish uses):  https://www.assistiveware.com/products/proloquo2go Voices of Hope for Aphasia: https://www.vohaphasia.org/    

Lana Wilhelm joins us for a personal conversation about caring for her husband, Rick, after his stroke and how that experience changed the way she understood caregiving, even after more than 40 years as a registered nurse. We talk about marriage after stroke, what spouse caregivers often face behind the scenes, and how her books helped lead to CarePower Connect, formerly Stroke Caregiver Connection. We also recognize Aphasia Awareness Month and share communication tips for supporting someone living with Aphasia.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Although these therapists are called "Speech-language" pathologists, they are trained to work with much more than just speech disorders. So, if speech-language pathologists don't just do speech therapy, what do they do?Today, our host, Dr. Jonathan Karp, and student producer, Kaya Basatemur, are joined by Capital Health's own Marissa Maurin, a speech-language pathologist at Capital Health Hopewell. In this episode, Melissa talks about common misconceptions about her job, the wide variety of disorders and symptoms that speech-language pathologists frequently deal with, and the ways in which she helps people with cognitive and social communication.Melissa also discusses the Aphasia support group available with Capital Health, which hosts meetings in person and online, and has guest speakers discuss different topics once every three months. Find out more by visiting their website: https://www.capitalhealth.org/classes-events/main/aphasia-support-group

AVM Burst in the Brain: A Recovery Story of Patience, Aphasia, and Finding Your Way Back Jennifer Tomscha was 39, driving her three-and-a-half-year-old daughter home from preschool, when an AVM burst in her brain. She felt a wash of dizziness first. Then her vision started collapsing on the right side. She pulled onto a narrow verge on the highway between Greytown and Carterton in New Zealand, tried to reach her husband, got no answer, and dialled 111 instead. When the dispatcher asked what was wrong, she said something she still can’t fully explain: “I think I’m having a stroke.” She didn’t know yet that she had two arteriovenous malformations in her left frontal lobe — one discrete, one diffuse. She didn’t know that within hours she’d be helicoptered to Wellington Hospital for an emergency craniotomy, or that the following Monday a neurosurgeon named Dr. Woon would spend thirty hours trying to remove both malformations from her brain. She just knew something was wrong, and that her daughter was in the back seat, and that she couldn’t keep driving. That moment — pulling over, self-diagnosing, refusing the urge to simply lie down and rest — may be the reason she’s alive. What happens when an AVM bursts in the brain An arteriovenous malformation is a tangle of abnormal blood vessels that connects arteries directly to veins, bypassing the capillary network that normally regulates blood flow. Most people with an AVM never know they have one. But when an AVM bursts in the brain, blood floods into surrounding tissue at high pressure, and the consequences are almost always severe: haemorrhagic stroke, seizures, sudden neurological deficits, and in many cases, death. Jennifer’s first surgery controlled the bleeding. The second, five days later, was supposed to remove both malformations. It didn’t go as planned. The surgical team discovered that blood flow to the first AVM was feeding the second one, causing the brain around it to swell. Dr. Woon had to make an impossible decision in the middle of the operation: let her die, or remove a portion of healthy brain tissue along with the malformation. He chose to keep her alive. The surgery took thirty hours. When it was finally over, he called her husband and said, “Well, you’ll be lucky if she talks.” The six weeks she can’t remember Jennifer has no memories of the first six weeks after her AVM burst. She was in a medically induced coma for the surgery, then in intensive care, then transferred to rehabilitation. Everything she knows about that period has been told to her by other people. When her memory started returning, she found herself in a rehabilitation ward in Masterton, using adult nappies, unable to sit up in bed. The front of her skull had been removed and wouldn’t be replaced for months. She wore a protective helmet whenever she walked. And yet — she insists — she felt fine. [Quote block — mid-article] “I kept saying, ‘I’m okay, I’m fine. You guys should just take it easy around me.’ But of course, I wasn’t really fine.” — Jennifer Tomscha The honest recognition of what had happened to her didn’t come for almost two years. It took that long for her brain to have enough capacity to think about her brain. The myth of the one-year recovery window Most stroke survivors are told, either directly or by implication, that the first year matters most. That after twelve months, improvements slow. That after two years, you’ve plateaued. Jennifer’s experience — and the experience of nearly every long-term survivor interviewed on this podcast — contradicts that narrative. Four years after her AVM burst, she is still discovering what recovery means. Her academic writing, once her profession as the Director of the Writing Program at NYU Shanghai, doesn’t flow the way it used to. She can’t recall songs from memory anymore, or sing the ones she used to sing. Her aphasia shows up most at night, when she’s tired. She still takes an afternoon nap most days. But she’s also finishing a PhD. She can read as well as she ever could. She’s speaking, articulately, in a podcast interview eighty minutes long. And the parts of recovery she thought had stopped improving are, quietly, still improving. What Jennifer wants other survivors to know Her advice, offered near the end of the conversation, is short and unsparing: “You can rest, and that’s okay. You can be as slow as you want to be, and that’s also okay. But don’t give up. Just keep going — at whatever pace feels right.” It’s a rejection of both the productivity culture that tells survivors to push harder and the clinical culture that tells them to accept their limits. Recovery, for Jennifer, isn’t a race against a deadline. It’s a long, patient process of finding out what comes back and learning to live fully with whatever doesn’t. Bill’s book and community If Jennifer’s story resonates with you, Bill Gasiamis’s book — The Unexpected Way That A Stroke Became The Best Thing That Happened To — explores the same territory: the slow, unexpected, sometimes beautiful work of rebuilding a life after a brain event. Get the book here Readers who want to support the podcast and connect with the community of survivors it serves can do so at Patreon. Support on Patreon This blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan. Jennifer Tomscha: An AVM Burst in Her Brain at 39, and the Four-Year Climb Back to Herself She self-diagnosed her own stroke while driving with her daughter. Four years on, she’s still discovering what recovery really means. Highlights: 00:00 Introduction and Background 10:00 Reflections on the Experience 18:00 Long-term Effects and Adaptations 26:45 Identity and Self-Perception Post-Stroke 38:48 The Long Game of Recovery 51:07 The Journey of Recovery 01:03:42 The Evolution of the Podcast Transcript: Introduction and Background: AVM Burst in the Brain Jennifer Tomscha (00:00) Dr. Woon was my neurosurgeon. And he just said, I’ll never do another surgery like that ever again. it was really long. And I think he definitely had made me worse. Like they had taken out. too much of my normal brain. when he called my husband after the surgery was over, Dr. Woon said like, well, you’ll be lucky if she talks. he was just so discouraged from how the AVM surgery went. when I finally talked to him on Zoom. was so you And I was like, yeah, yeah, yeah, of course I can. He was like, will you show me? and I walked up and down the room and he was like laughing so hard at my being able to walk. He was like so enthusiastic about it. Bill Gasiamis (00:44) Welcome back everybody. I am Bill Gassiomas and my guest today is Jennifer Tomche. In March, 2022, Jennifer was 39 years old living in New Zealand, finishing the first year of a PhD program when something happened to her brain that changed everything. What followed was a medical emergency unlike anything I’ve heard described on this podcast and a recovery story that quietly dismantles one of the most damaging myths in stroke survivor community. That after a certain point, the window for improvement closes. Jennifer is four years out from what happened to her. She still takes an afternoon nap every day. She still notices the edges of what her brain can and can’t do. And she is also finishing a PhD, raising two children and speaking with a clarity and warmth that will stop you in your tracks. This is a conversation about what it actually means to play the long game and why might be the most important thing any survivor can do. Before we get into it, if this podcast has been part of your recovery journey, I’d love for you to check out my book, The Unexpected Way That a Stroke Became the Best Thing That Happened, at recoveryafterstroke.com/book. And a genuine thank you to everyone supporting this work on Patreon. If you wanted to support the show, you can go to patreon.com/recoveryafterstroke. really helps me keep the conversation going. Let’s get into it. Bill Gasiamis (02:12) Jennifer Tomscha welcome to the podcast. Jennifer Tomscha (02:14) Thank you. I’m glad to be here. Bill Gasiamis (02:17) It’s lovely to have a local with me. Usually all my guests are from the United States or Canada or the United Kingdom. You’re just a hop, skip and a jump away in New Zealand. Jennifer Tomscha (02:20) Yeah. Mm hmm. Yep. Yep. I’m American originally, but we moved here in 2020. So ⁓ we I’m grew up in Iowa. And then and then I after but we were living in Shanghai for us for almost seven years, my husband and I were living in Shanghai and I was teaching at New York University, Shanghai and then when COVID happened in China. Bill Gasiamis (02:35) Where are we from in America? Jennifer Tomscha (02:54) they told us to leave the country because it was where it started. So, and we had two kids, so my husband didn’t want to go back to the United States. And so my sister lives in New Zealand. So we moved here and then we just stayed here. mm-hmm. So, yeah. Bill Gasiamis (03:11) So in China, was it just a request? Was it a directive? What was the situation? Jennifer Tomscha (03:18) From New York University, they said if you weren’t a Chinese national citizen, they strongly urged us to leave because they just didn’t know how they were gonna manage it. everyone, mean, in China, they had had SARS in the early 2000s, so they had already had it. And so right away, everyone had their masks on. They were ready to… go and I was like, I want to get out of here. So we went to New Zealand and they also had a lockdown, but it was just for a month and then everyone could wander around because the virus was not here. we just stayed and I got into this PhD program. So that’s why we’re still in New Zealand. Bill Gasiamis (04:00) Wow. That kind of brings us to the first question I ask most people these days is what was life like before stroke? So there was a little bit of stuff going on. was, work in China. There was a bit of, ⁓ travel from the United States to China. was children, but daily life. What, what was that like before the stroke? Jennifer Tomscha (04:21) When I saw my stroke happened in March of 2022 and at that time I had been in my PhD program for about a year. And I was just finishing up my research proposal. And so I was doing that during the day and my kids were both at, I have an older son who was in second grade year two. And then I have a daughter who was in preschool. And so my days were I dropped them off at their schools and then I would work for a little while. And then I would. go and get them. So, and then they would come home and we would do all the other stuff in parenting. And my husband at that time was working at the library. So he had, he was at the libraries from nine to five every day. So he was at work. And that’s what, that’s what we were doing. Yeah. When I had my stroke. I was busy trying to finish up this research proposal. And then, yeah. Bill Gasiamis (05:14) 39 years old at the time as well. Jennifer Tomscha (05:16) Yes, was 39. Bill Gasiamis (05:18) any signs, any kind of inkling that something was not right. Jennifer Tomscha (05:23) I didn’t, weirdly, so I’m trying to think about, my whole life I’ve had this thing where if, especially at just certain points if I hit my, this is maybe nothing to do with anything, but if I hit my elbow or my wrist, then I would pass out. And sometimes I would have like a little seizure while I was passing out. So wasn’t just like a regular fainting, it was like a seizure. And I had some of those in high school and I actually went to the, hospital for those at one point and I think they didn’t know what that was and they just did an EEG. I don’t even think we had an MRI where I lived. So I didn’t really know and then that sort of passed. But I was feeling when I have a daily journal that I was writing and when I go back and read that daily journal, the whole, for a couple months ahead of time, I was like, I just feel kind of weird. I don’t feel great. I feel like a little bit sick and I don’t know what’s wrong with me. And at that time they were allowing COVID to enter New Zealand. They were putting it in. So I was like, I think I might have COVID, but I took a bunch of tests. They were all negative. And then my stroke happened on Tuesday, but the Friday before I was so sick. And then that weekend I was really sick too. And then I got, like, I kind of felt like I woke up, I felt really nauseous. And then I felt better on Monday and Tuesday. And Tuesday was when my stroke happened. So I think that was all, it was all, think, my body reacting to, I was probably bleeding in my head at that time or something. mm-hmm. Bill Gasiamis (06:57) I got it. And we’re to have to go back and talk about how it was that when you got hit on your, on your wrist and your elbow, how hard was the hit? Jennifer Tomscha (07:05) I don’t know. Not super hard, I just, I don’t know what, I actually don’t know, and maybe it’s nothing to do with it. You know, maybe it’s something else in my body that I am prone to fainting. But I don’t know, I don’t really know why that, and maybe it wasn’t anything like that. But I had one day when I was 16 and I passed out three times and that did seem kind of funny. And I went to the doctor and I passed out while I was at the doctor’s office. So they were like, there’s nothing wrong with you. So they put me to the hospital. They did the EG. stayed the night. And then they were like, there’s nothing wrong with you. So that was it. But I think if nowadays they probably would have done an MRI, maybe, and they would have seen that I had my AVM and my whole life would have been different because I wouldn’t have done all the stuff that I’ve done now. Like my mom was like, if we had known you had had an AVM, you would have gone to school. in Sioux City, you know, or we would have done something to keep you nearby because we would be worried about you. Instead, I was just like, doing whatever I wanted to, which is good. Bill Gasiamis (08:14) Laze, but that’s kind of good. But also I get the preventative thing. One of the, my former guests had a daughter who had an AVM and I think she was five when she passed away from a bleed in the brain because of an AVM. That’s horrific. And one of the, it’s actually worth listening to that episode and it’s worth me interrupting this right now to jump on and find that episode so that I can share it with people. And this particular lady has made it her life’s mission to raise money, get an MRI machine and do preventative scans for people in case they have an AVM or some other undiagnosed neurological condition. I think it’s Gina. Gina Keely. OK, it’s. And her ⁓ foundation is now called the Paige Keeley Foundation, it’s the most heartbreaking story. It’s episode 141 and I’ll have the link in the show notes and I’ll have it in the YouTube description. So for anyone listening, jump back and have a look at that. And also maybe even consider supporting the foundation because the story is heartbreaking and the efforts that this lady is going to ensure that this doesn’t happen to other people is just amazing. So. I wanted to, I raised that because I had a, in 2011, no, no, in 2010, about 18 months before my actual AVM bled, I had a really terrible negative episode, nauseous, room spinning, like all the signs of stroke, but completely missed the, completely missed Jennifer Tomscha (09:47) Mm. Bill Gasiamis (09:55) the AVM when I went and actually had an MRI. So yeah, I went to the hospital, gave them my, rundown of what was happening to me and they were so switched on and they got me in and they did all the tests, but they didn’t find anything because they didn’t know what they were looking for. And there was no obvious sign of bleeding. So they didn’t dig deeper. And I have a friend of mine who is a radiographer who actually did my MRIs Jennifer Tomscha (09:58) ⁓ really? Mm. Reflections on the Experience Bill Gasiamis (10:22) when I was in hospital being treated after my AVM burst in 2012. And he said to me, the preventative stuff is very difficult because if you don’t specifically know what you’re testing for, you don’t know how to set up the machine and how many slices that it needs to take and at what resolution. So that when you deliver that to the radiologist and they’re looking at it, can they see an AVM and then pass that on? Jennifer Tomscha (10:37) Mmm Bill Gasiamis (10:49) that information onto the neurologist. They might even miss it, even though they’re doing MRI. But what Jena is doing, it sounds like they’re specifically going after aneurysms, AVMs, other malformations, and therefore they have kind of this better opportunity to find it. So if somebody is considering getting a preventative scan of their brain, you have to be very specific. Jennifer Tomscha (10:53) Bye. Bill Gasiamis (11:14) with the team of doctors, radiographers, neurologists, as to what you want them to look for and make sure that they adjust the scan so that it’s fit for purpose. Jennifer Tomscha (11:25) That’s interesting. That’s really interesting. Bill Gasiamis (11:26) Yeah. So what was the day of the stroke like? Was it, you said you’re feeling better on that Tuesday. Jennifer Tomscha (11:34) Mm-hmm. I had a good day. I have like lots of notes from my research proposal and I went to pick up. I don’t know why I did it this way actually. I went, my daughter’s preschool is in our town, Greytown, and I went and picked up her first and then I went to get my son. His school is a Montessori school. It’s in one town north. And so I went and got her and we were driving in the car and when I turned onto the highway that connects Greytown and Carterton, I just felt like a wash of dizziness and I started losing sight, I think, in my right eye. And it’s seven kilometers from Graytown to Carterton. And right before we got into Carterton, I pulled over onto the side of the highway. I tried, so by that time I think I had lost most of the sight in my one, my right eye. And so it wasn’t very long actually. And so I tried to call my husband, he didn’t answer. And then I just called 111 and I was like, I don’t know why I was like, I think I’m having a stroke, but I don’t know why I even thought that actually. Do know what I mean? I just, was like, something is wrong with me. And so my daughter was fussing in the back and, I don’t really remember anything after that. I don’t remember the paramedics coming. I don’t remember talking to anyone. but so when they, I think the police came first and then Then the paramedics came and they said I was nauseous, but talking a little bit. But then they moved me into the ambulance and, I started, choking and, or something, and they had to intubate me in the ambulance. And then they took me in. I was helicoptered off to Wellington hospital. So. Bill Gasiamis (13:12) How did you feel about it? I know you did the right things. You nailed it. But how did you feel? What were you thinking? I was completely oblivious to the risk I was at or in. Jennifer Tomscha (13:14) Yeah. Mm-hmm. Mm-hmm. I don’t know. just, let’s see, I think… I think when I was losing my vision, that was hard. I mean, I’m really lucky. There was a little ⁓ path on the side of the road right before you enter Carterton. So I pulled over there so I could still control the car. You know what I mean? I wasn’t so bad. And I could dial 111 on my phone. I could still think about those things. But it wasn’t very long after I dialed 111 and talked to those people that I’d that my memory is gone. So I think, I mean, I have spent a lot of time trying to like go back and figure out like, what was it? What could I have done early? know, like I was really lucky I was in the car, because honestly, because if I was at home, I might’ve like laid down and taken a nap and not called anybody actually, or called Dan and half have not answered. So then I could just see myself. Bill Gasiamis (14:14) you Jennifer Tomscha (14:22) It was actually really lucky that I was in the car with my daughter because it made me, I mean, I couldn’t keep driving very well. And so it made me pull over and it made me, I’d have to do something because I wasn’t in town. So I had to like figure out how I was going to manage the situation. And so I was really lucky actually that I was in the car and that I was in a public space where I was easy to find and like I could, so I felt like really lucky that all that happened. in that time period, but also that soul that my daughter was with me because it made me, I had this like parental responsibility that I had to, I couldn’t keep driving with her in the car. Like I just, I knew I had to do something and quickly. I feel like, I feel really lucky that that was the situation that I was in because I could see a different day where I didn’t go get the kids at that time. And I maybe would have tried to take a nap and it would have been totally different. So you know what I mean. Bill Gasiamis (15:19) It’s such a common thing for people to go, oh, I’m not feeling well. I think I’ll just go lay down and have a rest and see if I can just get over it, sleep through it or whatever. yeah. And then it just leads to even more and more trouble or problems. The fact that you said, I think I’m having a stroke, right? That is so cool and bizarre and amazing. Jennifer Tomscha (15:29) Mm-hmm. Mm-hmm. The guy was like, why? And I was like, well, I’m losing my sight. I was like, I mean, I don’t know how it was. I was like, why do you think you’re having a stroke? I was like, I don’t know. But there was something wrong. You know what I mean. Bill Gasiamis (15:52) Yeah, that’s such a good question for me. Why do you think I’m going to strike? I don’t know, but I just came up with it. What? That was enough though. Like that was such a response from you to say, I think I’m having a stroke. It’s very, very rare that people get there, but the fact that you got there kind of gave, gave them also like an understanding of how to attend the site and what to do. Jennifer Tomscha (16:01) Mm. Bill Gasiamis (16:18) And that saves time as well. That saves a ton of time. Jennifer Tomscha (16:21) Right. Mm-hmm. Mm-hmm. Bill Gasiamis (16:23) and gets them, even though you may have been wrong, right? Gets them looking in the direction because they’re already got that in their mind. And then, well, let’s look at that first and then let’s suss it out. She might be completely wrong. But I walked into the hospital after my, while I was having the third blade and said, I’m having a brain hemorrhage or something like that. And I was in the hospital upright, standing, looking normal and Jennifer Tomscha (16:27) Yeah. Yeah, yeah, yeah, that’s true. That’s ⁓ Mm-hmm. Bill Gasiamis (16:51) They were looking at me like, okay, what are you on? This guy, this guy must be on something because it doesn’t look like he’s having a stroke. And then I had to try and convince them, but I wasn’t giving them my contact details. So they weren’t able to bring up my record. And all they were saying was just give us your name, give us your name. We’ll put it in the system. We’ll have a look. And eventually they got it out of me and, ⁓ and I was right. But yeah, such a good thing. Jennifer Tomscha (16:54) Oh, yeah, yeah, yeah, uh-huh. no. Hmm. you Bill Gasiamis (17:21) I love those little bits and pieces that go well together because you often hear I often hear the bits and pieces that didn’t go well and and it turned out differently and how old was your daughter at the time? Yeah, wow. Jennifer Tomscha (17:30) Mm-hmm. She was three and a half. And so she was still in the backseat, know, backwards in her car seat. And then we stopped and she was like, why are we stopping or whatever in her three and a half year old voice? And I was like, I just had to make a couple of phone, you know, I don’t know what I said to her. And then I think when the police came, she was asleep. Like she fell asleep back in the car. then, and then. It’s just, I, I’ll, so then for the next six weeks I don’t have any memories of anything. So all, all of the information has been given to me by other people. But, so, yeah. Long-term Effects and Adaptations Bill Gasiamis (18:04) So was quite a large blade after all of that. Jennifer Tomscha (18:06) Yeah, it was large. They took me, so I flew in the helicopter from Masterton to Wellington and I think they, by then my sister had gotten to the hospital and they, yeah, I think they said, yeah, they did an emergency, is it craniac? Or what’s the? Bill Gasiamis (18:25) Craniotomy, Jennifer Tomscha (18:26) Yeah, they did an emergency cradionomy and they saw that I was bleeding. And then they saw that I had this large left frontal or frontal lobe AVM. So, and then they said that at that moment they couldn’t tackle that AVM. So they, controlled the bleeding and then they, and they left my skull out and then, yeah. And then, then they, they talked to the neurosurgeon and He, that was a Tuesday and he said, why don’t you, I was in a coma, just keep her in a medical coma. And then Monday they would do the, the, the surgery to get rid of the AVM. Bill Gasiamis (19:05) And then that surgery happened. Jennifer Tomscha (19:07) That happened and it was, had my, actually had two AVMs. One was really discreet and they could see all the endings of it. And the other one was diffuse. I don’t really understand it, but, the neurosurgeon said there was like parts of regular brain in and around the AVM. I don’t really understand how that happens, but, ⁓ so they started in the morning and they did, they got rid of the one AVM. They were taking it out. And then something about the blood vessels that had some of they had been putting blood into that AVM. They then started feeding into the other AVM. So then that AVM made my brain sort of swell where that AVM was. And so the neurosurgeons had to decide if, mean, basically it was like, let me die. because they couldn’t do anything about it, or they would get rid of that AVM and they would just take out the brain that was, the normal brain that was in the regular AVM. So they took, they decided not to let me die, thank goodness, and they decided to do that. so, but it was really long surgery, it was 30 hours, I think they just didn’t, yeah, it was really long. And… And I think Dr. Woon was my neurosurgeon. And he just said, when he went and sewed my head back together, he didn’t think I was listening, but I was in the other room and I could hear him after I had my skull put back in. And he was like, I’ll never do another surgery like that ever again. it was too, it was really long. And I think he definitely thought that he had made me worse. Like they had taken out. too much of my normal brain. when he called my husband after the surgery was over, like they didn’t call him. Dan, my husband was waiting for the whole 30 hours and they only called him one time at like 11 o’clock that night. And they were like, we’re finishing up. But then they had all this other stuff happen. So they didn’t actually call him again until noon the next day. And Dr. Woon said like, well, you’ll be lucky if she talks. Because we had to take out. he was just so discouraged from how the AVM surgery went. And so, yeah. Bill Gasiamis (21:24) Dr. Woon needs to give himself way more credit. Jennifer Tomscha (21:27) I know, I know, I also think that. I also think that, I mean, it’s, I mean, neurosurgeons, they’re, it’s amazing that you could, I’ve just, it’d be so weird if your job was to cut people up and go into their brains and try and fix something in that organ, which is so mysterious, do you know? Like, yeah, so. Bill Gasiamis (21:48) Wow. 30 hours. So he also is thinking in his career, he’s probably never going to come across another 30 hour surgery. Yeah. Well, only if it’s necessary to make somebody better, but yeah, we definitely want to avoid that if we can for every human on the planet and for Dr. Woon, but I just, I’m just completely in awe of these people. I bumped into my surgeon last year. Jennifer Tomscha (21:57) I hope not. mean, I hope, you know, yeah, I don’t think, yeah. Right. Mm-hmm. Bill Gasiamis (22:15) because I had another MRI, because I had another bout of headaches and all that kind of stuff. still, you know, it hasn’t ended. I still go through all these things. And I mean, I mean kind of, I get emotional when I’m around her and when I’m in the room with her. If she told me to jump off a cliff because there is something positive down there and I would do it. If she said, if she said punch a hole through that wall, I would do it. Like I would do whatever she said because Jennifer Tomscha (22:20) no. Yes. Yeah. Bill Gasiamis (22:44) I just cannot get over the, know, when, you know, when you make a decision, some people, my phone is weird. I’ve never done this before, but you have a piece of fabric and it’s got some lines on it. And you know, if you cut it wrong, that you can’t use that piece of fabric for that pair of trousers anymore. You’ve got to use it for something else. Like that’s a pretty mild problem to happen. Like you cut wrong, you go in the wrong place. You pop that aside and. You’re useful. If you do that to a human, there’s no going back. And you’ve got to make that decision every single time you walk into the operating theater. And imagine his family. Like, I feel like we need to reach out to his family and say, is there anything we need to make up for? I know we had your husband for 30 hours, but like, how can we support your family now that he’s done that for my family? Jennifer Tomscha (23:40) Yeah, yeah, yeah. Bill Gasiamis (23:40) Do you know, like it’s so interesting that these people have been able to get to that level of capability. Jennifer Tomscha (23:49) Yes. Bill Gasiamis (23:50) with humans and helping people stay alive and be here with their family, be a mom, be a wife, be a daughter, be a member of the community. Jennifer Tomscha (23:51) Mm-hmm. Yep. Yep, exactly. It’s just, it’s amazing. It’s just so, and I’m so grateful to him and he had another neurosurgeon working with him and yeah, it did, I mean, yeah, it’s amazing. I always think though, I’m trying to think about like, did, why, if he cut out those parts of my brain, why weren’t they, why? I mean, I have some things I can’t do that I could do before. Like I can’t, this is so weird. I can’t recall songs very well and I can’t sing songs from memory, like at all. Like that part of my brain is done, which is fine, but I used to sing a lot. but I think because if the AVM is there when you’re in your, if it’s there when you’re in your mom’s womb, like if you’re, when you’re developing. It’s probable that my brain was like, there’s a little issue here in this brain. We’ll move some of the stuff away from, don’t you think that would be, yeah, because I just think like, I think where my AVMs were, my brain was like, we’re gonna move, we’re not gonna put stuff by those AVMs because yeah, because your brain is really adaptable. Like that’s one of the things that I’ve been reading since I had my stroke. Bill Gasiamis (24:59) Wow. Yeah, I’ve never thought about that. Why not? That makes sense, Jennifer. Because it’s… Yeah. Jennifer Tomscha (25:18) My mom’s like, your brain is so adaptable and flexible and it can do different things. You just have to try doing things, you know, and failing. Bill Gasiamis (25:26) And the blood flow is not right. So you imagine with blood flow not being right, then the brain’s not developing correctly in that spot anyway. And it’s just developing where there is blood flow. Jennifer Tomscha (25:37) Yes, exactly. Exactly. I just I feel like that makes sense to me. And that’s why if you’re the neurosurgeon, I mean, you really don’t know. Like Dr. Woon didn’t know what was there. But I just feel like maybe my brain when it was developing was like, well, this isn’t a good spot and this other spot isn’t a good spot. So we’ll just do everything in a different place. And the brain is really you can really do that. I think your brains are really plastic in the way that they can order themselves. And so I So it’s still all Dr. Woon. I’m just so grateful to him and everything that he did. Because honestly, I feel like I come from the States. I don’t know that a neurosurgeon, I just don’t know how long a neurosurgeon would have, they might be like, I’m done, I can’t do this anymore. I just don’t really know. It just all depends on the doctor and who sees you and everything. So I just felt so lucky to have been here. Bill Gasiamis (26:30) Imagine doing a 30 hour shift on any day for anything. Jennifer Tomscha (26:34) No. And the thing about neurosurgery is like you’re in, I mean you’re doing like, you’re in a microscope or whatever doing that little and you’re tying off a little blood vein and I don’t know, it’s nuts, it’s so nuts. mm-hmm. Bill Gasiamis (26:39) them. Identity and Self-Perception Post-Stroke Yeah. And they talk about, you know, how dangerous it is to drive when you’re off a take when you haven’t slept, when all those things. And these guys are going for 30 hours and they’re doing the most intricate, life altering surgery and it all goes perfectly well. So how wrapped was he when he realized how well it went. Jennifer Tomscha (27:09) I didn’t talk to him until June, so that was at the end of March. And then I was in the ICU for a while. then they moved me to Masterton and I did rehab. And then I went to this last clinic, this ABI, this brain clinic for people who had brain injuries. And that’s when I finally talked to him on Zoom. And he was like, so can you walk? And I was like, yeah, yeah, yeah, of course I can. He was like, will you show me? and I walked up and down the room and he was like laughing so hard at my being able to walk. He was like so enthusiastic about it. I was, you know, I mean, we can talk about this too. was, everyone was like, when I finally have my memory back, I was in Masterton and I was using a diaper. I couldn’t walk. I couldn’t step in bed, but I remember being, actually, ⁓ I remember being like, I’m fine. I’m fine. Everyone is just fussing over me. But of course, they were right too. Do you know what I mean? But I was like, I’m okay. Everyone needs to just like, let me just relax around me. And everyone was like, everything I did, they would be like, you know, I couldn’t feed myself. And then, you know, there’s all this stuff. And I was like, I’m really okay. You guys should just. take, like, I’m fine. I kept saying that, like, I’m okay, I’m fine. You guys are all. But of course, I wasn’t really fine, but I felt like, Bill Gasiamis (28:36) It sounds like you weren’t physically there yet, but you were emotionally and mentally fine. Like it sounds like you were on the, you kind of knew that things were going to turn out or. Jennifer Tomscha (28:48) I think so. I think, or maybe, I always think like maybe you can only manage so much. like at that time I had my front part of my skull was gone because it had been taken out when they did both my surgeries. And so I had to wear like a rugby helmet or whatever when I walked. But otherwise I would sit in my room and it looked terrible. It’s just so terrible. but I just didn’t really recognize that. Like I didn’t, wasn’t, I couldn’t do all the things at once. So I think I was just thinking about like, and finally at the middle of May, my mom and sister, I still had my like long hair in the back and short in the front. So my sister was gonna cut the long hair in the back. And I saw myself in a mirror and I was like, that doesn’t look very good. You know, like I wasn’t, I don’t feel like I was totally aware. I wasn’t, my brain wasn’t. totally back in it. It’s a long time to recover and I feel like my brain only gave me, I don’t know, I felt like I couldn’t think about my own brain, maybe for like a year or something, really think about it in a second order way. Bill Gasiamis (29:59) allow yourself to kind of observe your state, your brain condition. Jennifer Tomscha (30:02) Yes. Yes, I think I was like, it was like that my it was like maybe in October of the next year, October of 2023, where I was like, Oh, I can think about my brain and what it is in a way that I couldn’t. Because I don’t know, you have to go through, you just have to relearn a lot of stuff. But I didn’t like I’m lucky, like, it didn’t affect my reading, so I could read right away. I’m not a very good writer, like, I don’t have good handwriting anyway, and my handwriting still maybe isn’t as good as it was before I had my stroke, but, yeah. I feel like, felt like, the actual healing was a longer process than I thought it was going to be, especially right when I first woke up, because I was like, I’m fine, but I wasn’t really fine, actually. Do you know what I mean? Bill Gasiamis (30:55) 100%, they can make doctors and neurosurgeons do a 30 hour surgery, find that part, fix it, ta-da-da-da-da, do all those things, but they can’t make a helmet for God’s sake look half decent after they’ve taken your skull out. Like as if it’s bad enough, have skull missing and then they put this terrible looking thing over your head. Jennifer Tomscha (31:11) No. It’s true. It’s true. It’s true. Yeah. Yeah. So, yeah. Bill Gasiamis (31:22) And I know for women like hair is a big deal and become. Jennifer Tomscha (31:27) It was really, I have always liked my hair and it was, I had short hair for about a year and a half maybe, you know, and I started growing out more and that was a little bit hard. I felt like that’s really vain, but I was like, man, I just did not like that short hair. Cause it’s not very, I don’t know. I just, wanted my old hair back. So I was lucky that it came back though. You know, everything, it’s not cancer. It’s a different thing. So you have a different, you know. Bill Gasiamis (31:51) I never would have told you that your hair didn’t look good, but my favorite hair is brunette curly hair. Yeah. My wife is a brunette naturally and she has curls in her hair and she straightens it all the time. I haven’t seen her brunette curly hair for 30 years. Jennifer Tomscha (31:57) Thank you. ⁓ yeah. no. Bill Gasiamis (32:13) I’m like, woman, that’s what I like. Like that’s my thing. you stop straightening your hair, but I can’t get it to stop. ⁓ Jennifer Tomscha (32:20) Yeah, that’s fine. Everyone has to do what they want with their hair and everything. you know, that’s something that one thing I think about my stroke is you just got to go live your life. Like you can’t and you’ve done that beautifully. You know what I mean? Like this podcast is amazing. it’s just like, you just got to go do what feels good for you at the time and what you want to do and just do it. and stop saying no, or you know what I mean. Bill Gasiamis (32:49) I’m trying. am. know exactly what you mean. One of the biggest things is identity is a big, big thing. And I don’t talk about me so much. I’ll talk about what happened to me, my stroke journey, but I don’t really give people a look behind the curtain. You know, sort of really understand what’s going on. This is just all a facade. And one of the challenges that I have is this painting company that I started 20 years ago was the main source of income. And it stopped abruptly seven years in when I became. Jennifer Tomscha (33:02) Hmm. Mm-hmm. Great. Bill Gasiamis (33:17) and it sort of still kept bubbling along. And then I got back to it in 2019 because my clients were still calling me and I was well enough after seven years of going through stroke and all the stuff of surgery, learning to walk again and all that. I was good enough to sort of get back into it. And of course in 2019, I only had six months and then we were in lockdown. And then in lockdown, we had two years of lockdown in Melbourne, and then I’m trying to keep that thing going again. And then there was this massive influx of work after lockdown because everyone’s going, I’ve been looking at these walls for two years. They look terrible. Let’s get them painted. They had spare money because they hadn’t spent anything for two years. And that was like, let’s do this and let’s do that. And there was this massive amount of work for about 18 months. And then that was done. It was gone. And it’s been a steady decline since as soon as Trump opened his mouth and did something in Iran and said what he said, and he plummeted like we’ve got no work. And I’m okay to have no work because I’ve been there before and we’ve managed our affairs so that we’re okay. But I can’t employ people right now at all. That’s gone. And getting people back and starting that again is going to be extremely difficult because the curve Jennifer Tomscha (34:27) Yeah. Mmm. Hmm. Bill Gasiamis (34:36) is not it’s not going to be a sharp dip and then it’s going to be a big spike of work and demand and all that kind of stuff. this podcast has been my saving grace every time I’ve needed to occupy myself with a project and make it so that I’m not thinking about me. The podcast was there. I did. I did an interview. It got me over the line. But now the biggest void that’s going to occur is not that I’m going to Jennifer Tomscha (34:47) Mm-hmm. Bill Gasiamis (35:05) potentially not have work in this field and after shut it down, which is gonna be fine if I do that, I’m okay with that. I’ll kind of pass it on to my younger son who’s looking to do some work in a similar space. I’ll give him the phone number and he’ll be able to take those types of inquiries and then he’ll do it on his own, like very small, the way I started at the beginning. And is that I’m gonna have all the time in the world. Jennifer Tomscha (35:23) Mm. Bill Gasiamis (35:29) on my hands to do the thing that I’ve been avoiding doing because I had this business that relied on me and the thing was to do public speaking. Right. And to actually do it the way that I’ve wanted to do it for more than a decade, which was to talk about the topics that I want to talk about, which no one’s talking about post-traumatic growth, overcoming trauma, how that’s applicable in organizations. Jennifer Tomscha (35:38) yeah, yeah, Mmm. Bill Gasiamis (35:56) how to treat people better in an organization so they have less mental health issues, so they have less physical issues, so they’re sick less, so they enjoy their work, so they’re not hating their life. And now I’m going to have all the time in the world to do it. And I’m shitting myself. That’s the biggest issue, right? So that’s a little bit of a look behind the curtain. I am loving this. This is an amazing thing. And I do remember when I first started it, I was concerned about what people would say about me. You’re going to sound dumb, Bill. You you’re not going to, you know, what authority do you have? All those kinds of things, they were coming up in my head. And then when I wrote the book, the same thing, I wrote my first book, The Unexpected Way That a Strike Became the Best Thing That Happened to Me. Everyone has said, don’t write that book. Don’t write that. Jennifer Tomscha (36:27) Mm. Bill Gasiamis (36:39) Don’t let that be your title. It’s bizarre, it’s weird, like it’s strange, it’s too long and all these things. So I did it. And of course, the first time I spoke about it on YouTube, one of the first comments was a negative comment on my YouTube channel. It’s like, ⁓ okay. My God, that’s a kick in the guts. Jennifer Tomscha (36:44) really? ⁓ yeah. Bill Gasiamis (37:03) So those little kicks in the guts that I’ve had along the way have been few and far between, but they’re the ones that seem to persist the most. And they stay in that part of your head, which says, you know, that public speaking gig, you’re probably going to do the first one and they’re going to say you were terrible. And then you’re to feel all sad at 52 about, you know, yourself and all these things. Jennifer Tomscha (37:15) Yeah. you Bill Gasiamis (37:29) how you’re going to overcome that emotionally and mentally and all this kind of stuff. It’s like, Bill, relax. You’re gonna have time to build your new career at 52. You’re gonna have time to do it. So that’s like, all right. I find myself getting pushed into a corner and only then responding with, all right, all right, I better step up again. I better do this again. Jennifer Tomscha (37:33) Mm-hmm. Yeah. Mm-hmm. Mm-hmm. Mm-hmm. Yeah. Bill Gasiamis (37:58) Very strange, re-imagining yourself and recreating yourself after stroke is a huge thing because you’re also doing it with a stroke brain. Whereas before I had no excuses, I was doing it still. Like the pattern is the same. The stroke brain part of it is an obstacle that I wish I didn’t have, but somehow this stroke brain part has made me do things I’ve never done before. Jennifer Tomscha (38:14) You The Long Game of Recovery Bill Gasiamis (38:27) a podcast, a book. You know, I was a tradie. I was like, I didn’t study. didn’t read. In my, by the time I got to the age of 37, honestly, Jennifer, I reckon I’d read maybe seven books. And they were about this criminal underworld figure in Melbourne who had this, who had this career and of being like really terrible and somehow. He was the thing that I was interested in reading about. Like that’s the only thing that captured my imagination. Everything else, everything else I picked up from listening to podcasts or watching shows on TV and that kind of stuff. So I wanna just, I wanna make people understand that the battles that you’re fighting, I’m fighting, it’s real. Like you’re not doing it alone. Everyone’s fighting this. How do I reimagine myself? Jennifer Tomscha (38:56) Bye! Bill Gasiamis (39:20) after stroke, you know, I don’t tell people I’m an author. Still, this book has been out for three years. I’ve had amazing reviews. I’ve had a couple of, you know, negative reviews and that’s okay. I’m not, I’m not an intellectual. I haven’t, I’ve never studied how to write literature, any of that stuff. And it’s sold about seven or 800 copies just through the podcast. Jennifer Tomscha (39:21) Mm-hmm. Mm-hmm. Mm-hmm. That’s pretty good. That’s actually quite a bit, I feel like. It’s quite a bit, actually. Mm-hmm. Bill Gasiamis (39:47) I feel like to like I don’t promote it. I don’t tell anyone about it just in the podcast. And it’s like, I still don’t say I’ve authored a book. Nobody knows. Jennifer Tomscha (39:56) You should say it. mean, I do think the what are you going to do after you have a stroke? How are you going to do it? It’s all very strange and scary, I think. And like, yeah, I, I totally get your feeling about it. And it’s just really tricky to know what is the You know, for me, I feel like I was in middle of my PhD, so I took 22 months or 20 months off of doing the PhD just to rest. And then I went back in and it was, it is still, it was really hard. I like, wasn’t very good at figuring out how to write in the academic way. Which was my position. I was director of the writing program at NYU Shanghai. So I was like, that was my thing. And it was very hard to figure out how to return to do the critical work of my thesis. was just, it’s just, I don’t know, my brain just couldn’t figure out how to do it right. It was really interesting. was like, the sentences I was writing weren’t as good. They probably still aren’t as good. You know, like when I look at what I was writing before I had my stroke, which is part of my thesis, and then the stuff I wrote after my stroke, I feel like I can tell a little bit of a difference in the fluency of my writing, for sure. So, yeah. And I just, so… Yeah, I don’t know. It’s tricky. It’s tricky to figure out. But I was really lucky, actually. I think the PhD was helpful because… I could just go at it on my own time and I could just take however much time I needed. And I, I had a deadline. but it was good to just, it was actually like a really good place to start to work my brain again, to be like, okay, I have to, I’m going to write on this author and what she thinks about character. And I’m just going to, and I have these other texts that I’m interested in and I have to figure out how I’m going to. Represent them in my own work. And so it was really good to do all that. It was a good stepping stone for me I think actually to get back into it and to see What I could and couldn’t do very well, like I feel like I’m a really good reader. I’m a really good Critic and I’m not so good at ⁓ writing down what I think anymore as well So I’m just I really have to work on and I don’t know how you get it back like Bill Gasiamis (42:26) articulating Jennifer Tomscha (42:28) Yeah, articulating what I mean and yeah, I feel like I can’t, I can’t say things as artfully or as proficiently as I used to. So I don’t know, this woman who is getting her PhD at Vic too, she’s like, she studies how people learn to read. And she was like, if you’re having problems with academic writing, you should get a, and I still haven’t done this, you should get an academic book and you should listen to it because a lot of learning to read is listening to how sentences sound. She was like, so you should listen to an academic book and that will help you think about how those sentences work and how they’re maybe different from like, I write fiction. So fiction is one thing and then this is a different way of writing. So she said that was one thing that she thought I should do to help. develop my proficiency in academic writing, which was really interesting. So. Bill Gasiamis (43:25) Yeah, it’s a different approach. You know, it’s coming from the auditory, you know, system and therefore the auditory digital system. Therefore you go in and you you, you pick up nuances that you wouldn’t have known were there if you’ve never heard an academic speak or if you’ve never read an academic document in that way. So you might read it. Jennifer Tomscha (43:28) Mm-hmm. Yeah. Bill Gasiamis (43:51) to get something out of it. Like, okay, what is this academic saying about this topic? But that’s not paying attention to the structure of how it’s written. That’s a different filter. Jennifer Tomscha (43:55) Mm-hmm. No, exactly. Mm-hmm. Mm-hmm. Exactly. So I thought that was an interesting way to think about, like, how I could get better at that thing. That was, like, a really important thing for me. That, for some reason, it did just get a little bit, I don’t know, stunted? Or I don’t know what happened, you know? Or I just haven’t been in academia as much. So you know what I mean? So, yeah. Bill Gasiamis (44:17) Yeah. Yeah, 100%. The skill is not as refined or, or practiced as your other skills. So it’s not the thing that you’re the best at. and you’re getting better at it. The thing about it is also, may I add you’re only four years out from all the drama that you had with your brain. So there’s a lot of healing to happen that is going to improve. That’s going to get better and better. And in four or five years from now, you will have Jennifer Tomscha (44:29) Mm-hmm. Bill Gasiamis (44:49) turn the corner again, you’ll see that there’s more and more improvement. It’s really important for people to hear this, who are three, two, one, five, six years in, there’s still heaps of healing and recovery to come. So it’ll happen. Jennifer Tomscha (45:07) Yeah, that was something that my husband and I, in my first year after my stroke, he would be like, go to the gym. And he did. He, I went to the gym and I, had me lift weights and he wanted me to like exercise. And he was like, what are you doing to improve your mind and your body over this first year? And I was like, I’m, I’m again, I was like, I’m fine. I’m really fine. And, and, ⁓ he thought I wasn’t doing enough. Like he wanted me to just go at it with this intensity. I don’t know. was an, cause I was like, I am going at it with my own sort of intensity, but he wanted me to be more aggressive than I wanted to or something. You know what I mean? He wanted me to be like, he wanted to see me really working at it and like sweating or doing, you know what I mean? And I was like, I don’t wanna, I don’t know. Bill Gasiamis (45:59) He wanted it to be more masculine. Jennifer Tomscha (46:01) Yeah, I guess. And he’s not very masculine guy. I mean, he’s a masculine guy, but he’s like, he was just he just wanted to see me sweating it out or doing the really see my focus. And I just yeah. And that has been an issue because he’s like, yeah, he’s just like, are you going to work again? I was like, yes, I’ll work. I just don’t know what I’ll do. And I don’t know if I could do a full eight hour day right now. I still take a nap every day in the afternoon. So But yeah, it’s just, don’t, yeah, so. Bill Gasiamis (46:34) It’s easy for a caregiver to say that because they haven’t had a stroke. Thank God. Thank God. ⁓ Jennifer Tomscha (46:40) No, I know. Thank goodness. Yeah, yeah, yeah. Actually, I mean, I feel really bad for Dan and my mom and my sister. Like, it’s actually worse to be the caregiver in some ways because you just, you don’t go through it. So you, you don’t really know what it’s like. Bill Gasiamis (46:55) I and you, and if you’ve got an imagination, a wild imagination, you could turn it into something completely way worse than what it is. And if you’re ignorant, which most family members and caregivers are, let’s face it. And that’s okay. Then you do the other thing. You play it down and you assume she should be going harder than that or Jennifer Tomscha (47:11) Yeah. Mm-hmm. Bill Gasiamis (47:19) If I was, if it was me, I’d be doing that. But your brain has actually been injured and in that space, perhaps where motivation is for some people. And there is no way that you can make that person more motivated by willing them on or telling them to go to the gym or whatever. That could actually be missing the motivation part. So there’s a whole bunch of things that caregivers and family members miss. And it’s for me, it’s when I’m surrounded, when, when the people that are around me are Jennifer Tomscha (47:33) Mm-hmm. Bill Gasiamis (47:46) ⁓ people who don’t want to engage deeply in those types of troubles, life and all that kind of stuff. they’re great people. They’re just like, emotionally they don’t go deep, right? They love it that there’s ambiguity around like what’s wrong with me. Cause they look at me, I look right. And then they just go, everything’s fine. He looks amazing. I feel better now. And when I’m around him, I can just talk about dumb stuff. Jennifer Tomscha (48:07) Mmm, yeah, yeah. Bill Gasiamis (48:14) And we can talk about things that are not important and everything’s fine. And it’s kind of like head in the sand. It’s a, you know, one step, one emotional step removed from the actual goings on. And it kind of also helps me strangely enough, because then I don’t have to deal with their inability to handle actual life and the real things that are going on. Jennifer Tomscha (48:39) Mm. Yeah. Bill Gasiamis (48:43) that can just be living in La La Land and I don’t have to deal with that level of complexity. So it’s kind of, they’re both situations are helping me in a way. Whereas at the beginning I was taking that negatively. The thing I do, the thing I would like to do is challenge caregivers to listen to the podcast, especially of the spouse who I’ve interviewed. Jennifer Tomscha (48:50) Yeah. Yeah, that’s true. Bill Gasiamis (49:09) You know, and then a couple more after that to get an insight so that they’re not guessing or second guessing or think they know better, et cetera. No doubt about it. they, know, they know some things about us that they can see that we’re not doing a pattern in behavior that we’re avoiding. Perhaps they know that part and all that type of thing. But we’ll say, we’re also dealing with a messed up brain. So have a bit of a kind of a Q Jennifer Tomscha (49:13) Hmm. Right, right. Bill Gasiamis (49:36) be curious about where that person’s coming from, not how you’re feeling about where they’re coming from. And that’s what family members and caregivers do. They make it about them. And I had to say a few times to people in my circles, like, it’s not about you. Jennifer Tomscha (49:43) Right. Ha Tomscha Tomscha! Yeah, yeah, yeah, yeah, yeah. Bill Gasiamis (49:56) It’s actually really about me. cannot walk and I can’t use my left hand. It’s not about you. Like I know you woke up with a numb leg one day because you slept on it wrong, but it’s not the same. Jennifer Tomscha (50:05) Yeah, yeah, yeah. Yeah, yeah, yeah. That’s funny. Yeah. Bill Gasiamis (50:14) My wife was dragging my foot in the wheelchair. It had fallen off the, you know, the rest where your leg, your feet sit. It had fallen off and I hadn’t noticed. This is like day three or day four after brain surgery. And it was dragging underneath the footrest. And she noticed that the wheelchair wasn’t moving and she was shoving it until we realized. Jennifer Tomscha (50:22) higher. Bill Gasiamis (50:40) My foot was stuck underneath the rest and we had a laugh. that kind of like, that’s one of those, if those people were there and they saw that, they would realize like, it’s not about your numb leg when you slept on it weird one night. take your stuff and just, you know, park it for now. So it’s interesting. That’s kind of why I think I do this podcast. I think it’s for those Jennifer Tomscha (50:44) Yeah, yeah, Mm-hmm. Mm-hmm. The Journey of Recovery Bill Gasiamis (51:08) people if they, I’ve never told them that they should jump on, but if they, for example, get curious one day and they want to know what it’s like to be in Bill’s head, pick one of the 400 episodes. Just have a listen. Jennifer Tomscha (51:09) Mmm. I have a question for you. you, this is something that, so you think you could just, you can keep improving from your stroke. There’s not like a deadline. There’s not like a couple of years or any. Bill Gasiamis (51:36) One of the things I learned from my wife and my brother, my brother is my biggest nemesis. You he’s older and he’s the most loving guy. He’s the most supportive guy, but he has a weird way of doing it. Just, you know, we’re different characters, right? So he just is a bit different in the way. one, one of the things my brother said was that I picked up, I reckon it was five, six years ago is he’s in it for the long game. Jennifer Tomscha (52:03) Hmm. Bill Gasiamis (52:04) When I was young, I had 20 jobs in 10 years. He said two jobs in 40 years or 30 in 30 years. So he just chips away, works away, works away, works away. This is an analogy, right? But also a true story. My wife started her, her, her master’s in psychology. She only started that a few years ago, but the whole. Jennifer Tomscha (52:08) Hmm. Hmm. Bill Gasiamis (52:28) journey to get to the Masters of Psych started in I think late 2011 or early 2011, about a year before I ended up in hospital. She is just now finishing the last part of her Masters degree and she found a job literally a week ago in her field two days a week. Jennifer Tomscha (52:35) Mm. Mmm. ⁓ Bill Gasiamis (52:56) to work as a provisional psychologist so that she can get the 1500 hours of work in the field before she actually gets her actual full psychology license. And I’m like, dude, I get it. So what you’re telling me is that if you just start and never stop, you’re gonna see some kind of progress. And I apply that to… Jennifer Tomscha (53:08) Right. That’s amazing. Mmm. Mm-hmm. Bill Gasiamis (53:27) stroke recovery. I know that people are dealing with far more deficits that perhaps you and I show visibly and that their hand may not specifically work the way that it always that they wanted it to work or that the way that it worked before. But that doesn’t mean the brain’s not continuously continuously healing that part of the brain might be gone. But as far as healing the parts around the brain that are still there, that’s continuing. Jennifer Tomscha (53:28) Uh-huh. Mm-hmm. Mm-hmm. Bill Gasiamis (53:58) And if, and, and one of the questions that I have for people is like, is what I’m doing supporting my recovery or is it hindering my recovery? Because I’ve met stroke survivors who have gone back to the smokes, who have gone back to alcohol. And if you’re doing things that are getting in the way of recovery, then you’re not allowing the brain to continuously do what it does best, which is overcome challenges, rewire. Jennifer Tomscha (54:05) Mmm. Bill Gasiamis (54:25) find new ways around, know, develop new neural pathways and adapt. And that’s kind of where I think it’s at adaption, right? And the great thing about understanding these days about neurodiversity and understanding what somebody with ADHD goes through is the one skill they’re really, really good at is adaption. Jennifer Tomscha (54:31) Mm-hmm. Mm, that’s interesting. Yeah, yeah. Mm-hmm. Bill Gasiamis (54:49) because and people with dyslexia. my God, like some of the biggest, most wealthy billionaires on the planet had dyslexia. Richard Branson is a classic example of that. Yeah. And they adapt. They find a way to somehow overcome the normal world and be weird in the way that they see letters and what letters do and how they move on a page and all that kind of stuff because their brain adapts and they can just continuously improve their adaption strategy. Jennifer Tomscha (54:57) really? didn’t know that. Mm-hmm. Bill Gasiamis (55:17) to get to a point where no one knows that they have this condition. So that’s what I’m really passionate about. That’s why the podcast exists. I’ve interviewed in my 400 episodes, I’ve certainly interviewed stroke survivors who I’ve had improvement 10, 11, 12, 13 years post stroke, got a finger movement back. Yeah, got sensation back, something rewired. So yeah. Jennifer Tomscha (55:19) Right. Mm-hmm. really? That’s amazing. Yeah, becau

Learn how to fix it.CONNECT @linktr.ee/Klsurvivor101 SPONSOR/COLLABORATION Cafe Danesi https://share.google/O6Q4d9l76H4DjN0bBMEDICAL DISCLAIMER: Any content used in this or any other episode of SSTO are those of the creator and should NEVER be replaced for professional physicians help. #stroke #strokesurvivor #strokesurvivorpodcast #tbisurvivor #accountability #selfhelp #recovery #aphasia #communication #frustration #best #lifeafterstroke #swear

Bathroom challenges are one of the most common, and least talked about, parts of dementia caregiving. You've tried asking. You've tried reminding. You've tried everything. And it still isn't working. This isn't defiance. It isn't stubbornness. What's happening in the brain is making the bathroom one of the hardest spaces for someone with dementia to navigate. The bathroom requires more brain systems working together than almost any other room in the home.  In this episode I walk through the most common reasons people with dementia struggle with the bathroom — and what you can do about it. If you'd like to see this episode on video, you can hop on over to my YouTube channel here. → Join the Care Collective: https://tinyurl.com/re-sales-podcast  Get free weekly tools and tips in my newsletter, The Dementia Dose: https://tinyurl.com/dementiadose-podcast  ⏱️ CHAPTERS 0:00 - Introduction 0:24 - Common bathroom behaviors caregivers are dealing with 1:00 - Why the bathroom is cognitively demanding 2:00 - Interoception: why they don't know they have to go 3:15 - Apraxia and difficulty sequencing bathroom steps 4:15 - Aphasia and not understanding instructions 4:45 - Why the bathroom environment increases confusion 8:00 - Practical strategies to try   #dementia #dementiacare #alzheimers #dementiacaregiver --- Hi, I'm Dr. Natali Edmonds, a board-certified geropsychologist specializing in dementia care. Whether your loved one has Alzheimer's, frontotemporal, Lewy body, vascular, or mixed dementia, we believe that to create a dementia-friendly world, we must first create a caregiver-friendly world. This content is for educational purposes only and is not a substitute for professional medical advice. Always consult with a healthcare provider for medical guidance.

To celebrate Earth Day on April 22nd 2026, we are rebroadcasting our earth day episode from last year, where we speak with Dr. Abby Foster, and Suzanne Mungall, speech pathologists, about Earth Day, coming up on April 22nd. Suzanne and Abby share their experiences about speech pathology and climate change, and why they feel the urgent need for health professionals to address the impacts of climate change on health and service delivery. Claire Esterman, from the Speak Up Podcast Reference Group opens the episode with a brief reflection highlighting the opportunities, personally and professionally, that Abby and Suzanne discuss. Resources:  Earth Day: https://www.earthday.org/ United Nations climate change information: https://www.un.org/en/climatechange National Safety and Quality Health Standards voluntary environmental sustainability and climate resilience module: https://www.safetyandquality.gov.au/standards/environmental-sustainability-and-climate-resilience-healthcare-module Helping people with Aphasia prepare for an emergency: https://leader.pubs.asha.org/do/10.1044/2020-1118-aphasia-friendly-emergency/full/ UN Sustainable development goals: https://sdgs.un.org/goals Climate for change: https://www.climateforchange.org.au/?gad_source=1&gclid=Cj0KCQjw782_BhDjARIsABTv_JDCadnChAqwfxbWIGwXnflty21bBF9DSDaLpYc1-XVHIzHRFpPusXgaAjotEALw_wcB Speech Pathology Australia acknowledges the Traditional Custodians of lands, seas and waters throughout Australia, and offers our respect to Elders, across all times and places. The Speak Up podcast recognises the central role of yarning and oral storytelling in Aboriginal and Torres Strait Islander culture, how this translates to knowledge translation, and that colonisation has interrupted these practices of Language and knowledge sharing. The Speak Up podcast acknowledges the need for truth-telling and deep listening, the central role that Language plays in connecting Aboriginal and Torres Strait Islander People with Culture, Country, and Community, and the interwoven nature of health, and social and emotional wellbeing. We recognise that the Traditional Owners of the Lands across Australia have been here since time immemorial, and that their sovereignty over this land, was never ceded. Free access to transcripts for podcast episodes are available via the SPA Learning Hub (https://learninghub.speechpathologyaustralia.org.au/), you will need to sign in or create an account. For more information, please see our Bio or for further enquiries, email speakuppodcast@speechpathologyaustralia.org.au Disclaimer: © (2026) The Speech Pathology Association of Australia Limited. All rights reserved. Important Notice, Please read: The views expressed in this presentation and reproduced in these materials are not necessarily the views of, or endorsed by, The Speech Pathology Association of Australia Limited (“the Association”). The Association makes no warranty or representation in relation to the content, currency or accuracy of any of the materials comprised in this recording. The Association expressly disclaims any and all liability (including liability for negligence) in respect of use of these materials and the information contained within them. The Association recommends you seek independent professional advice prior to making any decision involving matters outlined in this recording including in any of the materials referred to or otherwise incorporated into this recording. Except as otherwise stated, copyright and all other intellectual property rights comprised in the presentation and these materials, remain the exclusive property of the Association. Except with the Association's prior written approval you must not, in whole or part, reproduce, modify, adapt, distribute, publish or electronically communicate (including by online means) this recording or any of these materials.

Are your AI agents quietly ignoring their guardrails just to get the job done? This week on Dev Interrupted, Andrew sits down with Wayfound AI founder and CEO Tatyana Mamut to discuss why traditional, deterministic software testing falls completely short when evaluating stochastic AI models. They explore the growing strategic divide between OpenAI and Anthropic, the urgent need for independent "guardian agents," and what it takes to run a company with just 4 humans and 27 agents. Finally, they break down how to stop the chaotic game of telephone between engineers and business leaders by relying on "Deep-T" subject matter experts to evaluate what good AI output actually looks like.Read the guide: The APEX FrameworkFollow the show:Subscribe to our Substack Follow us on LinkedInSubscribe to our YouTube ChannelLeave us a ReviewFollow the hosts:Follow AndrewFollow BenFollow DanFollow today's stories:Wayfound AI: Secure your autonomous enterprise and align your AI workforce with an independent agent supervision platform.Moltbook: Explore the viral social network built exclusively for AI agents, where you can observe Tatyana's OpenClaw agent, Aphasia, in action.Anthropic's Agent Autonomy Research: Read Anthropic's report on how people actually use agents and why post-deployment monitoring is an absolute necessity.OpenClaw: Explore the viral, open-source personal AI assistant framework.Follow Tatyana Mamut on LinkedInOFFERSStart Free Trial: Get started with LinearB's AI productivity platform for free.Book a Demo: Learn how you can ship faster, improve DevEx, and lead with confidence in the AI era.LEARN ABOUT LINEARBAI Code Reviews: Automate reviews to catch bugs, security risks, and performance issues before they hit production.AI & Productivity Insights: Go beyond DORA with AI-powered recommendations and dashboards to measure and improve performance.AI-Powered Workflow Automations: Use AI-generated PR descriptions, smart routing, and other automations to reduce developer toil.MCP Server: Interact with your engineering data using natural language to build custom reports and get answers on the fly.

Brendan Constantine first appeared on Rattlecast 108. He's back with a brand new book from Red Hen Press, The Opposites Game. Brendan is a poet based in Los Angeles. His work has appeared in many of the nation's standards, including Poetry, The Nation, Best American Poetry, Ploughshares, Tin House, Virginia Quarterly, and Poem-a-Day. A popular performer, Brendan has presented his work to audiences throughout the U.S. and Europe, also appearing on NPR's All Things Considered, TED ED, numerous podcasts, and YouTube. Brendan currently teaches at the Windward School and the Los Angeles County Museum of Art. Since 2017, has been developing poetry workshops for people with Aphasia and Traumatic Brain Injuries (TBI). Find more here: https://brendanconstantine.com/ As always, we'll also include the live Prompt Lines for responses to our weekly prompt. Submit your poems through Submittable by midnight Sunday for a chance to be invited: https://rattle.submittable.com/submit/269309/rattlecast-prompt-poems-online For links to all the past episodes, visit: https://www.rattle.com/page/rattlecast/ This Week's Prompt: Write a poem that rallies against its own epigraph. Next Week's Prompt: Write a villanelle that features something you see every day–and you're the only person in the world that does. The Rattlecast livestreams on YouTube, Facebook, and Twitter, then becomes an audio podcast. Find it on iTunes, Spotify, or anywhere else you get your podcasts.

This episode is a conversation about primary progressive aphasia (PPA). We discuss the definition of PPA, the three widely used subtypes, common clinical symptoms, neuroanatomy and proteinopathies, epidemiology, overlap/differences between PPA and Alzheimer's disease, neuropsychiatric symptoms in PPA, neuropsychological assessment of PPA patients, and current available treatments. Show notes are available at www.NavNeuro.com/188 _________________ If you'd like to support the show, here are a few easy ways: 1) Get CE credits for listening to select episodes: www.NavNeuro.com/INS (for membership discount code, login to the-ins.org then go to this page: https://the-ins.org/current-members/special-offers-discounts/) 2) Subscribe (free) and leave an Apple Podcasts rating/review: www.NavNeuro.com/itunes 3) Check out our book Becoming a Neuropsychologist, and leave it an Amazon rating   Thanks for listening, and join us next time as we continue to navigate the brain and behavior! [Note: This podcast and all linked content is intended for general educational purposes only and does not constitute the practice of psychology or any other professional healthcare advice and services. No professional relationship is formed between hosts and listeners. All content is to be used at listeners' own risk. Users should always seek appropriate medical and psychological care from their licensed healthcare provider.]

Interviewer info Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups for people with aphasia and their care partners. She owns an LPAA-focused private practice and specializes in working with people with neurogenic communication disorders. She has worked in acute hospital, skilled nursing, and continuum of care settings. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer. In this episode, Lyssa Rome interviews Jessica Obermeyer about group treatment for aphasia. Guest info Jessica Obermeyer, PhD, CCC-SLP, is an Assistant Professor in the Department of Communication Sciences and Disorders at the University of North Carolina at Greensboro. Her area of specialization is acquired adult neurogenic language disorders. Dr. Obermeyer's research interests include discourse production in aphasia, treatment efficacy, and the cognitive requirements of language production. Prior to earning her doctorate, she worked in a variety of clinical settings where she specialized in assessment and treatment of adult neurogenic populations.     Listener Take-aways In today's episode you will: ● Recognize the role of written communication in clients' daily activities, including texting, email, and online tasks. ● Adapt ARCS-W treatment components to match each client's preferred writing modality (handwriting vs. typing). ● Identify candidates with aphasia who are well-suited for discourse-level writing treatment. Lyssa Rome Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Lyssa Rome. I'm a speech language pathologist on staff at the Aphasia Center of California, and I see clients with aphasia and other neurogenic communication disorders in my LPAA-focused private practice. I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Dr. Jessica Obermeyer, who was selected as a 2024 Tavistock Trust for Aphasia, Distinguished Scholar, USA and Canada. Dr. Obermeyer is an assistant professor in the Department of Communication Sciences and Disorders at the University of North Carolina at Greensboro. Her area of specialization is acquired adult neurogenic language disorders. Dr Obermeyer's research interests include discourse production and aphasia treatment efficacy and the cognitive requirements of language production. Prior to earning her doctorate, she worked in a variety of clinical settings, where she specialized in assessment and treatment of adult neurogenic populations. Jessica Obermeyer, welcome to the podcast, and thanks for being here. Jessica Obermeyer Thank you. It's a pleasure. Lyssa Rome So I wanted to get started with a question we often ask, which is: How did you get into this? Was there an aha moment for you and what led you to research aphasia? Jessica Obermeyer That's a great question. I think it was more of a slow awakening and journey to realizing that this is how I wanted to spend my days. When I started studying speech language pathology, I knew I wanted to work in adult rehab with people with traumatic brain injury, stroke, and aphasia. But as an undergraduate and a masters student, I worked on a lot of research related to traumatic brain injury and cognition. But then I had some exposure to aphasia research, and as a clinician, I just loved working with people that had aphasia. I loved running aphasia groups. I started aphasia groups, and when I decided to go back for my PhD, that is what I wanted to focus on. I also had the opportunity to work in adult outpatient, so I got to see a lot of people that had aphasia and were at different points in their rehabilitation journey. And those experiences just made me want to continue and especially do research that could develop and evaluate different treatment approaches for people that had aphasia. Lyssa Rome One of the sort of through lines in your research has been discourse. And I'm curious about how you landed on that as the focus of your work, why discourse? Jessica Obermeyer It's how we talk. It was always, you know, something I was interested in. I think, as a clinician, I felt really daunted by discourse, because it is laborious, you know, it takes a lot of time to think about how you're going to analyze it. But I was always so fascinated by all the linguistic components that make up discourse as a clinician. And then I think as a researcher, I really appreciate how important it is. Everything we do in our day to day lives is often at a discourse level, and that looks so different depending on the type of discourse. So your text exchange is discourse, your emails, your conversations, the interaction with a barista. You know, every kind of functional way that we communicate is often at a discourse level. But it's so different depending on what that interaction looks like, and that's just endlessly fascinating to me as a researcher… challenging but fascinating. Lyssa Rome Challenging both to evaluate and, I guess, to some extent, to treat. One of the things that I really appreciate is that it's how we communicate in our daily lives, and so if we're thinking about life participation and sort of functional approaches to treatment, to my mind, discourse is kind of where it's at. So I'm really excited to get to talk to you more about it. So speaking of discourse, I thought we could talk about your work on ARCS. Maybe we could start by telling us a little bit about the origins and how you became involved in researching. Jessica Obermeyer Yes, I'd be happy to. I started doing research with ARCS as a doctoral student. So it's been a long time, but the origin of ARCS, or Attentive Reading with Constrained Summarization, started with Yvonne Rogalski and Lisa Edmonds, and they published the first paper, I think, in 2009, but someone should go back to check that, and it was originally for someone that had primary progressive aphasia. And then there was another paper published for two people with Wernicke's aphasia. So in the original version, it's based on constrained summarization, and constrained only in that you're giving someone guidelines for how to summarize so they have to read through a segment of text. Usually it's a current event article, but clinically, you could use pretty much any written text. And I've actually done it with someone listening as well. Typically with ARCS, you would have someone read a segment of written text and then summarize it with the constraint or guideline to be specific. So avoid words like it, stuff, thing, he, she. So use that really intentional word retrieval. That's not what we typically do. We often use non-specific words, but it's that therapeutic, like try to go for the really precise and specific word exercise that retrieval and to also stay on topic, so try not to add a tangent, or, you know, additional information that's not related to what you're reading. And then in my work, I've added an additional guideline that's just based on what that person needs. So if they're repeating a lot, then that might be part of the guideline. Often, the guideline is to try to include the essential information that you've identified already. So that's the origin of ARCS. And as a doctoral student, I really wanted to do treatment research. I became really interested in cooperative learning theory, in how people can work together in their learning, collaborate to improve learning. And when I was doing that, reading and thinking about cooperative learning, writing seemed like such an excellent tool for that, because I think one of the hard things about spoken language is that it's just gone. You say it, it's gone. It's very hard to monitor, which I'm acutely aware of right now in this recording. But with written text, you have this wonderful record of what you've produced, and that can be really helpful for thinking about language and planning, especially in an approach like ARCS or ARCS-W that emphasizes this planning, process-driven component, where you're thinking about, "What do I need to include in this discourse? What's important? What's not important? And what have I actually produced? Does that meet, you know, the guidelines I've tried to meet?" So that's how writing actually got pulled into it. And I wanted to keep the spoken language because, I don't know that I've ever met someone with aphasia who told me they didn't want to continue exercising their spoken language, but the writing was just I think, an important addition, because there are so few written discourse treatment options. And it allowed for this emphasis on monitoring and planning and some of the cognitive components of discourse that can be hard to address. Lyssa Rome And maybe you could say a little bit about what you found when you've studied ARCS-W, so the Attentive Reading and Constrained Summarization-Written. Jessica Obermeyer Well, people have improved, which is great. So the one of the things about ARCS and ARCS-W that's maybe unique when we think about aphasia treatment as a whole, is that it's not a treatment with trained items, so no items are repeated. You're working on the process of discourse production, this process of monitoring and trying to be specific, be efficient, you know. In written discourse, people have made improvements in correct information units or CIUs. So at the word level in discourse, the amount of informative and correct information that they're producing, people have made improvements at the utterance level, where they're producing more relevant utterances and more utterances that have a basic sentence structure, and then this hasn't been looked at in all of the studies, but for some of the participants, where we've measured things like main concepts, the amount that the person is conveying the main ideas or concepts in the discourse has improved for some people as well. And then at this spoken discourse. So ARCS-W, it's half spoken, half written. Basically, people have also made similar improvements. So it's been encouraging so far, ARCS-W I would say, compared to ARCS is for people in the more mild aphasia end of the spectrum, especially with the writing component. Any clinician who's worked with people with aphasia will know that writing is often a stressful thing for people with aphasia. So it's for people that are writing at a phrase level already. It doesn't mean that their spelling is perfect, but if they're really struggling to get out a single word, this is probably not the ideal you know treatment for them, but for folks that are more on the mild end who want to work on spoken and written discourse, we have seen some positive results in their spoken and written discourse production. Another thing that I think is really important for this treatment is that it is so multi-modality. When we write normally, we're reading as well. You know, we're not just writing in a vacuum. A lot of the time. We're rereading our text, we are reading that text message and then responding to it. So I like that. I like multi-modality treatments. I like that this is a treatment that allows people to address multiple types of language goals, while, you know, keeping it pretty simple and low tech. Lyssa Rome I think that that really hits on one of the reasons that I like using ARCS-W in my work with people is that It can be used with so many different kinds of texts. So I've used both, you know, work emails, if their goal is to get back to work, newspaper articles that interest them, simplified newspaper articles that interest there's so many possibilities. And anyway, it's exciting to hear you talk about that. Jessica Obermeyer Yeah, I think that as a clinician, that's why I liked ARCS. It was so flexible, so easy to implement. And that's definitely one of the things I like about ARCS-W as well. Make treatment work hard for you. Lyssa Rome So that is interesting to people as well. Where are you going next with your ARCS research? Jessica Obermeyer Great question. I'm writing up results from about six people we ran over the last couple years, so that, I hope, gets submitted for publication soon. And I would really like to adapt this treatment a little further to use more assistive technology for folks that are really wanting to write, but aren't wedded to handwriting or typing in a traditional sense. So can we use speech-to-text? I always mix it up. And can we use methods to support people producing written language that are, you know, different than just typing it? Because people have really different needs in their life. So if that is a way to meet their writing needs, excellent, and I'd like to do that in the future. Lyssa Rome I think that gets back to this idea that it's so flexible, right? You could adapt it in so many different ways. I think that that's really exciting, because it sort of further underscores the flexibility of this approach. And we were talking earlier, before we started recording, about using the same ARCS framework, or ARCS-W framework for material that clients have listened to, things like podcasts or TED Talks. So it seems like it's so adaptable, which is part of what I think makes it really exciting. Jessica Obermeyer I think that's a great idea. We actually did use listening and then summarization for one of the participants in the first arc study, because that met their profile. That's how they wanted to interact with the treatment, and it worked out really well for them, and it's a great way to incorporate people's different interests. Not everyone wants to read, so being able to listen is a great option. And in the treatment for everybody, they always select their writing modality so they can either hand write or type, depending on what's relevant for them. In the population of people that have aphasia now, and I know that this will change over time, people have really different comfort levels with technology and with typing. So if someone says, "No, I never typed. I want to handwrite," then we can do that. And if, if it's the other, we can type. So I think listening is just another way to make it meet someone's needs better. Lyssa Rome I was hoping that you could talk a little bit more about the similarities and differences between different types of discourse. So spoken and written discourse, typed and versus handwritten discourse. Tell us a little bit more about that. Jessica Obermeyer Yeah, of course. Well, I should, I guess, start off by saying, working on the ARCS-W treatment research, I recognized just how little information is out there on written discourse and the majority of discourse measures that we use in aphasiology are based on spoken discourse production. But there are differences in how we speak versus how we write. So in spoken language, we've already talked a little bit about this, it's temporal, it's just gone. So writing is tangible. You have a record of your writing, and that can be really beneficial for people with aphasia. But of course, there's there's other things that can make writing more challenging as well. With spoken language, of course, we have the suprasegmental components of what we're saying. So we have our tone and our facial expression and things that allow us to impart meaning without actually saying it, and we don't have that in writing. Although things are shifting with text messaging technologies, we can add emojis and memes that help us communicate information. But I think when we're thinking about traditional writing, it doesn't have those additional components, and therefore people have to be more explicit with their word choice and a little more clear in what they're trying to say. People are often more efficient in writing. They use fewer words than they would in speaking. So those are some of the differences. We can't automatically correct our written output because we see that our partner doesn't understand. Because in writing, there's this distance between when we're writing versus when we think someone's reading it. Even in more instant platforms like text messaging, we don't know exactly when someone's reading something or how their face looks when they read it, in the way we know with speaking. So those differences do impact how we complete the task. And of course, the context of writing changes it dramatically. So you write notes to yourself really differently than you write a research paper or a work email. And that's not so different from speaking, right? The context is still going to impact how we speak or write, very much. So in my work, I've looked at how writing and typing are the same or different. And this is a pretty new area. There's a couple papers out there on it now, and I think it's gaining traction, which is great, because most people write through typing in their daily life now. What I found is that at a group level, it's pretty similar. Writing and typing look pretty similar for people that have aphasia. But individually it can be very different. So an individual person with aphasia might have a strength or weakness in handwriting versus typing for lots of different possible reasons, like their experience, or hemiparesis, their desire to do one or the other. But it's not, the patterns aren't completely clear. I think clinicians are probably really used to hearing that every individual with aphasia has the potential to be different. So I think that keeps with written and typed language output, handwritten and typed. Some of my recent work has been related to looking at different writing modalities for people with aphasia. So are there differences in their handwritten versus typed discourse production. There's a couple papers out on this now, and hopefully there'll be even more as it gains traction. And I think it's getting more attention in the research literature because of how important writing is in our daily lives now. I mean, most activities of daily living are now completed through, you know, the virtual world, so banking, shopping, lots of messaging are completed through reading and writing now. So that's kind of why I became interested in also working with ARCS-W and having people handwrite versus type, depending on their interest and comfort level. It was always interesting to me why certain people picked one or the other, and kind of what I was seeing. There is some research out there that shows that handwriting is advantageous for learning. So the specificity of how we're moving our fingers to create letters is helpful for retention and learning items, but when we're thinking at the discourse level, when we're not using the same items necessarily, things could potentially be a little different. So I was interested in just exploring some of those differences and patterns that might emerge, and if there was anything I could figure out that might be driving a pattern. So if someone's better at typing than handwriting, is there a reason that they're better? So what I have found so far, and it's it's pretty preliminary, is that at the group level, handwriting and typing look very similar for people with aphasia, so oftentimes, there's not a big difference in the total words that they produce, and that's been confirmed by a larger study as well from Jaime Lee and colleagues. But then when we look at the individual level, that's when you can start to see differences. And I don't think any clinician would be surprised to hear that people with Aphasia are variable or different. So we know that that is common, but it's been pretty interesting and striking in my own work to see how at the group level, these differences just totally even out. But then when we look at individuals, you do see that, you know, someone is more proficient with typing, someone else is more proficient with handwriting. So in a study I did, I think from 2024, we had people fill out this historical information about their typing experience and exposure, we knew about if they had a hemiparesis or not, and so were they able to use both hands or one hand for handwriting or typing? And like I said, we did find these individual differences for some people, but there wasn't a really clear pattern in what was driving those differences? Was it that they hadn't worked with a keyboard a lot? Was it that they only had the use of one hand? And we just didn't have enough data potentially to discern any specific patterns? Lyssa Rome We've talked a little bit about different types of discourse, written, spoken for written, typed versus handwritten. But I wanted to kind of come back to how we measure and analyze discourse, and wanted to ask about a more recent paper and have you describe a little bit about your work on discourse measurement and training clinicians to measure discourse? Jessica Obermeyer That paper is a perceptual rating paper. We've talked a lot about discourse in this chat, and I think probably one of the first things I might have mentioned was how daunting discourse analysis can be. So researchers are aware of that, and always kind of thinking that discourse is so rich, it provides us so much information about someone's linguistic ability, but also their success with communication in a way that other levels of language don't necessarily tell us. So how can we benefit from that rich information in a way that clinicians can do. Because with discourse analysis, you know, in the clinical session, it might not take that long. You're having someone participate in 10 minutes of conversation—that is not a lot of time in your session. The time is all backlogged. The time is after the session is over, and you're trying to transcribe what they've said and then identify discourse measures that you're interested in. And another thing that makes discourse just complex and dynamic is that there's not one measure, you know, there's not a measure of word retrieval and discourse. There are lots of measures that can give you insight into word retrieval and discourse. So this project I did with my collaborator, Marion Lehman, who also works on discourse, and especially conversation. We wanted to see if it was possible to train people to rate conversation samples from people with aphasia on linguistic measures, so measures of language ability. So there are other perceptual rating scales, but a lot of them might be looking at speech acts like initiation or presence or absence of errors. And we were really interested in if these, if perceptual ratings, could map on to the things we're doing in our labs, so you know, correct information units or the degree of informativeness, utterances that have basic structure, coherence, you know, these measures that we are spending many hours, you know, coding line by line, or even word by word, for some. So she and I developed this training and introduced—so the paper that's published, we used research assistants in our research labs, and we exposed them to the linguistic measures that we were interested in. Had them watch some practice videos, and then told them how we had coded them. So what was the value based on our lab coding? And then we did five test samples, so there were four linguistic measures. The training lasted about three hours, and I did five test samples. And we got some really good feedback from the RAs who did the training and rating samples. We had some promising results for especially two of the measures that we used in their training, and now we're really interested in extending that work with clinicians. So the people that were in the study before had very limited experience listening to people that had aphasia. They hadn't worked with people that had aphasia, they hadn't done extensive clinical training. We're hopeful that if we can use their feedback to fine tune the training and rating procedures and recruit some clinicians to participate, that hopefully we could get even better results and hopefully provide a tool to clinicians where they can be thinking about linguistic components of conversation in a way that's more feasible to their schedule and their workload, because we recognize how much time it takes. And I think it's, it's just a barrier to entry, even, because if someone is feeling like, "I can't do this, I don't have time to do this," then it's hard to even learn about or get started. Lyssa Rome Yeah, I'm so happy to hear that you're that you're focused on the feasibility for clinicians who have productivity requirements, who don't necessarily have a lot of time at the end of the day to do that kind of really in depth analysis. I think it's exciting. Jessica Obermeyer Oh, for sure, and clinicians, I think, work a lot of extra hours, but they have a whole caseload, you know, so balancing everybody's needs and being able to to provide excellent care to everybody is, is always a challenge, and hopefully, hopefully we'll, we'll be able to continue this work. We're trying to get some funding for the project because we want to be able to pay SLPs who participate in the research. Lyssa Rome As we start to wrap up, I'm wondering what you would like clinicians who are listening to this podcast to take away from what we've talked about today, from your work. Jessica Obermeyer I think one takeaway would be for clinicians to think about incorporating handwriting and typing into their existing treatment practice. So I've talked a lot about ARCS-W. ARCS-W is not for everybody. It is a very specific treatment approach for people that have mild aphasia who want to work on discourse-level writing. But there are so many ways to have people engage with handwriting and typing that will serve them in their daily life. So we've talked a lot about how literacy is just such a big—it's a bigger part of our lives than it was 20 years ago. People can achieve a lot of independence and autonomy if they're able to interact with reading and writing and complete it successfully. So I would really encourage clinicians to think about how they can incorporate reading and writing into their existing treatment. A study I was involved with— Liz Madden surveyed SLPs on their practices assessing and treating reading and writing, and one of the take-homes from that project was that clinicians evaluate writing more than treating it. And especially handwriting, versus typing. But I think that given the way society is moving, asking people like, "What's important for you, handwriting or typing?" and let's make that our practice. Lyssa Rome I appreciate how person centered and flexible that advice is right. We're trying to meet people where they're at and recognizing that our treatment can be tailored to the person who's sitting in front of us. I'm curious to hear what is coming next for you. What are you excited about in your work? Jessica Obermeyer That's actually a great segue about how we can tailor treatment, because that is one of the projects that I'm working on now, how we can think about treatment in terms of what are the things that make it work, versus things that maybe aren't essential components of the treatment? With the last study I did with ARCS-W of the things that we were really trying to understand better was: Did it matter if people hand wrote or typed? Did they have the same kind of level of generalization to the other writing modality? And in that study, it doesn't seem that they did. And I think there's really specific reasons for that, because we're working at this discourse level without repeated items. And so you might not see the same impact of that handwriting learning boost, because we're not repeating things as often. That's one of my real interests is thinking about how we work on treatment, how we deliver treatment, how clinicians can deliver treatment. Because I am very guilty of this. Working on writing takes a long time. It takes a long time for people with aphasia to produce written discourse level text. So in the ARCS W studies, it's an hour-and-a-half treatment session where we only work on ARCS-W. But I know I recognize that that's like not most clinicians' daily life, and it doesn't mirror what therapy many people with aphasia receive. So thinking about treatment in a more component-based and mechanistic way that makes it easier for clinicians to adapt to their their practice is is one of the things I would like to flesh out in the future. And then continuing to work on this training and perceptual rating protocol. One of the things my colleagues and I would like to do is create a training that can be shared freely, where clinicians can easily get access to it, and then collect more robust data. I mean, only if we get good results, of course. If we don't, we will not be sharing it. But those are the big things I'm thinking about in the next couple of years, and then beyond that, even more. Lyssa Rome Well, I look forward to reading more of your work and to seeing what comes next as well. Dr. Jessica Obermeyer, thanks so much for talking with us. I really appreciate it. Jessica Obermeyer It's been a pleasure. Thank you. Lyssa Rome And thanks also to our listeners for the references and resources mentioned in today's show. Please see our show notes. They're available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access. For Aphasia Access Conversations, I'm Lyssa Rome. Resources Obermeyer, J. (2024). Using and modifying standardized restorative treatments in aphasia: Clinician perspectives. American Journal of Speech‑Language Pathology. Advance online publication. https://doi.org/10.1044/2024_AJSLP-23-00349 Obermeyer, J., Leaman, M., & Oleson, J. (2025). Feasibility and preliminary data for a training protocol and perceptual rating scale of linguistic conversation measures in aphasia. American Journal of Speech‑Language Pathology. Advance online publication. https://doi.org/10.1044/2025_AJSLP-24-00420 Obermeyer, J. A., Rogalski, Y., & Edmonds, L. A. (2021). Attentive reading with constrained summarization-written, a multi-modality discourse-level treatment for mild aphasia. Aphasiology, 35(1), 100-125. Obermeyer, J. A., & Edmonds, L. A. (2018). Attentive reading with constrained summarization adapted to address written discourse in people with mild aphasia. American Journal of Speech‑Language Pathology, 27(1S), 392–405. https://doi.org/10.1044/2017_AJSLP-16-0200 Obermeyer, J. A., Leaman, M. C., & Edmonds, L. A. (2020). Evaluating change in the conversation of a person with mild aphasia after Attentive Reading with Constrained Summarization–Written treatment. American Journal of Speech‑Language Pathology, 29(3), 1618–1628. https://doi.org/10.1044/2020_AJSLP-19-00078 Obermeyer, J., Edmonds, L., & Morgan, J. (2024). Handwritten and typed discourse in people with aphasia: Reference data for sequential picture description and comparison of performance across modality. American Journal of Speech-Language Pathology, 33(6S), 3170-3185  

Primary progressive aphasia (PPA) is a group of language led dementias where communication difficulties appear before memory loss. Despite this, diagnosis can often take years and access to specialist support remains inconsistent. In this episode of the Dementia Researcher Podcast, Dr Annalise Rahman Filipiak speaks with Professor Jason Warren, Dr Anna Volkmer and Dr Jacqueline Kindell about the role of speech and language therapy in diagnosing and supporting people living with PPA. The discussion explores why diagnosis is often delayed, how speech and language therapists contribute to multidisciplinary assessment and care pathways, and why early referral can make a meaningful difference for patients and families. The conversation also looks at international differences in access to services, the importance of communication support across the course of the condition, and the growing global movement to improve awareness through Primary Progressive Aphasia Awareness Day. -- PPA Awareness Day 2026 - https://speechtherapyppa.com/ppa-awareness-day -- About the guests Jason Warren - Professor of Neurology at University College London and the National Hospital for Neurology and Neurosurgery. His research focuses on dementia, language disorders and diagnostic markers for primary progressive aphasia. Anna Volkmer - Associate Professor and Consultant Speech and Language Therapist at University College London. Her work focuses on communication interventions and support for people living with primary progressive aphasia and their families. Jacqueline Kindell - Speech and Language Therapist and Lecturer at The University of Manchester with extensive clinical and research experience in dementia and communication disorders. -- Key Takeaways - Primary progressive aphasia is a group of dementias where language difficulties appear before memory problems, which often makes diagnosis harder. - Diagnosis can take several years because many dementia assessment tools focus on memory rather than communication and language. - Speech and language therapists play an important role in diagnosing PPA by assessing language, communication and motor speech changes. - Speech and language therapy is currently the main treatment available to help people with PPA manage communication difficulties. - Early referral to speech and language therapy helps people and families adapt communication strategies and plan for future changes. - Access to specialist speech and language therapy services varies widely depending on where people live. - Communication support can improve quality of life and reduce wider pressures on health services by improving understanding between patients, families and clinicians. - Primary Progressive Aphasia Awareness Day aims to improve recognition of the condition and promote early referral to speech and language therapy. -- A transcript of this show, links and show notes and profile on all our guests are available on our website at https://www.dementiaresearcher.nihr.ac.uk -- Follow us on social media: https://www.instagram.com/dementia_researcher/ https://www.facebook.com/Dementia.Researcher/ https://www.twitter.com/demrescommunity https://www.linkedin.com/company/dementia-researcher https://www.bsky.app/profile/dementiare…archer.bsky.social -- Download and Register with our Community App: https://www.onelink.to/dementiaresearcher

Emotional Anger After Stroke: Trisha Winski’s Story of a Carotid Web, Aphasia, and Learning to Slow Down Trisha Winski was 46 years old, working as a corporate finance director, with no high blood pressure, no diabetes, and no smoking history. By every conventional measure, she was not a stroke candidate. Then one morning, she stood up from the bathroom, collapsed, and couldn’t speak. Her ex-husband, sleeping on her couch by chance the night before, found her and called 911. The cause was a carotid web, a rare congenital condition she never knew she had. Three years and three months later, she’s living with aphasia, rebuilding her sense of self, and navigating something that doesn’t get nearly enough airtime in stroke conversations: emotional anger after stroke. What Is a Carotid Web — and Why Does It Matter? A carotid web is a rare shelf-like membrane in the internal carotid artery that disrupts blood flow, causing stagnation and clot formation. It is a form of intimal fibromuscular dysplasia and affects approximately 1.2% of the population. Most people never know they have it. Unlike the more commonly cited stroke risk factors, such as hypertension, diabetes, smoking, and obesity, a carotid web is congenital. You are born with it. There is no lifestyle adjustment that would have prevented Trisha’s stroke. That distinction matters enormously when you are trying to make sense of what happened to you. “I have nothing that could cause it,” Trisha says. “No blood pressure, no diabetes. It’s hard.” The treating hospital, MGH in Boston, caught the carotid web, something Trisha was later told many hospitals would have missed. It is a reminder of how much diagnosis still depends on the right clinician, the right technology, and a degree of luck.   Why Am I So Angry After My Stroke? One of the most underexplored dimensions of stroke recovery is emotional anger, not just grief, not just fear, but a specific kind of rage that has no clean target. “Why me? Why did I have to have it? It’s frustrating. It’s so frustrating,” Trisha says. “I’m just mad. I don’t know who I’m mad at.” This is a clinically recognized phenomenon. Emotional dysregulation after stroke can have both neurological and psychological origins. The brain regions that govern emotional control may be directly affected by the injury. At the same time, the psychological weight of sudden, unearned loss of function, of identity, of a future you thought you understood is enough to generate profound anger in anyone. For people like Trisha, who had no risk factors and no warning, the anger is compounded. There is no behaviour to regret, no choice to unwind. The stroke simply happened. That can make the anger feel even more directionless and, paradoxically, even more consuming. “Why me? Why did I have to have it? It’s frustrating. It’s so frustrating.” Bill’s gentle reframe in the conversation is worth noting here: “Why not me? Who are you to go through life completely unscathed?” It’s not a dismissal, it’s an invitation to move from the question that has no answer to the one that might.   Aphasia: The Deficit That Hurts the Most Trisha’s stroke affected her left hemisphere, producing aphasia, a language processing difficulty that affects word retrieval, word substitution, and speaking speed. Her numbers remained largely intact, which helped her return to her finance role. But the aphasia has been, in her own words, the hardest part. “If I didn’t have that, I wouldn’t be normal, but I could be normal,” she says. “The aphasia kills me.” One of the quieter consequences of aphasia that Trisha describes is self-censoring, stopping herself from communicating in public because she fears taking too long, disrupting the flow of conversation, or being misunderstood. She has developed a workaround: telling people upfront she has had a stroke, so they give her the time she needs to get her words out. The frustration-aphasia loop is well documented: the more stressed or frustrated a person becomes, the worse the aphasia tends to get. The therapeutic implication is significant. Managing emotional anger after a stroke is not just a well-being issue for someone with aphasia; it is directly tied to their ability to communicate. “Whenever I’m not stressed, I can get it out. When I get nervous, I can’t,” Trisha explains.   The Trauma Ripple: It’s Not Just About You One of the most striking moments in this episode is when Trisha reflects on her son Zach and ex-husband Jason, both of whom were visibly distraught in the days after her stroke. “I had a stroke. Why are they traumatized?” she says and then catches herself. “I forgot to look at it from their perspective. They watched me have a stroke.” This is something stroke survivors frequently underestimate. The people around them, partners, children, friends, even ex-partners like Jason, carry their own version of the trauma. They watched helplessly. They made decisions under panic. They grieved a version of the person they knew, even as that person survived. Acknowledging this doesn’t diminish the stroke survivor’s experience. It widens the frame of recovery to include the whole system and opens the door to conversations about collective healing.   Neuroplasticity Is Real — Give It Time Three years and three months after her stroke, Trisha’s message to people in the early stages of recovery is grounded and honest. “Neuroplasticity really does exist. My brain finds places to find the words I never had before. It takes longer, but it gets there. Just give yourself time.” She also reflects candidly on going back to work too early, returning before she was medically cleared, crying every day, and unable to follow her own cognitive processes. “I should have waited,” she says. “But I did it. It taught me that if I ever had it again, I won’t do that.” Recovery after stroke is non-linear, unglamorous, and deeply personal. But the brain is adapting, always. Trisha’s story is evidence of that and a reminder that emotional anger after a stroke, however consuming it feels, is not the end of the story.   Read Bill’s book on stroke recovery: recoveryafterstroke.com/book | Support the show: patreon.com/recoveryafterstroke  DisclaimerThis blog is for informational purposes only and does not constitute medical advice. Please consult your doctor before making any changes to your health or recovery plan. Why Me? Navigating Emotional Anger After Stroke When You Did Nothing Wrong No risk factors. No warning. Just a carotid web she never knew about — and three years of emotional anger, aphasia, and finding her way back. Tiktok Instagram Facebook Highlights: 00:00 Introduction – Emotional anger after stroke 01:36 The Day of the Stroke 07:05 Post-Stroke Challenges and Rehabilitation 13:06 Ongoing Health Concerns and Medical Appointments 22:40 Navigating Health Challenges and Medical Support 30:20 Acceptance and Coping with Mortality 38:36 Communication Challenges and Aphasia 42:09 The Journey of Recovery and Self-Discovery 51:51 Facing the Aftermath of Stroke 59:22 Emotional Impact on Loved Ones 01:04:57 Navigating Life Changes 01:13:25 Finding Joy in New Passions 01:25:12 Trisha’s Journey: Emotional Anger After Stroke Transcript: Introduction – Emotional anger after stroke Trisha Lyn Winski (00:00) I don’t have anything that could cause it. I have nothing that, no blood pressure, no diabetes, It’s hard. It’s hard. don’t… It makes me mad. Really mad. Really, really mad that I to stroke. And like, everyone that has it… Bill Gasiamis (00:07) Yeah. Trisha Lyn Winski (00:21) or every dozen. I’m like, why me? Why did I have to have it? It’s frustrating. It’s so frustrating. Bill Gasiamis (00:28) Yeah, mad at who? Trisha Lyn Winski (00:30) I don’t know. I’m just mad. Like, I don’t know who I’m mad at. Bill Gasiamis (00:35) Before we get into Trisha’s story, and this is a raw, honest, and really important one, I wanna share a tool I’ve been using that I think can genuinely help stroke survivors get better answers faster. It’s called Turn2.ai. It’s an AI health sidekick that helps you deep dive into any burning question you have about your recovery. It searches across over 500,000 sources related to stroke, new research, expert discussions, patient stories and resources, and then keeps you updated on what matters each week. I use it myself and it’s my favorite tool of 2026 for staying current with what’s happening in stroke recovery. It’s low cost and completely patient first. Try it free and when you’re ready to subscribe, use my code, Bill10 at slash sidekick slash stroke to get a discount. I earn a small commission if you use that link at no extra cost to you. And that helps keep this podcast going. Also my book, The Unexpected Way That a Stroke Became the Best Thing That Happened is available at recoveryafterstroke.com/book. And if you’d like to support the show on Patreon and my goal of reaching a thousand episodes, you can do that by going to patreon.com/recoveryafterstroke. Links are in the show notes. Right, Trisha Winsky was 46 years old, healthy, had no risk factors and then a carotid web. She never knew she had changed everything. Let’s get into it. Bill Gasiamis (02:06) Trisha Winski, welcome to the podcast. Trisha Lyn Winski (02:09) Thank you. Bill Gasiamis (02:10) Also thank you for joining me so late. I really appreciate people hanging around till the late hours of the evening to join me on the podcast. I know it’s difficult for us to make the hours that suit us both. I’m in the daytime here in Australia and you’re in the nighttime there. Trisha Lyn Winski (02:27) Yeah. Yeah. It’s okay. I can come to you later. Yeah, it’s late. Bill Gasiamis (02:34) As a stroke survivor, is it too late? Trisha Lyn Winski (02:36) No, no, not at all. Bill Gasiamis (02:38) Okay, cool. Tell me a little bit about what you used to get up to. What was life like before the stroke? Trisha Lyn Winski (02:45) I just get up and get to work. deal with it all day, come home, I’d go to the restaurant, the bars, my friends, and then like I had a stroke and everything changed. Everything changed in an instant. Bill Gasiamis (03:00) How old were you in the district? Trisha Lyn Winski (03:02) I was 46. Bill Gasiamis (03:04) And before that, were you in a family, married, do you have kids, any of that stuff? Trisha Lyn Winski (03:08) I have a kid. Now he’s 28. He was 25 when I had it. I was married before, but like a long time ago. Actually, my ex found me when I had a serve. So he’s the one who found me. But so yeah, that’s all I have here. My mom passed away in November. So it’s been challenging. Yeah. Bill Gasiamis (03:30) Dramatic, ⁓ Sorry to hear that. how many years ago was a stroke? Trisha Lyn Winski (03:37) ⁓ It’s three years and three months. Bill Gasiamis (03:41) Yeah. What were you focused on back then? What were the main goals in your life? Was it just working hard? Was it getting to a certain time in your career? What was the main goal? Trisha Lyn Winski (03:50) I think I working hard, but I just wanted to get to a good place in my career. And I think I was in a good place. Now I second guess at all time because I’ve had strokes now, it doesn’t matter what happens. I’m always second guessing it. But I was in a good place. I just felt like I needed to make them better. And the stroke happened and I so didn’t. Bill Gasiamis (04:17) What kind of work did you do? Trisha Lyn Winski (04:18) I was the corporate finance director for an auto group. Bill Gasiamis (04:22) A lot of hours was it like crazy hours or was just regular hours. Trisha Lyn Winski (04:26) No, I worked a lot of hours, but in the end he wanted me work like 40, 50 hours a week. I couldn’t do that. 50 hours a week was killing me, but 40 was enough. Yeah. Bill Gasiamis (04:37) Yeah. Were, did you consider yourself healthy? Was there any signs that you were unwell, that there was a stroke kind of on the horizon? Trisha Lyn Winski (04:46) No, nothing, The day before this, had, my eye was like, I want to say it’s twitching, but it wasn’t twitching. It was doing something like odd. And I didn’t realize that until I had a TIA recently, but I realized it then. It’s, how can I explain it? It’s like a clear, a blonde shape in my eye. it, when I move, it goes with me. And I try to see around it, I can’t see around it. And I said to Gary, I worked with him, was like, I’m gonna have to go to hospital. This continues. can’t see.” And then it went away. And that’s the only symptom I had. Only symptom. And he said, no, I should told you that you might be having a stroke. like, even if you told me that, I never believed him. Never. Bill Gasiamis (05:23) Hello? Yeah. When you’re, and it went away and you didn’t have a chance to go see anyone about it. Trisha Lyn Winski (05:37) Yeah, it went away in like, honestly, like five minutes. So I didn’t see anybody, but I thought it was okay. I mean, I guess now that I’m looking back at it, it’s kind of odd. It’s one eye, but I felt like it was gone. I don’t know. yeah. No, you don’t. Bill Gasiamis (05:55) Yeah. How could you know? mean, no one knows these things. And, and then on the day of the stroke, what happened? Was there any kind of lead up? Did you notice not feeling well during that day? And then the stroke, what was it like? Trisha Lyn Winski (06:09) No, so I get up like every other day to go to work. I went in the bathroom and the night before that Jason said Jason’s ex-ad he stayed at my house because he needed need a place to stay because he couldn’t go out Zach again. I was like okay we’ll sleep in my couch I’m gonna go to work tomorrow but you can sleep here. So he was there and I think if he wasn’t there I would have died. Post-Stroke Challenges and Rehabilitation Makes me sad. Um, anyway, so when I woke up I went to bathroom and I stood up from the toilet and I like I fell over and I I didn’t even realize it. So I fresh my face in like five places when I fell and I didn’t even I didn’t even know it my whole side was numb. So I didn’t feel it. And Jason, you know, helped me to bed. I thought he helped me to bed. He didn’t he like drug me to bed. He got in the bed and then I… He came back in like five minutes later, are you okay? Like he knew something was wrong. And I couldn’t articulate to him. So I said, I’m fine, I’m fine. I’m gonna go to work. So he put the phone in my hand to call my boss. And he came back in like five minutes later and I… He put it in my right hand so I didn’t call anybody. And he said, my God, I’ll never forget this. He said, my God, you’re having a stroke. And I couldn’t talk. I couldn’t talk. I just… Yeah, I could hear him say that, but I couldn’t talk to him. It’s… It’s really scary. Like, even talking right now, like… It upsets me. Bill Gasiamis (07:37) but you can hear him say that. This is really raw for you, isn’t it? Yeah, understand. went through very similar things like trying to speak about it and getting it out of my self and trying to, you know, bring it into the world and get it off my shoulders. Like often brought me to tears and made it really difficult for me to have a meaningful conversation with anyone about it. Trisha Lyn Winski (08:07) It does. Bill Gasiamis (08:09) There’s small blessings there with you, okay? All happened when for whatever reason your ex was in the house and was able to attend you. It’s an amazing thing that that is even possible ⁓ considering how some breakups go and how possible. Yeah. Yeah. And so he called 911 and got you to hospital. Is that how you ended up in hospital? Trisha Lyn Winski (08:15) I know. We’re good friends, it was a challenge. Yes. So they ended up taking me to MGH, it’s a hospital right down the street from me. ⁓ But he’s not from here, he’s from Pennsylvania. he didn’t know where to me, like, just has to go to the hospital. So they knew when they came up. So MGH is like known for their strokes, they’re like really good at strokes. ⁓ And so that’s where they plan on taking me. Bill Gasiamis (09:01) Yeah. And do you get a sense of what happened when you were in the hospital? Do you have any kind of recollection of what was going on? Trisha Lyn Winski (09:11) I honestly, in the first week, no. I remember seeing, in the first day, I saw Zach, my son, and Zach, his brother Connor was in there too, and Jason, they all were there with me when I woke up. But I saw them, and I saw my friend Matt, and then that’s all I remember seeing. I remember seeing my mom on the third day. I’m in jail on this third day, but that’s about it. Bill Gasiamis (09:41) Yeah. And then did you have deficits? couldn’t feel one of your sides? Did that come back, whole problem, that whole challenge? Trisha Lyn Winski (09:50) So the right side, it came back, but it came back like sporadically. So I just kind of want to come back. So the first day I saw Matt and I put up my arm to talk to him and I couldn’t like put my arm out. So I just like tap my arm. ⁓ Now I can move my arm fully, but I can’t, I don’t have the dexterity in my arm. So I can’t like. I can’t flip an egg with this hand. it’s like this and then this is like that. I can’t do this. ⁓ And my right foot has spasticity in it. then the three toes on the side, I could curl them up all the time. Bill Gasiamis (10:36) Okay, next. Trisha Lyn Winski (10:37) and I did botox for it, nothing helps. Bill Gasiamis (10:40) huh. Okay. Have you heard of cryo-neuralysis? Trisha Lyn Winski (10:42) yeah, yeah, I got that back. Bill Gasiamis (10:45) You got cryo-neuralysis? Trisha Lyn Winski (10:47) No, what are you saying? Bill Gasiamis (10:49) That’s spasticity treatment. Cryo-neurolosis, it’s a real weird long word. There’s a dude in Canada that ⁓ started a procedure to help freeze a nerve and it expands the ⁓ tendons or something around that and it decreases spasticity and it lasts longer than Botox. Trisha Lyn Winski (10:50) ⁓ no. Okay. ⁓ yeah, you need to give me his name. We’re gonna talk. That’s I went twice to have it done. ⁓ it didn’t help at all. And I met, I met the guy, ⁓ the diarist, diarist ⁓ at the hospital. And he said, I didn’t think it was, it was going to work. I’m like, it’s the first I saw you. And he was like, I saw you and you had the shirt. I’m like, okay. I saw a million people that we can’t, I don’t remember who they are. Bill Gasiamis (11:20) Okay. Yeah. All right. So I’m going to put a link to the details for cryo-neuralysis in the show notes. ⁓ you and I will communicate after the podcast episode is done. And I’ll send you the details because there’s this amazing new procedure that people are raving about that seems to provide more relief than Botox in a lot of cases, and it lasts longer. And it’s basically done by freezing the nerve or doing something like that to the nerve. in an injection kind of format and then it releases the spasticity makes it improve. ⁓ well worth you looking into it, especially if you’re in the United States and it’s in Canada. ⁓ I know that doctor is training people in the United States and around the world. So there might be some people closer to you than Canada that you can go and chat about. Yeah. And how long did you spend in hospital in the end? Trisha Lyn Winski (12:28) Yeah. Yeah. Awesome. I love it. four weeks. Yeah. So the first, the first week I was at MGH, ⁓ they kept me for longer in the ICU because I had hemorrhagic conversion, transformation, whatever it’s called. I, you know what that is? Well, that went from the, I can’t think of what I was trying to say. Bill Gasiamis (12:40) for weeks. Ongoing Health Concerns and Medical Appointments Trisha Lyn Winski (13:05) It went from the aneurysm to the, not the aneurysm, the. Bill Gasiamis (13:09) The carotid artery. The clot, ⁓ Trisha Lyn Winski (13:11) ⁓ yes. Yeah, carotid artery and went to my brain. So I my brain bleed for a couple of days, but not like bleed, bleed, but it showed blood. So they kept me in it for longer. Bill Gasiamis (13:23) Okay. And then did you go straight home? Did you go to rehab? What was that like? Trisha Lyn Winski (13:29) I went to rehab for three weeks. And I sobbed my eyes out. So at that point I was like, I was good, but I wasn’t at all good, but I thought I was good. I said, I wanna go home, I wanna go home. My son can, he teach me all, do all this stuff, I gotta go home. Now that I’m past it, there’s no way he could tell me, no way. I couldn’t tie my shoes. Bill Gasiamis (13:34) three weeks. And when you came home, were people living with you? Trisha Lyn Winski (13:56) So he’s. No, nobody was living with but he had to come move in with me for three months. Bill Gasiamis (14:06) Yeah, your son, yeah. What was that like? Trisha Lyn Winski (14:07) Yeah. Here’s my proxid. I mean, honestly, at the time it was fine because I slept all the time. I slept like, God, I would go to bed like seven, 730 at night. And I was sleeping until like, at least, some sort of next day. I’d get up for a few hours, do what I had to do, and then fall back asleep. But just, I slept for a lot. So it was okay then. But come to the end of it, I’m like, okay, it’s time for you at your place. I need my space again, but yeah, he’s yeah, I need to have my own space. But at the time I know I need to rest. Yeah, I do. Yeah. ⁓ Bill Gasiamis (14:36) Yeah. and you need somebody around anyway. It’s important to have something near you if you’re unwell. Do they know what caused the stroke? Trisha Lyn Winski (14:53) ⁓ So I had a karate web. means that… ⁓ It’s really, it’s really rare. Only like 1.2 % of the whole population has it and I had it. It’s co-indentinob… co-ind… it’s… so I got it I was born. Bill Gasiamis (15:11) Yep, congenital. Trisha Lyn Winski (15:13) congenital, but they don’t know. I said that that would make it so much sense that they did a scan of your whole body at some point. I would have known that I had that years ago, but I didn’t know it. Bill Gasiamis (15:26) I don’t know what to look like, what to look for. The thing about scans, the whole body, my good friend of mine, the guy who helped me out when I was in hospital, he’s a radiographer and he does MRIs and all that kind of stuff. And he used to do my MRIs happened to be my friend happened to be working at the hospital that I was at. And he used to come and see me all the time. And I said to him, can we do a scan, you know, a preventative scan and check out, you know, my whole body? And he said, well, we can, but Trisha Lyn Winski (15:28) I know. Yeah. Bill Gasiamis (15:53) What are we looking for? I said, I don’t know anything. He said, well, we could, we could find a heap of things or we could find nothing. And if we don’t know what we’re looking for, we can’t set our scanners to the particular, settings to find the thing that you’re looking for. Because one scanner looks for hundreds of different things and the settings for to look for that thing has to be set into the scanner. And that’s only when people have a suspicion that you might have X thing. Trisha Lyn Winski (16:09) Yeah. Bill Gasiamis (16:23) then they set the scanner to find X thing and then they’ll look for it then they find it. He said, well, if we go in and do whole body scan, but we don’t even know what resolution to set it, how long to do the scan for. We don’t know what we’re looking for. So we don’t know what to do. And you have to be able to guide me and say, I want you to look for, in my case, a congenital arteriovenous malformation. In your case, carotid web. And in anyone else’s case is an aneurysm or whatever, but a general scan. Trisha Lyn Winski (16:38) Yeah. Bill Gasiamis (16:53) Like it’s such a hard thing to do for people. then, and then sometimes you said you find things that people do have unexpectedly because they go in for a different scan and then you discover something else. But now they’ve got more information about something that’s quite unquote wrong with them. And it’s like, what do you do with that information? Do I do a procedure to get rid of it? Do I, do I leave it there? Do I monitor it? Like, do I worry about it? Do I not worry about it? Trisha Lyn Winski (16:56) Yeah. Bill Gasiamis (17:21) is that it throws a big kind of curve ball out there and then no one knows how to react to it, how to respond. So it’s a big deal for somebody to say, can we have a whole body scan so we can work out what are all the things wrong with me? Trisha Lyn Winski (17:38) I it’s true, but I think that for me, most people have a carotid web. It’s obvious. know how old you are, it’s obvious. So then in that regard, like a carotid web, it looks a little indentured in the bloodstream. looks a little indentured in your artery. So I think that they would have seen it, but… ⁓ Bill Gasiamis (18:02) I love her. Trisha Lyn Winski (18:06) But then again, I don’t know. The hospital I went to, he said, you’re lucky you came here because most hospitals would have missed us. and I’m like, Bill Gasiamis (18:15) because they probably didn’t have the technology to find it. Trisha Lyn Winski (18:17) I don’t know. when I came to, it wasn’t months later, but I saw it on the scan. like, ⁓ it’s right there. ⁓ He said, yeah, but I thought it would be obvious, but it’s not so obvious. Bill Gasiamis (18:33) I just did a Google search for it and it says a carotid web is a rare shelf like membrane type narrowing in the internal carotid artery, specifically arising from the posterior wall of the carotid bulb. It is a form of intimal fibromuscular dysplasia that causes blood to stagnate forming clots that can lead to recurrent often severe ischemic strokes. Okay. So it causes blood to stay stagnant in that particular location causing clots. And you in the time we’ve been communicating, which is only in the last three or four weeks, you even sent me a message saying you just had an S you just had a TIA. ⁓ how come you’re still having clots? they not treating you or Trisha Lyn Winski (19:20) Yeah. No, I think they so they gave me um a scent in my re to kind of write that I don’t know why I had it cuz um, but my eye was like acting crazy again Just one eye and I I didn’t want to go to the hospital. I I don’t want the hospital at all for anything if I have if I don’t have to go I’m not going to hospital I Text Jason and Zach and they’re like no you have to go like I’ll wait a little while so Meanwhile, I was waiting a little while because I didn’t want to go and then I listened to ⁓ a red chat chat GBT He said no you have to go right now. Here’s why I’m like Now it’s like five hours later. I’m Sorry, so I went but and they said that I have ⁓ It’s likely I had a clot They don’t know where it came from though. So that’s that’s the thing is it’s confusing and by the way I think there’s something to be said about ⁓ I think if you have a stroke You can have one again easier than somebody who didn’t. I didn’t know that, but I learned it quickly. ⁓ So they said I had it, maybe went up in my eye, but it broke apart before it became an actual stroke. But I don’t know. Bill Gasiamis (20:41) thing. I love that you didn’t want to go and you ignored the male influences in your life, but you listen to chat. Trisha Lyn Winski (20:50) Thank you. I did, I did. They’re so smart. they say, I find on Google anyway. So that I listened to ChatGVT, it was like, I don’t know. And I know that like… Bill Gasiamis (21:05) You know that that’s kind of mental. Trisha Lyn Winski (21:08) It is actually, but I know that like my son is actually really smart and I think that they, but I didn’t listen him. I just listened to Chad Judy. Bill Gasiamis (21:18) Yeah. Anyhow, I love that you went in the end because, ⁓ and why don’t you want to go like, you just hate doctors and hospitals and that kind of thing? They saved you, didn’t they? Didn’t they save you? Didn’t they help you? Trisha Lyn Winski (21:29) There was? Yeah, but I don’t know. I think I spent so much time in there. ⁓ I don’t know. It’s in my head. I don’t like to sit in hospitals because of that. So after having the stroke, I stayed in hospital for month. I got out. I went back in like two weeks. I fell over twice. They thought that’s why. So when I was in hospital, something like they go Vegas something is pretty common. And I was like, okay, I did want to go then. I did want to go and then Zach made me. And then two months later, I went in to get the stint. And at that time I got a period. So it’s a long story. But I said to the doctor, I’m like, well, I’ll be okay. Does it do anything else because of this? He’s like, no, you should be fine. But if it gets bad, you have to go the hospital. he got bad. I almost died. I almost died from that. And that made me traumatized because I was awake and alive for all of it. I saw it all and passed out like six times in like three, I don’t know how many days, like five days. Yeah, but. Navigating Health Challenges and Medical Support Bill Gasiamis (22:46) Yeah. The challenge with something going wrong in hospital is that it’s less likely to be as dramatic as something going wrong at home. And that’s the thing, right? If you haven’t got help, then the chances that your stroke cause you way more deficits. That’s like so much worse. The best place for you to be is somewhere other than at home because you don’t want to risk being at home alone when something goes wrong and then you’re home alone. Trisha Lyn Winski (23:04) Yeah. Bill Gasiamis (23:15) when the blood flow has stopped to your head for a lot of hours. Like it could kill you, it make you more disabled and it could do all sorts of things. it’s like, but I get the whole, what is it like? It’s kind of like an anxiety about medical people and hospitals and stuff like that. Trisha Lyn Winski (23:20) Yeah. Yeah. I think that it’s mostly like I don’t like to stay there. I got a weird thing about this. I don’t like to stay there. I can stay anywhere I go, but the hospital really bothered me. I think that they were actually pretty good to me. So I’m not mad at them for that. ⁓ But I don’t want to see them now if I can possibly help it. Bill Gasiamis (23:54) Yeah, you’re done with them. Trisha Lyn Winski (23:56) I’m totally done. Bill Gasiamis (23:58) Yeah, I get it. I got, I got to that stage. My dramas were like three or four years worth of, you know, medical appointments, scans, surgery, rehab. Trisha Lyn Winski (24:07) Oh my god. Medical appointments. Medical appointments, forget it. They’re like, oh my god. I have so many of them, I can’t even say it. Bill Gasiamis (24:11) Yeah. I hear you. hear you. went through the same thing and then I got over it. now lately I’ve been going back to the hospital and seeing medical doctors for, um, not how I haven’t got heart issues, my, I’ve got high blood pressure and they don’t know what’s causing it. And, know, I’ve had my heart checked. I’ve had my arteries checked. I’ve had all these tests, blood tests, MRIs, the whole lot, and it’s getting a little bit old, you know, like I’m over it. But the truth is without them, I don’t. I don’t have a hope. Like if my blood pressure goes through the roof, you know, which had been, had been sitting at 170 over 120, 130. And I have a brain hemorrhage because of uh, high blood pressure. know what a brain hemorrhage is like, you know, I don’t want to have another one. So I’m like, I am going to, uh, I’m going to shut up, go through it and be grateful that I have medical support. Um, which, which Trisha Lyn Winski (24:55) Yeah. I know. Yeah. Bill Gasiamis (25:14) You know, a lot of people don’t get to have, it’s like, whatever, you know, I’ll cop it. I’ll cop it. I’ll go. And hopefully they can get ahead of it. So now they’re just changing my medication. I want to get to the bottom of it. Why have I got high blood pressure? The challenge with the medical system that I have is, is they just tell you, you have it and here’s something to stop it from being high. But I, they never say to you, we’re going to investigate why, like we’re going to try to get to the bottom of it. Trisha Lyn Winski (25:16) Yeah. Yeah. Bill Gasiamis (25:40) and I’ve been pushing them to investigate why do I have high blood pressure. Trisha Lyn Winski (25:44) sure. So I don’t have, I never had high blood pressure but speaking of I’ve, I don’t have a problem with my heart but they, so that when I had this for the first time they made me get out and have to, I had to wear a heart monitor for a month and I said like why am I wearing a heart monitor? There was something, they, I don’t know what it is. Bill Gasiamis (25:51) Yeah. Trisha Lyn Winski (26:13) Afib or something like that in there. And this time was the same thing. had heart bars over there right now. I had to send it back and they’re gonna send me new one. every time I’ve taken my heart test, and by the went for EKG just the other day. It was fine. But they found like something near my heart rate, it’s not like I need to be concerned about these. It’s nothing I need to be concerned about. So I was like, okay. They’re making you wear that for a month. Anyway. Bill Gasiamis (26:46) Yeah, just to go through things, just to check things, just to work some stuff out. Trisha Lyn Winski (26:47) Yeah. Yeah, yeah, this month I have ton, I have like seven appointments. Bill Gasiamis (26:56) Yeah, I used to forget my appointments all the time, even though I had him in my calendar, even though I had reminders, I just, even though I got reminded on the day, an hour before, two hours before, he meant nothing to me. I would just completely forget about him. Trisha Lyn Winski (26:59) me too. Me too. Same thing. I forgot all of it. And I had to share it with Zach and he could tell me, have an appointment. Like, okay. I forgot. He’s like, have an appointment. I’m like, fuck, I have to go. Bill Gasiamis (27:13) Yeah. How long did it take you to get back to work? Trisha Lyn Winski (27:28) I at least I went back to work. I went back to work before I was told I could go back to work. And I wrote them an email like, listen, I can’t sit at home and run one fucking freeze. I need to do something. So I went back to work. ⁓ And at first I went back to work part time. And honestly, like I cried. I left there crying every day. And not because I think that I. Not because of people. don’t think it was the people. I couldn’t understand. My head was like… I couldn’t focus and put all that work into my… I couldn’t put it into me. So I couldn’t understand what I was doing. And then you give them a month. Eventually I got it, but it was a struggle. I should have waited until October. And they said I should go back in October. Maybe I could go back in October. I should have waited until then. Bill Gasiamis (28:22) Yeah. Do you kind of like a nervous energy type of person? Do you can’t sit still or is it like, can’t spend a lot of time on your own with yourself? Like, is it? Trisha Lyn Winski (28:34) I can spend a lot of time by myself. don’t like to ⁓ here by myself. I can be by myself. I don’t like to be… I can’t think of… What did you say before? Bill Gasiamis (28:48) Is it just downtime? Is it the downtime? it too much? Did you have too much downtime? Trisha Lyn Winski (28:52) Yes, definitely too much downtime. But I couldn’t see I was sitting at home and Zach was there, whatever he was doing. was like, I can’t, I need to do something. So I went to work and in all reality, I should have walked around. should have, I didn’t do that. Bill Gasiamis (29:04) Yeah. Yeah. How did your colleagues find you when you went back? Did they kind of appreciate what you had been through? Was that easy to have those conversations? What was it like? Trisha Lyn Winski (29:21) Yeah, so I oversaw all the finances department. ⁓ They were actually like, honestly like rock stars. They were like really, really good to me. ⁓ That was helpful. because I love them anyway. it made me feel good to say that that’s what I’m doing. ⁓ But I still left there and cried. Not because like I think that I just couldn’t understand it. They were good to me. Everyone was good to me in theory, I couldn’t understand. Bill Gasiamis (29:56) you had trouble with the work, with doing your job because of your cognitive function. Trisha Lyn Winski (29:59) Yeah, yeah, yeah, there’s a other little things with that, it’s more or less the cognitive function is a problem to do the work. Bill Gasiamis (30:12) Yeah. Tiring. Like I mentioned, it’s really mentally draining and tiring. remember sitting in front of a computer trying to work out what was going on on the screen and it being completely just blank. Acceptance and Coping with Mortality Trisha Lyn Winski (30:22) And so that’s actually what probably got me the most was that what you’re saying. I’d be sitting there and look at my screen. I couldn’t remember what I was doing, but I remember like weird things. I remember how to do like Excel. I don’t know how I remember Excel, but I did. I was really good with numbers. And they said that I was going to have a problem with numbers and everything. So I have aphasia too. I don’t have a choice with that, but Bill Gasiamis (30:31) Yeah. Trisha Lyn Winski (30:49) That’s why I talk so weird. Bill Gasiamis (30:52) Okay, I didn’t notice. Trisha Lyn Winski (30:54) Oh, oh, I feel good. But yeah, I have aphasia. But I can do certain things. And the numbers was going to be, they said it going to, I couldn’t, that’s going to be a problem. And the numbers, I can do all day. But I can’t do other little things. Bill Gasiamis (31:11) I understand. So you went back to work. It was kind of helpful, probably too early to go back, but good to be out of the house. Good to be connecting with people again. And has that improved? Did you find that you’ve been able to kind of get better in front of a screen, better with the things that you struggled with, or is it still still a bit of a challenge? Trisha Lyn Winski (31:19) Yeah. Yeah. So two things, ⁓ I got fired eventually, and that’s another whole issue. Yeah, yeah, we’ll talk about that another time. but ⁓ so, but now that I’m here, I could look my computer and it’s fine. I can do it all day. But I really, it’s a long story. think that Warren, my boss, ⁓ Deb, but they definitely like hinder me. ⁓ Bill Gasiamis (31:39) Understand. another time. Yeah. Okay. I understand. Well, maybe we won’t talk about it, like, because of the complications with that, but that’s all good. I understand. So, ⁓ do you know, a lot of the times you hear about acceptance and you hear about, ⁓ like, Trisha Lyn Winski (32:07) Yeah. Yeah. Yeah. Bill Gasiamis (32:23) When some, well, something goes through something serious, something difficult, you know, there has to be kind of this acceptance of where they’re at. And that’s kind of the first stage of healing recovery, overcoming. Where are you with all of this? you like, totally get that at 46. It’s a shock to have a stroke. You look perfectly fine, perfectly healthy. This thing that you didn’t know about that you’ve had for 46 years suddenly causes an issue. How do you deal with your mortality and knowing that things can go wrong, even though you’re not aware of, you you’re not doing anything to really make your situation worse. You look fit and healthy. Were you drinking, smoking, doing any of that kind of stuff? Trisha Lyn Winski (33:06) I drank occasionally, I wasn’t a drunk, I don’t smoke. Bill Gasiamis (33:11) yeah social smoke social drinker but not smoker Trisha Lyn Winski (33:15) Yeah, I don’t smoke. I don’t have anything that could cause it. I have nothing that, no blood pressure, no diabetes, It’s hard. Jason talks about it all the time. It’s hard. don’t… It makes me mad. Really mad. Really, really mad that I to stroke. And like, everyone that has it… Bill Gasiamis (33:24) Yeah. Trisha Lyn Winski (33:41) or every dozen. I’m like, why me? Why did I have to have it? It’s frustrating. It’s so frustrating. Bill Gasiamis (33:48) Yeah, mad at who? Trisha Lyn Winski (33:50) I don’t know. I’m just mad. Like, I don’t know who I’m mad at. Bill Gasiamis (33:56) Yeah. The thing about the why me question, it’s a fair question. asked it too. I even ask it now sometimes, especially when, um, I’ve got to go back for more tests, more, uh, now I’ve got high blood pressure. Like, like I needed another thing to have, you know, like, and it’s like, the only thing that I come back with after why me is why not me? Like, who are you to go through life completely unscathed and get to 99 and then die from natural Bill Gasiamis (34:25) wanted to stop there for a second because that question, why me, is something I wrote about in my book. It’s one of the most common and most painful places stroke survivors get stuck. If you want to read about it and how I worked through it and what I found on the other side, the book is called The Unexpected Way That a Stroke Became the Best Thing That Happened and it’s available at You’ll find the link in the show notes. And now let’s get back to Tricia. Bill Gasiamis (34:54) like Trisha Lyn Winski (34:54) Yeah. Bill Gasiamis (34:55) You’re normal. being normal, ⁓ normal things happen to people. Some of those things that are shit are strokes and heart attacks and stuff that you didn’t know that you were born with. ⁓ what’s really interesting though, is to live the life after stroke and to kind of wrap my head around what that looks like. My left side feels numb all the time. ⁓ tighter, ⁓ has spasticity, but nothing is curled. Like my fingers on my toes are not curled, but it’s tighter. ⁓ it hurts. ⁓ It’s colder, it’s ⁓ sensitive, I’ve got a, and I always have a comparison of the quote unquote normal side, the other side, it’s always. And the comparison I think is worse because it makes me notice my affected side and that noticing it. Trisha Lyn Winski (35:31) Yeah. or yeah. Bill Gasiamis (35:46) makes the reality happen again every day. Like it’s a new, I wake up in the morning, I get out of bed, my left side still sleepy. I have to be careful. If I’m not careful, I’ll lose my balance. I don’t want to fall over. And it’s like, I get to experience a different version of myself. And sometimes I want to be grateful for that. want to say, wow, what a cool, different thing to experience in a body. But then I’m trying to work out like, what’s the benefit of it? don’t know if there’s a benefit. ⁓ Trisha Lyn Winski (36:14) I don’t know either. Bill Gasiamis (36:15) to me, but, Trisha Lyn Winski (36:15) I don’t either. Bill Gasiamis (36:18) but here I am talking to you and, and, and 390 people before you, ⁓ about strike all over the world and we’re putting something out and it’s making a difference. And maybe that’s the benefit. I don’t know, but do know what I mean? Like, why not us? I hate asking that question too. Trisha Lyn Winski (36:34) I don’t know. You had ⁓ the podcast on YouTube and I stumbled upon it on the wise. I watched YouTube and then you came out there and I’m like, so before that I was looking at different, I watched every video, every video on strokes, every video I could possibly type but I watched. I did. ⁓ And then I stumbled upon your stuff and I watched that stuff too. And that’s why I wouldn’t have thought to call you or reach out to you. Bill Gasiamis (37:11) Was it helpful? Was it helpful? Trisha Lyn Winski (37:13) Yeah, it is helpful. But it doesn’t change the fact that I had a stroke. All the people that had it, I feel bad for them. Honestly, like, so when I was at the hospital, they had me join a bunch of groups on Facebook and Instagram that are like, they’re people who’ve gone through a stroke. most, I don’t comment on them. I don’t say, because most of the time it’s people bitching. Bill Gasiamis (37:19) Yeah. Yeah. Trisha Lyn Winski (37:43) But I really like, times I, trust me, I’m like ready to kill somebody. But I don’t like say it there. I only ask them questions that are really serious. But sometimes I read what they say. And there was a guy the other day, I don’t know what he wrote, but he had like all kinds of words that they were way jumbled. was like, his message just didn’t make sense. I thought to myself, God, if I was like that, I’d be so sad. Somebody, I do think that he’s worse than I could be, but you don’t know. Bill Gasiamis (38:19) Yeah. Communication Challenges and Aphasia Yeah. He, his words are more jumbled than yours. And you, if you, you, you’re thinking, if you were like that, you would be probably feeling more sad than you currently are. And you’re assuming that maybe that person is feeling sad, but maybe they’re not, maybe they just got the challenge and they’re taking on the challenge and they’re trying to heal and recover. don’t know. And maybe, maybe they’re getting help and support through that therapy and also maybe psychological help and all that kind of stuff. Have you ever had any counseling or anything like that to sort of try and wrap your head around what the hell’s going on in your life? Trisha Lyn Winski (38:54) So I did it once and actually like I think she was okay. I felt like I was always having to talk. I know that I’m so stocked but she wasn’t asking me a lot of questions and I felt like she needs to me more questions. I’ll have more answers but like but she didn’t. She just wanted me to talk so I just talked. But I stopped seeing her because I… So two reasons. I stopped seeing her because they when they fire me I… I didn’t know what I had to do. I knew I insured that I didn’t know how long it was going to be for me to have that. So I talked to her for a little bit and then I stopped talking to her because I just couldn’t deal with it. I think now I’m getting to the point where I’m going to do it. Bill Gasiamis (39:37) It was a bit early. I like that. I like what you said there. Cause sometimes it’s early. It’s too early to go through that and unwrap it. Right. And now a little bit of times past, you probably have more conscious awareness of, do need to talk about this and I need to go through and see a certain person. And now I’m going to take that action. It’s been three years and now I can take that action. like it. ⁓ and I like what you said about, you have to feel like you’re connected to that person or you have rapport or Trisha Lyn Winski (39:46) It is. Yeah. Yeah. Yeah. Yeah. Bill Gasiamis (40:11) they get you and you’re not just, it’s not a one way conversation. That’s really important in choosing a counselor. I know my counselor, we, I didn’t do all the talking. was like you and me chatting now about stuff. had a conversation about things regularly. And therefore, ⁓ one of the good things that she was able to do was just ease my mind when I would go off on real negative tangents, you know, she would try to bring me back down just to calm and. Trisha Lyn Winski (40:35) Yeah. Bill Gasiamis (40:39) settle me down and offer me hope. Trisha Lyn Winski (40:42) I think my, honestly my biggest problem with this whole stroke and having it at all, I have aphasia and that 100 % kills me. Because I can’t like, I can talk like normal but I can’t talk like… I forget what I’m saying. So it’s in my brain, but I can’t spit it out. I get really frustrated at that point. people, I had a stroke, my left hemisphere and my right side went numb. My left hemisphere is all kinds of different, different things that I can’t do. The good news is my left means I can’t like, I can talk to people like this. But the other person and that guy I was talking about, he probably had the right side, his aphasia was. really bad, really bad. But I was a person who talked like really fast all the time, all the time. And now like, I think part of my brain goes so fast and I can’t spit it out. I get really, I get, it’s, yeah. Bill Gasiamis (41:38) Okay. as quickly as you can. Okay, so you know, I’ve spoken to a ton of people who have aphasia. And one of the things they say to me is when they have frustration, their aphasia is worse. So the skill is to learn to be less frustrated with oneself, which means that’s like a personal love thing. That’s self love, that’s supporting yourself, you know, and going. Trisha Lyn Winski (42:00) It is. The Journey of Recovery and Self-Discovery Yeah, that’s a point. That’s a good point. Bill Gasiamis (42:13) And it’s going like, well, you know, you’re trying your best. It’s all good. You know, don’t get frustrated with yourself. Don’t hate yourself. Don’t give yourself a hard time about it. ⁓ and try and decrease the frustration. Then the aphasia gets less impactful, but, ⁓ and then maybe, you know, this part of learning the new you is bring the old Trisha with you, but maybe the nutrition needs to be a little bit more slow, a little more measured, a little more calm. And it’s a skill because for 46 years, you were the regular. Trisha Lyn Winski (42:36) Yeah. Bill Gasiamis (42:42) Tricia, the one that you always knew, but now you’ve got to adjust things a little bit. It’s like people going into midlife, right? Like us, you know, in our fifties and then, um, or, know, sort of approaching 50 on and beyond and then go, I’m going to keep eating, uh, fast food that I ate when I was 21 and 20, know, McDonald’s or sodas or whatever. You can’t do it anymore. You have to make adjustments, even though that’s been your habit for the longest time, your body’s going, I can’t deal with this stuff anymore. Trisha Lyn Winski (43:03) Yeah. Bill Gasiamis (43:12) Take it out, you know, let’s simplify things. And it’s kind of like how to approach. I stroke recoveries things need to kind of get paid back and simplified. And it has to start with self love. And you have to acknowledge how much effort you’ve already put in for the last three years to get you to the position that you are now, which is far better than you were three years ago when the stroke happened. And you have to celebrate. how much your body is trying to support you heal your brain. Your body’s trying to get you over the line and your mindset is getting frustrated with itself, which is making things worse. Tweak that and things will get a bit better maybe. I don’t know. Trisha Lyn Winski (43:55) It does. You’re 100 % right. ⁓ So whenever I’m not stressed, so two things. I think when I talk to people I don’t know, I always get like nervous about that. ⁓ Bill Gasiamis (44:10) You think they’re thinking about things that you’re not they’re not really Trisha Lyn Winski (44:13) Yeah, but then who knows what they’re thinking of. that’s just how I get, whenever I get like, I went to a concert like a couple of years ago and I was like, I believe I couldn’t, I could hear that the music is so loud in my brain. Like I gotta get out of here. So I left. I’ve gotten better since then, but there’s something about, I have to do things slower. I have to do things over. I’ve realized that like recently, like in the last like maybe month, I have to do things very slow. I have to. And maybe this is God’s way of like, tell me like slow the f down, you’re going too fast. But that’s how I live my whole life. And then all of a sudden, now you’re not going to get up. Yeah, it’s a huge testament. So I can do it right. Not always right. Bill Gasiamis (45:01) Yeah, there’s an adjustment. Yeah, adjustment. Yeah. Trisha Lyn Winski (45:09) because again, it’s isophagia, it’s gonna be hair mess, if I go slower, much slower, I can get it all out. But, ugh. Bill Gasiamis (45:22) It’s a lot of work, man. It doesn’t end here. You know, the work just as just beginning, you know, this getting to understand yourself, to know yourself, to support yourself, to be your biggest advocate. ⁓ and then to fail and then to try and be the person that, ⁓ picks themselves up and goes again and tries again without getting frustrated. I know exactly what you mean. Like so many people listening will know what you mean. Trisha Lyn Winski (45:22) It’s a pain. It’s a pain! Bill Gasiamis (45:51) And with time, you’ll get better and better because I know that three years seems like a long time, but it’s early in the recovery phase. The recovery is still going to continue. Year four, five, six, seven will be better and better and better. I’m, I’m 12 years post brain surgery and 14 years post first incident. So it’s like, things are still improving and getting better for me. Trisha Lyn Winski (46:17) Yeah. Bill Gasiamis (46:18) And one of the things is the way that my body responds to physical exercise. went for a bike ride a little while ago, a couple of weeks ago. And when I used to go for a bike ride at the beginning, um, man, I would be wiped out for the entire day. Uh, and I used to do a morning bike ride about like 10, 30, 11 o’clock and I’d be wiped out for the rest of the day. Trisha Lyn Winski (46:32) Yeah. Bill Gasiamis (46:39) Whereas now I can go for a bike ride and just be wiped out like a regular person, you know, about an hour or two, and then I’m back on board with doing other tasks. So it takes so much time for the brain to heal. Nobody can give you a timeline and you’ve got heaps more healing to go. Trisha Lyn Winski (46:57) So I looked at my stuff on YouTube, how long it takes to recover from a stroke. I’ve looked at that everywhere. Everywhere I can find. I’ve looked at that. It’s so funny. Like everybody says that it’s, everybody’s story is different. Everybody. It doesn’t matter how long you were in hospital for, doesn’t how long. But that like, it’s crazy. have no like timetable of when I’m going to get better. None. I have to deal with it. Bill Gasiamis (47:27) Yeah. It’s such a hard thing. It’s not a broken bone, know, like six weeks, stay off it, do a little bit of rehab and then you’re back to normal. Trisha Lyn Winski (47:28) It sucks, but. I had two years before this or maybe a year before that, had a rotator cuff surgery. I look back at that and I’m like, that was so bad. And that was like night and day. The stroke definitely like, the stroke killed me. Not the stroke. I don’t want to say the stroke. I think having aphasia killed me. I do, the stroke is, get me wrong. I don’t like it either, but ⁓ the aphasia kills me. If I didn’t have that, I wouldn’t be normal, but I can be normal. But the aphasia. Bill Gasiamis (48:00) Okay. Yeah. But, but what, but that word killed me is a real heavy word, right? maybe you should consider changing that word, but also like, didn’t pick that you had aphasia and I, and I speak to stroke survivors all the time. Like I didn’t pick it. I, I just assumed that was the way you process your words and that’s how you get things out. Like it didn’t, I didn’t notice it at all. Trisha Lyn Winski (48:26) I know, I know, it’s funny that said Yeah, that’s actually good. That’s really good. But I know it’s it. I definitely know it’s it. I could talk like a mile a minute and now like. Bill Gasiamis (48:47) Yeah. Trisha Lyn Winski (48:52) I mean… Bill Gasiamis (48:52) Maybe it was maybe maybe now it’s more about ⁓ quality rather than quantity, Trisha. Trisha Lyn Winski (49:00) Apparently it is. Bill Gasiamis (49:01) I’m not saying that you didn’t have quality in that I didn’t know you so I’m not kind of yeah but you know what I mean like Trisha Lyn Winski (49:03) Yeah. No, it’s okay. Trust me, it’s okay. But yeah, it just frustrates me. I can’t get out what I want to get out. And so at that time, just give me a little time, I’ll get it out. But I can’t say that to people when I’m out. I can’t say this to So I just, I don’t say it at all. Bill Gasiamis (49:22) Yeah. so you stop yourself from communicating because you think you’re taking too long and it’s interrupting the flow of the conversation. Yeah. I think you’re doing that to yourself. I don’t think that’s true. We’ve had a fantastic conversation here and I’ve never picked it. Trisha Lyn Winski (49:34) Yeah. all day. But so you’re somebody who’s had a stroke before. It’s kind of different for me because you had. But if you didn’t have a stroke, will be… Well, I don’t know. Maybe not. Maybe one-on-one I’m okay. No, think I… No, it’s because you had a stroke. I think of all the people I’ve talked to and they’re one-on-one. I don’t do well with them. But I think that you’ve had a stroke so I just… I know how to communicate with you. Bill Gasiamis (49:54) I understand. And maybe you’re more at ease about it. Less feeling, judged. I understand. Yeah. Trisha Lyn Winski (50:20) Yes, all day. Even that guy I told you about that that said that on Facebook God like I Really like my heart goes out to him But then that there’s the people that are fishing a plane I’m like I want to say my heart goes out to them, it really, it goes to certain people. I think that. He’s like going through it. Bill Gasiamis (50:45) Yeah. One of the problems with going to Facebook to bitch and moan about it, especially when you’re going through it is that you get an abundance of people who also are there to bitch and moan about it. And, and that makes it worse. think you should do bitching and moaning on your own. Like when there’s no one watching or listening. Cause then that way there’s not a loop of bitching and moaning that happens. That makes it dramatically worse for everybody. Trisha Lyn Winski (51:01) Yeah, I do it myself. Bill Gasiamis (51:09) ⁓ and that’s why I don’t hang around on Facebook, Instagram, social media, or anything like that for those types of conversations. If I’m not sharing a little bit of wisdom or somebody’s story or, ⁓ asking a question, like a genuine question, one of the questions might be, did you struggle driving and did you have to pull over and go to sleep in the middle of the road? If you had a big trip ahead of you in the car, I’ve done that. Like if, if I’m not asking a question like that, I don’t want to be, ⁓ on social media saying. life sucks, this sucks, that sucks. Like forget about it. What’s the point of that? That’s why I started the podcast so I can have my own conversations about it that were positive based on what we’re overcoming rather than all the shit we’re dealing with. And that way ⁓ we take off that spiral, the negative downward spiral. trying to make it an upward spiral. You know, where things are. Trisha Lyn Winski (51:41) Yeah. Facing the Aftermath of Stroke Bill Gasiamis (52:05) I don’t know, we’re seeing the glass half full perhaps, or we’re seeing the positive that came out of it. If something like, I know there’s some positive stuff that came out of stroke for you. Day one, you definitely didn’t think that maybe three years down the track. Maybe if it wasn’t for this, well, then that wouldn’t have happened for me. Like I’ve been on TV. I’ve been at the stroke foundation. I’ve been on radio. I’ve been, I’ve presented. I’ve got a podcast. wrote a book. Like it’s taken years and years for all those good things to come, but they never would have happened if I didn’t have a stroke. So I wanted to have those types of conversations, you know, what are the positive things we can turn this into? Because dude, then there’s just enough shit to deal with that. We don’t have to deal with every other version of it, you know? ⁓ and I think it’s better to have your me personally, my negative moments alone, cause I don’t want to get into a competition with somebody. Trisha Lyn Winski (52:42) That’s good. Yeah. Bill Gasiamis (53:05) who I say, I didn’t sleep well, my left side hurts, it feels like pins and needles. And then they say to me, ⁓ you think that’s bad? Well, you know, forget about it. I don’t want to be that that guy on the other end of a conversation like that, you know. Trisha Lyn Winski (53:13) Yeah. ⁓ So you said your left side, ⁓ you see you have pin the needles, is always like that? So I’m sorry, had hemorrhagic stroke? Okay. I know the difference between two, ⁓ why did you have hemorrhagic stroke? Bill Gasiamis (53:27) Always, yeah, never goes away. Yeah, Brain blade. I was born with a blood vessel that was malformed. So it was like really weak one. I was really like, uh, was kind of like, uh, uh, it wasn’t created properly in my brain when I was born and it’s called an arteriovenous malformation. then they sit idle, they sit idle and they do nothing for a lot of people. And then sometimes they burst. Trisha Lyn Winski (53:58) Mm-hmm. ⁓ I heard it. Bill Gasiamis (54:08) And people sometimes have them all over their body. They don’t have to have them in their head. They can have them on the skin, ⁓ in, in an arm on a leg, wherever. And on an arm and a leg, they, they decrease the blood flow and they create real big lesions of skin damage on the surface in a brain. They leak into the brain and they cause a stroke. ⁓ so the challenge with it is like you, there was no signs and symptoms. for any of my life until it started bleeding. And when I took action, eventually, I was like, yo, I didn’t want to go to the doctor. I didn’t want to go to the hospital. I want to do any of that. It took seven days for me to go to the hospital. When I finally got there, they found the scan, found the blood in my head. And then they thought it would stop bleeding and it didn’t. And then it bled again and they wanted to monitor it to see if it stops bleeding. They wanted to try to avoid surgery. And then a bled a third time. And then after they bled the third time, they said, we have to have surgery. We’ve got to take it out because it’s too dangerous. And when it bled the second time, I didn’

This interview is brought to you in partnership with Eisai and is part of the Journey to Diagnosis series.Eisai: https://www.eisai.com/index.htmlJourney to Diagnosis: https://beingpatient.com/journey-to-diagnosis/ What are the early signs of primary progressive aphasia (PPA)?In this Being Patient Live Talk, Samuel Valverde and his wife, Heather, share their journey to a diagnosis of primary progressive aphasia, a form of cognitive impairment that affects language and communication.Samuel Valverde is a Desert Storm combat veteran and former police chief in Waelder, Texas, who built his life around discipline, service, and staying sharp under pressure. But over time, subtle changes began to appear — missed court dates, forgotten details, and increasing difficulty with focus, planning, and speech.In 2022, while being treated for PTSD, Samuel's psychologist noticed changes that seemed to go beyond trauma. After months of testing — including cognitive evaluations, speech therapy, MRIs, and a PET scan — Samuel was diagnosed at age 53 with primary progressive aphasia (PPA).In this conversation with Being Patient's Mark Niu, Samuel and Heather talk openly about:Recognizing the early warning signs of PPAThe road to diagnosisHow PPA affects speech and daily lifeThe emotional impact on the whole familyAdjusting roles as a couple after diagnosisFinding resilience, support, and hopeIf you or someone you love is living with PPA, young-onset Alzheimer's, or another form of dementia, this conversation offers insight, support, and practical perspective.Visit Being Patient for more Alzheimer's and brain health coverage: https://www.beingpatient.com/Follow Being PatientTwitter:   / being_patient  Instagram:   / beingpatientvoices  Facebook:   / beingpatientalzheimers  LinkedIn:   / being-patient  Being Patient is an editorially independent journalism outlet covering brain health, cognitive science, and neurodegenerative diseases. Our Live Talk series features interviews with experts and people living with dementia.

Send a textIn our update this month Derek Munn, Director of Policy and Public Affairs at the RCSLT covers: Schools white paper in England and SEND provision- what we know so far.Scottish election manifesto asks: https://www.rcslt.org/news/rcslt-scotland-publishes-key-manifesto-asks-ahead-of-2026-elections/ UK wide report on DLD in exams: New report calls for exam reform to support students with Developmental Language Disorder | RCSLTVoicebox competition launches in Northern Ireland: VoiceBox competition launches across Northern Ireland | RCSLTSwallowing Awareness Day 18 March https://www.rcslt.org/news/get-involved-in-swallowing-awareness-day-2026/ Westminster event on Primary Progressive Aphasia: https://www.rcslt.org/news/invite-your-mp-to-attend-primary-progressive-aphasia-parliamentary-event/ Response to cancer strategy.Letter from AHPs to Wes Streeting: https://www.rcslt.org/news/rcslt-joins-professional-bodies-calling-for-government-action-on-ahps/RCSLT workforce survey – call for responses to help us build the evidence base on vacancies and retention: https://www.rcslt.org/news/complete-the-2026-workforce-survey/. Please be aware that the views expressed are those of the guests and not the RCSLT.Please do take a few moments to respond to our podcast survey: uk.surveymonkey.com/r/LG5HC3R

This Better Edge podcast episode features Robin L. Cohen, MD, Michelle Armour, MS, CCC-SLP, and Shamun Mohammed, MS, CCC-SLP, as they discuss the rehabilitation of a 77-year-old stroke patient with severe fluent aphasia, auditory comprehension challenges and apraxia. They highlight how interdisciplinary collaboration, strong family involvement and the Northwestern Medicine Aphasia Program at Marianjoy Rehabilitation Hospital led to significant functional gains and renewed independence.

BrainStorm wants to hear from you! Send us a text.This episode of BrainStorm, by UsAgainstAlzheimer's, features host Meryl Comer interviewing Leah Fisher, a psychotherapist and author who took a bold year-long solo travel sabbatical at age 60 to explore different cultures while maintaining her marriage. The conversation takes a poignant turn as Fisher reveals that after the events in her book, she received an MCI (Mild Cognitive Impairment) diagnosis with elevated Alzheimer's risk. She candidly shares her journey of recognizing early symptoms like misplacing car keys and developing aphasia, the validation that came with diagnosis, and her current experience living with uncertainty about disease progression. Fisher offers insights on how couples cope with health diagnoses, the importance of curiosity over avoidance, and her desire to be treated with patience, kindness, and continued love as she faces an uncertain future. This conversation is essential listening for family members, caregivers, and anyone navigating aging and brain health. Produced by Susan QuirkSupport the show

In this episode, the Slow Road to Better crew talks about the personal impact of stress and depression combined with aphasia. Dr. Jacqueline Laures-Gore (also known to the crew as Dr. J) gives suggestions about possible ways to manage stress and depression as well as an update on what the research tells us.

Debra Meyerson and the “Slow Fall Off a Cliff”: Aphasia After Stroke, Identity, and What Recovery Really Means There are stroke stories that arrive like lightning. And then there are the ones that feel like a quiet, terrifying slide hour by hour until you wake up and everything is different. For Debra Meyerson (also known as Deborah), that difference had a name: “the slow fall off a cliff.” Her husband Steve describes watching the change unfold overnight in the hospital, neurological tests every hour, skills fading, the unknown getting heavier with each check-in. And the scariest part? Not knowing where the bottom was. This episode isn't only about what Debra lost. It's about what she rebuilt with aphasia, with grief, with a fierce independence that made asking for help its own mountain, and with a new definition of recovery that doesn't depend on going back in time. When Stroke Doesn't “Hit”… It Develops One of the most jarring elements of Debra's experience was the way the stroke revealed itself. Steve shares that Debra left the emergency room still talking, slurring a little, but still planning. Still believing she'd be back teaching soon. Then the overnight monitoring began, and the decline became visible. From midnight to morning, her movement and speech changed dramatically. By morning, she couldn't move her right side. And she couldn't make a sound. That's what makes Debra's phrase so powerful: it captures the reality many survivors and families live through, watching ability disappear in stages, not all at once. It's not just a medical event. It's an emotional one. And it changes how you experience time. The mind starts bargaining. The heart starts bracing. The body is suddenly not predictable anymore. The Hidden Clue: Dissection, Headaches, and Near-Misses Debra's stroke was ischemic, but the cause wasn't a typical blood clot. Steve explains that it was due to a dissection, a tear in the inner wall of an artery. In the months leading up to the stroke, there were warning signs: severe headaches episodes where she nearly lost consciousness a moment where she told their son, “I think I'm having a stroke,” but the symptoms resolved before EMS arrived Steve describes a likely “opening and closing” pattern of temporary interruptions to blood flow that didn't show up clearly during exams because, in the moment, she appeared okay. This is one reason caregivers can feel so haunted after the fact: you did the right things, you sought help, you went to specialists… and the stroke still happened. That's not failure. That's reality. 20230922-GSE headshots at CERAS building in Stanford, CA Aphasia After Stroke: When Words Don't Do What You Want Aphasia isn't one experience. It's a spectrum, and Debra's challenge is word-finding, both in speaking and writing. When Bill asks whether writing is easier than speaking, Debra's answer is simple and blunt: it's hard either way. She also notes that dictation isn't a shortcut. What makes Debra's story especially moving is how Steve describes the long arc of speech returning: weeks before she could even form sounds a month or two before repeating words then, months later, the first original word that made it out unprompted, not as an exercise It happened during a normal moment at a table with family, searching for the name of the pig from a movie no one could remember. And Debra suddenly blurted out: “Babe.” It might sound small to someone who's never experienced aphasia. But for anyone who has, or for anyone who's loved someone through it, that moment is enormous. It's proof that the brain is still reaching for language. Proof that the person is still in there, still trying to connect. And yes, Steve mentions melodic intonation therapy, a method that attempts to engage the brain's musical/singing pathways to support speech. Debra's improvement, even years later, is described as gradual marginal gains that add up over time. The Identity Problem Nobody Prepares You For When Bill asks what part of her old identity was hardest to let go, Debra points to the heart of it: Stanford professor athlete fiercely independent skiing (a love that mattered deeply) the ability to do life without needing so much help This is the part many survivors don't see coming: you're not only recovering movement or speech. You're grieving a version of yourself that once felt automatic. And that grief can be complicated, because you might still look like you. Inside, everything is renegotiated. This is where Debra and Steve offer something that can change the trajectory of recovery: adaptation instead of abandonment. Debra couldn't ride a single bike anymore, but they began riding a tandem, and it became the thing they could do together vigorously, something athletic, meaningful, and shared. Not the same. But real. Cycles of Grief: Joy Can Trigger Loss Debra describes grief as something that shows up constantly, “every day… every hour.” Steve offers a powerful example: becoming grandparents. Debra was ecstatic. Over the moon. And then, the next morning, she was furious, spring-loaded into a bad mood, snapping at everything. Why? Because beneath the joy was a private inventory of what she couldn't do: hold the baby safely change a diaper be alone with their grandson the way she wanted to be chase a toddler the way she imagined This is what “cycles of grief” looks like. Not sadness replacing joy. Sadness sitting next to joy. And if survivors don't understand that's normal, they can interpret it as brokenness or failure. It's not. It's grief doing what grief does: reminding you of what mattered. The Care Partner Trap: Guilt, Burnout, and the “Fix It” Reflex Care partners often disappear inside the role. Steve names a different approach, one supported early by friends who told him plainly: if you don't take care of yourself, you're no use to Deb. So he set priorities: exercise eating well sleeping well He also acknowledges how support made that possible: family help, flexible work, and friends showing up. Then comes a line that many couples will recognize immediately: toxic positivity. Steve admits he struggles with sadness; he tends to solve problems, cheer people up, and push toward the bright side. But Debra doesn't always want to be talked out of it. Sometimes she needs space to grieve without being “fixed.” That's the lesson: Support isn't always uplifting someone. Sometimes support is staying present while they feel what they feel. “True Recovery Is Creating a Life of Meaning” Debra's philosophy shows up in the opening of her book and in the arc of this conversation: “True recovery is creating a life of meaning.” At first, recovery was about returning to who she used to be, therapy, effort, pushing hard. Then something shifted: writing a book became a turning point. It helped her stop using her old identity as the measuring stick and start asking a new question: “How do I rebuild a life I can feel good about with the cards I've been dealt?” That idea is the bridge for so many survivors: You don't have to pretend you're fine. You don't have to deny what you lost. But you also don't have to wait for a full return to start living again. Debra Meyerson: Aphasia After Stroke Interview Debra Meyerson's “slow fall off a cliff” stroke led to aphasia, grief, and a new definition of recovery: rebuilding identity with meaning. Stroke Onward: InstagramX.COMFacebookLinkedInYouTubeTikTokVimeo Debra Meyerson X.COMLinkedInFacebookInstagramSteve:LinkedIn Highlights: 00:00 Introduction and Background06:11 The Experience of a Stroke: A Slow Fall Off a Cliff22:45 Navigating Caregiving: Balancing Needs and Support32:01 Understanding Aphasia: A Spectrum of Experiences43:05 The Importance of Sadness in Healing50:08 Finding Purpose Through Advocacy53:31 Building the Stroke Onward Foundation57:12 Advice for New Stroke Survivors Transcript: Introduction and Background –  Steve Zuckerman and Debra Meyerson Bill Gasiamis (00:00)Welcome to the recovery after stroke podcast. name is Bill. And if you’re a stroke survivor or you love someone who is you’re in the right place before we begin a genuine thank you to my Patreon supporters. After more than 10 years of hosting this show solo, your support helps cover the costs of keeping it online and helps me keep showing up for stroke survivors who need hope and direction. And thank you to everyone who supports the show in the simple ways to YouTube comments, Spotify, Apple reviews. people who’ve grabbed my book, and even those who stick around and don’t skip the ads. It all matters more than you know. Today you’re going to meet Deborah Meyerson and her husband, Steve Zuckerman. Deborah describes her stroke as a slow fall off a cliff. And that phrase captures something so many stroke survivors experience but struggle to explain. We talk about aphasia after stroke, word finding. The moment a single word returned and what happens when recovery stops meaning going back and starts meaning rebuilding a life you can actually feel proud of. Deborah and Steve Myerson. Welcome to the podcast. Debra and Steve (01:08)Steve Zuckerman That’s okay. I don’t mind being Mr. Meyerson from time to time. Bill Gasiamis (01:17)Steve Zuckerman, of course. I mean, I’ve seen it on every email. I’ve seen it on every conversation we’ve had, but that’s okay. I mean, you’ve probably been called worst, Steve. Debra and Steve (01:29)Absolutely, much worse. Bill Gasiamis (01:32)Debra, before the stroke, how would you have described yourself professionally, socially and personally? Debra and Steve (01:39)Outgoing, social, comfortable, no time to to to other’s time. Not taking up other people’s time? Yes. In contrast to me. Bill Gasiamis (01:59)Yes, David, you’re very needy. Debra and Steve (02:02)Yeah, and ⁓ yeah, it’s really outgoing. Bill Gasiamis (02:09)Outgoing, yeah, fantastic. Debra and Steve (02:11)I’ll add, because you didn’t say it, a incredibly hardworking, self-demanding professional for whom good was never good enough. Yeah. Yeah. Yeah. Something like that. Bill Gasiamis (02:23)perfectionist. Fair enough Steve. What roles defined you back then? you’re a partner, you’re a father. How did you go about your day? Debra and Steve (02:37)I mean, I think, you know, very similar to Deb, we were both hard driving professionals who had serious careers. We had three kids that we were raising together and both took parenting very seriously. So worked really hard, you know, to not travel at the same time, to be home for dinner, ⁓ to be at sports games. And we were both very athletic. So both things we did together and things we did separately. I think, you know, before Deb’s stroke, most of our time and attention was focused on career and family and, you know, sort of friends were a third, but, ⁓ staying healthy and staying fit. So those were kind of all parts of, I think, who we both were. met mother, ⁓ athletic sailor, biker, ⁓ ⁓ family is first in academics. Bill Gasiamis (03:44)and academic and what field were you guys working in? Debra and Steve (03:48)No, am a, Steve is not academic. I am an academic. ⁓ Deb was, you know, immediately before the stroke. Deb was a tenured professor at Stanford. She had had lots of other academic jobs before that. ⁓ We met when I was in grad school for an MBA and Deb was getting her PhD. ⁓ So, you know, she is lot smarter than I am and was willing to work a lot harder academically than I ever was. ⁓ I’ve bounced back and forth between kind of nonprofit roles, nonprofit management roles, and a career in finance and business. So I sort of… have moved back and forth between for-profit and not-for-profit, but always sort of on the business side of things. Bill Gasiamis (04:50)often say when people meet my wife, Christine, for the first time and we talk about what we do and the things that we say. I always say to people that between me and my wife, we have four degrees. And then I qualify that. say, she has four and I have zero. And ⁓ she has a master’s in psychology, but ⁓ I never went to university. I never did any of that stuff. Debra and Steve (05:10)Yeah. Bill Gasiamis (05:19)So it’s very interesting to meet somebody who’s very academic and to be a part of her life when she’s in the study zone. my gosh, like I have never studied that much, that intensely, that hard for anything. And it’s a sight to behold. And I’m not sure how people go through all the academic side, all the requirements. And then also Deb, being a mom, being a friend. being active in your community and doing all the things that you do. I just don’t know how people fit it in. So it’s a fascinating thing to experience and then to observe other people go through. Debra and Steve (05:57)It’s really that we had really a lot of time to talk. It was a full life. Debra Meyerson – The Experience of a Stroke: A Slow Fall Off a Cliff Bill Gasiamis (06:11)Yeah, fantastic. What you did, Deb has described the ⁓ stroke as a slow fall off a cliff. What did it actually feel like in the first moments that the stroke happened? Debra and Steve (06:28)Two weeks after my stroke, I am going to the, back to the classroom. I am really not aware of the damage. So right at the outset, Deb was kind of in denial. As the symptoms were first starting to set in, she was still talking about you know, okay, this is annoying, but in three weeks I’m starting the semester ⁓ and genuinely believed she would. actually the slow fall off a cliff was really how I described the first full night in the hospital. This was in Reno, Nevada. ⁓ And Deb sort of left the emergency room talking. slurring her words a little bit, but talking about how she was going to be back in the classroom. And then over the course of that night, from midnight to eight in the morning, they woke her every hour to do a neurological test, you move your arm, move your leg, point to this, you know, say this word and just her skills got worse and worse and worse. And in the morning, She couldn’t move her right side at all and couldn’t make a sound. And that was the, that’s what we called the slow fall off the cliff because we knew at midnight that there was significant brain damage, but we didn’t see the ramifications of that damage. sort of happened over that eight hour period. ⁓ that Deb really wasn’t aware of any of that. was. you know, kind of her brain was in survival mode. ⁓ But for myself and our oldest son, Danny, you know, that was sort of a feeling of helplessness. was watching the person you love kind of fade away or the capabilities fade away. And we didn’t know how low the bottom would be ⁓ without being able to do anything. Bill Gasiamis (08:53)Is there an explanation for that? Now, obviously Deb had a stroke, so that’s the overarching issue, the problem. But I’ve had a lot of stroke survivors explain their symptoms in that slow onset ⁓ situation, whereas mine were just there. I had a blade in my brain, the symptoms were there. Another person ⁓ had an ischemic stroke, bang, the symptoms were there. So why does it take so long for some people to, for the symptoms to develop? Debra and Steve (09:25)I had a dissection five months ago for this stroke. I had really bad headaches. Yeah, so five, six months before Deb’s stroke, she was having bad headaches. She had two episodes where she kind of almost lost consciousness. And one of them, she actually said to our son, call dad, I think I’m having a stroke. And by the time the EMS got there, she was fine. ⁓ Her stroke, it turned out was caused by a dissection, which is a tear. in the inner wall of the artery. So in some ways it’s like a blood clot. It is an ischemic stroke because it’s the blockage of blood flow. But unlike most ischemic strokes, it’s not because of a blood clot. It’s because of this flap of, it’s not biologically skin, but it’s like a flap of skin coming across and blocking off the blood flow. And what they think happened, and it’s really just educated guessing, is that for that six month period, the flap was there, but it kind of kept opening, closing, opening, closing. So she’d have temporary loss of blood flow to the brain, but not permanent loss. Bill Gasiamis (11:04)We’ll be back with more of Deborah Meyers’ remarkable story in just a moment, but I wanna pause here because what Deborah and Steve are describing is something a lot of us live with quietly. That feeling, you can be having a good moment and then grief shows up out of nowhere, or you’re working so hard to stay positive and it starts to feel like pressure instead of support. In the second half, we’ll go deeper into the cycles of grief. the trap of toxic positivity and the shift that changed everything for Deborah when she stopped measuring recovery by who she used to be and started rebuilding identity with meaning. If this podcast has helped you feel less alone, you can support it by sharing this episode with one person who needs it, leaving a comment or subscribing wherever you’re watching or listening. All right, back to Deborah and Steve. Debra and Steve (11:58)And when she had those two events, it was probably stayed closed a little bit longer, but then opened up. But she had a scan, she went to neurologists and because every time she was examined, it was okay. They didn’t find the problem. And then when she had the stroke, it was a permanent blockage that just didn’t open back up again. And Your question is a great one that I’ve never asked. I don’t know why, because what they told us was we can see the damage to the brain. The brain has been damaged. They can tell that on the scan, but that the impact of that damage, how it will affect your motion and your speech will play out over time. And I don’t know why that was true for Deb, whereas, as you say, for some people, it seems like the impact is immediate. And that’s a, that’s a good one. I’m going to, I’m going to Try to research that a little bit. Bill Gasiamis (12:58)That’s just a curious thing, isn’t it? to sort of understand the difference between one and the other. I’m not sure whether if we find out what the difference is, whether there’s say something that a stroke survivor listening can do or a caregiver can do in that situation, like what can be done? How can it be resolved? Maybe different steps that we need to take. I don’t know, but I’d love to know if there was a doctor or a neurologist or somebody who might be able to answer that. Maybe we need to find someone. Debra and Steve (13:29)The doctor and the neurologist didn’t see it. Yeah, in the period before the stroke, they didn’t see it. While we were in the hospital when the stroke was happening, what they told us was at that point, there really wasn’t anything that could be done. The damage was done. So no intervention. would lessen the damage. ⁓ again, we are far from doctors. So there’s a lot about that that we don’t know. Bill Gasiamis (14:08)understood. Deb, what part of your old identity was the hardest to let go? Debra and Steve (14:14)The Stanford professor, athlete, had really a lot of… One hand is so difficult and independent person. Bill Gasiamis (14:33)Yeah. Debra and Steve (14:34)I am, skiing is so, I really love to ski and I am not, I am really not able to ski. Bill Gasiamis (14:52)understood so you were a professor, you were independent, you were physically active and all that stuff has had to stop happening at this point in time. Debra and Steve (15:03)I am the…striking…crossing…cycling…we are the…the…Sieve and I… Bill Gasiamis (15:19)You guys used to do something tandem. Debra and Steve (15:21)Yes, a lot of time in the stroke across America. Well, so I think we’re sort of answering a couple of different questions at the same time. I think what Deb was saying was early on, kind of in that first three or four years, she really, you know, was giving up her role as a Stanford professor, giving up skiing, cycling, sailing, and just the… not being a fully independent person needing so much help. That was really a lot of the struggle early on. Deb did return to a lot of those things. And that was a big part of the recovery process was realizing that she may not be able to do them the same way she used to, but there were a lot of different things. And then the cycling, Deb can’t ride a single bike, but we started riding a tandem. And that adaptation has proven really important for us because it’s, it’s the thing we can now do together vigorously for long periods of time. That is really a, a sport that we can do together, ⁓ and love. And so that that’s really been a, an adaptive way to get back to something, not exactly the same way as she used to do it before the stroke, but in a way that is very meaningful. Bill Gasiamis (16:46)A lot of stroke survivors tend to have trouble with letting go of their old identity in that they feel like they need to completely pause it and put the whole identity aside rather than adapt it and change it so that you bring over the parts that you can and you make the most of them, know. And adaptive sport is the perfect way. You see a lot of people in the Paralympics becoming gold medalists after they’ve been injured. a sports person before their injury and now all of a sudden they’re champion gold medal winning athletes because they decided to adapt and find another way to participate. And that’s what I love about what you guys just said. That’s still able to meet the needs of that identity, but in a slightly different way. What about you, Steve? Like when Deb goes through a difficult time and she has a stroke and then you guys come home from hospital, you’re dealing with, ⁓ well, all the changes in your life as well because you become a care, while you guys describe it as a care partner, we’ll talk about that in a moment. But as a care partner, ⁓ how do you go about doing that without, and also at the same time, protecting a little bit of your needs and making sure that your needs are met? Because a lot of caregivers, care partners, put all their needs aside and then they make it about the person who is ⁓ recovering from stroke. And then it leads to two people becoming unwell in different ways. One potentially emotionally, mentally, and the other person physically and all the other things that stroke does. Debra and Steve (18:36)Yeah, I mean, I think, um, Kyle was lucky in a couple of ways. One, a very close friend very early on who had been through similar situations said, you know, don’t forget, you’ve got to take care of yourself. If you don’t, you’re of no use to Deb. And so from the very beginning, I had people reminding me. I also had a ton of support in supporting Deb. Deb’s mom, you know, came up and lived with us for six months. ⁓ So I could go back to work a lot sooner than I otherwise would have been able to go back to work. And I was fortunate that my job was fairly flexible. ⁓ But, you know, I loved my work and it meant I wasn’t focused on the caregiving or care partnering aspects of my role 24 seven. I got to go do something else independently. ⁓ We also had a lot of friends lend support as well. So, you know, I think I basically said, I’ve got to organize around supporting Deb, no question about it. But with guidance from friends, I sort of said, okay, my three priorities are going to be exercising, eating well, and sleeping well. And I really just set those out as my goals and I created ways to do that. wall and that was sort of my physical health but also my mental health. And so, you know, sort of a problem solver and compartmentalizer by nature. So I guess maybe I was lucky that dividing up those roles was a little more natural to me than maybe it is for others. But it also took, you know, took deliberate choice to make sure not to let myself get sucked so far into the caring piece. that I got in healthy and was lucky enough to have support so that I was able to not let that happen. Bill Gasiamis (20:42)Yeah, a lot of people feel guilt like this unnecessary guilt that, I can’t leave that person alone or I can’t ⁓ look after myself or take some time to myself because the other person needs me more than I need me. And that’s an interesting thing to experience people talk about in the caregiver role where they become so overwhelmed with the need to help support the other person that they… ⁓ that they have guilt any time that they step away and allocate some care to themselves. They see caring as a role that they play, not as a thing that they also need to practice. Debra and Steve (21:29)Yeah, yeah. Well, I think I was also lucky because Deb is so fiercely independent that she wanted as little help as she could possibly get away with. So ⁓ she was not the kind of stroke survivor that was sort of getting mad when I walked out of the room. It was like she was trying to kick me out of the room at times that I shouldn’t leave the room. And so, you know, again, ⁓ Deb was not a demanding, again, she just wanted as little help as she could possibly survive with. And that probably made it easier for me to not feel guilty because it’s like, well, that’s what she wants. She wants me to get out of here as long as she was safe. Navigating Caregiving: Balancing Needs and Support Bill Gasiamis (22:16)That mindset is a really useful one. It makes it possible for people to activate neural plasticity in the most ⁓ positive way. Because some people don’t realize that when it’s hard to do something and then the easier thing is to say, Steve, can you go get me that or can you do this for me? That neural plasticity is also activated, but in a negative way. ⁓ How does your recovery or your definition of recovery evolve over time? How did it change over time? Debra and Steve (22:57)⁓ How did how you think about recovery change over time? The realizing I had to build realizing I had the of my identity and my life. The same past and writing a book. ⁓ Three, four years ago, four years after my stroke, really, well, ⁓ I am really, I am so committed to doing the best. No. I mean, you know, the first three or four years after Deb’s stroke, it really was all about trying to get back to who she used to be. Therapy, therapy, therapy, therapy, therapy, work hard, we’ll get back to life as we do it. And when Deb said, when she lost tenure and said she wanted to write a book, I thought she was nuts. was like, you know, her speech wasn’t as good then as it is now. you I was at her side when she wrote her first academic book and that was brutal and she didn’t have aphasia. So I was like, I really thought she was nuts. But in hindsight, it really was that process of writing a book that got her to turn her knowledge about identity onto herself. that really changed her view of what recovery meant. She sort of started to let go of recovery means getting back to everything I used to be doing and recovery means how do I rebuild an identity that I can feel good about? May not be the one I’d ideally want, but in the face of my disabilities, how do I rebuild that identity so that I can rebuild a good and purposeful and meaningful life? that really was an evolution for both of us. over the five-year book writing period. I sometimes say it was the longest, cheapest therapy session we could have gotten because it really was that kind of therapeutic journey for us. And really a lot of the 25 people are in the book and the friends and colleagues are in the book, really a lot of the colleagues. Deb was a social scientist and a researcher and she didn’t want to write a memoir. She wanted to write a research book. It has elements of a memoir because her story and our story is threaded throughout. But, you know, we learned so much from the interviews Deb did and and I was not involved in the interviewing process, but having that diversity of stories and understanding some of the things that were very common for stroke survivors and other things that were so different from survivor to survivor helped her, helped us on our journey. So that book writing process had so many benefits. Bill Gasiamis (26:49)Very therapeutic, isn’t it? I went on a similar journey with my book when I wrote it and it was about, again, sharing other people’s stories, a little bit about mine, but sharing what we had in common, know, how did we all kind of work down this path of being able to say later on that stroke was the best thing that happened. Clearly not from a health perspective or from a ⁓ life, ⁓ you know. the risk of life perspective, from a growth perspective, from this ability to be able to ⁓ look at the situation and try and work out like, is there any silver linings? What are the silver linings? And I get a sense that you guys are, your idea of the book was in a similar nature. Do you guys happen to have a copy of the book there? Debra and Steve (27:39)Yes. Of course. Don’t we have it everywhere? Bill Gasiamis (27:42)Yeah, I hope so. Identity theft, yep. I’ve got my copy here somewhere as well. Now, how come I didn’t bring it to the desk? One second, let me bring mine. Yes. There you go, there’s mine as well. I’ve got it here as well. So it’s a really lovely book. ⁓ Hard copy. ⁓ Debra and Steve (27:52)Yeah. You must have the first edition not the second edition. Because we didn’t print the second edition in hard copy so it’s not a white cover can’t tell in the photo. Bill Gasiamis (28:07)okay, that’s why. That is a blue cover. Debra and Steve (28:17)⁓ No, the paper cover on the front. Bill Gasiamis (28:20)The paper cover is a white cover. Debra and Steve (28:22)Yeah. So that’s actually the first edition of the book that came out in 2019. And then the second edition just came out about two months ago. ⁓ And they are largely the same. But the second edition has a new preface that sort of, because we wrote that in 2019 and then had five years of working on Stroke Onward and learning more, we kind of brought our story up to 2020. 2024 and then two chapters at the end, one with some of the insights we’ve learned ⁓ kind of since writing the first book and a final chapter about what we think might need to change in the US healthcare system to better support stroke survivors. So we’ll have to get you a copy of the new one. Yeah. Bill Gasiamis (29:13)Yeah, why not? Signed copy, thank you very much. ⁓ Debra and Steve (29:15)Yeah, and the Julia Wieland. ⁓ It’s available on audiobook as well via, we were fortunate to be able to work with a great narrator named Julia Wieland, who’s an award winning audiobook narrator and actually has a business called Audio Brary that she started to really honor narrators and help promote the narrating of audio. the narrators of audio books. ⁓ well, make sure you send us an email with the right mailing address and we’ll get you new copy. Bill Gasiamis (29:55)Yeah, that’d be lovely. So what I’ll do also is on the show notes, there’ll be all the links for where people can buy the book, right? We won’t need to talk about that. We’ll just ensure that they’re included on the show notes. I love the opening page in the book. ⁓ It’s written, I imagine, I believe that’s Deborah’s writing. Debra and Steve (30:14)⁓ yeah, yeah. yes, we have a signed copy of the first edition. Yeah. Bill Gasiamis (30:20)So it says true recovery is creating a life of meaning. Deborah Meyerson. Yeah, you guys sent me that quite a while ago. By the time we actually connected, so much time had passed. There was a lot of people involved in getting us together. And you know, I’m a stroke survivor too. So things slipped my mind and we began this conversation to try and get together literally, I think about a year earlier. So I love that I have this. this copy and I’m looking forward to the updated one. ⁓ And it’s just great that one of the first things that Deb decided to do was write a book after all the troubles. Now your particular aphasia Deb, I’m wondering is that also, does that make it difficult for you to get words out of your head in your writing as well and typing? Debra and Steve (31:13)Yes, dictation is my dictation. It’s so hard. Speaking and writing isn’t the same. Bill Gasiamis (31:31)Speaking and writing is the same kind of level of difficulty. Understanding Aphasia: A Spectrum of Experiences Debra and Steve (31:35)Yeah, and the ⁓ other survivors in aphasia didn’t, Michael is. Want me to help? Yeah. Yeah, just that, and I think you know that there are so many different ways aphasia manifests itself and word finding is Deb’s challenge and it’s true whether she’s speaking or writing. other people and a guy who rode cross country with us, Michael Obellomiya, he has fluent aphasia. So he speaks very fluently, but sometimes the words that come out aren’t what he means them to be. So the meaning of what he says, even though he says it very fluently, and he also has, I think, some degree of receptive aphasia so that he hears what people are saying, but sometimes the instruction or the detail doesn’t. register for him and so aphasia can be very very different for different people. Bill Gasiamis (32:37)Yeah, there’s definitely a spectrum of aphasia. then sometimes I get to interview people really early on in their journey with aphasia and, ⁓ and speech is extremely difficult. And then later on, if I meet them again, a few years down the track, they have ⁓ an improvement somewhat. ⁓ perhaps there’s still some difficulty there, but they can often improve. ⁓ how much different was the Debra and Steve (33:08)15 years ago? I don’t know speech at all. Bill Gasiamis (33:23)No speech at all. Debra and Steve (33:24)Yeah. So Deb, it took several weeks for her to even be able to create sounds, maybe a month or two before she was sort of repeating words. ⁓ We have a great story of the first time Deb actually produced a word out of her brain. So it wasn’t an answer to a question or a therapy exercise. but we were sitting around a table and a bunch of people who hadn’t had strokes were saying, what’s that? No, my family. Yeah, with your brother. No, our family. Yeah. Danny and… Okay, anyway. We were talking about, what was that movie where the guy trained a pig to… do a dog show and what was the pig’s name and none of us could remember it and Deb just blurted out, babe. And it was like we started screaming and shouting because it was the first time that something that started as an original thought in her head actually got out. And that was like four months after her stroke. ⁓ A year after her stroke, it was really just isolated words. ⁓ She then did a clinical trial with something called melodic intonation, a kind of speech therapy that tries to tap into the other side of the brain, the singing side of the brain. And then I would say, you know, it’s been, mean, Deb’s speech is still getting better. So it’s just marginal improvement ⁓ over time. Bill Gasiamis (35:10)Yeah, Deb, what parts of Professor Deborah Meyerson remain and what’s entirely new now? Debra and Steve (35:19)⁓ The sharing knowledge and trading knowledge is the same. The new is how I do it. More constraints, I need help. really help and I am so bad at asking. Really bad at asking. I have really a lot of phases of classes and Ballroom classes, you know ballroom dancing. Yeah, no In the work we do Deb’s favorite thing to do is to teach so we’ve been invited, you know ⁓ Quite a few speech therapists in the United States are using identity theft as part of the curriculum in their aphasia course in the speech language pathology programs Bill Gasiamis (36:28)So speaker-2 (36:28)I’ll be. Debra and Steve (36:48)⁓ and we’ve been invited to visit and talk in classes. And Deb just loves that because it’s back to sharing knowledge. It’s a different kind of knowledge. It’s not about the work she did before her stroke, but it’s about the work and the life experience since. that is still, Professor Deb is still very much with us. Bill Gasiamis (37:14)Yeah, Professor Deb, fiercely independent, ⁓ doesn’t like to ask for help, ⁓ still prefers to kind of battle on and get things done as much as possible and suffer through the difficulty of that and then eventually ask for help. Do you kind of eventually? Debra and Steve (37:32)Yeah, yeah, you skipped the part about correcting everything her husband says. That’s not quite exactly right. Bill Gasiamis (37:40)Well, that’s part of the course there, Steve. That’s exactly how it’s meant to be. And you should be better at being more accurate with what you have to say. Debra and Steve (37:49)I thought we’d be on the same side on this one. Bill Gasiamis (37:53)Sometimes, sometimes as a host, you know, I have to pick my hero and as a husband, I truly and totally get you. Deb, you describe experiencing cycles of grief. ⁓ What does that actually look like in a day-to-day life now? And I kind of get a sense of what cycles of grief would mean, but I’d love to hear your thoughts, your version of what that means. Debra and Steve (38:22)Every day, hour every day, small ways and big ways. Like one year ago, Well, grandmothers. Can I correct you? It was 16 months ago. I’m going to get her back. Yeah. That’s what she does to me all the time. I am really happy. Make sure you explain. don’t know if they would have caught what it was that made you so happy. Grandmother. Sarah, Danny and Vivian. I know, you don’t have to tell me. Just that we became grandparents for the first time. And Deb was ecstatic. I am so happy and also really frustrated. And I don’t… crawling… no. You want me to help? I mean, you know, it’s sort of the day we got there, the day after the baby was born in New York and Deb was over the moon and the next morning… We were walking back to the hospital and Deb was just spring-loaded to the pissed off position. She was getting mad at me for everything and anything and she was clearly in an unbelievably bad mood. And when I could finally get her to say what was wrong, it was that she had been playing all night and all morning all the ways in which she couldn’t be the grandmother she wanted to be. She couldn’t hold the baby. She couldn’t change a diaper. She couldn’t, you know, spell the kids later on to give them a break by herself because she wouldn’t be able to chase no one is our grandson around. And so she had had really kind of gone into grieving about what she had lost just in the moment when she was experiencing the greatest joy in her life. And that’s an extreme example of a cycle of grief. And but it happens, as Deb was saying, it happens. every hour, maybe three times an hour where you’re doing something that’s good, but then it reminds you of how you used to do that same thing. so, you know, when we talk about and write about cycles of grief, it’s the importance of giving yourself that space to grieve because it’s human. You lost something important and it’s human to let yourself acknowledge that. But then how do you get through that and get back to the good part and not let that grief trap you? And that story from 16 months ago in New York is sort of the, that’s the poster child, but it happens in big ways and small ways every day, 10 times a day. Bill Gasiamis (42:00)Sadness is a thing that happens to people all the time and it’s about knowing how to navigate it. And I think people generally lack the tools to navigate sadness. They lack the tools to ⁓ deal with it, to know what to do with it. But I think there needs to be some kind of information put out there. Like you’re sad. Okay. So what does it mean? What can it mean? What can you do with it? How can you transform it? Is it okay to sit in it? ⁓ What have you guys learned about the need for sadness in healing? Debra and Steve (42:35)grief and sadness is so important and through the really once it’s an hour. The Importance of Sadness in Healing From my perspective, I have learned a ton about sadness because I don’t have a good relationship with sadness. In most cases, it’s a great thing. just, you know, I’m a cup is nine tenths full person all the time and I tend to see the positive and that’s often very good. But it makes it really hard for me to live with other people’s sadness without trying to solve the problem. Bill Gasiamis (43:12)Hmm. Debra and Steve (43:35)And we actually came up with a phrase because sometimes if I get positive when Deb is sad, it just pisses her off. She doesn’t want to be talked out of it. And so we now talk about that dynamic as toxic positivity because, you know, most people think of positivity as such a positive thing. And yet If someone needs to just live in sadness for a little while, positivity can be really toxic. And I think that’s been my greatest learning, maybe growth is sort of understanding that better. I still fall into the trap all the time. devil tell you there are way too many times when, you know, my attempts to cheer her up are not welcomed. but at least I’m aware of it now. ⁓ And a little less likely to go there quite as quickly. Bill Gasiamis (44:38)Hmm. What I, what I noticed when people were coming to see me is that it was about them. They would come to see me about them. It wasn’t about me and what they made them do. What made what their instinct was, was to, if I felt better, they felt better and all they wanted to do was feel better and not be uncomfortable and not be struggling in their own ⁓ mind about what it’s like. to visit Bill who’s unwell. And that was the interesting part. It’s like, no, no, I am feeling unwell. I am going to remain feeling unwell. And your problem with it is your problem with it. You need to deal with how you feel about me feeling unwell. And I appreciate the empathy, the sympathy, the care I do. But actually, when you visit me, it shouldn’t be about you. It shouldn’t be, I’m gonna go and visit Bill. and I hope he’s well because I don’t want to experience him being unwell. It should be about you’re just gonna go visit Bill however you find him, whatever state he’s in, whatever condition he’s in, and therefore ⁓ that I think creates an opportunity for growth and that person needs to consider how they need to grow to adapt to this new relationship that they have with Bill. ⁓ which is based now around Bill’s challenges, Bill’s problems, Bill’s surgery, Bill’s pos- the possibility that Bill won’t be around in a few months or whatever. Do you know what I mean? So it’s like, ⁓ all, all the, ⁓ the well-meaning part of it is well received, but then it’s about everyone has a, has to step up and experience growth in this new relationship that we have. And some people are not willing to do it and then they don’t come at all. They’re the people who I find other most interesting and maybe ⁓ the most follow their instincts better than everybody where they might go, well, I’m going to go and say, Bill, he’s all messed up. ⁓ I don’t know how I’m going to deal with that. can’t cope with that. And rather than going there and being a party pooper or not knowing what to say or saying the wrong thing, maybe I won’t go at all. And they kind of create space. Debra and Steve (46:58)So. Bill Gasiamis (47:01)for your recovery to happen without you having to experience their version of it. Debra and Steve (47:09)Yeah, that’s it. That’s really interesting to hear you talk about it that way. And I would say very generous to hear you talk about it that way, because most of the time when we’ve heard people talk about it’s that because people talk about the fact that because other people don’t know what to say, they don’t say anything or they don’t come. But that then creates an isolation that’s unwanted. You’re talking about it as a, maybe that’s a good thing. They’re giving me space, given their skill or willingness to deal with it. Whereas I think a lot of people feel that when people just disappear because they don’t know what to say, that’s a lack of caring and a lack of engagement. ⁓ interesting to hear your take on it. think there’s a close cousin to this that Deb felt very intensely is that some people in the attempt to be understanding and supportive really took on an air of pity. And that there were some people that that we had to ask not to come if they couldn’t change how they were relating to Deb because it was such a like, ⁓ you poor thing that was incredibly disempowering. Whereas there were other people who had the skill to be empathetic in a supportive way. And so, I mean, in some ways, I think we’ve learned a lot, not that we necessarily do it right all the time, but we’ve learned a lot about how to try to support other people by what has and hasn’t worked in supporting us. Bill Gasiamis (49:20)Yeah, it’s a deeply interesting conversation because people get offended when they need people the most that don’t turn up. And I, and I understand that part of it as well. And then in, in time, ⁓ I was, I was like that at the beginning, but then in time, I kind of realized that, okay, this is actually not about me. It’s about them. They’re the ones struggling with my condition. They don’t know how to be. And maybe it’s okay for them. not to be around me because I wouldn’t be able to deal with their energy anyway. ⁓ yeah. So Deb, what made you turn to advocacy? What made you decide that you’re gonna be an advocate in this space? Finding Purpose Through Advocacy Debra and Steve (50:08)⁓ Feeling purpose and meaning. Survivors? Yes. And caregivers? Yes. Really a lot of risky is really… ⁓ medical, medical. Yeah. I mean, I I, I know what Deb is trying to say, which is, you know, once she got past the life threatening part and kind of on her way and was relatively independent, she was drawn back to saying, I want to live a life that has meaning and purpose. And so how in this new state, can I do that? And Deb, as I’m sure you know by now, doesn’t think small, she thinks big. And so what she’s saying is, yes, I want to help other people, other survivors, other care partners, but really we need a better system. Like I can only help so many people by myself, but if we can actually advocate for a better healthcare system in the United States that treats stroke differently. then maybe we can make a difference for a lot of people. that’s kind of the journey we’re on now. the survivors and caregivers, advocacy is so important to California or even the state. Building the Stroke Onward Foundation Bill Gasiamis (52:05)Yeah, advocacy is very important ⁓ and I love that I Love that you become an advocate and then you find your purpose and your meaning you don’t set out to Find your purpose and your meaning and then think what should I do to find my purpose of my meaning it tends to catch Catch go around the other way. I’m gonna go and help other people and then all of a sudden it’s like, ⁓ this is really meaningful I’m enjoying doing this and raising awareness about that condition that we’ve experienced and the challenges that we are facing. And wow, why don’t we make a change on a as big a scale as possible? Why don’t we try to influence the system to take a different approach because it’s maybe missing something that we see because we’re in a different, we have a different perspective than the people who are providing the healthcare, even though they’ve got a very big kind of, you know, their purpose is to help people as well. their perspective comes from a different angle and lived experience, I think is tremendously important and ⁓ missed and it’s a big missed opportunity if ⁓ lived experience is not part of that defining of how to offer services to people experiencing or recovering a stroke or how to support people after they’ve experienced or recovering from a stroke. ⁓ I love that. So that led you guys to develop the foundation, stroke onward. it a foundation? it a, tell us a little bit about stroke onward. Debra and Steve (53:42)In US jargon, we’d call it a nonprofit. Generally, foundations are entities that have a big endowment and give money away. We wish we had a big endowment, but we don’t. We need to find people who want to support our work and make donations to our nonprofit. And yeah, we now have a small team. ⁓ Deb and I given our age, given that we’re grandparents, we were hoping not to be 24 sevens. So needed people who were good at building nonprofits who were a little earlier in their careers. And we’ve got a small team, a CEO, a program manager and a couple of part-time people ⁓ who are running a bunch of programs. We’re trying to stay focused. We’re trying to build community with stroke survivors, care partners, medical professionals. We’ve got an online community called the Stroke Onward Community Circle that we just launched earlier this year. We’re hosting events, ⁓ some in medical settings that we call Stroke Care Onward to really talk with both ⁓ a diverse group of medical professionals, as well as survivors and care partners about what’s missing in the system and how it can be improved. ⁓ And then a program that we call the Stroke Monologues, which is sort of a a TEDx for stroke survivors where survivors, care partners, medical professionals can really tell their story of the emotional journey in recovery. And we want to use all of that to sort of build a platform to drive system change. That’s kind of what we’re trying to build with Stroke Onward. Bill Gasiamis (55:32)I love that. I love that TEDx component of it. ⁓ People actually get to talk about it and put out stories and content in that way as well. Debra and Steve (55:35)Yeah. ⁓ Yeah. Denver, Pittsburgh, ⁓ Boston, and Oakland and San Francisco. We’ve now done six shows of the stroke monologues and a big part about our work in the coming year. is really trying to think about how that might scale. can we, you know, it’s a very time consuming and therefore expensive to host events all the time. So how we can work with other organizations and leverage the idea ⁓ so that more people can get on stage and tell their story. ⁓ Also how we capture those stories on video and how we can do it virtually. So that’s a big part of what the team is thinking about is, you know, how do we Cause you know, at the end of the day, we can only do as much as we can raise the money to hire the people to do. So, that, that developing a strategy that hopefully can scale and track the resources that it takes to make more impact. That’s kind of job one for 2026. Bill Gasiamis (57:05)Yeah, I love it. Lucky you haven’t got enough jobs. That’s a good job to have though, right? ⁓ So if you were sitting, if you guys were both sitting with a couple just beginning this journey, what would you want them to know? What’s the first thing that you would want them to know? Debra Meyerson – Advice for New Stroke Survivors Debra and Steve (57:12)Yeah. Don’t have a stroke. Bill Gasiamis (57:28)Profound. Debra and Steve (57:29)Yeah. Yeah. I mean, I think, you know, it’s a journey and think of it as a journey and try to get as much as much of your capabilities back as you can. But don’t think of recovery as just that. It’s a much broader journey than that. It’s rebuilding identity. It’s finding ways to adapt. to do the things you love to do, to do the things that bring you meaning and purpose and create that journey for yourself. Nobody else’s journey is gonna be the right model for yours. So give yourself the time, space, learn from others, but learn from what’s in your heart as to the life you wanna build with the cards you’ve been dealt. Bill Gasiamis (58:25)Yeah. What are some of the practices or habits that have helped you guys as a couple, as partners stay connected? Debra and Steve (58:34)⁓ It’s, it’s hard. mean, and we’ve gone through phases, ⁓ where I think, you know, in some ways early on after the stroke, we may have been as close or closer than we’ve ever been. as Deb got better ironically and wanted to do more. Bill Gasiamis (58:39)You Debra and Steve (59:01)that created a different kind of stress for us. ⁓ stress is the key. No, stress is not the beauty. I had so much stress. Yeah. And sometimes I say stress is a function of the gap between aspiration and capability and while Deb’s capabilities keep growing, I think maybe her aspirations grow faster. And the question then says, how do you fill that gap? And so I think Deb struggles with that. And then for me, a big struggle is, so how much do I change my life to support Deb in filling that gap versus the things I might want to do that I still can do? So. You know, when Deb decided to write a book, I really wasn’t willing to give up my other nonprofit career, which was very meaningful to me. And I felt like I was midstream, but we had to find other ways in addition to my help nights and weekends to get Deb help so she could write the book she wanted to write. Whereas when the book came out and we decided to create Stroke Onward, that was a different point in time. And I was sort of willing to. cut back from that career to come build something with Deb. So I think again, we hate to give advice because everybody’s journey is different, but things change and go with that change. Don’t get locked into a view of what the balance in relationship should be. Recognize that that’s gonna be a never ending process of creating and recreating and recreating a balance that works for both of us. Bill Gasiamis (1:01:04)Hmm. What’s interesting. Some of the things that I’ve gone through with my wife is that I’ve kind of understood that she can’t be all things that I needed to be for me. And I can’t be all things that she needs me to be for her. And we need to seek that things where we lack the ability to deal to provide those things for the other person. The other person needs to find a way to accomplish those tasks needs, have those needs met, whatever with in some other way. for example, my whole thing was feeling sad and I needed someone to talk me through it and my wife wasn’t skilled enough to talk me through it, well, it would be necessary for me to seek that support from somebody else, a counselor, a coach, whomever, rather than trying to get blood out of a stone, somebody who doesn’t have the capability to support me in that way. Why would I expect that person to… all of a sudden step up while they’re doing all these other things to get through the difficult time that we were going on to that we’re dealing with. So that was kind of my learning. was like, I can’t expect my wife to be everything I need from her. There’ll be other people who can do that. Who are they? And that’s why the podcast happened because I’ve been talking about this since 2012 and since 2012 and ⁓ well, yeah, that’s 2012 as well. 2012 anyhow. ⁓ I’ve been talking about it since. Debra and Steve (1:02:41)You’re both our roles. You’re saying it and then correcting yourself. Bill Gasiamis (1:02:45)Yeah. Yeah. Yeah. I have a part of me that corrects me as I go along in life. Yeah. Sometimes I don’t listen to it. ⁓ but today was a good one. The thing about it is I have a need, a deep need to talk about it all the time. That’s why I’ve done nearly 400 episodes and those 400 episodes are therapy sessions. Every time I sit down and have a conversation with somebody and I, and even though my wife has a I, ⁓ masters in psychology. I wouldn’t put her through 400 conversations about my stroke every single day or every second day. You know, it’s not fair because it’s not her role. I, ⁓ I talked to her about the things that we can discuss that are important, for the relationship and for how we go about our business as a couple. But then there’s those other things that. she can’t offer her perspective because only stroke survivors know how to do that. And I would never want her to know how to ⁓ relate to me having had a stroke and having the deficits that I have and how it feels to be in my body. I would never want her to be able to relate to me. So ⁓ it’s, that’s kind of how I see, you know, the couple dynamic has to play out. have to just honor the things that each of us can bring to the table and then go elsewhere to ⁓ have our needs met if there’s needs that are left unmet. Debra and Steve (1:04:23)Yeah. Really. Well, it’s good to know that if this is a ⁓ helpful therapy session for you, you won’t mind if we send you a bill. Yeah. Bill Gasiamis (1:04:32)Yeah. Yeah. Send it along with the book. Just put it in the front cover and then, and then I’ll make a payment. ⁓ Well guys, it’s really lovely to meet you in person and have a conversation with you. Have the opportunity to share your mission as well. Raise awareness about the book, raise awareness about stroke onward. I love your work. ⁓ And I wish you all the best with all of your endeavors, personal, professional, not for profit. And yeah, I just love the way that this is another example of how you can respond to stroke as individuals and then also as a couple. Debra and Steve (1:05:18)Yeah, thank you. Well, and we hope you’ll join our online community and that includes the opportunity to do live events. yes. And maybe there are some additional therapy sessions. Yes. On our platform and chat with people and well, all over the place. So yeah, please join us. Bill Gasiamis (1:05:43)That sounds like a plan. Well, that’s a wrap on my conversation with Deborah and Steve. If Deborah’s slow fall off a cliff description resonated with you, leave a comment and tell me what part of your recovery has been the hardest to explain to other people. And if you’re a care partner, I’d love to hear what you needed most early on. You’ll find the links to Deborah and Steve’s work, their book, identity theft and their nonprofit stroke onward in the show notes. And if you’d like to go deeper with me, grab my book, The Unexpected Way That a Stroke Became the Best Thing That Happened via recoveryafterstroke.com/book. Also, you can support the podcast on Patreon by going to patreon.com/recoveryafterstroke. Thank you for being here. And remember, you’re not alone in this 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. 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 rehabilitator. program based on our content. you have any questions or concerns about your health or medical condition, please seek guidance from a doctor or other medical professional. If you are experiencing a health emergency or think you might be, call 000 if in Australia or your local emergency number immediately for emergency assistance or go to the nearest hospital emergency department. Medical information changes constantly. While we aim to provide current quality information in our content, we do not provide any guarantees and assume no legal liability or responsibility for the accuracy, currency or completeness of the content. If you choose to rely on any information within our content, you do so solely at your own risk. We are careful with links we provide. However, third party links from our website are followed at your own risk and we are not responsible for any information you find there.   The post Debra Meyerson and the “Slow Fall Off a Cliff”: Aphasia After Stroke, Identity, and What Recovery Really Means appeared first on 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.

When people acquire a brain injury, it can lead to difficulty with communication, including the language disorder aphasia.Hear SLPs share how they use podcasting as a tool to work with people with aphasia, helping them create, host, and produce their own ongoing shows.A panel of SLPs—including Tom Sather of the University of Wisconsin-Eau Claire, Melissa Richman of the Stroke Comeback Center in Virginia, and Bernadine Gagnon of Teachers College, Columbia University—describe the benefits they've seen from this approach. They also discuss the origins of the shows with which they've worked.Also hear from two additional guests. SLP Melissa Capo discusses project-based interventions. And Tim Carosi, a podcast host who has aphasia, discusses his show "Aphasia to Aphasia."Learn More:ASHA Voices: Benefits of Conversation in the Lives of People With AphasiaASHA Practice Portal: AphasiaUsing Project-Based Learning to Support a Middle Schooler's Aphasia RecoveryTranscript

In the final episode of our five-part series on primary progressive aphasia (PPA), Dr. Rogan Magee discusses bedside testing for PPA.  Show citations:  Show citations:  Grossman M, Seeley WW, Boxer AL, et al. Frontotemporal lobar degeneration. Nat Rev Dis Primers. 2023;9(1):40. Published 2023 Aug 10. doi:10.1038/s41572-023-00447-0  Gorno-Tempini ML, Hillis AE, Weintraub S, et al. Classification of primary progressive aphasia and its variants. Neurology. 2011;76(11):1006-1014. doi:10.1212/WNL.0b013e31821103e6 Santos-Santos MA, Rabinovici GD, Iaccarino L, et al. Rates of Amyloid Imaging Positivity in Patients With Primary Progressive Aphasia. JAMA Neurol. 2018;75(3):342-352. doi:10.1001/jamaneurol.2017.4309 Mandelli ML, Lorca-Puls DL, Lukic S, et al. Network anatomy in logopenic variant of primary progressive aphasia. Hum Brain Mapp. 2023;44(11):4390-4406. doi:10.1002/hbm.26388  Putcha D, Erkkinen M, Daffner KR. Functional Neurocircuitry of Cognition and Cognitive Syndromes. In: Silbersweig DA, Safar LT, Daffner KR. eds. Neuropsychiatry and behavioral neurology: principles and practice. McGraw Hill; 2021. Accessed November 6, 2025. https://neurology.mhmedical.com/content.aspx?bookid=3007§ionid=253215676  Montembeault M, Brambati SM, Gorno-Tempini ML, Migliaccio R. Clinical, Anatomical, and Pathological Features in the Three Variants of Primary Progressive Aphasia: A Review. Front Neurol. 2018;9:692. Published 2018 Aug 21. doi:10.3389/fneur.2018.00692 Clark DG. Frontotemporal Dementia. Continuum (Minneap Minn). 2024;30(6):1642-1672. doi:10.1212/CON.0000000000001506 

In this episode of the Brain and Life podcast, Dr. Daniel Correa is joined Emmy award-winning broadcaster Mark McEwen. Mark shares his inspiring journey of recovery after suffering a stroke at the age of 52, which led to aphasia. He discusses his broadcasting career, the challenges he faced during recovery, and the importance of hope and resilience. Dr. Correa is then joined by Dr. Rachel Forman, a stroke neurologist and Assistant Professor of Neurology at Yale School of Medicine. Dr. Forman explains stroke risk factors, the importance of awareness, community health initiatives, and access to healthcare to prevent these life-altering events.   Articles Mentioned Stamp Out Stroke Get Smart about Stroke Navigating the Complexities of Stroke   Other Brain & Life Podcast Episodes on These Topics Understanding Stroke with Dr. Laurel Cherian Solving the Stroke with Will Shortz Matt and Kanlaya Cauli on Rebuilding Life After Stroke   We want to hear from you! Have a question or want to hear a topic featured on the Brain & Life Podcast? ·       Record a voicemail at 612-928-6206 ·       Email us at BLpodcast@brainandlife.org   Social Media:   Guest: Dr. Rachel Forman @yaleneurology Hosts: Dr. Daniel Correa @neurodrcorrea; Dr. Katy Peters @KatyPetersMDPhD

In the final episode of our five-part series on primary progressive aphasia (PPA), Dr. Rogan Magee discusses bedside testing for PPA.  Show citations:  Grossman M, Seeley WW, Boxer AL, et al. Frontotemporal lobar degeneration. Nat Rev Dis Primers. 2023;9(1):40. Published 2023 Aug 10. doi:10.1038/s41572-023-00447-0  Gorno-Tempini ML, Hillis AE, Weintraub S, et al. Classification of primary progressive aphasia and its variants. Neurology. 2011;76(11):1006-1014. doi:10.1212/WNL.0b013e31821103e6 Santos-Santos MA, Rabinovici GD, Iaccarino L, et al. Rates of Amyloid Imaging Positivity in Patients With Primary Progressive Aphasia. JAMA Neurol. 2018;75(3):342-352. doi:10.1001/jamaneurol.2017.4309 Mandelli ML, Lorca-Puls DL, Lukic S, et al. Network anatomy in logopenic variant of primary progressive aphasia. Hum Brain Mapp. 2023;44(11):4390-4406. doi:10.1002/hbm.26388  Putcha D, Erkkinen M, Daffner KR. Functional Neurocircuitry of Cognition and Cognitive Syndromes. In: Silbersweig DA, Safar LT, Daffner KR. eds. Neuropsychiatry and behavioral neurology: principles and practice. McGraw Hill; 2021. Accessed November 6, 2025. https://neurology.mhmedical.com/content.aspx?bookid=3007§ionid=253215676  Montembeault M, Brambati SM, Gorno-Tempini ML, Migliaccio R. Clinical, Anatomical, and Pathological Features in the Three Variants of Primary Progressive Aphasia: A Review. Front Neurol. 2018;9:692. Published 2018 Aug 21. doi:10.3389/fneur.2018.00692 Clark DG. Frontotemporal Dementia. Continuum (Minneap Minn). 2024;30(6):1642-1672. doi:10.1212/CON.0000000000001506 

It starts with forgetting a name or a date. But Alzheimer's is so much more than memory loss.In this powerful episode, I share the five A's of Alzheimer's progression—what they are, how they affect your loved ones, and what you can do right now to protect your brain. If you have a family history of Alzheimer's, if you've been avoiding learning about Alzheimer's because it feels too scary, if you think hoping you don't get it is your only option—this episode will change your mind.I'm getting real about what actually happens in the brain as this disease progresses, and why understanding the 5 A's can empower you to take action and protect your future.What to Listen For(00:01) A vivid, gut-wrenching description of what late-stage Alzheimer's really feels like(05:45) Amy's personal journey with her mom's Alzheimer's diagnosis—and how it changed everything(10:10) The 5 A's of Alzheimer's explained: Amnesia, Anomia, Agnosia, Aphasia, Apraxia(14:15) Why short-term memory loss isn't the only symptom to watch for(17:00) The heartbreaking signs of agnosia: when your loved one forgets your face(21:30) Why someone with Alzheimer's might put keys in the freezer—and what it really means(24:45) How incontinence and mobility loss often signal the tipping point for caregiving(28:40) The stages of Alzheimer's progression—how the disease takes over the brain(32:50) Why women are at greater risk—and how menopause plays a major role(35:00) What you can do now to reduce your riskAlzheimer's isn't just about memory and finding your keys in the freezer. It's about losing your independence, your identity, and ultimately your dignity and your life. In this episode, we dive deep into what's really happening in the brain, so you can take control of your cognitive future. RESOURCES: Register for the FREE Masterclass: 5 Keys to Protecting Your Brain Health Book a FREE Discovery Call with Amy Lang Order Amy's book Thoughts Are Habits Too: Master Your Triggers, Free Yourself From Diet Culture, and Rediscover Joyful Eating. Follow Amy on Instagram @habitwhisperer

In the fourth installment of our series on primary progressive aphasia (PPA), Dr. Rogan Magee discusses semantic variant PPA.  Show citations:  Grossman M, Seeley WW, Boxer AL, et al. Frontotemporal lobar degeneration. Nat Rev Dis Primers. 2023;9(1):40. Published 2023 Aug 10. doi:10.1038/s41572-023-00447-0  Gorno-Tempini ML, Hillis AE, Weintraub S, et al. Classification of primary progressive aphasia and its variants. Neurology. 2011;76(11):1006-1014. doi:10.1212/WNL.0b013e31821103e6 Santos-Santos MA, Rabinovici GD, Iaccarino L, et al. Rates of Amyloid Imaging Positivity in Patients With Primary Progressive Aphasia. JAMA Neurol. 2018;75(3):342-352. doi:10.1001/jamaneurol.2017.4309 Mandelli ML, Lorca-Puls DL, Lukic S, et al. Network anatomy in logopenic variant of primary progressive aphasia. Hum Brain Mapp. 2023;44(11):4390-4406. doi:10.1002/hbm.26388  Putcha D, Erkkinen M, Daffner KR. Functional Neurocircuitry of Cognition and Cognitive Syndromes. In: Silbersweig DA, Safar LT, Daffner KR. eds. Neuropsychiatry and behavioral neurology: principles and practice. McGraw Hill; 2021. Accessed November 6, 2025. https://neurology.mhmedical.com/content.aspx?bookid=3007§ionid=253215676  Montembeault M, Brambati SM, Gorno-Tempini ML, Migliaccio R. Clinical, Anatomical, and Pathological Features in the Three Variants of Primary Progressive Aphasia: A Review. Front Neurol. 2018;9:692. Published 2018 Aug 21. doi:10.3389/fneur.2018.00692 Clark DG. Frontotemporal Dementia. Continuum (Minneap Minn). 2024;30(6):1642-1672. doi:10.1212/CON.0000000000001506 

In the third installment of our series on primary progressive aphasia (PPA), Dr. Rogan Magee discusses nonfluent/agrammatic PPA.  Show citations:  Grossman M, Seeley WW, Boxer AL, et al. Frontotemporal lobar degeneration. Nat Rev Dis Primers. 2023;9(1):40. Published 2023 Aug 10. doi:10.1038/s41572-023-00447-0  Gorno-Tempini ML, Hillis AE, Weintraub S, et al. Classification of primary progressive aphasia and its variants. Neurology. 2011;76(11):1006-1014. doi:10.1212/WNL.0b013e31821103e6 Santos-Santos MA, Rabinovici GD, Iaccarino L, et al. Rates of Amyloid Imaging Positivity in Patients With Primary Progressive Aphasia. JAMA Neurol. 2018;75(3):342-352. doi:10.1001/jamaneurol.2017.4309 Mandelli ML, Lorca-Puls DL, Lukic S, et al. Network anatomy in logopenic variant of primary progressive aphasia. Hum Brain Mapp. 2023;44(11):4390-4406. doi:10.1002/hbm.26388  Putcha D, Erkkinen M, Daffner KR. Functional Neurocircuitry of Cognition and Cognitive Syndromes. In: Silbersweig DA, Safar LT, Daffner KR. eds. Neuropsychiatry and behavioral neurology: principles and practice. McGraw Hill; 2021. Accessed November 6, 2025. https://neurology.mhmedical.com/content.aspx?bookid=3007§ionid=253215676  Montembeault M, Brambati SM, Gorno-Tempini ML, Migliaccio R. Clinical, Anatomical, and Pathological Features in the Three Variants of Primary Progressive Aphasia: A Review. Front Neurol. 2018;9:692. Published 2018 Aug 21. doi:10.3389/fneur.2018.00692 Clark DG. Frontotemporal Dementia. Continuum (Minneap Minn). 2024;30(6):1642-1672. doi:10.1212/CON.0000000000001506 

In this episode of "Swallow Your Pride," host Theresa Richard brings together a panel of NIH-funded researchers from the University of North Carolina at Chapel Hill to unpack the complexity of diagnosing and treating motor speech disorders after left-hemisphere stroke. Theresa Richard guides a conversation that demystifies the overlap between apraxia of speech, dysarthria, and aphasia, highlights the challenges clinicians face in acute and subacute care, and introduces innovative assessment tools designed to bring more objectivity and clarity to real-world practice. The team shares emerging findings, practical insights for SLPs across the continuum of care, and a look at how new perceptual and acoustic measures may shape the future of stroke-related speech assessment. Links mentioned in the show: UNC Center for Aphasia and Related Disorder's Lab website (includes information on our research and helpful therapy resources regarding aphasia, communication partner training, and aphasia-friendly print materials): https://www.med.unc.edu/healthsciences/sphs/card/ Tools Available for Speech Therapists for Assessment... Word Information Measure and Moving Average Type Token Ratio (Shiny App): https://unccard.shinyapps.io/WIM_MATTR/ Word Complexity Measure (Shiny App): https://unccard.shinyapps.io/shiny-woRdcomplex-2/ Word Complexity Measure Ratio (Shiny App): https://unccard.shinyapps.io/shiny-wcmRatio/ The post 385 – Navigating the Complexities of Speech Disorders After Stroke: A Deep Dive into Current Research and Practices appeared first on Swallow Your Pride Podcast.

In the second installment of our series on primary progressive aphasia (PPA), Dr. Rogan Magee discusses logopenic PPA.  Show citations:  Grossman M, Seeley WW, Boxer AL, et al. Frontotemporal lobar degeneration. Nat Rev Dis Primers. 2023;9(1):40. Published 2023 Aug 10. doi:10.1038/s41572-023-00447-0  Gorno-Tempini ML, Hillis AE, Weintraub S, et al. Classification of primary progressive aphasia and its variants. Neurology. 2011;76(11):1006-1014. doi:10.1212/WNL.0b013e31821103e6 Santos-Santos MA, Rabinovici GD, Iaccarino L, et al. Rates of Amyloid Imaging Positivity in Patients With Primary Progressive Aphasia. JAMA Neurol. 2018;75(3):342-352. doi:10.1001/jamaneurol.2017.4309 Mandelli ML, Lorca-Puls DL, Lukic S, et al. Network anatomy in logopenic variant of primary progressive aphasia. Hum Brain Mapp. 2023;44(11):4390-4406. doi:10.1002/hbm.26388  Putcha D, Erkkinen M, Daffner KR. Functional Neurocircuitry of Cognition and Cognitive Syndromes. In: Silbersweig DA, Safar LT, Daffner KR. eds. Neuropsychiatry and behavioral neurology: principles and practice. McGraw Hill; 2021. Accessed November 6, 2025. https://neurology.mhmedical.com/content.aspx?bookid=3007§ionid=253215676  Montembeault M, Brambati SM, Gorno-Tempini ML, Migliaccio R. Clinical, Anatomical, and Pathological Features in the Three Variants of Primary Progressive Aphasia: A Review. Front Neurol. 2018;9:692. Published 2018 Aug 21. doi:10.3389/fneur.2018.00692 Clark DG. Frontotemporal Dementia. Continuum (Minneap Minn). 2024;30(6):1642-1672. doi:10.1212/CON.0000000000001506 

In the first part of this series, Dr. Rogan Magee provides an introduction to primary progressive aphasia (PPA) and explains its three subtypes.  Show citations:  Grossman M, Seeley WW, Boxer AL, et al. Frontotemporal lobar degeneration. Nat Rev Dis Primers. 2023;9(1):40. Published 2023 Aug 10. doi:10.1038/s41572-023-00447-0  Gorno-Tempini ML, Hillis AE, Weintraub S, et al. Classification of primary progressive aphasia and its variants. Neurology. 2011;76(11):1006-1014. doi:10.1212/WNL.0b013e31821103e6 Santos-Santos MA, Rabinovici GD, Iaccarino L, et al. Rates of Amyloid Imaging Positivity in Patients With Primary Progressive Aphasia. JAMA Neurol. 2018;75(3):342-352. doi:10.1001/jamaneurol.2017.4309 Mandelli ML, Lorca-Puls DL, Lukic S, et al. Network anatomy in logopenic variant of primary progressive aphasia. Hum Brain Mapp. 2023;44(11):4390-4406. doi:10.1002/hbm.26388  Putcha D, Erkkinen M, Daffner KR. Functional Neurocircuitry of Cognition and Cognitive Syndromes. In: Silbersweig DA, Safar LT, Daffner KR. eds. Neuropsychiatry and behavioral neurology: principles and practice. McGraw Hill; 2021. Accessed November 6, 2025. https://neurology.mhmedical.com/content.aspx?bookid=3007§ionid=253215676  Montembeault M, Brambati SM, Gorno-Tempini ML, Migliaccio R. Clinical, Anatomical, and Pathological Features in the Three Variants of Primary Progressive Aphasia: A Review. Front Neurol. 2018;9:692. Published 2018 Aug 21. doi:10.3389/fneur.2018.00692 Clark DG. Frontotemporal Dementia. Continuum (Minneap Minn). 2024;30(6):1642-1672. doi:10.1212/CON.0000000000001506 

Lyssa Rome talks with Dr. Mackenzie Fama about the experience of inner speech for people with aphasia.

In this episode, editor in chief Joseph E. Safdieh, MD, FAAN, highlights articles about how monoclonal antibodies revolutionized neurologic treatment, why pregabalin link to increased heart failure, and a combined therapy that slows progression in primary progressive aphasia.

In this insightful episode, Alexa chats with Sami Wong, a speech and language pathologist who helps clients navigate communication challenges such as aphasia. Sami shares her personal journey into speech therapy, inspired by her late father's recovery from a stroke, and explains what aphasia really is, and the role music and singing can play in therapy. We also dive into Sami's creative side hustle—her successful Etsy shop where she sells educational anatomy prints for SLPs and voice professionals.  Whether you're a singing teacher, therapist, or simply curious about language, the brain, and communication, this episode will leave you inspired and informed.  WHAT'S IN THIS PODCAST?  2:36 What is aphasia?  5:18 What is neuroplasticity?  7:46 Can you recover from aphasia?  9:53 Compensatory communication activities for aphasia  11:10 Music & aphasia 13:46 What should singing teachers know about the work of an SLP?  15:06 Setting up a side hustle  21:07 Advice on creating an Etsy shop  23:46 Sami's gift to you  About the presenter HERE RELEVANT MENTIONS & LINKS Melodic Intonation Therapy  Singing Teachers Talk - Ep.211 Learning Vocal Anatomy through Mindful Colouring with Eimear McCarthy Luddy  GET SAMI'S PRINT WITH THIS BAST DISCOUNT CODE: BAST10  ABOUT THE GUEST Sami Wong is a speech-language pathologist based in the Pacific Northwest, specialising in augmentative and alternative communication (AAC) and helping clients build confidence, independence, and connection. She recently completed a Ph.D. in Education and Leadership, focusing on return-to-work research for individuals with communication challenges. Inspired by her father's experience with aphasia after a stroke, Sami is dedicated to advancing awareness and rehabilitation for communication disorders. Alongside her full-time role, she runs Speech+Language, a small business offering free resources, study aids, and digital prints for SLPs and care partners. With a background spanning media, fashion, finance, and education, Sami blends creativity with clinical expertise to empower others and advocate for people with aphasia.  SEE FULL BIO HERE  Website Instagram: @samiwong_ EtsyBAST Training helps singers gain the confidence, knowledge, skills & understanding required to be a successful singing teacher. "The course was everything I hoped it would be and so much more. It's an investment with so much return. I would recommend this course to any teacher wanting to up-skill, refresh or start up." Kelly Taylor, NZ ...morebasttraining.com | Subscribe | Email Us | FB Group

In this episode you will discover: Diversity Means Everyone - Race is just one piece. Consider how age, language, immigration status, religion, sexual orientation, and geography intersect to shape each person's experience with aphasia. Go Into the Community to Build Trust - Sustainable partnerships require leaving your institution and showing up consistently. Visit centers, share meals, and invest time where people gather. Trust develops gradually through authentic presence. Listen to Real-Life Struggles First - Before starting therapy protocols, hear what families actually face: shifted gender roles, children as language brokers, lack of community aphasia awareness, and disrupted family dynamics. Train Future Clinicians Differently - If you're building or revising academic programs, front-load diversity with a foundational intersectionality course in semester one, then integrate these principles across every subsequent course and clinical practicum.   If you've ever wondered how to better support multilingual families navigating aphasia, or felt uncertain about cultural considerations in your practice, this conversation will give you both the framework and the practical insights you need. Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Katie Strong, a faculty member at Central Michigan University where I lead the Strong Story Lab, and I'm a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.   I'm today's host for an episode that tackles one of the most important conversations happening in our field right now - how do we truly serve the increasingly diverse communities that need aphasia care? We're featuring Dr. Jose Centeno, whose work is reshaping how we think about equity, social justice, and what it really means to expand our diversity umbrella. Dr. Centeno isn't just talking about these issues from an ivory tower - he's in the trenches, working directly with communities and training the next generation of clinicians to do better. Before we get into the conversation, let me tell you a bit more about our guest. Dr. Jose Centeno is Professor in the Speech-Language Pathology Program at Rutgers University. What makes his work unique is how he bridges the worlds of clinical practice and research, focusing on an often overlooked intersection: what happens when stroke survivors who speak multiple languages need aphasia care?   Dr. Centeno is currently exploring a critical question - what barriers do Latinx families face when caring for loved ones with post-stroke aphasia, and what actually helps them navigate daily life? His newest initiative takes this work directly into the community, where he's training students to bring brain health activities to underserved older adults in Newark's community centers.   As an ASHA Fellow and frequent international speaker, Dr. Centeno has made it his mission to ensure that aphasia research and care truly serve diverse communities. His extensive work on professional committees reflects his commitment to making the field more inclusive and culturally responsive. So let's get into the conversation.   Katie Strong: As we get started, I love hearing about how you came into doing this work, and I know when we spoke earlier you started out studying verb usage after stroke and very impairment-based sort of way of coming about things. And now you're doing such different work with that centers around equity and minoritized populations. I was hoping you could tell our listeners about the journey and what sparked that shift for you.   Jose Centeno: That's a great question. In fact, I very often start my presentations at conferences, explaining to people, explaining to the audience, how I got to where I am right now, because I did my doctoral work focused on verb morphology, because it was very interesting. It is an area that I found very, very interesting. But then I realized that the data that I collected for my doctorate, and led to different articles, was connected to social linguistics. I took several linguistics courses in the linguistics department for my doctorate, and I needed to look at the results of my doctoral work in terms of sociolinguistic theory and cognition. And that really motivated me to look at more at discourse and how the way that we talk can have an impact on that post stroke language use. So, I kept writing my papers based on my doctoral data, and I became interested in finding out how our colleagues working with adults with aphasia that are bilingual, were digesting all this literature. I thought, wait a minute. Anyway, I'm writing about theory in verb morphology, I wonder where the gaps are. What do people need? Are people reading this type of work? And I started searching the literature, and I found very little in terms of assessing strengths and limitations of clinical work with people with aphasia.   And what I found out is that our colleagues in childhood bilingualism have been doing that work. They have been doing a lot of great work trying to find out what the needs are when you work with bilingual children in educational settings. So that research served as my foundational literature to create my work. And then I adopted that to identifying where the strengths and needs working with people by new people with aphasia were by using that type of work that worked from bilingual children. And I adapted it, and I got some money to do some pilot work at the from the former school where I was. And with that money I recruited some friends that were doing research with bilingual aphasia to help me create this survey. So that led to several papers and very interesting data.   And the turning point that I always share, and I highlight was an editorial comment that I got when I when I submitted, I think, the third or fourth paper based on the survey research that I did. The assessment research. And one of the reviewers said, “you should take a look at the public health literature more in depth to explain what's going on in terms of the needs in the bilingual population with aphasia”. So, I started looking at that and that opened up a huge area of interest.   Katie Strong: I love that.   Jose Centeno: Yeah, that's where I ended up, you know, from an editorial comment based on the studies of survey research. And that comment motivated me to see what the gaps were more in depth. And that was in 2015 when that paper came out. I kept working, and that data led to some special issues that I invited colleagues from different parts of the world to contribute. And then three years later, Rutgers invited me to apply for this position to start a diversity focused program at Rutgers, speech language pathology. At Rutgers I met a woman that has been my mentor in qualitative research. Pamela Rothpletz-Puglia is in nutrition, and she does qualitative, mixed methods research. So, her work combined with my interest in identifying where the needs were, led me to identify the needs in the work with people with aphasia through the caregivers using her methodology. And I'll come talk more about it, because it's related to a lot of different projects that I am pursuing right now.   Katie Strong: I love this. So, it sounds like, well, one you got a really positive experience from a reviewer, which is great news.   Jose Centeno: Well, it was! It's a good thing that you say that because when we submit articles, you get a mixed bag of reviews sometimes. But, this person was very encouraging. And some of the other reviews were not as encouraging, but this was very encouraging, and I was able to work on that article in such a way that got published and it has been cited quite a bit, and it's, I think it's the only one that has pretty much collected very in depth data in terms of this area.   Katie Strong: Yeah, well, it sounds like that really widened your lens in how you were viewing things and taking an approach to thinking about the information that you had obtained.   Jose Centeno: And it led to looking at the public health literature and actually meeting Pamela. In fact, I just saw her last week, and we met because we're collaborating on different projects. I always thank her because we met, when our Dean created an Equity Committee and she invited the two of us and somebody else to be to run that committee. And when Pamela and I talked, I said to her, “that qualitative work that you are doing can be adapted to my people with aphasia and their caregivers”. And that's how we collaborated, we put a grant proposal together, we got the money, and that led to the current study.   Katie Strong: I love that, which we're going to talk about in a little bit. Okay, thank you. Yeah, I love it. Okay, well, before we get into that, you know, one of the things I was hoping you could talk about are the demographics of people living with aphasia is becoming really increasingly more diverse. And I was hoping you could talk about population trends that are driving the change or challenges and opportunities that this presents for our field.   Jose Centeno: Yeah, that is actually something that I've been very interested in after looking at the public health literature because that led to looking at the literature in cardiology, nursing, social work, psychology, in terms of diversity, particularly the census data that people in public health were using to discuss what was going on in terms of the impact of population trends in healthcare. And I realized when I started looking at those numbers that and interestingly, the Census published later. The Census was published in 2020, several years after I started digging into the public health literature. The Census published this fantastic report where they the Census Bureau, discussed how population trends were going to be very critical in 2030 in the country. In 2030 two population trends are going to merge. The country gradually has been getting older and at the same time in 2030 as the country is getting older, 2030 is going to be a turning point that demographic transition, when the population is going to be more older people than younger people. So that's why those population trends are very important for us because people are getting older, there is higher incidence for vulnerabilities, health complications. And of those health complications, neurological, cardiovascular problems, stroke and also dementia.   Katie Strong: Yes. So interesting. And maybe we can link, after we finish the conversation, I'll see if I can get the link for that 2020 census report, because I think maybe some people might be interested in checking that out a little bit more.   Jose Centeno: So yeah, definitely, yeah.   Katie Strong: Well, you know, you've talked about diversity from a multilingual, bilingual perspective, but you also, in your research, the articles I've read, you talk about expanding the diversity umbrella beyond race to consider things like sexual orientation, socioeconomic background and rural populations. Can you talk to us a little bit about what made you think about diversity in this way?   Jose Centeno: Very good question, you know, because I realized that there is more to all of us than race. When we see a client, a patient, whatever term people use in healthcare and we start working with that person there is more that person brings into the clinical setting, beyond the persons being white or African American or Chinese or Latino and Latina or whatever. All those different ethnic categories, race and ethnicity. People bring their race and ethnicity into the clinical setting, but beyond that, there is age, there is sexual orientation, there is religion, there is geographic origins, whether it's rural versus urban, there is immigration status, language barriers, all of those things. So, it makes me think, and at that time when I'm thinking about this beyond race, I'm collecting the pilot data, and a lot of the pilot data that was collected from caregivers were highlighting all of those issues that beyond race, there are many other issues. And of course, you know, our colleagues in in aphasia research have touched on some of those issues, but I think there hasn't been there. There's been emphasis on those issues but separately. There hasn't been too much emphasis in looking at all of those issues overlapping for patient-centered care, you know,  bringing all those issues together and how they have an impact on that post stroke life reconfiguration. You know, when somebody is gay. Where somebody is gay, Catholic, immigrant, bilingual, you know, looking at all of those things you know. And how do we work with that? Of course, we're not experts in everything, and that leads to interprofessional collaborations, working with psychologists, social workers and so on.   So that's why my work started evolving in the direction that looks at race in a very intersectional, very interactional way to look at race interacting with all these other factors. Because for instance, I am an immigrant, but I also lived in rural and urban environments, and I have my religious and my spiritual thoughts and all of those, all of those factors I carry with me everywhere you know. So, when somebody has a stroke and has aphasia, how we can promote, facilitate recovery and work with the family in such a way that we pay attention to this ecology of factors, family person to make it all function instead of being isolated.   Katie Strong: Yeah, I love that. As you were talking, you use the term intersectionality. And you have a beautiful paper that talks about transformative intersectional Life Participation Approach for Aphasia (LPAA) intervention. And I'd love to talk about the paper, but I was hoping first you could tell us what you really mean by intersectionality in the context of aphasia care, and why is it so important to think about this framework.   Jose Centeno: Wow. It's related to looking at these factors to really work with the person with aphasia and the family, looking at all these different factors that the person with aphasia brings into the clinical setting. And these factors are part of the person's life history. It's not like these are factors that just showed up in the person's life. This person has lived like this. And all of a sudden, the person has a stroke. So there is another dimension that we need to add that there in that intersectional combined profile of a person's background. How we can for aphasia, is particularly interesting, because when you work with diverse populations, and that includes all of us. You know, because I need to highlight that sometimes people…my impression is, and I noticed this from the answers from my students, that when I asked about diversity, that they focused on minoritized populations. But in fact, all this diverse society in which we live is all of us. Diversity means all of us sharing this part, you know, sharing this world. So, this intersectionality applies to all of us, but when it comes to underrepresented groups that haven't been studied or researched, that's why I feel that it's very important to pay a lot of attention, because applying models that have been developed to work with monolingual, middle class Anglo background…it just doesn't work. You know, to apply this norm to somebody that has all of these different dimensions, it's just unfair to the person and it's something that people have to be aware of. Yeah.   Katie Strong: Yeah. And I think you know, as you're talking about that and thinking about the tenets of the Life Participation Approach, they really do support one another in thinking about people as individuals and supporting them in what their goals are and including their family. You're really thinking about this kind of energized in a way to help some clinicians who are maybe thinking, “Oh, I do, LPAA, but it's hard for me to do it in this way”. You probably are already on you road to doing this, but you really need, just need to be thinking about how, how the diversity umbrella, really, you know, impacts everybody as a clinician, as a person with a stroke, as a family member.   Jose Centeno: Yeah, and, you know, what is very interesting is that COVID was a time of transition. A lot of factors were highlighted, in terms of diversity, in terms of the infection rate and the mortality was higher in individuals from minoritized backgrounds. There were a lot of issues to look at there. But you know, what's very interesting in 2020 COVID was focusing our attention on taking care of each other, taking care of ourselves, taking care of our families. The LPAA approach turned 20 years old. And that made me think, because I was thinking of at that time of disability, and it made me think of intersectionality. And I just thought it would be very helpful for us to connect this concept of intersectionality to the LPAA, because these issues that we are experiencing right now are very related to the work we do as therapists to facilitate people with aphasia, social reconnection after a stroke and life reconfiguration. So, all of this thinking happened, motivated by COVID, because people were talking about intersectionality, all the people that were getting sick. And I just thought, wait a minute, this concept of intersectionality, LPAA turning 20 years old, let's connect those two, because my caregiver study is showing me that that intersectionality is needed in the work that we're doing with people in aphasia from underrepresented backgrounds.   Katie Strong: Yeah, I'm so glad that you shared that insight as to how you came to pulling the concepts together. And the paper is lovely, and I'll make sure that we put that in the link to the show notes as well, because I know that people will, if they haven't had the chance to take a look at it, will enjoy reading it.   Jose Centeno: And just let me add a bit more about that. Aura Kagan's paper on, I forgot where it was in [ASHA] Perspectives, or one of the journals where she talks about the LPAA turning 20 years old. [And I thought], “But wait a minute, here's the paper! Here's the paper, and that I can connect with intersectionality”. And at the same time, you know, I started reading more about your work and Jackie Hinckley's work and all the discourse work and narrative work because that's what I was doing at the time. So that's how several projects have emerged from that paper that I can share later on.   Katie Strong: I love it. I love it. Yeah, hold on! The suspense! We are there, right?   Jose Centeno: This is turning into a coffee chat without coffee!   Katie Strong: As I was reading your work, something that stood out to me was this idea of building sustainable community relationships in both research and clinical work with minoritized populations. You've been really successful in doing this. I was hoping you could discuss your experiences in this relationship building, and you also talk about this idea of cultural brokers.   Jose Centeno: Wow! You know this is all connected. It's part of my evolution, my journey. Because as I started collecting data in the community from for my caregiver study, I realized that community engagement to do this type of qualitative work, but also to bring our students into the community. It's very important to do that work, because I you know this is something that I learned because I was pretty much functioning within an academic and research environment and writing about equity and social justice and all these different areas regarding aphasia, but not connecting real life situations with the community. For example, like having the students there and me as an academician taking that hat off and going into the community, to have lunch, to have coffee with people in the community, at Community Centers. So those ideas came up from starting to talk with the caregivers, because I felt like I needed to be there more. Leave the classroom. Leave the institution. Where I was in the community it's not easy. I'm not going to say that happened overnight, because going into any community, going into any social context, requires time. People don't open their doors automatically and right away. You know you have to be there frequently. Talk about yourself, share experiences. So be a friend, be a partner, be a collaborator, be all of these things together, and this gradually evolved to what I am doing right now, which is I started the one particular connection in the community with a community center.   How did I do that? Well, I went all over the place by myself. Health fairs, churches, community centers. People were friendly, but there wasn't something happening in terms of a connection. But one person returned my email and said, “we have a senior program here. Why don't we meet and talk?” So, I went over to talk with them, and since then, I have already created a course to bring the students there. I started by going there frequently for lunch, and I feel very comfortable. It is a community center that has programs for children and adults in the community. They go there for computer classes, for after school programs for the children. The adults go there for English lessons or activities and they have games and so on. And it's very focused on individuals from the community. And the community in Newark is very diverse. Very diverse.   So that led to this fantastic relationship and partnership with the community. In fact, I feel like I'm going home there because I have lunch with them. There's hugs and kissed. It's like  seeing friends that that you've known for a long time. But that happened gradually. Trust. Trust happens gradually, and it happens in any social context. So, I said to them, “Let's start slowly. I'll bring the students first to an orientation so they get to know the center.” Then I had the opportunity to develop a course for summer. And I developed a course that involved activities in the community center and a lecture. Six weeks in the summer. So this project now that I call Brain Health a health program for older adults, is a multi-ethnic, multilingual program in which the students start by going to the center first in the spring, getting to know people there, going back there for six weeks in the summer, one morning a week, and taking a lecture related to what brain health is, and focusing that program on cognitive stimulation using reminiscence therapy. And it's done multilingually. How did that happen? Thank God at the center there are people that speak Portuguese, Spanish and English. And those people were my interpreters. They work with the students. They all got guidelines. They got the theoretical content from the lectures, and we just finished the first season that I called it. That course they ran this July, August, and the students loved it, and the community members loved it! But it was a lot of work.   Katie Strong: Yeah, of course! What a beautiful experience for everybody, and also ideas for like, how those current students who will be soon to be clinicians, thinking about how they can engage with their communities.    Jose Centeno: Right! Thank you for highlighting that, because that's exactly how I focus the course. It wasn't a clinical course, it was a prevention course, okay? And part of our professional standards is prevention of communication disorders. So, we are there doing cognitive stimulation through reminiscence activities multilingually, so we didn't leave anybody behind. And luckily, we have people that spoke those languages there that could help us translate. And my dream now the next step is to turn that Brain Health course into another course that involves people with aphasia.   Katie Strong: Oh, lovely.   Jose Centeno: Yeah, so that is being planned as we speak.   Katie Strong: I love everything about this. I love it! I know you just finished the course but I hope you have plans to write it up so that others can learn from your expertise.   Jose Centeno: Yeah, I'm already thinking about that.   Katie Strong: I don't want to put more work on you…   Jose Centeno: It's already in my attention. I might knock on your door too. We're gonna talk about that later.   Katie Strong: Let's get into the work about your caregivers and the work that you did. Why don't you tell us what that was all about.   Jose Centeno: Well, it's a study that focuses on my interest in finding out and this came from the assessment work that I did earlier when I asked clinicians working in healthcare what their areas of need were. But after meeting Pamela Rothpletz-Puglia at Rutgers, I thought, “Wait a minute, I would like to find out, from the caregivers perspective, what the challenges are, what they need, what's good, what's working, and what's not working.” And later on hopefully, with some money, some grant, I can involve people with aphasia to also ask them for their needs. So, I started with the caregivers to find out in terms of the intersectionality of social determinants of health, where the challenges were in terms of living with somebody with aphasia from a Latinx background, Latino Latina, Latinx, whatever categories or labels people use these days. So, I wanted to see what this intersectionality of social determinants of health at the individual level. Living with the person at home, what happens? You know, this person, there is a disability there, but there are other things going on at home that the literature sites as being gender, religion, and all these different things happening. But from the perspective of the caregivers. And also I wanted to find out when the person goes into the community, what happens when the person with aphasia goes into the community when the person tries to go to the post office or the bank or buy groceries, what happens? Or when the person is socializing with other members of the family and goes out to family gatherings? And also, what happens at the medical appointment, the higher level of social determinants in terms of health care? I wanted to find out individual, community and health care. The questions that I asked during these interviews were; what are the challenges?, what's good?, what's working?, what's not working?, at home?, in the community?, and when you go with your spouse or your grandfather or whoever that has a stroke into the medical setting?, and that's what the interviews were about.   I learned so much, and I learned the technique from reading your literature and reading Aura Kagen's literature and other people, Jackie Hindley literature, and also Pamela's help to how to conduct those interviews, because it's a skill that you have to learn. It happens gradually. Pamela mentored me, and I learned so much from the caregivers that opened all these areas of work to go into the community, to engage community and sustainable relationships and bring the students into the community.   I learned so much and some of the things that were raised that I am already writing the pilot data up. Hopefully that paper will be out next year. All these issues such as gender shifting, I would say gender issues, because whether is the wife or the mother that had a stroke or the father that had the stroke. Their life roles before the stroke get shifted around because person has to take over, and how the children react to that. I learned so much in terms of gender, but also in terms of how people use their religions for support and resilience. Family support. I learned about the impact of not knowing the language, and the impact of not having interpreters, and the impact of not having literature in the language to understand what aphasia is or to understand what happens after stroke in general to somebody.   And something also that was very important. There are different factors that emerge from the data is the role of language brokers, young people in college that have to put their lives on hold when mom or dad have a stroke and those two parents don't speak English well in such a way that they can manage a health care appointment. So, this college student has to give up their life or some time, to take care of mom or dad at home, because they have to go to appointments. They have to go into the community, and I had two young people, college age, talk to me about that, and that had such an impact on me, because I wasn't aware of it at all. I was aware of other issues, but not the impact on us language brokers. And in terms of cultural brokers, it is these young people, or somebody that is fluent in the language can be language brokers and cultural brokers at the same time, because in the Latinx community, the family is, is everything. It's not very different from a lot of other cultures, but telling somebody when, when somebody goes into a hospital and telling family members, or whoever was there from the family to leave the room, creates a lot of stress.   I had somebody tell me that they couldn't understand her husband when he was by himself in the appointment, and she was asked to step out, and he got frustrated. He couldn't talk. So that tension, the way that the person explained that to me is something that we regularly don't know unless we actually explore that through this type of interview. So anyway, this this kind of work has opened up so many different factors to look at to create this environment, clinical environment, with all professions, social work, psychology and whoever else we need to promote the best care for patient-centered care that we can.   Katie Strong: Yeah. It's beautiful work. And if I remember correctly, during the interviews, you were using some personal narratives or stories to be able to learn from the care partners. And I know you know, stories are certainly something you and I share a passion about. And I was just wondering if you could talk with our listeners about how stories from people with aphasia or their care partners families can help us better understand and serve diverse communities.   Jose Centeno: You know, the factors that I just went through, they are areas that we need to pay attention to that usually we don't know. Because very often, the information that we collect during the clinical intake do not consider those areas. We never talk about family dynamics. How did the stroke impact family dynamics? How does aphasia impact family dynamics? Those types of questions are important, and I'll tell you why that's important. Because when the person comes to the session with us, sometimes the language might not be the focus. They are so stressed because they cannot connect with their children as before, as prior to the stroke. In their minds, there is a there are distracted when they come into the session, because they might not want to focus on that vocabulary or sentence or picture. They want to talk about what's going on at home.   Katie Strong: Something real.   Jose Centeno: And taking some time to listen to the person to find out, “Okay, how was your day? How what's going on at home prior?” So I started thinking brainstorming, because I haven't gotten to that stage yet. Is how we can create, using this data, some kind of clinical context where there is like an ice breaker before the therapies, to find out how the person was, what happened in the last three days, before coming back to the session and then going into that and attempting to go into those issues. You know, home, the community. Because something else that I forgot to mention when I was going through the factors that were highlighted during the interviews, is the lack of awareness about aphasia in the community. And the expectations that several caregivers highlighted, the fact that people expected that problem that the difficulty with language to be something that was temporary.   Katie Strong: Yeah, not a chronic health condition.   Jose Centeno: Exactly. And, in fact, the caregivers have turned into educators, who when they go into community based on their own research, googling what aphasia is and how people in aphasia, what the struggles are. They had started educating the community and their family members, because the same thing that happens in the community can happen within the family network that are not living with this person on a day-to-day basis. So, yeah. All of this information that that you know, that has made me think on how clinically we can apply it to and also something how we can focus intervention, using the LPAA in a way that respects, that pays attention to all of these variables, or whatever variables we can or the most variables. Because we're not perfect, and there is always something missing in the intervention context, because there is so much that we have to include into it, but pay attention to the psychosocial context, based on the culture, based on the limitations, based on their life, on the disruption in the family dynamics.   Katie Strong: Yeah, yeah. It's a lot to think about.   Jose Centeno: Yeah. It's not easy. But I, you know. I think that you know these data that I collected made me think more in terms of our work, how we can go from focusing the language to being a little more psychosocially or involved. It's a skill that is not taught in these programs. My impression is that programs focus on the intervention that is very language based, and doing all this very formal intervention. It's not a formula, it's a protocol that is sometimes can be very rigid, but we have to pay attention to the fact that there are behavioral issues here that need to be addressed in order to facilitate progress.   Katie Strong: Yeah, and it just seems like it's such more. Thinking about how aphasia doesn't just impact the person who has it. And, you know, really bringing in the family into this. Okay, well, we talked about your amazing new class, but you just talked a little bit about, you know, training the new workforce. Could you highlight a few ideas about what you think, if we're training socially responsive professionals to go out and be into the workforce. I know we're coming near the end of our time together. We could probably spend a whole hour talking about this. What are some things that you might like to plant in the ears of students or clinicians or educators that are listening to the podcast?   Jose Centeno: You know this is something Katie that was part of my evolution, my growth as a clinical researcher. I thought that creating a program, and Rutgers gave us that opportunity, to be able to create a program in such a way that everybody's included in the curriculum. We created a program in which the coursework and the clinical experiences. And this happened because we started developing this room from scratch. It's not like we arrived and there was a program in place which is more difficult. I mean creating a program when you have the faculty together and you can brainstorm as to based on professional standards and ASHA's priorities and so on, how we can create a program, right? So, we started from scratch, and when I was hired as founding faculty, where the person that was the program director, we worked together, and we created the curriculum, clinically and education academically, in such a way that everybody, but everybody, was included from the first semester until the last semester. And I created a course that I teach based on the research that I've done that brings together public health intersectionality and applied to speech language pathology. So, this course that students take in the first semester, and in fact, I just gave the first lecture yesterday. We just started this semester year. So it sets the tone for the rest of the program because this course covers diversity across the board, applying it to children, adults and brings together public health, brings together linguistics, brings together sociology. All of that to understand how the intersectionality, all those different dimensions. So, the way that the I structured the course was theory, clinical principle and application theory, and then at the end we have case scenarios. So that's how I did it. And of course, you know, it was changing as the students gave me feedback and so on. But that, that is the first course, and then everybody else in their courses in acquired motor disorders, swallowing, aphasia, dementia. You know, all those courses, the adult courses I teach, but you know the people in child language and literacy. They cover diversity. Everybody covers diversity. So, in the area more relevant to our conversation here, aphasia and also dementia. In those courses, I cover social determinants of health. I expand on social determinants of health. I cover a vulnerability to stroke and dementia in underrepresented populations and so on. So going back to the question, creating a curriculum, I understand you know that not every program has the faculty or has the resources the community. But whatever we can do to acknowledge the fact that diversity is here to stay. Diversity is not going to go away. We've been diverse since the very beginning. You know, like, even if you look, if you look at any community anywhere, it's already diverse as it is. So, incorporating that content in the curriculum and try to make the connections clinically. Luckily, we were able to do that. We have a clinic director that is also focused on diversity, and we cover everything there, from gender issues, race, ethnicity, all of those, as much as we can. So, the curriculum and taking the students into the community as much as we can.   Katie Strong: Yeah, I love that. So, you're talking about front loading a course in the curriculum, where you're getting people thinking about these and then, it's supplemented and augmented in each of the courses that they're taking. But also, I'm hearing you say you can't just stay in a classroom and learn about this. You need to go out.   Jose Centeno: Exactly! It's a lot. It didn't happen overnight. A lot of this was gradual, based on students feedback. And, you know, realizing that within ourselves, we within the course, when we were teaching it, oh, I need to change this, right, to move this around, whatever. But the next step I realized is, let's go into the community.   Katie Strong: Yeah, yeah. Well how lucky those students are at Rutgers.   Jose Centeno: Thank you.   Katie Strong: Well, we're nearing the end of our time together today. Jose and I just wanted, before we wrap up, I just wanted to ask you, “what, what excites you most about where aphasia research and care could go, or what do you think might need our most attention?”   Jose Centeno: That's a great question, because I thought of it quite a bit. But I'll focus it in terms of our diverse population, where the aphasia research should be. I think my impression is that there should be more attempts to connect the theoretical aspects of language with the psychosocial aspect. In other words, and this is how I teach my aphasia class. I focus the students on the continuum of care. The person comes in after stroke. We try to understand aphasia, but we aim to promoting life reconfiguration, life readaptation, going back into the community. So, here's the person with aphasia, and this is where we're heading to facilitating functioning, effective communication in the best way we can for this person, right? So, if these are all the different models that have been proposed regarding lexicon, vocabulary and sentence production and so on. How can we connect those therapeutic approaches in a way that they are functionally usable to bring this person back? Because there is a lot of literature that I enjoy reading, but how can we bring that and translate that to intervention, particularly with people that speak other languages. Which is very difficult because there isn't a lot of literature. But at least making an attempt to recruit the students from different backgrounds, ethnic backgrounds. And this, regardless of the backgrounds, there are students studying, interested in studying other cultures. And the curriculum exposes students to ways that we that there is some literature, there is a lot but there is some literature out there to explain vocabulary sentences in other languages post stroke in people with aphasia that, you know, we can use therapeutically. I mean, this is what's been created. So, let's look at this literature and be more open-minded. It's difficult. We don't speak every language in the world, but at least try to connect through the students that speak those languages in class, or languages departments that we have on campus, how those projects can be worked on. I'm just trying to be ambitious and creative here, because there's got to be a way that we should connect those theoretical models that are pretty much English focused intervention paradigms that will facilitate social function/   Katie Strong: It's a lot a lot of work, a lot of work to be done, a lot of a lot of projects and PhD students and all of that. Amazing.   Jose Centeno: I think it's as you said, a monumental amount of work, but, but I think that there should be attempts, of course, to include some of that content in class, to encourage students attention to the fact that there is a lot of literature in aphasia that is based on English speakers, that is based on models, on monolingual middle class…whoever shows up for the research project, the participants. But those are the participants. Now, I mean those that data is not applicable to the people [who you may be treating]. So, it's a challenge, but it's something to be aware of. This is a challenge to me that, and some people have highlighted that in the aphasia literature, the fact that we need more diversity in terms of let's study other languages and let's study intervention in other populations that don't speak English.   Katie Strong: Absolutely. Well, lots of amazing food for thought, and this has been such a beautiful conversation. I so appreciate you being here today, Jose. Thank you very, very much.   Jose Centeno: Thank you, Katie. I appreciate the invitation and I hope the future is bright for this type of research and clinical work and thank you so much for this time to talk about my work.       Resources   Centeno, J. G., (2024). A call for transformative intersectional LPAA intervention for equity and social justice in ethnosocially diverse post-stroke aphasia services. Seminars in Speech and Language, 45(01): 071-083. https://doi.org/10.1055/s-0043-1777131 Centeno, J. G., & Harris, J. L. (2021). Implications of United States service evidence for growing multiethnic adult neurorehabilitation caseloads worldwide. Canadian Journal of Speech-Language Pathology and Audiology, 45(2), 77-97. Centeno, J. G., Kiran, S., & Armstrong, E. (2020). Aphasia management in growing multiethnic populations. Aphasiology, 34(11), 1314-1318.  https://doi.org/10.1080/02687038.2020.1781420 Centeno, J. G., Kiran, S., & Armstrong, E. (2020). Epilogue: harnessing the experimental and clinical resources to address service imperatives in multiethnic aphasia caseloads. Aphasiology, 34(11), 1451–1455. http://dx.doi.org/10.1080/02687038.2020.1781421 Centeno, J. G., Obler, L. K., Collins, L., Wallace, G., Fleming, V. B., & Guendouzi, J. (2023). Focusing our attention on socially-responsive professional education to serve ethnogeriatric populations with neurogenic communication disorders in the United States. American Journal of Speech-Language Pathology, 32(4), 1782–1792. https://doi.org/10.1044/2023_AJSLP-22-00325 Kagan, A. (2020). The life participation approach to aphasia: A 20-year milestone. Perspectives of the ASHA Special Interest Groups, 5(2), 370. https://doi.org/10.1044/2020_PERSP-20-00017 Vespa, J., Medina, L., & Armstrong, D. M. (2020). Demographic turning points for the United States: population projections for 2020 to 2060. Current Population Reports, P25-1144.             https://www.census.gov/library/publications/2020/demo/p25-1144.html    

Blessed & Grateful to have a 3rd podcast chat with Kim & Blaine from Idaho USA. SO VERY blessed to have a second podcast out this week, this time with the amazing Kim Birkhimer and Bman Ben back to join me from Idaho USA for the 3rd time!In this 62nd episode we cover Neurofeedback, Aphasia, Oxidative stress, Nicotinamide, Fasting, Autophagy and much more...The cause for recovery from Traumatic Brain Injury continues...Kim's Links Here:https://pubmed.ncbi.nlm.nih.gov/?term=Protandim https://kimbirkhimer.lifevantage.com/us-en/?validatedhttps://kimbirkhimer.lifevantage.com/uk-en/https://kimbirkhimer.lifevantage.com/ca-en/https://kimbirkhimer.lifevantage.com/au-en/https://kimbirkhimer.lifevantage.com/nz-en/https://kimbirkhimer.lifevantage.com/nl-nl/https://neuroptimal.com/ pubmed.ncbi.nlm.nih.gov

Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups for people with aphasia and their care partners. She owns an LPAA-focused private practice and specializes in working with people with neurogenic communication disorders. She has worked in acute hospital, skilled nursing, and continuum of care settings. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer. In this episode, Lyssa Rome interviews Liz Hoover about group treatment for aphasia.   Guest info Dr. Liz Hoover is a clinical professor of speech language and hearing sciences and the clinical director of the Aphasia Resource Center at Boston University. She holds board certification from the Academy of Neurologic Communication Disorders and Sciences, or ANCDS, and is an ASHA fellow. She was selected as a 2024 Tavistock Trust for Aphasia Distinguished Scholar, USA and Canada. Liz was a founding member of Aphasia Access and served on the board for several years. She has 30 years of experience working with people with aphasia and other communication disorders across the continuum of care. She's contributed to numerous presentations and publications, and most of her work focuses on the effectiveness of group treatment for individuals with aphasia.   Listener Take-aways In today's episode you will: Describe the evidence supporting aphasia conversation groups as an effective interventions for linguistic and psychosocial outcomes. Differentiate the potential benefits of dyads versus larger groups in relation to client goals. Identify how aphasia severity and group composition can influence treatment outcomes.   Edited transcript Lyssa Rome Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Lyssa Rome. I'm a speech language pathologist on staff at the Aphasia Center of California and I see clients with aphasia and other neurogenic communication disorders in my LPAA-focused private practice. I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration and ideas that support their aphasia care through a variety of educational materials and resources.   I'm today's host for an episode that will feature Dr. Elizabeth Hoover, who was selected as a 2024 Tavistock Trust for Aphasia Distinguished Scholar, USA and Canada.   Liz Hoover is a clinical professor of speech language and hearing sciences and the clinical director of the Aphasia Resource Center at Boston University. She holds board certification from the Academy of Neurologic Communication Disorders and Sciences, or ANCDS, and is an ASHA fellow. Liz was a founding member of Aphasia Access and served on the board for several years. She has 30 years of experience working with people with aphasia and other communication disorders across the continuum of care. She's contributed to numerous presentations and publications, and most of her work focuses on the effectiveness of group treatment for individuals with aphasia. Liz, welcome back to the podcast.   So in 2017 you spoke with Ellen Bernstein Ellis about intensive comprehensive aphasia programs or ICAPs and inter professional practice at the Aphasia Resource Center at BU and treatment for verb production using VNest, among other topics. So this time, I thought we could focus on some of your recent research with Gayle DeDe and others on conversation group treatment.   Liz Hoover Sounds good.   Lyssa Rome All right, so my first question is how you became interested in studying group treatment?   Liz Hoover Yeah, I actually have Dr. Jan Avent to thank for my interest in groups. She was my aphasia professor when I was a graduate student doing my masters at Cal State East Bay. As you know, Cal State East Bay is home to the Aphasia Treatment Program. When I was there, it preceded ATP. But I was involved in her cooperative group treatment study, and as a graduate student, I was allowed to facilitate some of her groups in this study, and I was involved in the moderate-to-severe group. She was also incredibly generous at sharing that very early body of work for socially oriented group treatments and exposing us to the work of John Lyons and Audrey Holland. Jan also invited us to go to a conference on group treatment that was run by the Life Link group. It's out of Texas Woman's University, Delaina Walker-Batson and Jean Ford. And it just was a life changing and pivotal experience for me in recognizing how group treatment could not be just an adjunct to individual goals, but actually be the type of treatment that is beneficial for folks with aphasia. So it's been a love my entire career.   Lyssa Rome And now I know you've been studying group treatment in this randomized control trial. This was a collaborative research project, so I'm hoping you can tell us a little bit more about that project. What were your research questions? Tell us a little bit more.   Liz Hoover Yeah, so thank you. I'll just start by acknowledging that the work is funded by two NIDCD grants, and to acknowledge their generosity, and then also acknowledge Dr. Gayle DeDe, who is currently at Temple University. She is a co- main PI in this work, and of course it wouldn't have happened without her. So you know, Gayle and I have known each other for many, many years. She's a former student, doctoral student at Boston University, and by way of background, she and I were interested in working together and interested in trying to build on some evidence for group treatment. I think we drank the Kool Aid early on, as you might say.   And you know, just looking at the literature, there have been two trials on the evidence for this kind of work. And so those of us who are involved in groups, know that it's helpful for people with aphasia, our clients tell us how much they enjoy it, and they vote with their feet, right? In that they come back for more treatments. And aphasia centers have grown dramatically in the last couple of decades in the United States.   So clearly we know they work, but what we don't know is why they work. What are those essential ingredients, and how is that driving the change that we think we see? And from a personal perspective, that's important for me to understand and for us to have explained in the literature, because until we can justify it in the scientific terms, I worry it will forever be a private-pay adjunct that is only accessible to people who can pay for it, or who are lucky enough to be close enough to a center that can get them access—virtual groups aside, and the advent of that—but it's important that I think this intervention is validated to the scientific community in our field.   So we designed this trial. It's a randomized control trial to help build the research evidence for conversation, group treatment, and to also look at the critical components. This was inspired by a paper actually from Nina Simmons Mackie in 2014 and Linda Worrell. They looked at group treatment and showed that there were at least eight first-tier elements that changed the variability or on which we might modify group conversation treatment. And so, you know, if we're all doing things differently, how can we predict the change, and how can we expect outcomes?   Lyssa Rome So I was hoping you could describe this randomized, controlled trial. You know, it was collaborative, and I'm curious about what you and your collaborators had as your research questions.   Liz Hoover So our primary aims of the study were to understand if communication or conversation treatment is associated with changes in measures of communicative ability and psychosocial measures. So that's a general effectiveness question. And then to look in more deeply to see if the group size or the group composition or even the individual profile of the client with aphasia influences the expected outcome.   Because if you think about group treatment, the size of the group is not an insignificant issue, right? So a small group environment of two people has much more… it still gives you some peer support from the other individual with aphasia, but you have many opportunities for conversational turns and linguistic and communication practice and to drive the saliency of the conversation in a direction that's meaningful and useful and informative.   Whereas in a large group environment of say, six to eight people with aphasia and two clinicians, you might see much more influence in the needed social support and vicarious learning and shared lived experience and so forth, and still have some opportunity for communication and linguistic practice. So there's conflicting hypotheses there about which group environment might be better for one individual over another.   And then there's the question of, well, who's in that group with you? Does that matter? Some of the literature says that if you have somebody with a different profile of aphasia, it can set up a therapeutic benefit of the helper experience, where you can gain purpose by enabling and supporting and being a facilitator of somebody else with aphasia.   But if you're in a group environment where your peers have similar conversation goals as you, maybe your practice turns, and your ability to learn vicariously from their conversation turns is greater. So again, two conflicting theories here about what might be best. So we decided to try and manipulate these group environments and measure outcomes on several different communication measures. We selected measures that were linguistic, functional, and psychosocial.   We collected data over four years. The first two years, we enrolled people with all different kinds of profiles of aphasia. The only inclusion criteria from a communication perspective, as you needed some ability to comprehend at a sentence level, so that you could process what was being said by the other people in the group. And in year one, the treatment was at Boston University and Temple University, which is where Gayle's aphasia center is housed. In year two, we added a community site at the Adler Aphasia Center and Maywood, New Jersey, so we had three sites going.   The treatment conditions were dyad, large group, and then a no treatment group. So this group was tested at the same time, didn't get any other intervention, and then we gave them group treatment once the testing cycle was over. So we call that a historical control or a delayed-treatment control group. And then in years three and four, we aim to enroll people who had homogeneous profiles.   So the first through the third cycle was people with moderate to severe profiles. And then in the final, fourth cycle, it was people with mild profiles with aphasia. This allowed us to collect enough data in enough size to be able to look at overall effectiveness and then effects of heterogeneity or homogeneity in the group, and the influence of the profile of aphasia, as well as the group size.   And across the four years, we aim to enroll 216 participants, and 193 completed the study. So it's the largest of its kind for this particular kind of group treatment that we know of anyway. So this data set has allowed us to look at overall efficacy of conversation group treatment, and then also take a look at a couple of those critical ingredients. Does the size of the group make a difference? And does the composition of your group make a difference?   Lyssa Rome And what did you find?   Liz Hoover Well, we're not quite done with all of our analysis yet, but we found overall that there's a significant treatment effect for just the treatment conditions, not the control group. So whether you were in the dyad or whether you were in a large treatment group, you got better on some of the outcome measures we selected. And the control group not only didn't but on a couple of those measures, their performance actually declined. And so showing significantly that there's a treatment effect. Did you have a question?   Lyssa Rome Yeah, I wanted to interrupt and ask, what were the outcome measures? What outcome measures were you looking at?   Liz Hoover Yeah. So we had about 14 measures in total that aligned with the core outcome set that was established by the ROMA group. So we had as our linguistic measure the Comprehensive Aphasia Test. We had a primary outcome measure, which was a patient reported measure of functional communication, which is the ACOM by Will Hula and colleagues, the Aphasia Communication Outcome measure, we had Audrey Holland and colleagues' objective functional measure, the CADL, and then a series of other psychosocial and patient reported outcome measures, so the wall question from the ALA, the Moss Social Scale, the Communication Confidence Rating Scale in Aphasia by Leora Cherney and Edie Babbitt.   Lyssa Rome Thank you. When I interrupted you to ask about outcome measures. You were telling us about some of the findings so far.   Liz Hoover Yeah, so our primary outcome measures showed significant changes in language for both the treatment conditions and a slightly larger effect for the large group. And then we saw, at a more micro level, the results pointing to a complex interaction, actually, between the group size and the treatment outcome. So we saw changes on more linguistic measures. like the repetition sub scores of the CAT and verb naming from another naming subtest for the dyad group, whereas bigger, more robust changes on the ACOM the CADL and the discourse measure from the CAT for the large group.   And then diving in a little bit more deeply for the composition, these data are actually quite interesting. The papers are in review and preparation at the moment, but it looks like we are seeing significant changes for the moderate-to-severe group on objective functional measures and patient reported functional measures of communication, which is so exciting to see for this particular cohort, whose naming scores were zero, in some cases, on entrance, and we're seeing for the mild group, some changes on auditory comprehension, naming, not surprisingly, and also the ACOM and the CADL. So they're showing the same changes, just with different effect sizes or slightly different ranges. And once again, no change in the control group, and in some cases, on some measures, we're seeing a decline in performance over time.   So it's validating that the intervention is helpful in general. What we found with the homogeneous groups is that in a homogeneous large group environment, those groups seem to do a little better. There's a significant effect over time between the homogeneous and the heterogeneous groups. So thinking about why that might have taken place, we wonder if the shared lived experience of your profile of aphasia, your focus on similar kinds of communication, or linguistic targets within the conversation environment might be helping to offset the limited number of practice trials you get in that larger group environment.   So that's an interesting finding to see these differences in who's in the group with you. Because I think clinically, we tend to assign groups, or sort of schedule groups according to what's convenient for the client, what might be pragmatic for the setting, without really wondering why one group could be important or one group might be preferential. If we think about it, there are conflicting hypotheses as to why a group of your like aphasia severity might have a different outcome, right? That idea that you can help people who have a different profile than you, that you're sharing different kinds of models of communication, versus that perhaps more intense practice effect when you share more specific goals and targets and lived experiences. So it's interesting to think about the group environment from that perspective, I think,   Lyssa Rome And to have also some evidence that clinicians and people at aphasia centers can look to help make decisions about group compositions, I think is incredibly helpful.   Earlier, you mentioned that one of the goals of this research project has been to identify the active ingredients of group therapy. And I know that you've been part of a working group for the Rehabilitation Treatment Specification System, or RTSS. Applying that, how have you tried to identify the active ingredients and what? What do you think it is about these treatments that actually drives change?   Liz Hoover I'll first of all say, this is a work in process. You know, I don't think we've got all of the answers. We're just starting to think about it with the idea, again, that if we clinically decide to make some changes to our group, we're at least doing it with some information behind us, and it's a thoughtful and intentional change, as opposed to a gut reaction or a happenstance change. So Gayle and I have worked on developing this image, or this model. It's in a couple of our papers. We can share the resources for that. But it's about trying to think of the flow of communication, group treatment, and what aspects of the treatment might be influential in the outcomes we see downstream.   I think for group treatment, you can't separate entirely many of the ingredients. Group treatment is multifaceted, it's interconnected, and it's not possible—I would heavily debate that with anybody—I don't think it's possible to sort of truly separate some of these ingredients. But when you alter the composition or the environment in which you do the treatment, I do think we are influencing the relative weight of these ingredients.   So we've been thinking about there being this group dynamics component, which is the supportive environment of the peers in the group with you, that social support, the insider affiliation and shared lived experience, the opportunity to observe and see the success of some of these different communication strategies, so that vicarious learning that takes place as you see somebody else practice. But also, I think, cope in a trajectory of your treatment process.   And then we've got linguistic practice so that turn taking where you're actually trying to communicate verbally using supported communication where you're expanding on your utterances or trying to communicate verbally in a specific way or process particular kinds of linguistic targets. A then communication practice in terms of that multimodal effectiveness of communication.   And these then are linked to these three ingredients, dynamic group dynamics, linguistic practice and communication practice. They each have their own mechanism of action or a treatment theory that explains how they might affect change. So for linguistic practice, it's the amount of practice, but also how you hear it practiced or see it practiced with the other group participant. And the same thing for the various multimodal communication acts. And in thinking about a large group versus the dyad or a small group, you know you've got this conflicting hypothesis or the setup for a competing best group, or benefit in that the large group will influence more broadly in the group dynamics, or more deeply in the group dynamics, in that there's a much bigger opportunity to see the vicarious learning and experience the support and potentially experience the communication practice, given a varied number of participants.   But yet in the dyad, your opportunity for linguistic practice is much, much stronger. And our work has counted this the exponential number of turns you get in a dyad versus a large group. And you know, I think that's why the results we saw with the dyad on those linguistic outcomes were unique to that group environment.   Lyssa Rome It points, I think, to the complexity of decision making around group structure and what's right for which client, maybe even so it sounds like some of that work is still in progress. I'm curious about sort of thinking about what you know so far based on this work, what advice would you have for clinicians who are working in aphasia centers or or helping to sort of think about the structure of group treatments? What should clinicians in those roles keep in mind?   Liz Hoover Yeah, that's a great question, and I'll add the caveat that this may change. My advice for this may change in a year's time, or it might evolve as we learn more. But I think what it means is that the decisions you make should be thoughtful. We're starting to learn more about severity in aphasia and how that influences the outcomes. So I think, what is it that your client wants to get out of the group? If they're interested in more linguistic changes, then perhaps the dyad is a better place to start. If they clearly need, or are voicing the need, for more psychosocial support, then the large, you know, traditional sized and perhaps a homogeneous group is the right place to start. But they're both more effective than no treatment. And so being, there's no wrong answer. It's just understanding your client's needs. Is there a better fit?   And I think that's, that's, that's my wish, that people don't see conversation as something that you do at the beginning to build a rapport, but that it's worthy of being an intervention target. It should be most people's primary goal. I think, right, when we ask, what is it you'd like? “I want to talk more. I want to have a conversation.” Audrey Holland would say it's a moral imperative to to treat the conversation and to listen to folks' stories. So just to think carefully about what it is your client wants to achieve, and if there's an environment in which that might be easier to help them achieve that.   Lyssa Rome It's interesting, as you were saying that I was thinking about what you said earlier on about sort of convincing funders about the value of group treatment, but what you're saying now makes me think that it's all your work is also valuable in convincing speech therapists that referrals to groups or dyads is valuable and and also for people with aphasia and their families that it's worth seeking out.   I'm curious about where in the continuum of care this started for the people who were in your trial. I mean, were these people with chronic aphasia who had had strokes years earlier? Was it a mix? And did that make a difference?   Liz Hoover It was a mix. I think our earliest participant was six months post-onset. Our most chronic participant was 26 years post-onset. So a wide range. We want, obviously, from a study perspective, we needed folks to be outside of the traditional window of spontaneous recovery in stroke-induced aphasia.   But it was important to us to have a treatment dose that was reasonable and applicable to a United States healthcare climate, right? So twice a week for an hour is something that people would get reimbursed for. The overall dose is the minimum that's been shown to be effective in the RELEASE collaborative trial papers. And then, you know, but still, half, less than half the dose that the Elman and Bernstein Ellis study found to be effective. So there may be some wiggle room there to see if, if a larger dose is more effective.   But yeah, I think it's that idea of finding funding, convincing people that this is not just a reasonable treatment approach, but a good approach for many outcomes for people with chronic aphasia. I mean, you know, one of the biggest criticisms we hear from the giants in our field is the frustration with aphasia being treated like it's a quick fix and can be done. But you know, so much of the work shows that people are only just beginning to understand their condition by the time they're discharged from traditional outpatient services. And so there's a need for ongoing treatment indefinitely, I think, as your goals change, as you age, and as your wish to participate in different things changes over a lifetime,   Lyssa Rome Yeah, absolutely. And I think too, when we think about sort of the role of hope, if you know, if there is additional evidence showing that there can be change after that sort of traditional initial period, when we think that change happens the most, that can provide a lot of hope and motivation, I think, to people.   Liz Hoover yeah, we're look going to be looking next at predictors of change, so looking at our study entrance scores and trying to identify which participants were the responders versus the non-responders that you know, because group effects are one thing, but it's good to see who seems to benefit the most from these individual types of environments.   And an early finding is that confidence, or what some people in the field, I'm learning now are referring to as actually communication self-efficacy, but that previous exposure to group potentially and that confidence in your communication is inversely correlated with benefits from treatment on other measures. So if you've got a low confidence in your ability to communicate functionally in different environments, you're predicted to be a responder to conversation treatment.   Lyssa Rome Oh, that's really interesting. What else are you looking forward to working on when it comes to this data set or other projects that you have going on?   Liz Hoover Yeah. So as I mentioned, there's a lot of data still for us to dig into, looking at those individual responders or which factors or variables might make an impact. There is the very next on the list, we're also going to be looking very shortly at the dialogic conversation outcomes. So, it's a conversation treatment. How has conversation changed? That's a question we need to answer. So we're looking at that currently, and might look more closely at other measures. And then I think the question of the dose is an interesting one. The question of how individual variables or the saliency of the group may impact change is another potentially interesting question. There are many different directions you can go.   You know, we've got 193 participants in the study, with three separate testing time points, so it's a lot of data to look at still. And I think we want to be sure we understand what we're looking at, and what those active ingredients might be, that we've got the constructs well defined before we start to recruit for another study and to expand on these findings further.   Lyssa Rome When we were meeting earlier, getting ready for this talk, you mentioned to me a really valuable video resource, and I wanted to make sure we take some time to highlight that. Can you tell us a little bit about what you worked on with your colleagues at Boston University?   Liz Hoover Yes, thank you. So I'll tell you a little bit. We have a video education series. Some of you may have heard about this already, but it's up on our website so bu.edu/aphasiacenter, and we'll still share that link as well. And it's a series of short, aphasia-friendly videos that are curated by our community to give advice and share lived experiences from people with aphasia and their care partners.   This project came about right on the heels of the COVID shutdown at our university. I am involved in our diagnostic clinic, and I was seeing folks who had been in acute care through COVID being treated with people who were wearing masks, who had incredibly shortened lengths of stay because people you know rightly, were trying to get them out of a potentially vulnerable environment. And what we were seeing is a newly diagnosed cohort of people with aphasia who were so under-informed about their condition, and Nina that has a famous quote right of the public being woefully uninformed of the aphasia condition and you don't think it can get any worse until It does.   And I thought, gosh, wouldn't it be wonderful to be able to point them to some short education videos that are by people who have lived their same journey or a version of their same journey. So we fundraised and collaborated with a local production company to come up with these videos. And I'll share, Lyssa, we just learned last week that this video series has been awarded the ASHA 2025 Media Outreach Award. So it's an award winning series.   Lyssa Rome Yeah, that's fantastic, and it's so well deserved. They're really beautifully and professionally produced. And I think I really appreciated hearing from so many different people with aphasia about their experiences as the condition is sort of explained more. So thank you for sharing those and we'll put the links in our show notes along with links to the other articles that you've mentioned in this conversation in our show notes. So thanks.   Liz Hoover Yeah, and I'll just put a big shout out to my colleague, Jerry Kaplan, who's the amazing interviewer and facilitator in many of these videos, and the production company, which is Midnight Brunch. But again, the cinematography and the lighting. They're beautifully done. I think I'm very, very happy with them.   Lyssa Rome Yeah, congrats again on the award too. So to wrap up, I'm wondering if there's anything else that you want listeners to take away from this conversation or from the work that you've been doing on conversation treatments.   Liz Hoover I would just say that I would encourage everybody to try group treatment. It's a wonderful option for intervention for people, and to remind everyone of Barbara Shadden and Katie Strong's work, of that embedded storytelling that can come out in conversation, and of the wonderful Audrey Holland's words, of it being a moral imperative to help people tell their story and to converse. It's yeah… You'll drink the Kool Aid if you try it. Let me just put it that way. It's a wonderful intervention that seems to be meaningful for most clients I've ever had the privilege to work with.   Lyssa Rome I agree with that. And meaningful too, I think for clinicians who get to do the work.   Liz Hoover, thank you so much for your work and for coming to talk with us again, for making your second appearance on the podcast. It's been great talking with you.   Liz Hoover Thank you. It's been fun. I appreciate it.   Lyssa Rome And thanks also to our listeners for the references and resources mentioned in today's show. Please see our show notes. They're available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@aphasia access.org.   Thanks again for your ongoing support of Aphasia Access. For Aphasia Access Conversations. I'm Lyssa Rome.       Resources Walker-Batson, D., Curtis, S., Smith, P., & Ford, J. (1999). An alternative model for the treatment of aphasia: The Lifelink© approach. In R. Elman (Ed.), Group treatment for neurogenic communication disorders: The expert clinician's approach (pp. 67-75). Woburn, MA: Butterworth-Heinemann   Hoover, E.L., DeDe, G., Maas, E. (2021). A randomized controlled trial of the effects of group conversation treatment on monologic discourse in aphasia. Journal of Speech-Language and Hearing Research doi/10.1044/2021_JSLHR-21-00023 Hoover, E., Szabo, G., Kohen, F., Vitale, S., McCloskey, N., Maas, E., Kularni, V., & DeDe., G. (2025). The benefits of conversation group treatment for individuals with chronic aphasia: Updated evidence from a multisite randomized controlled trial on measures of language and communication. American Journal of Speech Language Pathology. DOI: 10.1044/2025_AJSLP-24-00279   Aphasia Resource Center at BU   Living with Aphasia video series Aphasia Access Podcast Episode #15: In Conversation with Liz Hoover

In this episode the Slow Road to Better crew learn about Aphasia Toastmasters with Barry! All are welcome. A great way to meet aphasia warriors and work on communication skills.

In this episode you will discover: Math IS Language - It's in Our Wheelhouse Math has syntax (order of operations), semantics (number meanings), and involves memory and executive function - all areas SLPs already assess and treat. If you can help with language, you have transferable skills for math therapy. Start Simple with What You Have You don't need special materials or extensive math training. Use a deck of cards, dice, and real-life examples like restaurant receipts. Make numbers "friendly" (round $18.72 to $20) and let clients show you multiple ways to solve problems. Address Your Own Math Anxiety First Most SLPs feel uncomfortable with math, but clients need this support for life participation (paying bills, calculating tips, telling time). Acknowledge your discomfort, start with basics you DO know, and remember - if you avoid it, you can't help your clients who want to work on it. If you've ever felt your palms get sweaty when a client asks for help with numbers, this conversation is for you. Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Katie Strong, a faculty member at Central Michigan University where I lead the Strong Story Lab. I'm today's host for an episode that might just change how you think about math anxiety - both your own and your clients'. We're featuring Tami Brancamp and Dave Brancamp, who are doing pioneering work at the intersection of aphasia and mathematics. Before you hit pause because you're having flashbacks to algebra class, stay with me! This research shows us that the language of math is exactly that - language - which puts it squarely in our wheelhouse as SLPs. We'll explore how to support our clients with aphasia who are struggling with everyday math tasks like counting change, telling time, or balancing a checkbook. And yes, we'll tackle the elephant in the room: addressing our own math insecurities so we can show up confidently for our clients. Let me tell you about our guests. Tami Brancamp is an associate professor at the University of Nevada, Reno School of Medicine and founder of the Aphasia Center of Nevada. Her research focuses on identity in aphasia and rehabilitating everyday math skills. Dave Brancamp spent over 15 years as a junior high math teacher and later became Director of Standards at the Nevada Department of Education. Together, they co-founded Aphasia + Math, where they're exploring how language and mathematics intersect for people with aphasia. Okay now let's get this Aphasia + Math conversation started! Katie Strong: Tami and Dave, welcome to the podcast. I'm so excited for you to be here today.   Dave Brancamp: Thank you.   Tami Brancamp: We are both super excited to have a chance to talk about things that are different, right?   Katie Strong: Right. I do have to say, I don't know if it was a rash, but I did get a little bit nervous coming into the conversation, because I think I may be one of those SLPs that feel a little bit uncomfortable with math.   Tami Brancamp: Well, this SLP also is uncomfortable with math, so we can be uncomfortable together. And we'll let the math dude guide us through some of the things.   Dave Brancamp: And it will be fun. By the time you're done, I want to see that smile that you have on your face.   Katie Strong: Well, let's jump in and have you share a little bit about how you came to researching aphasia and math.   Tami Brancamp: Well, I have loved working with people who have aphasia since the beginning of my graduate studies. And then probably, like most of us, there's a few clients who've really hit your heart. One of them, I don't recall her name, and that's okay, but she had a stroke, had aphasia. She had had great recover physically, and her language was quite good, some anomia. But she's a banker, and she could not process numbers, and she was angry. I'm a newbie, I didn't understand the emotional piece of stroke survivor, aphasia. can't do my job well. But she was angry, and I felt so helpless. I didn't know what to do to help her. You know, I could pull a workbook off the shelf or something, but it didn't feel right. You know, she could do calculations, but couldn't do her job. And I always felt so very, very helpless over the years.   And the other part that came to start looking at this was teaching in a speech pathology program, undergrad and grad. And in class, maybe we're doing an averaging or something to get a score. I'm not sure if we start talking math, and I would see these students, and their eyes would just like, pop up, like, “Oh my gosh, she's asking me to do math.” And like, deer in the headlights. So I'm like, “What is this?” Every semester, I would do kind of an informal survey when we would do a little bit of math, and I say, “Okay, so how many of you don't do math? Raise your hand or are afraid of math?” And it would be at least two thirds to three quarters of the class every single semester, and I'm like, “Okay, there's something here.” Like, if I'm afraid of math, how am I going to help my clients remediate that in an efficient way? Right? I'm going to avoid it. If I can, I'll go do other things that are important.   So those were, like, the two big things, and then happened to be married to a math dude. And I wondered why are we not combining our skill sets? Because I would come home and I would share with Dave. I'm like “Dave, the majority of my students are afraid to do math or uncomfortable doing math.” And it's not complicated math. We're not talking quadratic equations or things I don't even know what they mean anymore. And we would talk about it a little bit, and we talk about math attitudes and perceptions and how we develop our math skills. And I'm like, “There's something here.”But I was never taught, how do you remediate number processing? Calculations? right? But yet, I would have multiple clients say, “Hey, Tammy, I can't do numbers.” “Yeah, how do I do this?” And there really wasn't anything the literature that told me how to do it. So, I would talk to Dave, and then, just over the years, I'm like, “Okay, we need to do something with this. We really do.” And I don't know what that means, because I'm not most comfortable with math, it is not my passion. We're very opposite. I think I shared like, Dave has math and fun in the same language, and then in the same sentence, I'm like, “they don't go together in my brain.” So we're very, very opposite. But you know, you can speak for yourself how you grew up and you had to learn how to embrace math, and having good teachers helped when we were younger, and having poor teachers or teachers with different attitudes also left a lasting impression. But when you think about it, whether it's, you know, cooking, driving, banking, living, going to grocery store, restaurants, everything we do all the time, it all involves numbers to some impact, you know, to some effect. And our folks with aphasia, again, not everybody, but the majority of them, will still have an impact with acalculia, difficulty processing numbers and calculating and transcoding, you know, saying, saying the numbers. So, we started to look at it.   I did have a had a gift of time with Audrey Holland. So that was my beautiful, like, for many of us, a mentor, you know, she had her three-pronged stool, like the different parts of aphasia. And Dave and I started dividing it up, like, what were the parts we thought involve, you know, aphasia and numbers. And we did think about the math and language math skills, making it fun, but also those influencing elements, like attitudes and perceptions. So, we started just like, “How do we look at this?” Because it's really overwhelming just from the beginning, you know, and just pulling that workbook off the shelf didn't do it for me. You're allowed to speak on that. (Laughter)   Dave Brancamp That's one of my passions, obviously, the whole math side. But pulling a workbook is an unfortunate because if someone starts to practice something wrong, they'll repeat that practice, and now it's very difficult to get them to correct a habit, basically that you've formed. And sometimes it's like that nails on a chalkboard? That's what it feels like to me when I hear it. I'm like, “Oh, don't do that.” Because if they're doing it wrong, like, 20 times, 10 times, even then it performs a habit that's real hard for them to go, “Well, but I thought I got them all right.”   Katie Strong: Yeah.   Dave Brancamp: Because I think we can all go back to math and you come up unless it was something really, really difficult in at least in our early years of math. We all came up with an answer. And that's how it feels on a worksheet that might have like just adding single digit numbers, if you make an error, you won't know until someone either corrects it or asks you, “How did you get there?” And to me, that's where it became more important. And then I had to learn how to do what do you call it? aphasia friendly language, you know? So, math folks usually speak in short sentences, so that helps. But we'll run a whole bunch of sentences together. If I give you the best example. I know we're going to talk a little bit about that math perception quiz, the difference between us on that question, I think it says “I would prefer to do an assignment in math rather than write an essay.” I'm the person to give me that math assignment. 100%. Tammy is like, give me the essay!   Katie Strong: And I have to say I'm right there with Tammy.   Tami Brancamp I think so, as speech pathologists, we learned about the pedagogy of language and language development. We can analyze it. We can treat it. We can assess it. And then I talked to Dave, and he goes, “Well, there's this whole math I know there's a math pedagogy, and there's this whole developmental progression of how we learn math.” But “Really, okay, well, I've never learned that, right?” “No, you learn this before you learn that.” We lived it, we just weren't overtly taught it. Or how you know, if there's an error in a calculation, that means that there's some challenges in this part of your developmental math abilities. Like, “Huh, okay, well, that kind of sounds like language to me, a little bit.” They do go together.   Katie Strong: Yeah, yeah. So, I love to maybe ask a little bit about this. As we've pretty clearly stated, many SLPs feel uncomfortable with math and their own math skills.   Tami Brancamp: Yeah.   Katie Strong: And we, probably many of us, have avoided it in our own education.   Tami Brancamp: Yeah.   Katie Strong: So I love this idea that there's the language of math, and I was wondering if you could talk a little bit about that and why it should fit right within our scope of practice as SLPs.   Tami Brancamp: A long time ago, I remember how many years ago I came across an article by Seron 2001 in Aphasiology. And he or she, I actually don't know, stated that math should be part of the SLPs practice. I started looking at 20 years later, and it still wasn't (a part of our practice). So, something's really amiss. What are we missing? When we talk about the language, there is a syntax in math. Dave calls it order of operations. And I don't even know what the PEMDAS.   Dave Brancamp: PEMDAS.   Tami Brancamp: PEMDAS, right?   Dave Brancamp: You what scares most people about that? Parentheses, exponents, multiplication, division, addition, subtraction. The left to right. I mean, that's the part people left off.   Tami Brancamp: But, ah, yeah, that kind of sounds familiar, doesn't it?   Katie Strong It does. It's ringing a very faint bell.   Dave Brancamp: It's like, oh no, we're not going to do that.   Tami Brancamp So there is a syntax. There's an order of operations, how we put mathematical equations together. Just like how we put sentences together. There's semantics, right? There's word meaning. We have a little sign for you. It won't translate audio, but we'll talk about it. So, in math, and you use the word or the number, the orthographic representation 2, right? Yes. And then we spell it TWO. We also spell it TO and TOO. And then, if you say, “Okay, we also have a two in the number 12, right?” They have to be able to transcode that and a two in the number 20, the two zero. The two in all those locations has different meaning, right? So, it does have semantics.   The other parts, I think, were important, was memory and executive function. Executive function permeates mathematics in so many ways. So, when we think about our stroke survivors, those are areas that are and can be impacted. Information processing. How much can they hold in memory of being presented with language, and in this case, language and numbers.   So, I think for me, it just, it really is integrated. I also thought, too, when we were looking, I was looking at the neuroscience of it, and there's some shared neuro space that works for math and language. They're not fully disassociated, so I found that really fascinating as well.   Katie Strong Yeah, it really is, as I've been thinking about our conversation and just looking into things a little bit, it really makes sense. And even just thinking about just thinking about a word problem in math, certainly, there's that language component that may be a little less intimidating for SLP clinicians that aren't typically working in practice. But I so appreciate you both bringing this conversation out into the light and doing this work, because I can think of a significant number of clients that I've worked with that have also expressed challenges in all sorts of different ways of math. And sometimes I've been able to maybe support it a little bit, and other times I haven't. And I, you know, whether it's me just avoiding it and saying, “Oh, we could work on all of these other things or we can work on this math thing”  or, you know, it's just frustrating, I think, to not have really the tools to be able to know how to support it.   Our podcast, really focuses on the Life Participation Approach to Aphasia, which really emphasizes a person-centered approach. Like I'm the client I want to choose what I want in my life and what I want to work on. And so, I'm just wondering if you might be able to talk through a little bit about how math skills fit into LPAA framework.   Tami Brancamp: Yeah, we were talking about that, and there's one particular client who has multiple PhDs before his stroke. He has family, adult children. And he's like, “Tammy.” And we were Dave and I were piloting some work together. And he's like, “Guys, I want to take my family to dinner. I want to pay the bill and the tip.” I'm like, “Okay, dude, I got an app for that.” And he's like, “No, I want to do it myself.” So that, to me, is life participation. If a person is fine with an app, let's make it so and work on something else.   Katie Strong: Yeah. Tami Brancamp: But his case, it was so important to him. I'm like, “Okay, here we go.” How do we how do we work on figuring out the tip? Now, does it have to be an exact percent? No, Dave likes to teach it more like there's some more strategies to get to the tip.   Another client I wanted to share, and sometimes too, when we think about assumptions. So, the data on how many people with aphasia also have math difficulties, numeracy difficulties is wide ranging. It's so big. So you can't even really say what percent. But I also had an assumption. I have a gentleman who I've worked with off and on for a very long time. He's nonfluent aphasia and also has apraxia of speech, and so we're working a lot on his language and his speech. And I said, “So how's your math?” “It's fine. You know, I own my own business and I have somebody help, but it's fine.” I'm like, in my head, hmm, I don't think so. I wonder, because the severity of his aphasia and his ability to transcode so like, see a number and then say the name or say the numbers he wants to say, was really impacted. So, we were doing a pilot study during the pandemic online, and so Dave and I were working with this one gentleman. And I think you why don't you do the story because I don't remember you gave him homework or something. A home program.   Dave Brancamp: There's a math game called Krypto.   Tami Brancamp: Oh, Krypto.   Dave Brancamp: So you put five cards down. And each one has its value, you know. And so your listeners just so they know, like when the Jack would fall, that would be 11, and so the Ace automatically took a one, the Queen would be, you know, 12, and the King 13. So five cards different values, or they could be the same value didn't matter, and then one more card became like a target. You had to figure out an equation. So, some big, nice math term there to that you'd add, subtract, multiply, divide to equal this last card.   Now they could do with just two cards, three cards, four cards or five would be ideal. So, they had some room for success. And this gentleman, we had some hard numbers that were there. And, you know, he had done a couple, and was rolling right through. And I kept looking over at Tami and I am like, "He's got his math. His math is really good.”   Tami Brancamp: His ability to calculate.   Dave Brancamp: And then we hit one that was really hard, and we're both looking (each other). And the next thing, you know, this gentleman, not to scare anybody, but makes a complex fraction, making a fraction over another fraction to solve. And you can see right now, right Tammy. Tammy is like, “What are you doing?” I'm like, “Yeah, yeah, no, let's go for it. Let's go for it.” And next thing you know, we were able to solve it by doing two complex fraction with another number. And he solved the problem. And I looked at Tammy said, “This man has no math problems.” Tami Brancamp:  And I said, “Boys, I'm out. I'm out. You all just continue playing with your numbers. Have a good time.” That's not a comfort zone for me. It's also not the focus we're doing with aphasia in math. But it was something he was capable to do, and I also could see within him, he was super excited that he could do this.   Katie Strong: Yeah   Dave Brancamp: And he wanted to show his wife. He wanted to show other people, he was like, “Look at this. Look at this.” You know, I was like, “Yeah, there's a lot happening.”   Tami Brancamp: But he could not read the equation. Okay, so there's the aphasia language issue.   Katie Strong: Right.   Tami Brancamp: Transcoding. He could do the calculations without difficulty.   Katie Strong: Amazing.   Tami Brancamp: But those are the those are really fascinating. And while we were piloting, we had a group of, I don't know, five or six people with aphasia, and each one had their own. They're all on the non-fluent side, but everybody had their own combination of language difficulty and number processing difficulty. We did notice what one client we worked with who had more cognitive impairment along with language and hers, her processing was much more different than pure aphasia and the acalculia issues. So, it's really interesting to see. It's definitely not cookie cutter, right? Just like aphasia therapy.   Katie Strong: Right.   Tami Brancamp: Every person's got their unique strengths and challenges. And I'm going to say similarly, I think with the math. Where in the brain was the injury? What is their background? What are their interests and passions? All of that plays in just like in aphasia.   Katie Strong: I love bringing up though their prior experience with math too is so important. We think about that from a language standpoint, but we really don't consider that. Or I will speak for myself, I don't typically consider that when I'm learning about somebody and their strengths.   Tami Brancamp: Yeah.   Dave Brancamp: You think like to go back to your language, like the word “sum” S-U-M, is what we'd use in math for adding, but it has the same sounding as “some” S-O-M-E and so right there, there's some language difficulty that could come out. So often we will have flash cards with the plus symbol so that they and can associate words and just so that you feel better on it, too.   Most of us, when we'd heard subtraction probably used an unfortunate phrase of what's called “takeaway”.  Well, that's not what happens from a mathematical point. So, us in the math side, cringe and are like, “Oh well, the numbers don't get taken away. They're still there.” They got, you know, replaced is what we would call them. And so the word of difference, you know, where you live in a different town than we do, so that's what we associate but difference is how we do subtraction. So those little, simple nuances that I had to also remember too because I taught junior high, which most of them were fairly comfortable with their, you know, at least their basic skills. And I'd heard those terms where suddenly, you know, Tammy would bring up to me, “You're gonna have to help us out with that” because that it's easy for you to say that it's causing a problem and that makes us then, you know, have those moments of pause that you're like, “Oh yeah, you're right. I've got to do that.”   Tami Brancamp: Just a little aside on that with we just finished a pilot study with two groups of people doing online intervention. So that background of knowledge, you know, say you got 10 people in a group, and you could see the people who go, “Oh yeah, I remember that. I remember that math language.” You're getting, the nodding like, “Oh yeah, that's right.” And then there's others who have like, “I don't understand what he's saying.” The look. So, it's really fascinating to make sure that we pay as much attention to that background as we do in language.   Katie Strong: Yeah. Interesting, interesting.   Dave Brancamp: I don't know if you want to go down that path, but like when we hit time, you know, which is an element that folks aphasia really want to work with, right? And yet, it's a whole different concept mathematically, because we are used to in almost all the countries we work with of things from, you know, basically what we call base 10 or zero to 100 zero to 10, we can play time is in elements of 12. And so, like you might say it's a quarter past, you know, like one, that's not a 25 it's written as 1:15. And you know, what does that mean? And, oh, I don't know. I don't know how I'm supposed to be at the bus stop or the doctor appointment or whatever they may be going to.   Katie Strong: Right, right.   Dave Brancamp: And a lot of our groups found that to be a huge help, you know. And as much as we all laugh, you probably at least most of us remember when we were in elementary school having little clocks that we might play with.   Katie Strong: Right   Dave Brancamp:  We call them our Judy clocks from when we were as teachers. But it's like, as simple as those are, those are what you need to bring back and go, “Let's take a look at what you know, because it's a quarter of the circle, and that's where it got its name from.”   Tami Brancamp: But it's one over four, like 1/4 one quarter.   Dave Brancamp: But that's not how we'd write it in time. It's actually whatever the hour is and the 15, and you're like, “Where'd that come from?” So, it was very fascinating to watch, and especially when we did some work with some of the clinicians, are just like, “Oh, you're kidding. I didn't even think about that.” It's because we knew it. we transition it naturally and not thinking, “Oh my gosh, my brain now has to re-picture this”. So.   Katie Strong: It is fascinating.   Tami Brancamp: And that you can see how much language is involved.   Tami Brancamp: Huge. Huge.   Katie Strong: Yeah, well, I'm excited to talk about the projects and research that you've been doing. You gave us kind of a teaser about these online groups. Should we start there?   Tami Brancamp: Maybe, we aren't there. We haven't analyzed all the data…   Katie Strong: I'm curious.   Tami Brancamp: Yeah, that'll be a teaser. We are working with our partner, Carolyn Newton. She's in London, and she is at University College London. She's done some work in mathematics and aphasia, and also her doc students, so we're working with them. They did all the assessment with my students. And then Dave and I did intervention. We had two groups. We had, like, a Level 1 and a Level 2. Everybody had aphasia. And we did group intervention primarily because Dave and I have been working with Lingraphica and Aphasia Recovery Connections Virtual Connections.   Katie Strong: Yep.   Tami Brancamp: Since March of 22, we've been doing it every single month.   Katie Strong: Amazing.   Tami Brancamp: We had some time off. Yeah, but you know, what's so crazy is that we average about 38 people who come on to do the session.   Katie Strong: Wow!   Tami Brancamp: Oh, I know, with a range like 19 to 50 people.   Katie Strong: That is amazing, but such a testament that people are interested in this topic.   Tami Brancamp: That's what made us keep pushing forward. Because if that many people show up, there's an interest and there's a need.   Katie Strong: Right.   Tami Brancamp: You know? But how do we how do we help is the challenge. We are in the process of analyzing, did we could that group in the way that we did it, like twice a month over three months? Would that impact change? They could hold it at the end of the treatment. And then we also did 30 days later, so we'll see. And then we also did some we did the math, attitudes and perceptions.   Katie Strong: I took it so maybe give people a little bit of background on what this is.   Tami Brancamp: Yeah. So this is a we looked at a lot of different tools, and this one is called, what is it called Attitudes Toward Mathematics Inventory. And it was designed for adults, college age, students and adults. There's a lot for children. But this is like, really, you know, what do you think about math in terms of you like it, you don't like it. Is it important? Not important. And so there is a lower number means that you are less confident, less familiar.   Dave Brancamp: You might not like it. You might not like it as much.   Katie Strong: And it might give you a rash.   Tami Brancamp: (Laughs) It might give you a rash!   Dave Brancamp: I'm sorry.   Tami Brancamp:  Right, all the things that it does. It's up to a point of 200 Do you want to share what your score was?   Katie Strong: Well, I didn't calculate it. I just did the ABCDE, but I'm gonna guess it's in the lower like 25th. Tami Brancamp: Yeah.   Dave Brancamp: So let me ask you, what was your last math class?   Katie Strong: It was a statistics class in my PhD program.   Dave Brancamp: And how did that class make you feel? Were you like, “Oh, I'm so excited to go!” or like, “Oh my gosh, I just got to get this done.”   Katie Strong: I wanted to get out of there as quickly as I could. I tried hard, and I just kept, I think I kept telling myself it was hard and I couldn't do it, and it just and it was.   Dave Brancamp: So, if you think about that, for us as adults, right? Or anybody, even kids. Take our kids. Whatever your last class is, it sits with us. It's a memory we carry. And then math has its unique way of, kind of building on itself. And then it can bridge to a couple different areas and what have you, but it builds. And if your last class wasn't the most pleasant. You didn't score well, or you didn't have a teacher that you could relate with, or whatever it was, you probably don't have a real fun feeling of math. So that leads to our perceptions, right? And it's and you know, using this we've done this with some of your students as they go through soon to be clinicians, and as soon as they took it and then had us talk, they you almost want to say, “Let's take it again”, because our feeling is of that last class. But when you find out, what we'll probably do is adding, subtracting, multiplying, maybe division, not likely. But what we call basic life skills, it may change how you took the test or take the inventory, because, you know, like for me, it's still, it will never change the fact of giving a math problem over an essay. I'll give you guys the essay. I'll take the math problem. But it's just, you know, is it important your everyday life? Well, how often do you do your statistics on an everyday life? That was your last class right? Not a lot, maybe some. But it's, you know, it's becomes an interesting whatever sitting with us probably has a feeling. If we come in with a bad attitude toward what we're going to teach or share with you, no matter whether they have aphasia or if it's just us in a general setting, they're going to know you don't like this, then why should I spend time with it so we that's the My purpose is make it so that they enjoy even if it's difficult, we're going to enjoy it so that otherwise, you know, I'm already behind because you don't like it. So why should I like it?   Katie Strong: And I love that because, I mean, I know that, like hard work can be fun. I mean, in a therapy situation, hard work can be fun, but thinking about this from a math standpoint really is kind of a game changer for me.   Tami Brancamp:  One of the things, and I think we'll come back to the research a little bit. But Dave likes gamification. I don't really like to play games, right?   Dave Brancamp: You're getting better! Tami Brancamp: But you have to, you know.   Dave Brancamp: I will pick up like dice. We try to do things that we figure our folks could find rather easily. You know whether you have dice from a Yahtzee game where you can go pick them up and a deck of cards. Almost everything I do with them are one of those two. It might take a little more looking, but I'll we often use what are called foam dice so they don't make all that noise, because sometimes too much noise can be very bothersome. And then using, like, the whiteboard or something to write with helps so they can see, because sometimes you'll be playing a game and they'll have no idea of the math that's involved and why there might have been, like, a strategy or so on.   Tami Brancamp: When we do work with people using cards and dice to generate the numbers, we have activities we do and we make it aphasia friendly, but we'll also discuss, maybe after the fact, “All right, so how did you do? Where was it difficult? I want you to recognize that you were working on executive function here. You were giving it strategies and thinking and multiple steps ahead.” So that they can recognize it isn't a kid game.   Katie Strong: Yeah, just a game.” Yeah.   Tami Brancamp: It's not just a game. It's making it fun and a little bit more lighthearted. If we can lighten it, but still make it skilled intervention, I'm not in there to play games and win. But having a give and take, a little competition, some laughter, some humor, while we're doing the intervention. To me, that's a lovely session.   Dave Brancamp: One of the things Katie, we found, too, is there's not a lot of good tests out there for math to diagnose the problem. You can find out by taking the different tests, and you and Tammy know the exact names, but they'll say, “Well, Dave has a problem doing math.” But now where do I start? Is a whole different game, because they build, as we said earlier, and if I don't start at the right spot the building block, I get a sense of failure immediately, because I can't do it, whereas you need to just keep backing up, just like you do in language, you keep backing up till you find my starting point. And that's one of the areas we'll maybe talk about later, is those things we're trying to figure do we work on finding a better way to assess the math, to truly know what's Dave or your client or whoever, whatever they're doing, because sometimes it could be simply the language, like we had with the one gentleman who has great math skills.   Katie Strong: Right.   Dave Brancamp: And others could be I can't even tell the difference between these two numbers, which is larger or smaller. And so now we have to start back at what we call basic number sense. It can be anywhere in that game, and it's like, well, they can't add. Well, do we know they can't add? Or do they just not recognize that six is smaller than eight.   Tami Brancamp:  Or how did you let them tell you the answer. If you only get a verbal response versus writing response, or, you know, selecting from four choices, you know. All of those give us different information when you're when you're having to blend a language disorder and a numeracy disorder.   Dave Brancamp: Because that one gentleman, he struggles immensely with anything with a two in it, so 20s, just…so you could easily say, “Wow, there's no way this man has math skills.” I mean he's doing complex fractions. He just couldn't tell you it's one over two. It was be like, I don't know what that is called.   Katie Strong: Fascinating.   Dave Brancamp: We enjoy the game part. And one of the pieces in this last research we did that was a new thing, right? We didn't even think of it prior was what we call a home program. Taking the game we did, putting it in friend aphasia friendly language with pictures so they could practice them.   Katie Strong: Okay.   Dave Brancamp:  Because we would not see them for like a two they was every two weeks. So, some could practice. I would say our Level 1 -  our folks working on foundational sets practiced more than are more advanced. Which was very fascinating.   Tami Brancamp: What we were doing in this research, the most recent one, we would encourage people to, you know, take a photo, take a screenshot of the work we're doing. But we also did it too, and then we put it into a page with an explanation, and then we would send it so that they could, ideally practice with a family member or a friend, or by themselves. You know, that's also a variable for people, right?   Dave Brancamp: And what we found in it, they needed more pictures. In our first attempt, we didn't put as many. So we would ask them, “since you wanted this, did that help?” “Not really.” They're honest.   Katie Strong: Yeah.   Dave Brancamp: We appreciate that. And they're like, Well, what? Why didn't it like, well, it, even though we tried to make it as aphasia friendly language, it was just too much word   Tami Brancamp:  Too many words.   Dave Brancamp: Too many words. So then we started asking, “well would more pictures help?” “Yes.” So we did that. So they helped us. It was amazing to watch.   Tami Brancamp: So that research project will we can get to down the road once we figure out what was going on. What we did share with you was the survey that we did with speech language pathologists from the United States and the United Kingdom. So we thought, well, Carolyn's there, and we kind of look at math a little bit similarly. So we had 60 participants who completed the study. We want to know, like, do you treat people with aphasia who also have math difficulties? If so, what are you doing? Dave and I still wanted to look at the attitudes and perception, because I still believe that's an influencing factor. But we also wanted to get a good sense, like when you are working with people with aphasia, who have number difficulties, what difficulties are you seeing? And then what are you doing? What do you use to assess?  And what are some of the barriers? So it gave us a nice overview, and that one's out for review currently. Anywhere from like, how many of you work on numeracy difficulties? About 35% responded with rarely, and 40% responded with occasionally, and 17 said frequently. And also, there was no difference between the countries.   Katie Strong: Oh, interesting.   Tami Brancamp: Yeah, I thought so too.   Katie Strong: But I also think too, you know, I mean, there really isn't a lot out there instructing SLPs on how to do this work in an evidence-based manner. So that makes a little bit of sense.   Tami Brancamp: It did, because I still felt the same way for myself, like, “Where do I go to learn how to do this?” Okay. I'm married to a math teacher, so I'm learning right? It's a lot of give and take. And Carolyn, our partner, she's very good about when we're talking about this she's like, “But not everybody has a Dave on their shoulder.” Like, “No, they do not.” Because even today, I'm still a little cautious, like if I had to go do all this solo, I have some holes that I want, and those are the things I want to help us create for future training opportunities and education continuing ed that would help clinicians who really want to do this and they have a client who wants to work with it, right?   Katie Strong: I hope that's a large number of people, because I think, you know, I think that this is really a significant challenge that I hear so often from support group members or people that I work with who have aphasia.   Tami Brancamp: I really think that's why we keep going, because we hear it from our we hear it from our clients.   Katie Strong: Yeah.   Tami Brancamp: We're not hitting it as much in acute care, for sure, rehab, you might get a little sample that is going on, but it's usually that outpatient. And then the longer term, like the they have some of the big needs met. And then we've got time to maybe look at math. But for some people, math should have been math and language together could have been hit earlier. But who's to say, you know?   Dave Brancamp: Well, you would know it best because I've asked when we first started this there would be like one, Tammy would give me one of her classes, and I would talk to them about math and absolutely deer in the headlight looks, “Oh my gosh, what are you going to do?” to by the end realizing “We're going to make this as fun as we can. We're going to use dice and cards, and we're going to do pretty much what we call foundational adding subtracting skills that they were welcome”, but you already have so much in your course to do that we just don't even have time. So that becomes this very interesting, because, you know, one of the big questions Tammy always asked me is, “Well, how can I know this pedagogical, or the reason behind?” I know they'll be able to hear but, I mean, I've done this now for 30 plus years, so there's a lot in my head that I have to figure out, how do we do this? So I can see this is the problem by how they addressed it without them having to take a whole other set of courses.   Tami Brancamp: Yeah, we can't. There is surely not room for whole courses. So it's got to be embedded in existing coursework, or continuing ed opportunities after training.   Katie Strong: Or both, right?   Tami Brancamp: Yeah, I think both. Some of those barriers that we found people saying was, you know, there's not training on it, which I agree.   Dave Brancamp: There's not the resources.   Tami Brancamp: Yes, there's not the resources. And are the tests that people use. They have some sampling of math. But my question always is, “Okay, so I give this little bit of math in my aphasia test or something else like and now, what? Well, I know what they can't do, but what does that mean? And how might I support them for relearning?” I found it more helpful to look at it from a developmental perspective. I'm going to learn a, b, c, d, and I'm going to learn x, y, z, and then it helps me understand, like, “Where might I start?” Because I don't have to go down to counting dots, right? That number sense larger, less than visually. If that's not where the client needs to be. But learning where they need to be, we need better assessments for that. I don't know if that's something we're going to be able to tackle or not. I mean, Dave spent quite a big part of his professional career, developing assessments. So, it would be logical. But there's so many pieces to do.   Katie Strong: Right? It's a big it's a big undertaking. Dave Brancamp: Well, there's so much that you gain by finding out from the client how you did the problem. It could be four plus six is what? and they write two. Well, I need to know why you think it's two. So did you think that was subtraction? Because they just didn't see the plus symbol. Well, you know? Well, then they have some good math. There's some good math there. They did the math correctly if they subtracted it. It's not the answer I'm looking for. And so could they say, you know, when you asked it if you were a person and he's like, “Katie, so if I gave you six things and gave you four more, how many your total?” Do you know what that even meant to do? These things that just gives us clues to where your math might be and for unfortunately, for a lot of us, which makes it hard for me, I feel bad that they didn't have the experience is ones and zeros have some very powerful meanings in math that unfortunately, scare a lot of folks.   Katie Strong: Yeah, right.   Tami Brancamp: I never learned the fun stuff of math, you know. There's some tricks and some knowledge and some skills that I, you know, good math teachers will teach you, and I just didn't really learn those. So, Dave's teaching me just because I were doing this together? I don't know. I kind of was thinking like what we talked a little bit about, what does the intervention look like?   Katie Strong: Yeah.   Tami Brancamp: Gamification, making it fun, not using workbooks. We're hoping that we could utilize some of the home programs that we've created, and share those as part of the teaching.   Dave Brancamp: And like the game. I think I told you that we did with that one gentleman with Krypto. It could simply be like a target number or something of that nature, but it's fun to have when we did with our both groups with Virtual Connections, or our research groups, other people could find out, like, you could solve it one way, Katie. Tammy could do it a different way, and I could do it a completely different way. And it was fascinating to watch the groups, like, I had no idea you could do it there. And that's what we need to hear So that people go, “Oh, you don't have to do it just one way.” Because I, unfortunately, and some are my colleagues, they forced, “I need you to do it x way.” It's like, “Well, okay, maybe to start. But now let's open the door to all these other ways you can, like, add a number or whatever.” And because it always fascinates me when we do, is it multiplication or subtraction? Now I forget, but one way Tammy is, like, “I never learned it that way. I always…” and, you know, it was just how she grew up. It was what you were taught.   Tami Brancamp: Well, like multiplication. When I'm multiplying multiple numbers, it's like, I'm kind of just adding multiples of things. So, how I get to the answer is very different than how Dave does, yeah, and we've had experiences with care partners, who we were doing some of the pilot work, who felt very strong that their way was the only way. Is this some generational differences? I suspect there's some of that, but it's also just, it's personality. This is how I know how to do it, and this is how it should be done. Well, not necessarily.   Katie Strong: It really mind blowing for me to be thinking about. I mean, I know that, like, you can teach things in different ways, but I just didn't really think about it from a math standpoint, because, probably because I know how to do things one way. If I know how to do it, it's probably one way, versus having more versatility in “If this doesn't work, try something else.”   Dave Brancamp: But like on a deck of cards at least the ones we use, they'll have, like a seven of diamonds. There's seven little diamonds on that card. Well, nothing else. Put your finger to them. There's nothing wrong with counting 1 2 3 4 5 6 7. Now, when you move over to the three, go 8 9 10, and there's your answer. They're like, “I can do that?” “I'm like, sure you can!” I can use my fingers? You know, it's, it's those, it's those little things that, unfortunately, probably for a lot of us and a lot of our clients, went through, at least in my experience, in math as we went through school, we took away those, what we call manipulatives in math, that you learn it right, bringing them back now, so that they're like, “Oh, I can do this”” So they can see it, or they can write it in a different way, or, you know, whatever it takes to help them. That's one of the pieces that's so amazing.   Tami Brancamp: We definitely support a multi modal approach. Not just one way.   Katie Strong: Which, I think the clinicians who are listening to this conversation will feel like, “Oh, I do a multi modal approach in all of the other things that I do in my interventions.” And so, you know, that makes sense.   Dave Brancamp: And that's where we saw that piece of saying that we're trying to unite math and language. The two of those do play together. You know, it's like because you just said you spend weeks and weeks with all your future clinicians training them on all these skills and language, so many of those will play out just as well in math, except to do it in a different way.   Katie Strong: Mmm. So we've talked about what the intervention might look like, and we'll be excited to see what comes out from your projects that you're in the process of analyzing but looking ahead, what excites you most about where this field could go?   Dave Brancamp: Oh my, that's the question!   Tami Brancamp: There's a lot of work to be done. It actually is…it's fun. We are wondering, you know, how might it be if it's on a one on one, a more traditional model, right for our outpatient settings, versus small groups. Katie Strong: I'll say this. I should have said it earlier, but for those of you listening, I'll put in a link to Virtual Connections and if you're interested in seeing Tammy and Dave's math Aphasia + Math.   Dave Brancamp: Yeah, it's aphasia plus math. It would be Level 1 or 2. They can come watch the whole thing. It's fascinating to watch them how they work.   Tami Brancamp: They are best teachers, yep, without a doubt.   Dave Brancamp: To your last question, “So that's with the clients?” But you know, there's been and we've talked on and we've touched on, like, “how do we help our clinicians?” And then the unfortunate side of that stool that sometimes gets forgotten is, what could we do for our caregivers? Does this help? Because we've all been taught differently. so sometimes you might look at one of the gamifications we did and went, “Oh, I can't do that. That's not how I add.” We have a very set format, or do they understand the language? Do we make it clear enough. So, you know, we're I think that's a great question, because then we get torn to just time in the day to say, “But I want to still work with my clients, but we need to help clinicians so they can help us, and don't forget the caregiver in there.” I know it's not an easy answer. It's not the it's nothing nice and smooth, but it's kind of the one that we've been really what is to what are we doing.   Katie Strong: And probably also why it this hasn't, there aren't tons of resources already developed, right? That it is complex.   Dave Brancamp: Well, and I will tie back to our attitudes. What we found, we were fortunate enough to do….     Tami Brancamp: IARC. The International Aphasia Rehab Conference. we presented there.   Dave Brancamp: So some of our beginning there's an awful lot of interest out of Australia and Europe. But Australia and Europe, and I'm not trying to sound bad or negative, but they take look at math very differently than like England and the United States for sure does. That's a natural like thought, we don't accept the term. “I don't do math well.” They don't like to say that. There's an increased interest, at least in those two areas of the world, to when we but we gotta strengthen this, this is important. So, we've found that very fascinating, that some of our folks who've drawn an interest and set out of this come out of the main countries of Europe, or from Australia, because they don't mind talking about a subject that we often go, “I'm good at this, right? Let Dave solve it.” And it's like, well, but I don't have the skill set that all of you SLPs have.   Tami Brancamp: In our earlier conversations, we touch on the fact that United States, it's okay for me to say, you know, “I don't do math, right?” It's okay, and it's sort of accepted in some cases, it's kind of a badge of honor in some ways. But if I were to say, “Oh, I can't read” you know, that's we one. We want to help if somebody admits it. But there's a personal sense of shame attached. So, in our country, I believe the perceptions are different. You have the person who's had the stroke, has survived the stroke, has the aphasia, and now also has the math difficulties. That's a lot to navigate, and I respect in our in our world, as a clinician, I can't address all of it. So following that Life Participation Approach, we're going to let our clients be our guide. Support, train, and look at where their priorities are. And it's never enough. There's never enough therapy, never enough opportunity to be in a group environment, because not everybody has access to that, you know, but I think, “Where can I make a difference?” Like, that's probably my question. Like, I can't fix the world, so let me keep backing it down, backing it down, backing it down. And if I can make a difference with 5, 10, 15, 20, people, Hey, and then let those ripples go as they go out and make a difference and learn. I think that, in itself, is powerful.   Katie Strong: Beautiful, and certainly is conjuring up Audrey here. Well, I've got one last question for you as we wrap it up. But you know, what would you say to an SLP, who's listening right now and thinking, I want to help my clients with math, but I don't know where to start.   Tami Brancamp:  So one of, I think one thing for me is you do know basic math. You know everyday math. You do know how to do this.  So one just start. You can get a little assessment. You can use the existing ones that are out there with our aphasia batteries or the Numerical Activities for Daily Living.   Dave Brancamp: I would say, a deck of cards are not hard, you know, hopefully they have or some dice, yeah, and use those to generate the numbers. Or bring in, like, when they want to do tips, we would often just bring in receipts of anything and just say, “Let's say something cost $18.72. Round it up to 20 and make it a friendly number.” So it's around 20, So it's a little bit easier for them to grab onto and hold, and it's okay to say, because we've done it in our own sets going through, “Oh, wait a minute, six plus six is not 13. Look at what I did here. I let me, let's check this and add it.” Because sometimes you'll hear just even, you know, like when any of us are doing something, you look and go, oops, I made a mistake.   Tami Brancamp: Okay, right?   Dave Brancamp: It's all right, hey, to make mistakes and say, that's what we all do. And then, you know, but I mean to me, it's if we can get, like, if you want to use one or two problems off a worksheet, use it as a driver to start discussion and say, “So what can we do?” And see if they can do anything. Because sometimes it's amazing what we'll find out is just knowing that 16 is a bigger number than just 12 is let them and then what's the difference between right there, you could figure out subtraction if they know it or not. And we often will in if they have a chance to look on the website or any of this stuff, we'll take out, like all the face cards, we'll take out the 10. Keep moving it down to numbers that they're comfortable with, like dice will only be the numbers one to six, yeah, but if I use two dice, I could make some interesting two digit numbers, right, that are in that range. So it's just things that make it so they can grab on. And then you can start adding and changing rules and some of the math games they may have seen, they just adjust them so that they have access points. The true rules of Krypto is, you must use all five cards in order to get a point. Well, we just change it usually is two, right?   Tami Brancamp: Like we do for everything we can modify.   Katie Strong: I love this. And I mean, I'm thinking, most clinics have a deck of cards and dice.   Tami Brancamp: In most households in general, not but in general, you're going to have access to those tools. We didn't want people to have to go buy crazy stuff. I think there's one challenge I do want to think about and put out there. So, our new clinicians who are graduating, let's say they're in their mid-20s, and I know there's a range they are doing online banking. How are they going to support an older adult?   Katie Strong: Oh, right.   Tami Brancamp: Very structured and rigid in their checking account. I think we have to think about some again, different ways. None of the students that I teach today, and even our own son, they don't have a checkbook. Yeah, they don't write checks. So that's gonna introduce another variable down the road, but in the meantime, cards, dice, numbers, gamification, simplifying, watching language, thinking about executive function, number of steps, how we how we speak, the instructions. Give the directions. It's language.   Dave Brancamp: And ask the client what they think or what they might have heard, because it's interesting what they would have, what we've learned from them as well.   Katie Strong: Thank you so much for being a part of our conversation today, and for the listeners, I'll have some links in the show notes for you to check out for some info on Aphasia + Math. Thank you.   Tami Brancamp: Thanks for having us.   Dave Brancamp: And thanks for playing with us too. Thank you. Katie Strong: On behalf of Aphasia Access, thank you for listening. For references and resources mentioned in today's show please see our show notes. They're available on our website, www.aphasiaaccess.org.There you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@aphasiaaccess.org. For Aphasia Access Conversations, here at Central Michigan University in the Strong Story Lab, I'm Katie Strong.   Resources Aphasia + Math focuses on strategies for the rehabilitation of everyday mathematics in people with aphasia. Tami and Dave focus on four pillars to support this work: Influencing Elements (math literacy, learning environment, aphasia severity); Math and Language (receptive & expressive language, cognition including executive function and  memory); Foundational Math Skills (use of linguistic and numerical symbols, lexicon, syntax, semantics); and Aphasia Friendly Math Activities (gamification in learning,  understanding math language, opportunities for communication). Their goal is to unite math and language. Contact Tami tbrancamp@med.unr.edu   Join the Aphasia + Math Facebook Community Join an Aphasia + Math session on Virtual Connections   Brancamp, T. & Brancamp, D. (2022). Exploring Aphasia + Math. Aphasia Access 24-Hour Virtual Teach-In. https://www.youtube.com/watch?v=2mGSOJzmBJI   Girelli, L. & Seron, X. (2001). ) Rehabilitation of number processing and calculation skills. Aphasiology, 15(7), 695-71. https://doi.org/10.1080/02687040143000131 https://www.researchgate.net/publication/32888331_Rehabilitation_of_number_processing_and_calculation_skills#fullTextFileContent   Tapia, M. (1996). Attitudes toward mathematics inventory. https://www.academia.edu/29981919/ATTITUDES_TOWARD_MATHEMATICS_INVENTORY  

In this free-for-all-Friday Trent talks about the speech disability aphasia and how his wife is healing from it.

Have you ever had a word on the tip of your tongue? Imagine that feeling magnified, a constant state of being. That is the reality for millions living with aphasia. In this episode of English Plus, we journey into one of the most fascinating and misunderstood topics in human psychology: aphasia and language deficits. We're asking the burning questions: What is aphasia and what happens in the brain to cause it? What's the startling difference between Broca's (expressive) and Wernicke's (receptive) aphasia? What is the profound psychological toll on a person's identity and relationships? How does the brain's amazing ability for neuroplasticity offer hope for recovery? Beyond the science, we'll also focus on elevating your English. We'll break down 10 advanced vocabulary words and phrases like "neuroplasticity," "inextricably linked," and "cognitive dissonance" so you can use them with confidence. Plus, stick around for a practical speaking lesson on "scaffolding" to make you a more resilient and fluid communicator. This isn't just a lesson; it's an exploration of identity, connection, and the incredible power of the human spirit. To unlock full access to all our episodes, consider becoming a premium subscriber on Apple Podcasts or Patreon. And don't forget to visit englishpluspodcast.com for even more content, including articles, in-depth studies, and our brand-new audio series and courses now available in our Patreon Shop!

Take aways: Learn about Hilary and Steve's journey to enhance care for people with aphasia. Learn about communication access as a health equity issue. Identify systematic gaps and the disconnect between training and real world needs of people with aphasia. Learn about the development of the MedConcerns app. Get sneaky! Learn how the MedConcerns app can serve four functions simultaneously: 1) meeting the needs of someone with aphasia 2) serving as a tool that providers can use to communicate with people with aphasia 3) providing education to providers who learn about aphasia as they use the app 4) bringing SLPs and other providers together to meet the needs of people with aphasia   Welcome to the Aphasia Access Conversations Podcast. I'm Jerry Hoepner. I'm a professor at the University of Wisconsin – Eau Claire and co-facilitator of the Chippewa Valley Aphasia Camp, Blugold Brain Injury Group, Mayo Brain Injury Group, Young Person's Brain Injury Group, and Thursday Night Poets.  I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Hilary Sample and Dr. Steven Richman to discuss their app, MedConcerns. We're really excited to share this with you, so I'll jump into introducing them.   Hilary G. Sample, MA, CCC-SLP Hilary is a speech-language pathologist, educator, and co-creator of MedConcerns, a communication support app that helps people with aphasia express medical concerns and participate more fully in their care. The app was born out of her work in inpatient rehabilitation, where she saw firsthand how often individuals with communication challenges struggled to share urgent medical needs. Recognizing that most providers lacked the tools to support these conversations, she partnered with physician Dr. Steven Richman to create a practical, accessible solution. Hilary also serves as an adjunct instructor at Cleveland State University.   Steven Leeds Richman, MD Dr. Steven Richman is a hospitalist physician and co-creator of MedConcerns, a communication support app that helps people with aphasia express medical concerns and participate more fully in their care. With nearly two decades of experience in inpatient rehabilitation, he saw how often communication barriers prevented patients from being heard. In partnership with speech-language pathologist Hilary Sample, he helped translate core medical assessments into an accessible tool that supports clearer, more effective provider-patient communication.     Transcript: (Please note that this conversation has been auto-transcribed. While we do our best to review the text for accuracy, there may be some minor errors. Thanks for your understanding.)   Jerry Hoepner: Well, Hello, Hillary and Steve. Really happy to have you on this aphasia access conversations podcast. With me, I'm really looking forward to this conversation. It's maybe a year or 2 in the making, because I think this was at the previous Aphasia Access Leadership Summit in North Carolina. That we initially had some discussions about this work. And then life happens right? So really glad to be having this conversation today. Hilary Sample: And we're really glad to be here.   Jerry Hoepner: Absolutely. Maybe I'll start out just asking a little bit about your background, Hillary, in terms of how you connected with the life participation approach and aphasia access and how that relates to your personal story.   Hilary Sample: Sure, so I haven't been in the field long. I graduated in 2019 and began my career immediately in inpatient rehab. I have to remember. It's talk slow day, and I'm going to make sure that I apply that as I speak, both for me and for listeners. So I began on the stroke unit, primarily in an inpatient rehab setting, and I've worked there for the majority of my career. I came in as many, probably in our field do, trained and educated in more of an impairment based approach but quickly when you work with people, and they let you know who they are and what they need. The people that I worked with on the stroke unit, the people with aphasia let me know that they needed more of a life participation approach. You know I learned how vital it was to support communication and to help him, you know, help them access their lives, because most of the time I entered the room. They had something they wanted to communicate, and they had been waiting for someone who had those skills to support communication in order to get that message across. So it wasn't about drills it was about. It was about helping them to communicate with the world, so that I spent more and more time just trying to develop my own skills so that I could be that professional for them and that support. And then that took me. You know that it just became my passion, and I have a lot of room to improve still today, but it's definitely where my interest lies and at the same time I noticed that in general in our hospital there was a lack of communication supports used, and so I thought that in investing in my own education and training, I could help others as well. And so I started doing some program development to that end as well with training and education for healthcare staff.   Jerry Hoepner: I just love the fact. And actually, our listeners will love the fact that it was patients who connected with you, people with aphasia, who connected with you and encouraged you to move towards the life participation approach, and how you learn together and how that's become your passion. That's just a really great outcome when people can advocate for themselves in that way. That's fantastic.     Hilary Sample: Yeah, it really meant a lot to me to be able to receive that guidance and know that, you know there's an interest in helping them to let you know what they want from therapy, and that was there. But a lot of times the selections were impairment based, and then we. But there was something wrong, and we needed to uncover that. And that was, you know, that was the push I needed to be able to better support them.   Jerry Hoepner: Yeah, that's really great, Steve. I'm interested in your story, too. And also how you came to connect with Hillary.   Steve: I started as a trained as a family physician, had a regular outpatient office for a number of years, and then transitioned into inpatient rehab. That's where I really started to meet some people with aphasia. For the 1st time. Hilary and I have talked a few times about my training and education about aphasia before we met each other, and it was really minimal in Med school. They had lectures about stroke and brain injury, and some of the adverse effects you might get from that. And they, I'm sure, mentioned aphasia. But I really don't recall any details, and if they did teach us more, it would just nothing that I grasped at the time. So I would walk into these patient rooms, and what I would normally do for my trainings. I would ask people all these open, ended questions to start with, and then try to narrow down, to figure out what their problems are, and with people with aphasia, especially when they have minimal or no language skills. They couldn't. I was not successful at getting useful information out, and I remember walking out of those patient rooms and just being frustrated with myself that I'm not able to help these people, and the way I can help everyone else, because if I don't know what's going on. you know. How can I? It was really challenging and I really didn't know where to go. I talked to a few other doctors, and there didn't seem to be much in the way of good information about how to move forward. Eventually I met Hillary, and we would have these interesting episodes where I would talk or try to talk with the patients and get minimal, useful information. And Hillary would come back and say, they're having this problem and this concern. And with this medicine change. And how do you do that? How and that kind of started our us on the pathway that we've taken that recognition from my end that there's a lot that can be done. And the yeah.   Jerry Hoepner: Yeah, I love that story, and it's a really good reminder to all of us that sometimes we forget about those conversations, the conversations with physicians, with other providers who might not know as much about aphasia. I'll just tell a really quick story. My wife used to work in intensive care, and of course she had been around me for years, and they would have someone with aphasia, and her colleagues would be like, how do you even communicate with them, and she would be coming up like you, said Steve, with all of this information about the patient, and they're like, where are you getting this information. The person doesn't talk.   Hilary Sample: Yes.   Jerry Hoepner: And that just emphasizes why it's so important for us to have those conversations, so that our all of our colleagues are giving the best care that they can possibly provide.   Hilary Sample: That's a great story. That was very much like almost verbatim of some of the conversations that we initially had like, where is this coming from? They don't talk, or you know they don't have. Maybe they don't have something to say, and that's the assumptions that we make when somebody doesn't use verbal communication. You know, we quickly think that maybe there's not something beneath it, you know. I have a story as well. So what led to a little bit more toward where we are today. sitting in those rooms with people with aphasia and apraxia and people with difficulty communicating. There's 1 that stuck out so much. She was very upset, and that it was. And I we had just really developed a very nice relationship, a very supportive relationship she kind of. She would let me have it if she was upset about something. We had really honest conversations and it and it was earlier on to where I was stretching my skills in in using communication supports, and she really helped me grow. But I remember being in her room one day, and she had something to share. And this is a moment that repeated itself frequently, that the thing that needed to be shared was medical in nature, you know, in inpatient rehab. That's a frequent. That's a frequent situation that you run into. And we sat there for maybe 15 min, maybe more. And we're working on getting this out. We're narrowing it down. We're getting clarity. We're not quite there yet, as I said, I'm still new, and but the physician walks in and we pause. You know I'm always welcoming physicians into the into therapy, because I really see that we have a role there. But and talk slow. Hilary, the physician, asked an open-ended question like Steve was talking about asking those open-ended questions as they're trained to do, and it was a question that the person with aphasia didn't have the vocabulary available to answer, and before I would jump in, that person shrugged her shoulders and shook her head that she didn't have anything to share with them, and I was like, but we had just been talking. You know, there's definitely something, and I think I just sat there a little bit stunned and just observing more. And you know the physician finished their assessment mostly outside of verbal communication, and left the room, and then I spoke to her, and we. We tracked down what the rest of her concern was, and clarified it, and then I found the physician who was not Dr. Richman, and I shared all the things that they had told me that she had told me, and I remember her saying I was just in there. She didn't have anything wrong. and I and I was, you know, I told her, like the communication supports that I used, and you know we got that. We moved forward with the conversation. But there were a few things that stuck out to me in that, and one was the way that the physician was communicating wasn't using. They weren't using supports. For whatever reason, I didn't have that knowledge yet. We dove into the literature to learn more later on. The second thing was that the person with aphasia seemed to give up on the provider, knowing that since supports weren't being used. It wasn't going to be a successful communication attempt. So why even bother, and that definitely fits her personality. She's like I give up on you. And the 3rd thing was that the education about that somebody has something to share the education about. Aphasia was lacking, so you know that the person's still in there. They still have their intellect, their identity, their opinions, beliefs. But they didn't have the ability to communicate that piece seemed to be missing on the part of the provider, because they were saying they didn't have anything to share. So, it was like, I said that situation happened repeatedly, and very much. Sounds just like yours, but it hit me how much there was to do. And so, hearing, you know Steve's experiences that are on the other side of that. Such a caring, the one thing that led me to want to speak to Steve is that he's a very compassionate caring physician, so it's not a lack of care and compassion. But what else was going on what led to this, and we started learning that together. It was really interesting for me to learn how Hillary's 1st assumption is. Why aren't these physicians using communicative supports or other things that we were never taught about? The assumption that the docs know all this, and there's plenty we don't know. Unfortunately, there's, you know there's so much out there.   Steve Richman: The other thing Hillary touched on that was so true in my experience, is here. I'm meeting people that had a significant event, a traumatic brain injury, a bad stroke. And we're so used to judging people's intelligence through their speech. And they're not speaking. And it's so easy to start thinking there's just not much going on up there, and I didn't have the education or information or training to know for a long time. That wasn't the case until my dad had a stroke with aphasia. And so yeah, there's still plenty going on there just hard to get it out. And even as a medical provider, I really wasn't fully aware of that. And it took personal experience and learning from Hillary to really get that. it's still there just need to find out how to help them get it out.   Jerry Hoepner: Yeah, I think that's a rather common story, especially for people with aphasia. But even for people without aphasia, that sense that the doctor is coming in, and things have to happen. And I know I'm sitting here with Steve, who is very compassionate and wants to ensure that communication. But I think there's a little bit of fear like, oh, I can't get it out in this context, and just bringing awareness to that, and also tools. So, tools in education. So those physicians can do the work that they need to do and get that knowledge that they may have never been exposed to, and probably in many cases have never had that training to communicate with someone so like you, said Steve. How are you supposed to know when they didn't train us in this? And I guess that brings us back around to that idea that that's part of the role of the speech language pathologist and also kind of a vacancy in tools. Right? We're. We're just missing some of the tools to make that happen consistently across facilities and across people. So, I'm really interested in hearing a little bit about the tools you've created, and kind of the story leading up to that if you if you don't mind sharing.   Hilary Sample: Absolutely. 1st I'll share. There's a quote, and I'm not going to remember who said it. Unfortunately, I'll come up with it later, and I'll make sure to share with you. But that healthcare is the medium by or I'm sorry. Communication is the medium by which healthcare is provided, or something to that extent. We need communication in order to ensure equal access to health care. And like you said that gap, it's really big, and it's a systemic issue. So, leading up to us, coming together, we had those experiences on both of our ends. I realized that I wasn't a physician. I already knew this, but I also I was trying to provide communication support to enable them to communicate something on a topic that I'm not trained in. In order to really give what it's due right? I don't know what questions that Steve is going to ask next, you know I tried, but I and I tried to listen, but I didn't always have, you know. Of course, I don't have that training, so know your limits right. But I did. The general overarching method that I was using was we'd have concerns to choose from, including the question mark that enabled them to tell. Tell me that you're way off, or you didn't guess it, or it's not on here. And then narrow choices that I try to come up with, and we'd move on like that. And anytime somebody appeared to have a medical concern. There's those general topics that you would try to see if it's 1 of these things. One of these concerns, and then those would generally take you to a series of sub questions, and so on, and so forth. So, I recognize that this was repeatable. I also, at the same time as I shared, was recognizing that communication supports weren't being used. And that doesn't. That doesn't end with, you know, a physician that's also nurses nursing aides. That's therapists, including SLPs, and you know, so I'm doing a thing that can be repeated. Why not stop recreating it every time I enter the room and make it into something that I can bring with me a prepared material that I can bring with me and ideally share it with others. So, I again, knowing my limitations, know what I have to bring to that equation. But I knew that I needed to partner with someone that cared just as much but had the medical knowledge to inform that tool. So at 1st it was a print little framework that I brought, and what happened is, I came up to Steve, and I let him know what I was thinking, and he was open and willing to work together on this, and Hillary showed me these pictures that were kind of showing some general medical concerns, and brought up the whole concept and we initially were going for this pamphlet booklet idea, you know. If you have this concern, you go to this page to follow it up with further questions, and then you go to this other page to finalize the subs. We realized there was a lot of pages turning involved to make that work, and we eventually turned it into an app where you could take your concern, and we start with a general Hello! How are you? You know? Kind of what's the overall mood in the room today. And then what medical concerns do you have? And then from those concerns, appropriate sub questions and sub questions and timeframes, and the stuff that you would want to know medically, to help figure out the problem. And then go ahead. I'm sorry.   Jerry Hoepner: Oh, oh, sorry! No, that's terrific. I appreciate that that process and kind of talking through the process because it's so hard to develop something like this that really provides as much access as is possible. And I think that's really key, because there's so many different permutations. But the more that you get into those the more complex it gets. So, making it easy to access, I think, is part of that key right?   Hilary Sample: One thing that I'm sorry. Did you want to say? Yeah, I'll say, okay, 1. 1 part of it. Yes, the accessibility issue. Every provider has a tablet or a phone on them, and many of our patients and their families also do so. It made it clear that it's something that could be easier to use if that's the method somebody would like to use, but also having a moment where my mind is going blank. This is gonna be one of those where we added a little bit. This is what you call a mother moment.   Jerry Hoepner: Okay.   Steve Richman: The one thing that was fascinating for me as we were developing this tool is I kept asking why? And Hillary kept explaining why, we're doing different parts of it. And at this point it seems much more obvious. But my biggest stumble at the beginning was, why are these Confirmation pages. Why do we have to keep checking, you know? Do they mean to say yes? Do they mean to go ahead? And that education about how people with language difficulties can't always use language to self-correct. We need to add that opportunity now makes so much sense. But I remember that was a stumbling block for me to acknowledge that and be good with that to realize. Oh, that's really important. The other thing that Hillary said a lot, and I think is so true is in developing this tool. We're kind of developing a tool that helps people that know nothing about communication supports like myself how to use them, because this tool is just communication supports. You know, I hear these repeatedly taught me about the importance of layering the clear pictures and words, and the verbal, and put that all the well, the verbalizing, the app is saying the word in our case, so that could all be shared and between all that layering hopefully, the idea gets across right and then giving time for responses.   Jerry Hoepner: It sounds like the tool itself. Kind of serves as an implicit training or education to those providers. Right?   Hilary Sample: And there's the idea that I was missing when I had a little bit of.  So yes, all of those strategies. They take training right? And it takes those conversations. And it takes practice and repetition. And there's amazing, amazing things happening in our field where people are actually undertaking that that transformation, transforming the system from above right.   Jerry Hoepner: Right.   Hilary Sample: But one thing that a big part of this work was trying to fill the gap immediately. I know you and I had previously talked about Dr. Megan Morris's article about health equity, and she talks a lot about people with communication disorders, including aphasia. And you know there's and she mentions that people cannot wait. The next person pretty much cannot wait for that work to be done, though that'll be amazing for the people that come down the line, the next person, what can we do for them? So we also need to be doing that. And that's where we thought we could jump in. And so I think the biggest you know. The most unique aspect of MedConcerns is that, or of the tool we created is that it kind of guides the clinician, the healthcare provider, through using communication supports. So you know, when I go in the room I offer broad options, and then I follow up with more narrow choices, always confirming, making sure I'm verifying the responses like Steve talked about, and or giving an opportunity to repair and go back and then that I summarize at the end, ensuring that what we have at the end still is valid, and what they meant to say. And so that's how the app flows, too. It enables the person to provide a very detailed, you know, detailed message about what's bothering them to a provider that has maybe no training in communication supports, but the app has them in there, so they can. It fills the gap for them.   Jerry Hoepner: Absolutely. It's kind of a sneaky way of getting that education in there which I really like, but also a feasible way. So, it's very pragmatic, very practical in terms of getting a tool in the hands of providers. It would be really interesting actually, to see how that changes their skill sets over time but yeah, but there's definitely room for that in the future. I think.   Hilary Sample: We could do a case study on Dr. Richman.   Steve Richman: whereas I used to walk out of those patient rooms that have communication difficulties with great frustration. My part frustration that I feel like I'm not doing my job. Well, now you walk out much more proudly, thinking, hey, I able to interact in a more effective way I can now do in visit what I could never accomplish before. Not always, but at least sometimes I'm getting somewhere, and that is so much better to know I'm actively able to help them participate, help people participate. I love writing my notes, you know. Communication difficulties due to blank. Many concerns app used to assist, and just like I write, you know, French interpreter used to assist kind of thing and it does assist. It's it makes it more effective for me and more effective for the person I'm working with. It's been really neat to watch you know, go from our initial conversations to seeing the other day we were having a conversation kind of prepping for this discussion with you and he got a call that he needed to go see a patient and I'll let you tell the story. So we're prepping for this. A couple of days ago. I think it was this Friday, probably, or Thursday, anyways, was last week and I'm at my office of work and again knock on the door. Someone's having chest pain. I gotta go check that out. So I start to walk out of the room. Realize? Oh, that room! Someone was aphasia. I come back and grab my phone because I got that for my phone and go back to the room. And it's interesting people as with anything. People don't always want to use a device. And he's been this patient, sometimes happy to interact with the device, sometimes wanting to use what words he has. And so I could confirm with words. He's having chest pain. But he we weren't able to confirm. What's it feel like? When did it start? What makes it better. What makes it worse? But using the app, I can make some progress here to get the reassurance that this is really musculoskeletal pain, not cardiac chest pain. Yes, we did an EKG to double check, but having that reassurance that his story fits with something musculoskeletal and a normal EKG. Is so much better than just guessing they get an EKG, I mean, that's not fair. So, it would have been before I had this tool. It would have been sending them to the er so they can get Stat labs plus an EKG, because it's not safe just to guess in that kind of situation. So, for me, it's really saved some send outs. It's really stopped from sending people to the acute care hospital er for quick evaluations. If I if I know from the get go my patient has diplopia. They have a double vision, because that's part of what communicated. When we were talking about things with help from MedConcerns. Yeah, when I find out 4 days later, when their language is perhaps returning, they're expressing diplopia. It's not a new concern. It's not a new problem. I know it's been a problem since the stroke, whereas I know of other doctors who said, Yeah, this person had aphasia, and all of a sudden they have these bad headaches that they're able to tell me about. This sounds new. I got to send them for new, you know whereas I may have the information that they've been having those headaches. We could start dealing with those headaches from the day one instead of when they progress enough to be able to express that interesting.   Jerry Hoepner: Yeah, definitely sounds like, I'm getting the story of, you know the improvement in the communication between you and the client. How powerful that is, but also from an assessment standpoint. This gives you a lot more tools to be able to learn about that person just as you would with someone without aphasia. And I think that's so important right to just be able to level that playing field you get the information you need. I can imagine as well that it would have a big impact on medication, prescriptions, whatever use? But also, maybe even counseling and educating that patient in the moment. Can you speak to those pieces a little bit.   Steve Richman: You know, one of my favorite parts of the app, Hillary insisted on, and I'm so glad she did. It's an education piece. So many people walk into the hospital, into our inpatient rehab hospital where I now work, and they don't recall or don't understand their diagnosis, or what aphasia is, or what happened to them. And there's a well aphasia, friendly information piece which you should probably talk about. You designed it, but it's so useful people are as with any diagnosis that's not understood. And then explained, people get such a sense of relief and understanding like, okay, I got a better handle of this. Now it's really calming for people to understand more what's going on with them.   Hilary Sample: This is, I think you know, that counseling piece and education, that early education. That's some of the stuff that could bring tears to my eyes just talking about it, because it's; oh, and it might just now. So many people enter, and they may have gotten. They may have received education, but it may not have. They may have been given education, but it may not have been received because supports weren't used, or there's many reasons why, you know, even if it had been given, it wasn't something that was understood, but so many people that I worked with aphasia. That one of the 1st things that I would do is using supports. Tell them what's going on or give them. This is likely what you might be experiencing and see their response to that. And that's you know what aphasia is, how it can manifest. Why it happens, what happened to you, what tools might be useful? How many people with aphasia have reported feeling? And you might be feeling this way as well, and these things can help. And it's very simple, very, you know. There's so much more to add to that. But it's enough in that moment to make someone feel seen and you know, like a lot of my friends, or one of my friends and former colleagues, uses this, and she says that's her favorite page, too, because the people that she's working with are just like, yes, yes, that's it, that's it. And the point and point and point to what she's showing them on the app. It's a patient education page, and then they'll look at their, you know, family member, and be like this. This is what's going on this, you know, it's all of a sudden we're connecting on that piece of information that was vital for them to share. And it was. It was just a simple thing that I kept repeating doing. I was reinventing the wheel every time I entered the room, but it was. It stood out as one of the most important things I did. And so that's why Steve and I connected on it, and like it needed to be in the app. And there's more where that came from in the future planning. But we added to that A on that broad, you know, kind of that page that has all the different icons with various concerns, we added a feelings, concern emotions, and feelings so that someone could also communicate what's going on emotionally. We know that this is such a traumatic experience, both in the stroke itself, but also in the fact that you lost the thing that might help you to walk through it a little easier which is communicating about it and hearing education learning about it. But so those 2 tools combined have really meant a lot to me to be able to share with people, with aphasia and their families, and also another sneaky way to educate providers.   Jerry Hoepner: Yeah, absolutely.   Hilary Sample: Because that's the simple education that I found to be missing when we talked about training was missing, and this and that, but the like when Steve and I talked recently, we you know, I said, what did you really learn about aphasia? And you kind of said how speech issues? Right?   Steve Richman: The speech diagnoses that we see are kind of lumped in as general like the names and general disorders that you might see, but weren't really clearly communicated as far as the their differential diagnoses being trained as a generalist, we would learn about, you know, neurology unit stroke and traumatic brain injury. And somewhere in there would be throwing in these tumors, which are huge aphasia and apraxia and whatnot, and I don't think I recall any details about that from Med school. They probably taught more than I'm recalling, but it certainly wasn't as much as I wish it was.   Hilary Sample: and so that education can just be a simple way to bring us all together on the same page as they're showing this to the person that they're working with. It's also helping them to better understand the supports that are needed.   Jerry Hoepner: Sneaky part.   Steve Richman: Yeah, speaking of the sneaky part, I don't think I told Hilary this yet, but I'm sure we've all had the experience or seen the experience where a physician asked him, What does that feel like? And the person might not have the words even with the regular communication, without a communication disorder. and last week I was working with a patient that just was having terrible pain and just could not describe it. and using the icons of words on that he had a much better sense of. You know it's just this and not that, and those descriptors of pain have been really useful for people now without more with communication difficulties that I just started doing that last week. And it was really interesting.   Hilary Sample: You mentioned about how those interactions with physicians are can be. Well, it's not nothing about you guys.   Jerry Hoepner: It's the rest of the physicians.   Hilary Sample: No, it's the, you know. There's a time. It's the shift in how our whole system operates that it's, you know I go in and I'm like, I just need notes if I need to speak about something important to my physician, because, like, I know that one reason I connect so deeply with people with communication disorders is that my anxiety sometimes gets in the way of my ability to communicate like I want to, especially in, you know, those kind of situations. And so, you know, it can help in many ways just having something to point to. But we also saw that with people with hearing loss, which, of course, many of the people that we run into in many of the patients that we work with are going to have some sort of hearing loss. People that speak a little different, you know. Native language. You know English as a second language.   Jerry Hoepner: Absolutely.   Hilary Sample: There and then. Cognitive communication disorders, developmental disorders, anybody that might benefit with a little bit more support which might include you and me. You know it can help.   Jerry Hoepner: And I think you know the physician and other providers having the tools to do that education to use the multimodal supports, to get the message in and then to get responses back out again. I think it's really important. And then that process of verifying to just see if they're understanding it. Are you? Are you tracking with me? And to get that feedback of, I'm getting this because I think sometimes education happens so quickly or at a level that doesn't match, and they might not understand it. Or sometimes it's just a matter of timing. I know we joke about Tom Sather and I joke about this. We've had people come to our aphasia group before who traveled out to a place in the community and they're sitting next to you. And they say, what is this aphasia stuff everyone's talking about? And I'm like, you literally just passed a sign that said Aphasia group. Right? But it's so hard to ensure that the message does go in, and that they truly understand that until you get that Aha moment where you describe like, yes, that's me, that's it. And that's just so crucial.   Hilary Sample: yeah, it's 1 of the most important pieces, I think to name it doesn't for anything that anybody is dealing with that's heavy, you know, to have to have it named can really provide relief just because that unknown, you know, at least at least you can have one thing that you know. I know what it is, and then I can learn more about it. Once I know what it is, I can learn more about it, and I can have some sort of acceptance, and I can start that grieving process around it, too, a little bit better. But when it goes unnamed, and the other part of it is if you don't tell me that, you know like that, you can see and understand what I might be experiencing, I might not think that you know what it is either, and I might not feel seen. So just the fact that we're both on board that we know I have this thing. I think it can take a lot of the weight off. At least, that's what I've seen when it's been presented.   Jerry Hoepner: No or care, right?   Hilary Sample: Yeah. Yes. Exactly.   Jerry Hoepner: Yep, and that's a good a good chance to segue into we I know we picked on Steve a little bit as a physician but the system really kind of constrains the amount of time that people have to spend with someone, and they have to be efficient. I'll go back to that sneaky idea. This seems like a sneaky way to help change the system from within. Can you talk about that a little bit like how it might move care forward by.   Hilary Sample: Showing what's possible. Yeah, I'm sorry, sure. In part time. Constraints, unfortunately, are very real, and without the knowledge of training how to communicate or support communication. It's challenging for us to move us physicians to move forward, but with something like our app or other useful tools in a short amount of time you could make some progress. And then, if you could document, this is worthwhile time worthwhile that I'm accomplishing something with my patient. I'm helping to understand what their issues are, and helping to explain what we want to do. That all of a sudden makes the time worthwhile, although time is a real constraint. I think, is general. Doctors are happy to spend extra time. If it's worthwhile that's helping our patient. That's the whole reason we go into this is help our people. We help the people we're working with, you know. No one wants to go in there and spend time. That's not helping anybody. But if you could justify the time, because I'm making progress. I'm really helping them great go for it. It's worth doing, and the part about efficiency. So there's so many ways that this focus on. And it's not even efficiency, because efficiency sounds like some success was achieved, you know. But this, this we only have this amount of time. One of the one of the things that's kind of interesting to me is that it an assumption? I've seen a lot, or I've heard a lot is that using communication supports takes time. More time and I have watched plenty, an encounter where the physician is trying, and it takes forever. I've experienced my own encounters as I was growing and deepening my own skills, and where it took me forever. And that's because we're trying. We care, but we don't have something prepared. So when you have a prepared material, it not only helps you to effectively and successfully you know, meet that communication need and find out what is actually bothering the person that you're working with. But it enables you to move at a pace that you wouldn't be able to otherwise, you know. So if Steve and I have this kind of running joke that I'll let you tell it because you have fun telling it.   Steve Richman: With the MedConcerns app. I could do in a little while what I can never do before, and with the med concerns App Hillary could do in 5 min. What used to take a session? It's really.   Jerry Hoepner: Yeah.   Hilary Sample: Makes huge impacts in what we could accomplish, so less of a joke and more of just.   Jerry Hoepner: Yes, but having the right tools really is sounds like that's what makes the difference. And then that gives you time and tools to dedicate to these conversations that are so important as a person who's really passionate about counseling. One of the things we were always taught is spending time now saves time later, and this seems very much like one of those kind of tools.   Hilary Sample: Yeah. Well, we had one of the 1st times that we brought the prototype to a friend of ours who has aphasia. And it kind of speaks to the exactly what you just said. Spending time now saves time later, or saves money. Saves, you know, all the other things right is our friend Bob, and he doesn't mind us using his name. But I'll let you tell this story a little bit, because you know more from the doctor. Bob was no longer a patient of ours, but we had spent time with him and his wife, and they were happy to maintain the relationship, and we showed him that after he had this experience but he was describing experience to us, he was having hip pain. He had a prior stroke hemiplegic and having pain in that hemiplegic side. So the assumption, medically, is, he probably has neuropathy. He probably has, you know, pain related to the stroke, and they were treating with some gabapentin which makes sense. But he kept having pain severe. 10 out of 10. Pain severe. Yeah. And just. We went back day after day, and not on the 3rd day back at the er they did an X-ray, and found he had a hip fracture and look at our app. He was like pointing all over to the things that show the descriptors that show not neuropathic pain, but again, musculoskeletal pain and that ability to, you know, without words we could point to where it hurts. But then, describing that pain is a makes a huge difference. And he knew he very clearly. Once he saw those pictures he like emphatically, yes, yes, yes, like this is this, we could have, you know, if we could have just found out this stuff, we wouldn't have had to go back to the er 3 times and go through all that wrong treatment and this severe amount of pain that really took him backwards in his recovery to physically being able to walk. And things like that, you know, it's just finding out. Getting more clarity at the beginning saves from those kind of experiences from the pain of those experiences. But also, you know, we talked about earlier. If you have to sort of make an assumption, and you have to make sure that you're thinking worst case scenario. So in other situations where you send out with a chest pain and things like that, there's a lot that's lost for the person with aphasia because they might have to start their whole rehab journey over. They have to incur the costs of that experience. And you know they might come back with, you know, having to start completely over, maybe even new therapists like it's. And then just the emotional side of that. So, it not only saves time, but it. It saves money. It saves emotional. Yeah, the emotional consequences, too.   Jerry Hoepner: Yeah. Therapeutic Alliance trust all of those different things. Yeah, sure. Yeah. I mean, I just think that alone is such an important reason to put this tool in the hands of people that can use it. We've been kind of talking around, or a little bit indirectly, about the med concerns app. But can you talk a little bit about what you created, and how it's different than what's out there.   Hilary Sample: Yeah, may I dive in, please? Okay, so we yeah, we indirectly kind of talked about it. But I'll speak about it just very specifically. So it starts with an introduction, just like a physician would enter the room and introduce themselves. This is a multimodal introduction. There's the audio. You can use emojis. What have you then, the General? How are you? Just as Steve would ask, how I'm doing this is, how are you with the multimodal supports and then it gets to kind of the main part of our app, which is, it starts with broad concerns. Some of those concerns, pain, breathing issues, bowel bladder illness. Something happened that I need to report like a fall or something else and the list continues. But you start with those broad concerns, and then every selection takes you to a confirmation screen where you either, you know, say, yes, that's what I was meaning to say, or you go back and revise your selection. It follows with narrow choices under that umbrella concern, the location type of pain, description, severity, exacerbating factors. If you've hit that concern so narrow choices to really get a full description of the problem, and including, like, I said, timing and onset. And then we end with a summary screen that shows every selection that was made and you can go to a Yes, no board to make sure that that is again verified for accuracy. So, it's a really a framework guiding the user, the therapist healthcare provider person with aphasia caregiver whomever through a supported approach to evaluating medical concerns. So generally, that's the way it functions. And then there are some extras. Did you want me to go into those? A little bit too sure.   Jerry Hoepner: Sure. Yeah, that would be great.   Hilary Sample: Right? So 1 1. It's not an extra, but one part of it that's very important to us as we just talked about our friend Bob, is that pain? Assessment is, is very in depth, and includes a scale description, locations, the triggers, the timing, the onset, so that we can get the correct pathway to receiving intervention. This app does not diagnose it just, it helps support the verbal expression or the expression. Excuse me of what's wrong. So, it has that general aphasia, friendly design the keywords, simple icons that lack anything distracting, clear visuals simple, a simple layout. It also has the audio that goes with the icon, and then adjustable settings, and these include, if you know, people have different visual and sensory needs for icons per screen, so the Max would be 6 icons on a screen, although, as you scroll down where there's more and more 6 icons per screen. But you can go down to one and just have it. Be kind of a yes, no thing. If that's what you need for various reasons, you can hide specific icons. So, if you're in a setting where you don't see trachs and pegs. You can hide those so that irrelevant options don't complicate the screen. There's a needs board. So we see a lot of communication boards put on people's tray tables in in the healthcare setting, and those are often they often go unused because a lot of times they're too complex, or they're not trained, or they, for whatever reason, there's a million reasons why they're not used. But this one has as many options as we could possibly think might need to be on there which any of those options can be hidden if they need to be. If they're not, if they're irrelevant to the user language it's in. You can choose between English and Spanish as it is right now, with more to come as we as we move along, and then gender options for the audio. What voice you'd like to hear? That's more representative. And the body image for the pain to indicate pain location. There's some interactive tools that we like to use with people outside of that framework. There's the whiteboard for typing drawing. You can use emojis. You can grab any of the icons that are within the app. So, if you know we if it's not there and you want to detail more, you can use the whiteboard again. That needs board the Yes, no board. And then there's also a topic board for quick messages. We wanted to support people in guiding conversations with their health care providers. So, I want to talk to Steve about how am I going to return to being a parent? Once I get home, what's work life going to be. I want to ask him about the financial side of things. I want to ask him about therapy. I want to report to him that I'm having trouble with communication. I want to talk on a certain topic. There's a topic board where you select it. It'll verify the response. It has a confirmation page, but from there the physician will start to do their magic with whatever that topic is. And then, of course, there's those summary screens that I already detailed, but those have been very useful for both, making sure at the end of the day we verify those responses but then, also that we have something that's easy to kind of screenshot. Come back to show the physician. So show the nurse as like a clear message that gets conveyed versus trying to translate it to a verbal message at the end from us, and maybe missing something so straightforward, simple to address very complex needs, because we know that people with aphasia would benefit from simple supports, but not they don't need to stay on simple topics. They have very complex ideas and information to share. So we wanted to support that. That's what it is in a nutshell that took a nutshell. I love that. It's on my phone, or it could be on your.   Jerry Hoepner: Oh, yeah.   Hilary Sample: Or on your or on your apple computer. If you wanted that, it's on the app store. But I love this on my phone. So, I just pull in my pockets and use it. Or if you happen to have an another device that works also.   Jerry Hoepner: Sure.   Hilary Sample: We're in the. We're in the process of having it available in different ways. There's a fully developed android app as well. But we're very much learners when it comes to the business side of things. And so there's a process for us in that, and so any. Any guidance from anybody is always welcome. But we have an android that's developed. And then we're working on the web based app so that we could have enterprise bulk users for enterprise, licensing so that that can be downloaded straight from the web. So that's all. Our vision, really, from the onset was like you said, shifting the culture in the system like if there's a tool that from the top, they're saying, everybody has this on their device and on the device that they bring in a patient's room, and there's training on how to use it, and that we would provide. And it wouldn't need to be much, just simple training on how to use it. And then you see that they are. They get that little bit more education. And then it's a consistent. We know. We expect that it'll be used. The culture can shift from within. And that's really the vision. How we've started is more direct to consumer putting it on the app store. But that's more representative of our learning process when it comes to app development than it is what our overall vision was, I want to say that equally as important to getting this into systems is having it be on a person's device when they go to a person with aphasia's device when they go to an appointment. I always, when we've been asked like, Who is this? For we generally just kind of say, anybody that that is willing to bring it to the appointment, so that communication supports are used, and maybe that'll be the SLP. Maybe it's the caregiver. Maybe it's care partner or communication partner, maybe a person with aphasia. Maybe it's the healthcare staff. So, whoever is ready to start implementing an easier solution. That's for you.   Jerry Hoepner: Yeah, absolutely. And that brings up a really interesting kind of topic, like, what is the learning curve or uptake kind of time for those different users for a provider on one hand, for a person with aphasia. On the other hand, what's a typical turnaround time.   Hilary Sample: We've tried to make it really intuitive, and I think well, I'm biased. I think it is   Hilary Sample: I for a provider. I think it's very easy to show them the flow and it, and it becomes very quickly apparent. Oh, it's an introduction. This is putting my name here. What my position is next is a how are you that's already walk in the room, anyways. And that's that. What are your concerns? Okay, that that all. Okay. I got that I think with time and familiarity you could use the tool in different ways. You don't have to go through the set up there you could jump to whatever page you want from a dropdown menu, and I find that at times helpful. But that's you. Don't have to start there. You just start with following the flow, and it's set up right there for you. The, as we all know people with the page I have as all of us have different kind of levels, that some people, they, they see it, they get it, they take the app, and they just start punching away because they're the age where they're comfortable with electronic devices. And they understand the concept. And it takes 5 seconds for them to get the concept and they'll find what they want. Some of our older patients. It's not as quick. But that's okay. My experience with it's been funny to show to use it with people with aphasia versus in another communication disorders, and using it with or showing it to people in the field or in healthcare in general, or you're just your average person most of the time that I showed this to a person with aphasia or who needed communication supports. It's been pretty quick, even if they didn't use technology that much, because it is it is using. It's the same as what we do on with pen and paper. It's just as long as we can show them at the onset that we're asking you to point or show me right. And so once we do that and kind of show that we want you to select your answer, and some people need more support to do that than others. Then we can move forward pretty easily. So people with aphasia a lot of times seem to be waiting for communication supports to arrive, and then you show them it, and they're like, Oh, thanks, you know, here we go. This is what's going on. Of course, that's there are varying levels of severity that would change that. But that's been my experience with people with aphasia. When I show people that do not have aphasia. I see some overthinking, because you know. So I have to kind of tell people like, just them you want them to point and hand it over, you know, because when I've seen people try to move through it, they're overthinking their what do you want me to do? I'm used to doing a lot with an app, I'm used to, you know, and the app moves you. You don't move it. So the real training is in stepping back and allowing the communication supports to do what you're thinking. I need you to do right. Step back and just let the person use the communication supports to tell you their message. And you, you provide those supports like we tend to provide more training on how to help somebody initiate that pointing or maybe problem solving the field of responses or field of icons that's on the page, or, you know, troubleshooting a little bit. But the training more is to kind of have a more hands off. Approach versus you know, trying to move the app forward since the apps focus, really, on describing what's going on with somebody and not trying to diagnose once someone gathers. Oh, I'm just trying to get out what I'm experiencing, it becomes very intuitive. Yeah, that's the issue. And this is, yeah, that's how describes it more. And yeah, this is about when it started that   Jerry Hoepner: That makes sense. And it's in line with what we know about learning use of other technologies, too, right? Usually that implicit kind of learning by doing kind of helps more than here's the 722, you know, pieces of instruction. So yeah, that kind of makes sense.   Hilary Sample: Simple training. I just to throw in one more thought I you know a little bit of training on what communication supports are, and then you show them. And it really, the app shows you how to use communication supports. And so it, you know instead of having to train on that you can just use the app to show them, and then and then they sort of start to have that awareness on how to use it and know how to move forward from there. Generally, there's some training that needs to be to be had on just where things are maybe like the dropdown menu, or you know what's possible with the app, like changes, changes, and settings and the adjustments that we talked about earlier but usually it's a little bit of a tool that I use to train people how to use communication support. So, it's sort of like the training is embedded. So we're doing both at the same time. You're getting to know the app, and you're learning more about how to support communication in general.   Jerry Hoepner: I think that's a really great takeaway in terms of kind of that double value. Right? So get the value to the person with aphasia from the standpoint of multimodal communication and self-advocacy and agency, those kinds of things, and then the value to the providers, which is, you learn how to do it right by doing it.   Hilary Sample: Which is great. Yeah.   Jerry Hoepner: Really like that.   Hilary Sample: Some of the most meaningful experiences I've had are with nurses like, you know, some of those incredible nurses that, like they see the person with aphasia. They know they know what to say, they want to. They know that the person knows what they want to say, but has difficulty saying it. We have one person I won't mention her name, but she's just incredible, and you know the go to nurse that you always want to be in the room she pretty much was like, give me this as soon as we told her about it, and I did, you know, and she goes. She's like, see, you know she uses it as a tool to help her other nurses to know what's possible for these. She's such an advocate but if it can be used like that to show what's possible like to show, to reveal the competency, and to let other nurses know, and other physicians, and so on, to help them to truly see the people that they're working with. It's like that's my favorite part. But the it's not only like a relief for her to be able to have a tool, but it's exciting, because she cares so much, and that like Oh, I'll take that all day long. That's wonderful.   Jerry Hoepner: Absolutely well, it's been really fun having a conversation with you, and I've learned a lot more than I knew already about the app. Are there any other things that we want to share with our listeners before we close down this fun conversation.   Hilary Sample: I think maybe our hope is to find people that are ready to help kind of reach that vision of a culture shift from this perspective from this angle. Anybody that's willing to kind of have that conversation with us and see how we can support that. That's what we're looking for just to see some system change and to see what we can do to do that together, to collaborate. So if anybody is interested in in discussing how we might do that, that's a big goal of ours, too, is just to find partners in in aphasia advocacy from this angle.   Jerry Hoepner: That's great!   Hilary Sample: Perfect. I totally agree. We're very grateful for this conversation, too. Thank you so much, Jerry.   Jerry Hoepner: Grateful to have the conversation with both of you and just appreciate the dialogue. Can't wait to connect with you in future conferences and so forth. So, thank you both very much.   Hilary Sample: Thank you.   Jerry Hoepner: On behalf of Aphasia Access, thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org. If you have an idea for a future podcast series or topic, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access.

Program notes:0:40 A novel way to help aphasia after a stroke1:40 C7 nerve ligation2:42 Somatosensory function versus speech processing3:36 Substandard anticancer medications4:40 Tested many using HPLC5:40 Alarming that one in six is impacted6:40 Paying out of pocket7:38 New type of medicine for treatment resistant hypertension8:38 Need to follow electrolytes9:00 ED boarding for elderly10:00 Length of stay increased11:00 Elderly more likely to suffer complications12:00 CMS program for all inclusive care for elderly12:49 End

Also on Arizona Spotlight: Sharing memories of "The Twilight Zone" with Joseph Dougherty, author of "Rod Serling at 100".

Also on Arizona Spotlight: Sharing memories of "The Twilight Zone" with Joseph Dougherty, author of "Rod Serling at 100".

In this episode you will: Discover how transitioning from participant to facilitator can accelerate personal recovery while creating meaningful support for others living with aphasia, demonstrating that helping others is often one of the most powerful ways to help yourself continue growing. Learn practical strategies for building and sustaining aphasia support communities both online and in-person, including how to adapt materials for different communication abilities, recruit co-facilitators with complementary strengths, and grow through word-of-mouth rather than formal advertising. Understand how creative activities like movie groups, singing and dancing, and talk of the town (current events) serve as powerful therapy tools for participation and language recovery. Welcome to the Aphasia Access Conversations Podcast. I'm Jerry Hoepner. I'm a professor at the University of Wisconsin – Eau Claire and co-facilitator of the Chippewa Valley Aphasia Camp, Blugold Brain Injury Group, Mayo Brain Injury Group, Young Person's Brain Injury Group, and Thursday Night Poets.  I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Cindy “Yee” Lam-Walker. We'll be talking about her programming for individuals with aphasia by individuals with aphasia. This is the second episode in a two-part series featuring remarkable individuals who discovered that one of the most powerful ways to support their own recovery was by creating spaces to help others. We're continuing our June celebration of Aphasia Awareness Month, where we're highlighting the Life Participation Approach to Aphasia by featuring people who are living successfully with aphasia. Earlier this month, we heard from Sherry Lovellette, who started several online opportunities for individuals with aphasia, including Aphasia Gatherings, Online Book Club, sewing, and an in-person support group. We also heard from Dr. Lori Gray about her groundbreaking work integrating mindfulness into stroke recovery. Before we begin today's conversation, I'd like to share a bit about today's guest. Cindy “Yee” Lam Walker is a person with aphasia from Atlanta, Georgia. She was a Treasury Officer before her stroke and was great with numbers and money.   On March 19th, 2019, she experienced a ruptured brain aneurysm. It caused bleeding in her brain, which required brain surgery. After the surgery, she didn't remember what happened for the first 3 months.   She began to speak, but it was difficult. She couldn't walk. She had to use the wheelchair, and she was in the hospital for 5 months. She wouldn't eat. She couldn't go back to her job, a job that she loved but she could no longer do math. Her whole life changed! ​   In winter, she was depressed and didn't want to live. She wanted to die so she could see God and my parents in heaven. In spring, her doctor prescribed some new medications, and she began to feel better. She met her speech therapist, Emily. With her help, she started to talk, to read, and to learn simple math. ​   After her stroke, she didn't care about money anymore. She has many new friends and makes origami to give to people. When she is folding origami, she feels like her mother is teaching me how to fold. ​Now she writes poetry and leads groups for other people with aphasia.     Transcript:   Jerry Hoepner: Well, I'm really excited to have a conversation with you. Katie Strong said that she connected you with you when she was in Atlanta a few weeks ago, and.   Yee Cindy Lam Walker: Yeah, we had a great time.   Jerry Hoepner: Yeah, sounds like it. And she had this idea for a conversation with you about your experience starting an aphasia group for people with aphasia by people with aphasia. And we just think it's a wonderful idea. And I didn't even realize how much you were doing until I saw some of the things that you sent me, and I've heard a little bit here and there from others. But wow! It's really. It's really impressive.   Yee Cindy Lam Walker: The number of people in those classes. Scott did that. I couldn't add up things like he does, so he took care of that I don't even know he was doing it for my classes, but he spent time doing that. But I'm the one who likes to organize it among people and I. I pick some of my other friends to be the host. I'm not always the host for all these classes, so.   Jerry Hoepner: See that. That's really a great idea on your part. People with interest or expertise in those different areas. And yeah, it's quite the lineup of activities that you have kind of across the whole range of interests and topics. So, I'm excited to talk about it. Yeah. Those numbers that Scott put together are really impressive. 2,400 people. Wow.   Yee Cindy Lam Walker: Not at different times, you know, it's not like, yeah. He did the math.   Jerry Hoepner: Yeah, that's a that's a lot of people, though, when you think about how much people struggle to pull people together, those are really great numbers. And obviously you're doing something really well.   Yee Cindy Lam Walker: Yeah, I enjoyed it, I think. You know, right now I don't have a real job. So, I like doing this to help myself and to help other people, too, you know.   Jerry Hoepner: Yeah, absolutely. I think it's as good or as meaningful as any job. The things that you're doing so really excellent work. Well, is it okay? If we kind of start having a conversation about those questions that I sent and try to pull those pieces together.   Yee Cindy Lam Walker: Yes.   Jerry Hoepner: That sounds good. As I said, I'm really interested to learn about your background and kind of your journey through this experience. How has your personal experience with aphasia shaped your approach to community leadership?   Yee Cindy Lam Walker: For me. After my stroke efforts. I was depressed; you know my whole life changed. I didn't really want to live. Really, my parents passed. I figure, you know, if I die, I will see them in heaven with God and my parents. I didn't want to live after the hospital. I was there for 5 months, and I got home. I told Scott that just leave me in the bedroom. Leave it there for one week, then I'll be gone. And he worried about me. So, he kept calling people to help people understand what I'm going through. And shortly after I started to go to an Emory office, where I met my speech therapist. Her name is Emily, and she can tell by she looks at me, and she's like, “Are you depressed right now?” And I'm like, “Yeah, I don't really want to live.” And then she said, “Well, you know, you come to my office here. You are aphasia.” And I'm like. “Wait what?” And she said, “aphasia. And there are lots of people with aphasia all over the world. It is the inability to read and talk, but we can help you.” And when she said that to me I all of a sudden woke up like, “Oh, I can't! I'm not the only person with this, you know.” I knew I had stroke, but I never heard of the word aphasia and when she said that she woke me up and I started to read and talk with her. So, And because of that I felt like she helped me. I want to help other people, too you know. I started to start to like my life a little bit and then, after a while, I tell myself you know, your life right now is actually much better than before. You know I care a lot about money and all that stuff. But now I don't care about money anymore. I'm glad that I'm alive and I like to help people because a lot of people helped me when I was going through stroke, and later with my Chemo people there helped me so much that I want to be there to help them. and that makes me feel happy to be able to help others.   Jerry Hoepner: Absolutely that sounds like that. Conversation with Emily was a real turning point for you. Yeah.   Yee Cindy Lam Walker: Yeah, and that.   Jerry Hoepner: Moving forward.   Yee Cindy Lam Walker: I always tell people who are studying to be speech therapists. If I can do it all again. I wouldn't want to be a Treasury officer. I want to be a speech therapist because you get you guys to help so many people. You know, nobody really knows about that until they're going through stroke or other stuff. A regular person wouldn't know what is aphasia, you know.   Jerry Hoepner: Right. You mentioned, as you were describing that journey, the stroke and the aphasia. And then you briefly mentioned your chemo. Can you tell us a little bit about that journey from recovering from the stroke and then finding out about the breast cancer?   Yee Cindy Lam Walker: Yeah. Well, you know After my stroke. I hate going to the hospital, anyway. I've been in the hospital for 5 months but every year we get this mail, saying that oh, it's time for your mammogram. And so, Scott, usually he goes to the mailbox, and he likes going to the mailbox. I don't like to go. I don't really care what I get from the mailbox, but he likes to look through them and he told me. Oh, it's time for you to have mammograms and I'm like, I don't really want to go. And he said, No, I think you know you should do it, and I'm like, no, I said that. You know I hate being in a hospital. I'm so flat over there. There's no way I'll ever get breast cancer. But he kept forcing me and forcing me. And I finally went. And I'm so glad that I went, you know, because I have breast cancer Stage 2. If I didn't go, it could be Stage 3 or Stage 4 so, and it's him kind of forcing me to go. And I always thank him so much for keep forcing me to go. You know, and when I found out I have breast cancer. I never heard of this name called triple negative breast cancer. You know I was kind of surprised that I got this, but I never got angry or anything. The 1st thing I said to myself, is, you can handle it. You went through stroke, and now you're going through breast cancer, but you can handle it. And so, I you know, I went through all the stuff that goes through chemo. You know I yeah. And I'm glad that I never felt angry with anything. I just think that there's a reason for me to be going through this. Perhaps I'm there to tell people that like me you should go get your mammogram. You know so, and my life's still better, too, after that.   Jerry Hoepner: Well, it seems like that. Mind shift, or that mindset shift that you experienced with Emily kind of led to the way that you responded to the cancer as well, just really, positively and forward looking.   Yee Cindy Lam Walker: Yes, yeah. And I didn't try to be happy or anything. It just happened to me that you know I enjoy my life. Now I like my job before I was a Treasury officer, and I love the people. I work with my manager and shortly after I got my stroke and back then. I care so much about money now. I don't care about money anymore, you know. I think my life is even better. I get I met people that I never met before, and I spend more time with them now, like my husband's mother, Joyce. She was always very nice to me, but I didn't really like her too much back then. Perhaps my own mother was going through Chemo, and you know I didn't really like Joyce, but when I was going through stroke. She came to the hospital here. She came from Florida to Atlanta, and she was always in the hospital to help me you know, so I'm much closer to her now, you know, like people that I never really care about. They all came to help me.   Jerry Hoepner: Wow! It sounds like you've got quite a quite the supportive network you've mentioned Scott a couple of times. Can you tell people just a little bit about who Scott is?   Yee Cindy Lam Walker: Yeah, my husband he taught me a lot, I mean, he was helping me with my stroke and through Chemo you know, and neither one of us were us were angry. Well, he was a bit angry, not at me. But why are you having breast cancer now? He just couldn't believe it, but I'm like, well, it happened so let's just handle it. But most of all, he's always been here. Always drive me to the hospital you know, he would bring his computer in the hospital because he need to do his work. And I'm in there getting chemo all that stuff, you know? Yeah. So yeah. And you know, we met when we were college and I think our personality has changed a little bit since you know when we were in college. But we we're getting even closer now than before, I think, for some reason. Yeah.   Jerry Hoepner: That's really great to hear that. And it just seems like you've kind of found your way through this process, and you just have such a good attitude. I'm interested. What was the moment you decided you kind of talked about this, that you were inspired by the people that were helping you. But what was the moment that you transitioned from being a participant in in various groups to being a facilitator and a leader?   Yee Cindy Lam Walker: Well, I think I've been to some of those visual connections, you know that. And when I was part of them, I was shortly after my stroke. So after, like 2, 3 years later. I felt like, perhaps I should go to some classes for people who were not recently from stroke, but like me after several years and we might do something different compared to before. So, I decided that I would get a zoom where people can come, and you know and do certain things like we can read the news, or we can read about history articles. I think it's important that people can start to talk and weep. Because I mean, you know, right after my stroke. I had to learn all my ABCs you know, but it takes time, and that's why I felt people when they come to our zoom. If you want to just come, you don't have to say anything. Just see what we're doing, and then, by the time, whenever you feel like, it's the right time for you to start talking, then you can. I don't want them to think that. Oh, you come to the zoom, and you will start reading a sentence. No, I think it's just in your time. Whenever you're ready for it. You can, you know we will help you with seeing one sentence or something like that. So even though you know, people might come, and they couldn't say the sentence, which is fine because they can hear it and understand it right. They just can't say it. So, I started with like the conversation group and then talk of the town, and then I ask others to be host. So, I don't have to be the host for all of them movies and stuff like that. So, and you know it. And then I didn't really go and tell a lot of people about it. I just told several, and then they then they went and recruit more people, so.   Jerry Hoepner: That's a a perfect transition to my next question, because it sounds like one of the. My next question was going to be, what strategies have been effective for you and growing your community. But you said, one thing is just let people join on their own time and and participate when they're ready to and then you mentioned that you shared with a few people, and they shared and kind of that word of mouth any anything else that's been helpful in growing that community.   Yee Cindy Lam Walker: Yeah, I think for the zoom I want between, like, you know, 4 to 8 people, because if it's more than 12 people, it's hard to be able to read the sentence, because sometimes you need to go to the second page, you know, when you look at, you know, so I don't want to have too many people in in a zoom between 4 to 10 actually will be good because I want them to have several times to read instead of do it once, you know, if there's too many people there, so that's that I think will be good. I think that's it. I don't really yeah. And sometimes I will ask them, what kind of zoom do you want? And somebody might say, What about baking? I'm like, okay, that might be good, you know. I'm not a baker, or I don't like to cook. But if someone wants to be involved in that you can, but you need to be the host, because I won't say anything about cooking, because I don't really know too much about them you know. So.   Jerry Hoepner: Yeah, it sounds like you have a lot of good things that you've kind of done through the program. I mean, just asking people what they want. Clearly with your numbers. Since 2023, 2,400 people that have attended, I mean, that's a lot. You're doing some things really well. To create that sense of community in that space where people can learn and continue to improve.   Yee Cindy Lam Walker: Yeah, and I think, the I. So, I have like talk of the town. We had 3 classes talk of the town news and then talk of the town history article and talk of the town people.com. and I think someone who just recently have stroke or other illnesses. They might want to start with people.com. Then they can go to the second one, which is news, and then the last one is history articles, because history articles are pretty hard to read them. Lots of numbers like 1492, you know, for a lot of people. Those words are hard a lot of, so that will be the order. I would tell them. You can start with people.com. Those are pretty easy, you know, and then you move to the news article like what's going on like, you know. Pope is from United States that type of articles, and then history new articles, because they are really hard to say. A lot of the names and the years. I'm okay with the numbers. But a lot. They have a lot of problem with reading the numbers.   Jerry Hoepner: Gotcha, you know, as long as you're talking about those I think might be a good time for me to kind of mention a few of them. So, you have one entitled, Wake up the week.   Yee Cindy Lam Walker: Oh!   Jerry Hoepner: Yeah, what's that one about.   Yee Cindy Lam Walker: Oh, it was somebody wanted to host one with my group. His name is Ed, and she wants to talk about wake up this week just to see what people did during weekends, and then what you plan to do in, you know, this week, and so so about that. So, they can talk, you know and that's what it is about like. Oh, we went to see a movie, you know, did you like this movie? Or, Oh, how are your pets? How is the kitten? You know, stuff like that? So, it's a.   Jerry Hoepner: That's a great idea, so kind of catching up with each other, and then.   Yee Cindy Lam Walker: Yeah.   Jerry Hoepner: Talking about plans for the future.   Yee Cindy Lam Walker: Yeah. And he was the host. But then he started to go through therapy, so he's not the host. Now, this one really doesn't have a host. I kind of am the host, but you know, with the same people would come back anyway. So, I don't think we really need a host for this one.   Jerry Hoepner: Gotcha, you have a conversation group that's pretty self-explanatory. And then you have one on movies and looks like TV series. And things like that.   Yee Cindy Lam Walker: Yeah, yeah, like, we were watching. What is that one? I forgot the name. Yeah, like I would have. I would play the movie whiplash, you know. Have you seen Whiplash?   Jerry Hoepner: I haven't seen that one yet. I've heard it's good.   Yee Cindy Lam Walker: They! They use a lot of bad words in it. But if you're okay with that, then I think you might like whiplash. Yes, and then we'll ask people. So, what do you think about what happened to so and so you know that get them to talk? Yeah. Point is for people to able to talk. It doesn't have to be a long sentence. But you know, what did he do? Do you like his you know, Job, or, you know, stuff like that get people to.   Jerry Hoepner: That's great. And then you have a singing and dance group, too. What's that one like?   Yee Cindy Lam Walker: Oh, I just go onto YouTube and get the songs with the caption on the bottom so they can sing and listen to the song. I think somebody told me that if you have a tough time reading a sentence, but when you're listening to the music, actually, you can sing pretty fast like than just reading a line, or something like that.   Jerry Hoepner: Yeah, that definitely can help get some of those words out for a lot of people with aphasia. So yeah, great a lot of really great offerings. As we're thinking about your programs. Is there anything you wish? Like? One thing you wish you had known before starting the process? Or maybe something you've learned throughout the process.   Yee Cindy Lam Walker: Yeah, something that I learned that I never really thought about that is. So, it happened like half a year ago my class was going to at 5 pm, okay? And I decided, I'm going to go earlier than 5. I just want to get there. So, I can put the information. I got there at 4, 45, and there were 2 people there already. They were talking about their book, and then I'm like, I was just surprised like, how could somebody just enter the zoom, you know, and she told me, oh, I have this book club now. And I'm like, hmm! I never thought like I never thought. Oh, I can just go use somebody soon without telling her you know. I never even think about that. I I'm like what you know. And she said, Oh, yeah, she came on. I said you need to let me know, because I need to record. You've been into these classes, you know, you're going to be part of aphasia forward Book Club. Okay? So, I need to know if you will be coming here and stuff like that. But just the fact that I should have told people you use assume only from a facia forward. Don't just come out of nowhere and use this. Okay, it's free. Because somebody pays for this, you know. And if you want a free zoom, you can't. You can have the conversation for less than 40 min. Those are free. Then go to those and get them yourself. Don't just come here and use the zoom so.   Jerry Hoepner: Gotcha. Yep, yeah. Good things. There's always a lot of logistics to to sort out. For Aphasia Forward. What? What are your hopes for the future, for your community?   Yee Cindy Lam Walker: I think I want it to grow more in Georgia here. I kind of want it to be more like you guys in Wisconsin. We didn't have that. You know how we go to the camp there. I want people in Georgia can do that here because and they are starting with like a community right now. It will kind of, you know, far away before they can become like Wisconsin, but at least they are starting one here like there's like we. I saw them last Friday, when we went to Good morning. A facie when Jacqueline was there, you know. So. And then I met the 2 ladies who's going to be forming a company or something about a aphasia and help each other like that. So, I want my zoom to, for people who like they don't have to drive to an office. They can just be on my zoom at home. So yeah, if they want to learn how to, you know, sing, or read again, we can help.   Jerry Hoepner: That's excellent. So, sounds like 2 big missions getting them to participate and to get kind of get back into doing things and then creating that community, that group of people with aphasia that understand one another and can connect with one another.   Yee Cindy Lam Walker: Yeah, and I told them, you know. It might be good to have pickleball here, too.   Jerry Hoepner: Yeah.   Yee Cindy Lam Walker: I think a lot of people like it, you know. So, or like, you know, we would be surrounded by the fireplace, and we sang. You know those are nice things, you know words, you know, but we don't have one right now.   Jerry Hoepner: Yeah, yeah, I think those are great aspirations for the future. I hope that it continues to grow. And you develop that community even further. If you had a suggestion, this is kind of a little add on question. But if you had a suggestion for someone with aphasia who is thinking? I want to start something like this. Where would you begin?   Yee Cindy Lam Walker: Well, they can. I mean they can talk with me, and I can show them the list of clauses. And then, I guess, like, you need to be able to tell other people about it. I mean, there's not much you need to do. You just create one using a zoom, and then you know, people will start talking to each other, and then you will find more about people who are coming what they want to do. So perhaps, like, I can help in that way. I guess. Yeah, like I, I can give them some ideas of what I went through to get to where I am now.   Jerry Hoepner: That's fantastic. I don't know if you know this, but you're a pioneer and definitely. There will be people, I'm sure, that'll reach out to you and ask you about how you made it happen. So? It's been really fun having this conversation. Is there anything else you want to share with our listeners?   Yee Cindy Lam Walker: No, I don't think so. I mean yeah, I mean, at some point before I thought it would be good to have poetry class. But since you guys are so good in Wisconsin, I don't think I need to do another one. There'll be too many poetry for me a week.   Jerry Hoepner: Well, it's certainly been fun getting to know you through aphasia camp and through poetry. And it is absolutely inspiring to see you continue to improve and to and to grow, and to be doing all of these things on your own. So, you are truly an inspiration and I'm glad to know you.   Yee Cindy Lam Walker: Oh, thank you. Same to you. Yeah. Oh, I think a lot of people has been coming to Thursday night poetry.   Jerry Hoepner: Yeah, we've had some really yeah good numbers and a lot of great people. I always think it's fun to see the new people, and to see how much you know. They kind of start out, and they're a little bit quiet, and then they just continue to grow. So it's really fun to watch that.   Yee Cindy Lam Walker: Yeah. And a lot of people really enjoy listening to poetry or working so.   Jerry Hoepner: Agreed.   Yee Cindy Lam Walker: Okay. Thank you.   324 00:39:16.250 --> 00:39:18.330 Jerry Hoepner: All right. Good to see you.   On behalf of Aphasia Access, thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org. If you have an idea for a future podcast series or topic, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access.

In this episode the Slow Road to Better crew talks to Maura Silverman about what the National Aphasia Association is, how we all can spread the word and how the NAA is here to help you!

Dr. Katie Strong of Central Michigan University has a vibrant conversation with Sherry Lovellette about how transitioning from participant to facilitator can accelerate personal recovery while creating meaningful support for others living with aphasia. They explore practical strategies for building and sustaining aphasia support communities both online and in-person, including how to adapt materials for different communication abilities and grow through authentic word-of-mouth connections. Sherry also shares how creative activities like quilting and sewing have served as powerful therapy tools for her cognitive rehabilitation and fine motor skills, while providing opportunities to teach others and build additional community connections. This inspiring conversation demonstrates that helping others is often one of the most powerful ways to continue your own recovery journey, embodying the Life Participation Approach to Aphasia by showing how meaningful roles as a leader, teacher, and community builder can flourish alongside ongoing recovery.

Dr. Katie Strong has a conversation with Dr. Lori Gray about her work which focuses on mindfulness and aphasia. During this episode you will • Learn how mindfulness practices can help manage daily communication challenges including neuro fatigue, word-finding difficulties, and the frustration that comes with living with aphasia. • Discover why recovery "plateaus" should be reframed as "nonlinear pause points" and how challenging traditional beliefs about recovery limitations can open new possibilities for continued growth. • Hear about an adapted Mindfulness-Based Stress Reduction program for stroke survivors and the positive outcomes from Dr. Gray's pilot study, including improved sleep, reduced stress, and enhanced quality of life. • Experience a guided mindfulness practice designed specifically for people affected by aphasia and learn practical ways to integrate mindfulness into both daily life and clinical practice.

SEASON 3 EPISODE 121: COUNTDOWN WITH KEITH OLBERMANN A-Block (1:45) SPECIAL COMMENT: The District Attorney for New Orleans Jason Williams must indict and issue arrest warrants for Tom Homan, Kristi Noem (Now With 8 Action Adventure Dress-Up Outfits) and the other members of the ICE Gestapo who disappeared a two-year old New Orleans born girl and sent her to Honduras - possibly making up a story that her Honduran-born mother wanted to take her with her - AND also abducted and renditioned a four-year old US Citizen toddler with Stage 4 Medication and sent her and her mother to Honduras, too. The charges should be led by Child Trafficking, kidnapping, violation of 5th and 14th Amendment rights, and be predicated on the fact that ICE has degenerated into a violent gang threatening the safety of Americans. Throw the RICO act at the Brownshirts. The event was so egregious, so redolent of Moral Cannibalism, that the Trump Appointee judge who brought the case to public attention and tried to stop it referred in his writings to their plane being above "The Gulf of America." But he also voiced his "strong suspicion that the government just deported a U.S. citizen with no meaningful process." Indictments of Noem and the others may be fruitless. But it will at least symbolize that democracy will at least fight back against what Trump is doing: which is verging on Ethnic Cleansing. MEANWHILE IN WISCONSIN the ICE stormtroopers who arrested a judge in her courtroom for not collaborating with a raid should themselves be arrested. And unlike Trump, authorities there will not have to fabricate or pervert laws to do so. PLUS I'll analyze Trump's sudden pathetic pleadings to Putin, his bat guano crazy interview with Time, and most imperatively, his writing that he suspects Putin is "just tapping me along." There is no indication anywhere that this phrase "tapping me along" has ever been used by anybody else, ever. There is every indication Trump's mind may have now degenerated further into the stage where he is making up his own words and phrases. B-Block (36:00) Dedicated to Karoline Leavitt whose first and last names both contain the letters for the word "lie." Trump himself gets a bronze for boasting about spending $58,000 of his own money on behalf of the country while he syphons off millions daily. The runner-up is Ed Martin and his embrace, then disengagement, from the world's stupidest looking Hitler cosplayer. But the winner again is Bill Maher, who perpetuates his career-ending decision to go to the White House for dinner with Trump. He claims Larry David's soon-to-be-Pulitzer-Prize winning satire of the event has insulted "six million dead Jews" because of the comparison between Trump and Hitler: "I think the minute you play the ‘Hitler’ card, you’ve lost the argument." Ooops. It's a shame Bill's memory is so damaged. Guess who played the Hitler card, made the comparison to Trump, and thus presumably lost the argument? Twice? On his own show? IN 2015? C-Block (46:00) THINGS I PROMISED NOT TO TELL: Someone mentioned the great Cornell astronomer and planetary scientist and 26-time Tonight Show guest Carl Sagan and I was flashed back. Sure enough, it was 47 years ago last week that he won a Pulitzer Prize. Our Cornell radio station called him for an interview and he said yes, on one condition: "Is your sportscaster Keith there? I want him to do it. He gets it." This would be the first time I ever interviewed anybody famous, and he requested me, even though we'd never met. I'm as stunned now as I was then, and I'll explain why it happened. See omnystudio.com/listener for privacy information.

There are at least two million people in America who have thoughts and ideas they can't put into words. People who have had strokes or traumatic brain injuries often live with aphasia: difficulty using language, both written and spoken. But music mostly originates in the undamaged hemisphere of the brain, and people with aphasia can often sing. Today in our bonus episode, in partnership with the podcast Rumble Strip, we meet a member of The Aphasia Choir of Vermont.For sponsor-free episodes of Consider This, sign up for Consider This+ via Apple Podcasts or at plus.npr.org. Email us at considerthis@npr.org.Learn more about sponsor message choices: podcastchoices.com/adchoicesNPR Privacy Policy