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Episode 143 Hope in Aphasia Clinical Process with Jaqueline Hinckley   In this episode you will learn about: the science of hope and theories of hope, scales that can be used to measure hope, realistic hope and false hope and the importance of having conversations that support realistic hope, and ideas to embed hope theories, hope measurement and conversations about hope into clinical aphasiology.     Janet Patterson: Welcome to this edition of Aphasia Access Podversations, a series of conversations about community aphasia programs that follow the LPAA model. My name is Janet Patterson, and I am a Research Speech-Language Pathologist at the VA Northern California Health Care System in Martinez, California, and am a member of the Aphasia Access Podcast Working Group, a community dedicated to supporting better aphasia care. Today, I have the honor of speaking with my longtime friend and colleague, Jackie Hinkley. Jackie is Professor in Speech-Language Pathology and Program Director at Nova Southeastern University. She's currently serving as Chair of the Board of Directors of the National Aphasia Association and is also serving on the Certification Board of the Academy of Neurologic Communication Disorders and Sciences. She is Editor for Language for the Journal of Speech, Language, and Hearing Research, and has several other editorial roles. She is the program lead for Project Bridge and is currently co-project lead on another project funded by PCORI, which is the Patient-Centered Outcomes Research Institute, in which people with aphasia, clinicians, and researchers are co-developing a core impact set for aphasia through the NAA.   The focus of our conversation today is hope and aphasia. As we talk about hope, Jackie and I think of our friend and colleague Sandy Glista, who was an integral part of Aphasia Access, and who exemplified hope in her work and interactions with people with aphasia, students, care partners, and clinicians. Recently, Jackie and I co-wrote a paper examining the science and practice of hope, which forms the basis of our conversation today. Welcome, Jackie, and thank you so much for joining me to talk about our exploration into hope and how we can embed hope into the clinical practice of aphasiology.   Jackie Hinckley: Thank you, Janet. I'm so happy and honored to be talking about hope with you. We've worked together for so long, and hope is such an integral part of what we do, whether we think about it and acknowledge it explicitly or not. So, I'm excited about this topic.   Janet: Let's begin our conversation then with a basic question: What is hope? So, Jackie, a while ago, when we began talking about hope and aphasia, we thought about hope as being something everyone knows about. In speech-language pathology, clinicians and researchers talk about hope as important to a person's aphasia journey. Yet few have looked beneath the surface to understand what hope really means, how it supports rehabilitation outcomes, and examine the science behind hope. We embrace that topic, beginning by looking at hope from a theoretical perspective. The first, and most influential theory we found, is hope theory. Will you describe that theory, Jackie, and give us a glimpse at how it has influenced the science of hope.   Jackie: Yes, while investigating the science of hope, we found that hope theory, which was developed by Snyder and colleagues, was by far the most influential in terms of the amount of literature and references. And in addition, hope theory has been the foundation for tools to measure hope, and has also been the inspiration for recommendations on how we can think about hope in the context of rehabilitation. It really boils down to three main components. The first component in hope theory is the target or goal of hope. So, it's the thing that we want to have happen. The second component of hope theory is termed the pathway. This is the action or a set of actions, some route we have to take to get to that goal that we want to happen. If we don't know how to attain our goal, it will be difficult to maintain hope. The third element is agency, or our belief in our ability to do what will be required on the pathway to achieve the goal. I think that one reason hope theory has been discussed in the context of rehabilitation is because these elements map so intuitively onto important aspects of what we do in therapy.   Janet: Jackie. I think you've said it so clearly and concisely. Cognition, though, also has a role in hope. Our thoughts about past and present actions and feelings can inform our current thinking about goals and pathways. This point is particularly important as it underscores the changing nature of hope. That is, hope is dynamic. It can be used to guide people as they form goals and pathways and agencies. An individual's state of hope can change based on past beliefs, actions, and outcomes for themselves, and also those that they observe in others. But we do need evidence to support this idea, though. Jackie, will you talk about that evidence that hope can change?   Jackie: Sure. Let's start with a simple example first. We can hope that it will not rain on Saturday during our picnic. Of course, that kind of hope is very general because we don't have control over whether it will rain or not. But then, when it does start to rain during the picnic, we can hope that the rain will end soon. I'm sure we can all think of more examples of general hopes that can change from one hour to the next. But the same is true for more specific hopes. A person with aphasia might hope to be able to give a toast at their daughter's wedding. Perhaps thanks to a speech pathologist, that person has a known pathway for how to practice and prepare for giving the toast. The person with aphasia trusts the speech pathologist and believes that this kind of practice and preparation will result in being able to give the toast. But the simplicity of that hope will not remain stable from day to day, week to week, or even necessarily hour to hour. Perhaps after a session that the person with aphasia perceives as unsuccessful, hope may diminish. The person may start to lose hope that they will be able to do the toast. In this example, there are both external and internal factors that mediate hope at any moment in time. First, externally, the practice may not have been that great on that day, but internally the person with aphasia thinks about and emotionally responds to that session in their own particular way. Both external and internal factors will also play a role in what the person with aphasia does. The clinician, as an external factor, may provide helpful or harmful, possibly, responses or supports. Internally, the person with aphasia will bring their own personal history of hope and emotional responses, and these will also help to drive whether hope is completely lost or if hope is restored. In our research, there are some great examples of that by some other investigators.   Janet: That's true, Jackie. And in our investigation, we discovered evidence of the changing nature of hope. In the early days following stroke, an individual may feel hopeless about the future, not knowing what may happen. As rehabilitation unfolds, one might experience positive hope for a future recovery. But one might also experience hopelessness or despair. Individuals bring a lifetime of experience with hope in general, but most people have little, if any, experience with hope surrounding aphasia and rehabilitation. It is reasonable then that they may develop their state of hope based on their general nature, as say, a positive or an optimistic person, or a more pessimistic person. Clinicians have a vital role here in helping clients and families examine their state of hope and then help them to create realistic hope surrounding their aphasia. Jackie, how do you think that understanding the theory of hope and the changing nature of hope can help us in our work with people with aphasia.   Jackie: Well, Janet, the examples you just gave highlight that many people with aphasia, and other conditions, say that hope is a necessity. It's an absolute imperative for being able to persevere. As speech pathologists, our goal is to help people achieve the highest quality of life possible. When it comes to chronic aphasia, that will require perseverance over a long period of time for most people. It is hope that will get people to keep trying. Hope is not necessarily optimism, although sometimes it sounds a bit like it, and they can coexist. If hope is seen as the idea that a target is possible, then we can understand that hope could coexist even in a pessimistic or negative expectation. For example, you might say you don't think it's really going to happen, but it's possible, so we still hold out a little bit of hope. So, optimism and pessimism can be there, but they're really not the same as hope. And hope is also not necessarily the same thing as motivation. While it's true that having a goal, a pathway, and a sense of agency might bring about hope and also motivate hopeful actions, the lack of actions toward a goal does not necessarily constitute a loss of hope. So, for example, a person with aphasia could still hope for a particular outcome and still believe that the outcome is possible without taking any actions toward it. I believe that many clinicians would describe this as a lack of motivation. That's possible, but I think it's important for us to stop describing clients as "unmotivated". Using hope theory as well as other science on motivation, we can break down the critical elements. What is the client hoping for? Do they see the pathway or actions they need to take? Do they see that what you are asking them to do is part of that pathway? Do they believe that they can accomplish the task you are asking them to do? As clinicians, I think we have to understand the complex mix of thinking patterns and

In this episode you will: • Learn about the role of stress in communication and how to manage stress through coping strategies. • Learn about spirituality and spiritual practices, along with the distinctions between spirituality and religion. • Learn about the Aphasia Brief-Cope tool. • Learn about the potential adaptive value of spiritual beliefs and practices for individuals with aphasia. • Learn about how to start conversations about spirituality and aphasia. Imagine for a moment that you've lost your connection to a deeply important aspect of your life, a mental space, a conversation, a meditation, a fellowship. Aphasia can alter so many connections, but this strikes at your core. Well, there's hope. Spirituality and spiritual practices are possible after aphasia and clinicians should offer to open these doors if that is what the person with aphasia wants. 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, Brain In-Com intensive brain injury program, 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. Hannah Wendel Griffey is an assistant professor in the Department of Communication Disorders at Brigham Young University, where she directs the PEARL Lab (Psychosocial Effects of Aphasia on the Rehabilitation of Language) within the BYU Aphasia Center. Her research examines how psychosocial factors shape recovery, participation, and quality of life for people with aphasia, with particular attention to the measurement and treatment of stress, anxiety, coping, and identity. Grounded in participation-focused frameworks derived from the ICF, including A-FROM and the Life Participation Approach to Aphasia, her work promotes culturally responsive, holistic care. A central focus of her scholarship is religion and spirituality as coping mechanisms in neurogenic communication disorders, examining how communication barriers restrict spiritual participation and how adaptations and clinician support can facilitate continued engagement and well-being.

Episode: 140 Taking Charge After Stroke: Self-Determination and Recovery with Vivian Fu   In this episode you will discover: ● The Conversation Is the Intervention — A structured, facilitated conversation that centers a person's identity, hopes, and vision for their best day produces measurable improvements in quality of life and independence a year after stroke. Connection isn't soft — it's evidence-based. ● Reframe the Expert in the Room — Take Charge asks clinicians to resist offering advice, validation, or direction — and to trust that the person with stroke already holds the wisdom they need. The hardest part of the facilitator role is staying out of the way. ● Self-Determination Is Not a Luxury — When people with stroke are supported to set their own direction, outcomes improve, costs decrease, and the effects last for years. Building systems that protect that autonomy isn't idealistic — it's what the data demands.   Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Katie Strong from Central Michigan University and a member of the Aphasia Access Podcast Working Group, a community dedicated to supporting better aphasia care.   Today I'm speaking with Dr. Vivian Fu, a stroke neurologist living and working in Kelowna, British Columbia, the unceded territories of the Syilx / Okanagan people. Vivian trained in Aotearoa New Zealand, where she completed her PhD running the Taking Charge After Stroke trial. Take Charge showed that people with stroke who were supported to follow their own self-determination had much better quality of life and independence a year after their stroke. The second Take Charge RCT showed that two sessions about six weeks apart produce better outcomes than one session. Vivian strives to embed the Take Charge philosophy in her daily practice, and is focused on improving access to high quality stroke care for rural, regional, and underrepresented populations.   I have been looking forward to this conversation. What drew me to Take Charge was how it reframes the question entirely — from what does the clinician do for this person to what does this person want for their own life. That shift is deceptively simple, and as you'll hear, the evidence behind it is anything but.   Let's get into it.   Katie Strong:  Welcome, Vivian. Vivian Fu: Thank you so much for having me, Katie. I'd like to start off with my Pepeha. This is an introduction in Te Reo Māori, which is the indigenous language of the people of Aotearoa New Zealand, and I'll just translate each line. Nō Hong Kong ōku tīpuna. My ancestors come from Hong Kong. I tipu ake au ki Aotearoa. I grew up in Aotearoa, New Zealand. E noho ana au ki Ki-Low-Na. I live in Kelowna, British Columbia. Ko tēnei taku mihi ki ngā tāngata whenua o te rohe nei. I like to pay my deepest respects to the first peoples of this land. I live on the unceded territories of the Syilx and Okanagan peoples. Ko tēnei taku mihi ki ngā maunga, ki ngā awa, ki ngā roto, ki ngā Papatuānuku, o te rohe nei. I'd like to pay my deepest respects to the mountains, rivers, and the lakes, and to Mother Earth. All these important landmarks that have been here for millennia. Nō reira, tēna koutou, tēna koutou, tēna koutou katoa. Therefore, hello, hello, hello, Ko Vivian Fu tōku ingoa. Lovely to be here. Katie Strong:  Well, I'm so glad you're here. And I wanted to start off today asking about the Take Charge program that you've been working with, and talk to me about how that began. What was the origin of that? Vivian Fu:  Sure, so really this work began in probably the late 90s early 2000s when clinicians in Aotearoa New Zealand realized that there were different outcomes for people who were Māori compared with non-Māori, and I guess an important point to illustrate is that in Aotearoa society we view things in a very bicultural lens, and by that I mean Tangata Whenua, who are the people of the land, so indigenous people of the Māori and Tangata Tiriti, so everyone else are people of the treaty. It doesn't really matter where you come from, but you are a person of the treaty if you live in Aotearoa, and so it's a bicultural lens, and so we always look at things in that way, and that's how our kind of entire society is grounded upon that. And so when we look at health outcomes, what we could see back then, and unfortunately what we, in a way, still see now is that Māori were experiencing a stroke at about 20 years younger than non-Māori, and they were more likely to die from their stroke, and also more likely to be severely disabled. And so there was a difference in life expectancy, a difference in overall rehabilitation access, difference in overall outcomes, and so it started off with Professor Matire Harwood's work. She is Tangata Whenua, and in her PhD, she was looking at why there were these differences in outcomes and wanting to address them. And so that started off with the Māori and Pacific Stroke Study, which was essentially conducted in just Māori and Pacific people in Aotearoa, New Zealand, out of many different centers around the country. It was a four arm study.. It was a randomized control trial, and it looked at a conversation, which was labeled as the "Take Charge" session, but it was, it was really a connection and a conversation versus a professionally made DVD from the New Zealand Stroke Foundation about people's experiences and stories after stroke. And then the fourth arm of the trial was getting both of those interventions, and there was a control group. So there were three active groups in one control group. And what the researchers basically found was that anybody who had received this session of discussion and connection did much better a year after stroke in terms of quality of life, independence, and caregiver strain. And so that was the first sort of indication that there was something in that conversation that was really important. Unfortunately, it didn't really take off in terms of being able to be implemented, and so then Dr. Harry McNaughton, who was Dr. Harwood's supervisor wrote multiple grants and tried to get this session into much more of a bigger trial with some some type of implementation, and that's where I came along and we essentially did two things. We operationalized the intervention into something that had a bit of a framework, so with a bit of a booklet and a bit of a structure to follow. Really looking into what was it about that conversation that was so powerful and made such a difference to people, and tried to put those things into practice. Then, secondly, to conduct a second trial in New Zealand out of seven centers for people with stroke who were non-Māori and non-Pacific, because the struggle that we came across was that it was only shown to be effective in a small group of people, but not in everybody, and so we had to do things backwards. And so that was really where it all began, from these principles of self-determination, so Tino Rangatiratanga, which is a really important principle in Te Ao Māori, and in the world of Māori, but also knowing that Māori and a lot of indigenous peoples, we think of health as this concept called Te Whare Tapa Whā, for example, which is the house with four walls. So a person is never just their body and their physical health, there are other walls that keep the house upright. So mental health, spiritual health, and family health, whānau is so important, and feeling as though you have strong foundations in where you belong is also really important. So it's that really holistic look at health of an individual and how we can address all of those things in an intervention is really where it all came from. Katie Strong:  Thank you for sharing. I appreciate the backstory, and also just the idea of what you're thinking about from a holistic health standpoint. I know our listeners are probably curious, some of them might not have heard about Take Charge before, so this is the first time of them hearing about this, and so I was hoping, Vivian, you could give us an overview of what the intervention is, and then maybe walk us through what a session actually looks like in practice. Vivian Fu: Yeah, absolutely. So I'll talk you through the session in the way that it was done in the larger Take Charge trial. So this was done in 400 non-Māori, non-Pacific people with stroke, and our trial there had three arms. So there was a control group, there was a group that received just one session, and then there was a group that received two sessions six weeks apart roughly. The sessions were provided by a trained facilitator, and they were timed roughly somewhere between three to 18 weeks after stroke. So quite a large window, really, depending on when the person with stroke was ready to receive it. So the short version of what it looks like is it's based off the booklet and it's done face to face. It's a conversation and the facilitator is trained at the beginning to really try and establish a relationship…to build a relationship. There's a concept in Te Ao Māori called Whakawhanaungatanga, which is really sort of seeking another person's identity, recognizing who they are as a person, and trying to build connections. And so I guess in English, we think of that as building rapport, building trust. And so it in our trial was done face to face. We have also looked at ways of doing this via telehealth as well, which is, you can imagine, is a little bit different. But that step is really important, and we knew that it was important also in the initial Māori and Pacific trial, because the facilitators who were trained were actually ethnicity matched. So that's something where I think it came quite naturally in that trial, but in the second trial we really wanted to ensure that a relationship was built, and then there are three pages, initial pages in the booklet that look at different things. So the f

Episode: 140 RAISING PPA assessment and treatment from the Ground Up: In Conversation with Jeanne Gallée     In this episode you will discover: · Assessment and Intervention Aren't Separate — Conversation itself can double as both. By listening closely and responding to what a client offers, in a "more art than science" way, clinicians gather meaningful data and provide support at the same time, rather than treating these as two distinct phases of care. · Rigid Testing Can Erase the Person Behind the Diagnosis — Traditional standardized assessments often serve the goals of an institution or research protocol more than the person being assessed. Frameworks like RAISE and the PACT scale shift the focus toward strengths, natural conversation, and what someone can still do, rather than repeatedly measuring decline. · PPA Needs Its Own Identity and Training Path — Because primary progressive aphasia sits uneasily between post-stroke aphasia care and traditional dementia care, clinicians often receive little formal training in it. A global survey found major gaps in education and confidence, underscoring the need for dedicated resources, like Dr. Gallée's PPA roadmap, built specifically for this population. Do you ever wish you could step back in time and undo the missteps and errors of the past? What if you had the opportunity to build something from the ground up? Certainly, knowing what you know now, you could begin in a better place. But of course, there's always pitfalls with new beginnings, even with the knowledge of lessons from the past. You could, however, make a positive impact on that new beginning. Welcome to the Aphasia Access Conversations podcast. I'm Jerry Hoepner, a professor from the University of Wisconsin Eau Claire, and co-facilitator of the Chippewa Valley Aphasia Camp, Blue Gold Brain Injury Group, Mayo Brain Injury Group, Young Persons Brain Injury Group, Brain In-Cog, 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 about their aphasia care through a variety of educational resources. I'm privileged to introduce today's guest, Dr. Jeanne Gallée, who is a clinical scientist in the Department of Medicine at the University of Washington. Dr. Gallée is a licensed speech language pathologist practicing in the greater Washington state area. She completed her Bachelor of Arts in Cognitive and Linguistic Sciences at Wellesley College in 2016 and Doctor of Philosophy at Harvard University in Speech and Hearing Bioscience and Technology in 2021. She has been recognized as a Distinguished Early Career Professional by ASHA and a Distinguished Scholar by the Tavistock Trust for Aphasia. Her work is dedicated to improving assessment practices and functional outcomes for individuals living with aphasia and neurodegenerative conditions. Jerry Hoepner: Jeanne, it's really nice to see you again today, and to have this opportunity to have a conversation with you as a recent recipient of the Tavistock Scholar Program, and to talk about your work with individuals with primary progressive aphasia. So, thanks for being "on" today for the conversation. Jeanne Gallée: Thank you so much for having me, Jerry. I'm really honored to be here. Jerry Hoepner: Likewise, I'm really excited for this conversation, and as I just alluded to, I wanted to congratulate you on being awarded the first Tavistock Scholar with an emphasis doing work in primary progressive aphasia, and I thought maybe I could get your thoughts on being selected as a Tavistock Scholar. Jeanne Gallée: Thank you. It feels honestly incredibly remarkable in the sense that I think it represents a shift in how we're thinking about the separate diagnoses of progressive aphasia versus an aphasia that's due to an acute injury. And I'm really honored to be a part of that. I think there have been many discussions growing over the years, and I think we're seeing that shift in how we do think about addressing assessment and intervention and general care for people across the aphasia continuum. Jerry Hoepner: Agreed, I think there's been so much growth in the last five years in that area. I can remember at the outset of the pandemic, having discussions about "What do we do with people with primary progressive aphasia who were a part of our aphasia group? Should they be a part of our aphasia group? How do we pivot to that in an online context?" and it feels like we've come so far in our conversation about where primary progressive aphasia fits in in all of those different contexts. Jeanne Gallée: Right, I entirely agree, and I think the journey of my own work has already evolved in so many ways that I couldn't have imagined, like you say, five years ago I completed my doctoral work March 2021 and just seeing the phenomenal amounts of change that have really taken place since then has been incredible, and I feel very lucky to be part of that momentum right now. Jerry Hoepner: Absolutely, it's exciting to see these things move forward. And one of the differences that I see is primary progressive aphasia started out within the Life Participation Approach, just soundly from day one, as opposed to a lot of aphasia care, which has kind of evolved from this medical model, and how refreshing it is to see something built from the ground up. Done right, so to speak. I don't know if you have thoughts on that piece… Jeanne Gallée: No, I do. I think that's a really interesting point. I think I might be part of the camp that at times feels like progressive conditions get a little bit lost in the rehabilitation space, but I think you're absolutely right. I think the absence of pharmacological treatment, or a cure that has long standing effects for these progressive conditions has made rehabilitation specialists much more attuned to focusing on quality of life, life participation, maintaining autonomy, and so forth. So, I think I forget that perspective sometimes. Perhaps from the space that I work in, I tend to be in a more interdisciplinary environment where I feel on the opposite end. I'm often asked for justification for providing these types of services, and that fits in nicely with our previous discussion on how we do see that differentiation and how people with aphasia due to a progressive condition may be siloed from people who have the more quote unquote traditional aphasia symptoms. Jerry Hoepner: Yeah, that's a really good point. And you know, referring to those previous conversations we discussed that need for primary progressive aphasia to have a space of its own. It's tricky because it doesn't fit into post-stroke aphasia quite right, and it doesn't fit into the Alzheimer's and dementia world quite right. So, yeah, it's nice to see this developing in the Life Participation kind of context, really excited about Anna Volkmer's conference dedicated to primary progressive aphasia. Yeah, what an excellent point, that even though we feel like it's great to build it from the ground up, there's still people in that interdisciplinary context, who are very much looking at this, like,"Justify this. How is having conversations and doing activities with someone justifiable, as a, you know, as a skilled intervention?" Jeanne Gallée: Right. I think a lot of it comes back to misunderstandings about the scope of our profession. So, coming from the speech language pathology standpoint, we may have a perspective that other providers may not. And it's interesting, particularly when that confusion or disconnect happens in conditions that are communication led, where we see the symptoms primarily touching upon our ability to interact verbally or non-verbally to communicate. And it's fascinating, and I think speaking to that silo, we see PPA having been a relatively new and still considered very rare condition, but there's so much overlap with other conditions, right, in the kinds of symptoms that we see and there's so much where, as any speech pathologist with experience in acquired neurogenic communication disorders, we can see that we can apply our skill set, but again, likely due to the terminal nature of the condition, we end up seeing providers taking it a different route, or saying either there's only the pharmacological route, or we just let it lie or let it be as is, which we wouldn't do with any other condition. We wouldn't say that for someone with ALS. We would want to provide them the supports, even if they're temporary, to improve quality of life. So, it is an interesting, almost cultural phenomenon as well. I think. Jerry Hoepner: Yeah, that I think it's really fascinating, and I'm so glad you brought that up. It reminds me of kind of the phrase, the company we keep, right? It's easy to be amongst, you know, people who are in the [Life Participation Approach to Aphasia] LPPA world, who think the way that we think, and who do the way that we do. And I do a lot of work in the area of cognitive communication disorders with acquired brain injuries, and so forth, and there's been a remarkable shift in the last five years there as well towards a more Life Participation bio psychosocial approach, and some of the work that I've been passionate about for years has been more and more accepted. So you feel like when you're in that company of all of your people that everything's all good, but it also reminds me of something that my friend Natalie Douglas always says, which is that "We need to be out there amongst others who need to understand the importance of this kind of a perspective, and sharing that." And when you talked about those other professionals, I really didn't think about that until you said that. Right, really important to get them on the same page, and to help them understand why this is so important. Jeanne Gallée: Right? And I think that's where the conference that you mentioned, the firs

Show Notes: Episode #139 Behavioral Activation with Deena Schwen Blackett 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 Deena Schwen Blackett about group treatment for aphasia.    Guest info Dr. Deena Schwen Blackett is an Assistant Professor in the School of Communication Sciences and Disorders at the University of Central Florida and director of the Communication, Aphasia Recovery, and Emotion (CARE) Lab. Dr. Schwen Blackett's research focuses on understanding the relationship between emotion and language in aphasia, developing methods for improving psychosocial well-being in aphasia, and improving aphasia rehabilitation outcomes.   Listener Take-aways   Describe why behavioral activation's reduced linguistic demands and focus on functional life areas make it particularly well suited to use with people with aphasia. Locate behavioral activation as psychosocial intervention within ASHA's counseling domain of service delivery and SLPs' scope of practice. Connect behavioral activation principles to the Life Participation Approach to Aphasia and the Aphasia Framework for Outcome Measurement (AFROM). 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. Deena Schwen Blackett, an assistant professor in the School of Communication Sciences and Disorders at the University of Central Florida, and director of the Communication, Aphasia Recovery, and Emotion (CARE) Lab. Dr. Schwen Blackett's research focuses on understanding the relationship between emotion and language in aphasia, developing methods for improving psychosocial well being in aphasia, and improving aphasia rehabilitation outcomes. Deena Schwen Blackett, thank you so much for being here. I'm really glad to be talking with you today.   Deena Shwen Blackett  Thank you so much for having me. I'm very honored to be here as a longtime fan of Aphasia Access.   Lyssa Rome  Often on this podcast, we get started by asking people about whether they've had an aha moment, or if there's another anecdote that they want to share. What made you want to study emotions and psychosocial interventions and aphasia?   Deena Shwen Blackett Yeah. So as an undergraduate at Purdue University, I started out in chemical engineering, which is quite different. But about midway in my sophomore year, I decided that's not the career for me, and I was exploring other options. I was really drawn to psychology, actually, and I decided to switch my major to psychology. I was really considering a career in psychiatry or clinical psychology, but I wanted to double major in something, to kind of set myself a little bit apart from the massive amounts of psych majors.    I hadn't actually heard about speech language pathology until my aunt brought it up to me and the you know, I decided, oh, this could be a great compliment to psychology, and I decided to double major. And the more I learned about our field, and especially aphasia, I became just so hooked. And I reflected quite a bit on how impactful it could be to help somebody with communication, given how essential it is to our daily lives and our relationships and our overall well being.    When I went to graduate school at The Ohio State University to really study aphasia more and learn how to do research, I worked with Dr. Stacy Harnish there. In our early discussions about research and projects, she told me about a patient she had with pretty severe aphasia, who, whenever they would do a picture naming task, whenever the word "gun" would come up, she was able to say it very quickly and fast. And that was intriguing. It was something about the emotionality of that that helped her say the word, because otherwise it was very difficult for her. That drew me in immediately. I really wanted to understand how emotional language was different from non-emotional language. And this phenomenon of, you know, people cursing pretty fluently, even though they have very severe aphasia, or saying just very emotional words.    It dates back to the 19th century, but we didn't really know much about it. It hasn't really been empirically studied very much. So I was really curious about whether we could harness that ability of more preserved emotional language in therapy to maybe enhance communication ability. So reflecting back, I've always had this strong interest in emotion and psychology and how that kind of ties into our field of communication.   Lyssa Rome  It is so interesting to observe, and I have had similar observations in my clinical practice. I'm wondering if you could tell us a little bit about the work that stemmed from that early interest, and you've studied in terms of emotional stimuli.   Deena Shwen Blackett   So this was really the bulk of my work as a PhD student, and I was really interested in, again, empirically, studying how emotionality of stimuli could impact language processing, but especially word retrieval, given how much that is affected in aphasia. I designed a series of word retrieval tasks, including object picture naming, action picture naming, verb generation, where participants saw a noun and they had to name a verb associated with it, and category member generation, where they saw a category and had to name one thing in that category. So each of these four tasks had a set of positively valence stimuli. So in the case of object picture naming, like a picture of puppies. They also had a set of negatively valence stimuli, like a picture of cockroaches. And then another set of neutral stimuli, so something like a picture of cows, where in our culture, like that's pretty neutral. And so I had people name in each of these tasks, and we looked at how quickly they named and how accurately they named.    We looked at both neurotypical aging adults and people with aphasia, because we actually didn't really know much about how emotional stimuli affects word retrieval in neurotypical, normal aging. I really expected that people would respond faster and act more accurately to the emotional items because of that emotional language phenomenon that we were just talking about. But I found the opposite. So people named emotional images and words less accurately and more slowly than neutral, non-emotional items. The more I thought about this, you know, the more it kind of made sense to me, and is consistent with anecdotal reports from people with aphasia about when they are frustrated or angry or excited even, it's really much harder for them to think of the words they want to use and express themselves, so it really mimics those reports and is a nice foundation that led me to continue this work in emotion and language.     Lyssa Rome  So I'm curious then about how that where you're really doing your the focus was on naming right and answering this question about emotion, like the emotional valence of naming. How did that lead into the work that you have done more recently on behavioral activation for people with aphasia?   Deena Shwen Blackett   Yeah, great question. So after I graduated with my PhD, I did a postdoc at the Medical University of South Carolina. When I was there, based on my clinical work, when I was finishing up my practice, and you know, the interactions I had in research with people with aphasia, I just really felt this strong urgency to do more to support emotional well being of patients with aphasia. I could see a clear path of clinical need and translation that I wanted to explore more because there. Myself as an SLP, I just knew there was more that we could be doing as clinicians, and I wanted to explore that. So I initiated a collaboration with a clinical psychologist during my postdoc, we wrote a pilot grant, and it was funded, and so we had the opportunity to c- develop a protocol for a psychosocial-focused intervention for people with aphasia that was really mostly focused on using a technique called behavioral activation. And so that was where my most recent work has been focused, truly, because of how urgent I feel like the need is, and I see a clear path toward how it could be implemented clinically.   Lyssa Rome  Yeah, yeah. I mean, I think that everyone who works with people with aphasia would probably agree about that urgency. So let's take a step back, and I'm wondering if you could define for us, what is cognitive behavioral therapy, what is CBT? What's behavioral activation?   Deena Shwen Blackett  Great question. So cognitive behavioral therapy, or CBT for short, is really an umbrella term nowadays that refers to mental health interventions that are centered on the idea that our thoughts, our behaviors, and our feelings are all interconnected, and they all relate to each other, and so we can regulate or improve our mood or our feelings through a change in behavior or a change in our thinking.    Behavioral activation is just a very specific CBT technique or skill that can be del

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

In this episode you will discover: Identity Is Shaped in Interaction — Narrative identity forms and reforms through relationships and stories shared with others — making connection a core ingredient of recovery, not a bonus Visual Methods Unlock What Words Cannot — Collage-making, photos, and art give people with aphasia a pathway into identity work that talk alone can't always reach. Identity Reconstruction Is a Long Game — People continue navigating complex, shifting identities for years after stroke. Our systems need to follow them farther into that journey, not stop too soon. Sit on Your Hands and Truly Listen — The most powerful thing you can offer is unhurried, attentive presence. Learning to wait and watch — rather than fill the silence — is a skill worth deliberately practicing. If you've ever felt like there's more to aphasia care than the therapy protocol in front of you, or wondered what identity-centered practice actually looks like in the real world, 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 from Central Michigan University and a member of the Aphasia Access Podcast Working Group — a community dedicated to supporting better aphasia care. Rianne Brinkman is a speech-language pathologist and linguist from the Netherlands whose PhD project "Who Am I Now?" explores identity changes in people with aphasia through storytelling and creative arts-based approaches. Before her doctoral work — supported by the Dutch NWO Teacher Research Grant — she spent years as a clinician in rehabilitation and aphasia centers, and that deep clinical foundation shapes everything she brings to her research. She teaches in the Speech and Language Therapy program at Hanze University of Applied Sciences in Groningen and conducts her research at the University of Humanistic Studies in Utrecht. Today's conversation feels especially personal to me. Like Rianne, I came to doctoral work after years of established clinical practice, and my own research centers on narrative identity and aphasia through the My Story Project and the PULSE framework. So, when she sought me out at a conference in 2019, I recognized immediately that we were kindred spirits working toward the same questions from different corners of the world.   So, let's get into the conversation. Katie Strong: Well, before we dive into your work, I wanted to share something with our listeners. One of the things that drew me to this conversation is that we have a parallel story. We both came to do our PhDs after established clinical careers, and you're in the thick of that journey. I'd love to start with what made you decide to go back, and how did your clinical work shape what you wanted to pursue? Rianne Brinkman: I used to work in rehabilitation for a long time, and then I moved from one part of the Netherlands to another part, and there was not much work for me. So, I got the opportunity to help establish an aphasia center. And of course, if you look at the rehabilitation phase, that's far more deficit oriented, so that's very different than in the chronic phase, where an aphasia center comes into place. So, I really had to change my view of therapy. I had to establish a few groups on identity. I started reading on identity, on communicative participation, on how to do that in groups. So that's really where the interest came from. Katie Strong: I love hearing that. Sometimes as we go into a different phase or area of work, and it really re-shapes our thinking and how we engage with our clients or patients. Rianne Brinkman: Yeah, it does. And in those groups, I worked together a lot with creative therapists, and I learned so much from them, because then I realized that if you use narrative approaches, and you combine them with visual arts or arts therapy, that it can mean so much for somebody. They can get so many more means of expression. So, yeah, I learned a lot from that. Katie Strong: I love that! It is powerful. And I'm really looking forward to talking more about this. I was curious, you know, what the experience has been like from a clinician turned researcher, what you know, what's that actually been like for you? And has there been anything that surprised you most about the transition? Rianne Brinkman: I did not realize that much how much you yourself as a person influences the conversation with somebody with aphasia, you know that co-construction part. So that your identity aspects really influence how the conversation takes place and what somebody chooses to tell you or not. So that is really momentary, and so it's just a snapshot, really, when you do this. So, I became really aware of that. But also, your own norms and values and the way you listen and all those sorts of things. It's just a different way of doing therapy. And then you're doing it as research which is different. I think that's one thing, sometimes I'm a little bit too much the therapist, so I really have to be a researcher again, you know? So, you change between those roles.   Katie Strong: Yes, it is a shift, right? Rianne Brinkman: Yeah, exactly, exactly. Katie Strong: Yeah. And thinking about how those two roles are different or powerful, sometimes combined. Well, let's talk a little bit about the work that you're doing. And I want to acknowledge that what we're talking about today really all comes out of your doctoral journey, which is really remarkable. I thought we could first talk about your 2025 scoping review that really mapped the landscape of what we know about identity changes in aphasia, and it also laid the groundwork for everything that followed. Could you walk us through that narrative identity model that came out of the review?   Rianne Brinkman: Yeah. That was quite complex, because there's so much written about identity, and everybody defines it slightly in a different way, or uses different words. So, what we tried to do is really get a grip on that literature to see what was written on identity changes in aphasia, and what kind of theory was used. And what we saw was that everything is from a social constructionist perspective, really. But then there are many different philosophers and different authors that write about identity. So, what we tried to do was because, of course, Barbara Shadden, she's very foundational in this work. With her colleagues, she created the four domain interdisciplinary framework. So, we tried to use that in the model as one of the foundations. And then, of course, the work of Paul Ricoeur, who's a French philosopher who writes about that you only shape your identity through interaction with other people which gives meaning to the stories you share with other people. And the work of Bamberg, and he talks about dilemmatic spaces. So what it means, really, is that I think identity, you only shape in interaction, and we tried to visualize that in the model. So, there's an "I" part, and that's about you, the personal domains, and there's the "we" part, and that's about the social domains. We tried to visualize how those domains interact, including temporality, because you shape your identity in the here and now, but also through time. And then in the middle of the model, there's a head with interconnected gears, and that's where it all comes together. That's you at your identity, your narrative identity, a specific point in time. So that's the model in a nutshell. And then you've got, of course, all those personal domains, like your biography, agency and power, communicative abilities, your roles you fulfill in life. And then the social domains are, like your social situation, your cultural background, society and all of that works together, informing, shaping your identity. Katie Strong: It's powerful work, and it is complex. I appreciate the work that you led to be able to assimilate and give us this model for us to be really thinking about narrative identity in a way that takes all of those big thought leaders and helps it become more approachable to those of us that are interested in narrative identity as researchers, but also as clinicians. Rianne Brinkman: That's great. Thank you. Katie Strong: Thank you for that work. And then you have another recent paper. Congratulations, by the way! That paper just came out earlier this year in 2026 and I guess I should say to the listeners, we'll have both articles linked in the show notes, as well as some other resources that will be interesting to explore if you're into this topic. This 2026, article is really the first of its kind to look at identity in this early stage, six to eight weeks after admission to rehabilitation. So, I was hoping you could talk with us about who were these people and what were you doing together in these sessions? Rianne Brinkman: Yeah. So, it's the first session of a longitudinal study, so I'm following those people over two years. And so, there are 22 people with aphasia. Unfortunately, two of them couldn't continue as one of them, I couldn't organize the reflection session, and one of them, I just couldn't reach anyone. But the other 20 people are still in the study, which is really amazing! Katie Strong: That is really amazing! Rianne Brinkman : Yeah, that's really nice. They're all middle aged people who range in age from their 30s to their 60s until 67. They also have different severities of aphasia. Some people were still clinical inpatient, some of them already were outpatient. And then I tried to elicit their story with visual participatory methods in combination with the narrative approach. So those sessions are quite long, sometimes two and a half to three hours, so it's a lot of time. It's really nice to just sit with them and connect. During the first session I did collage making. I just took a lot of magazines with me and scissors and glue and everything, and then we just sat d

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 bas

This episode features Mark Harder, an individual with aphasia who has developed numerous programs to engage individuals with aphasia in returning to meaningful life activities. Mark shared his personal experience with aphasia following a stroke and heart attack, discussing his recovery journey and the role of poetry in his healing process. He described his involvement in various aphasia support initiatives, including poetry groups, conferences, and advocacy work. Mark's efforts to raise awareness and support others with aphasia have led to the creation of multiple programs and events, demonstrating his commitment to the aphasia community.

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

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

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

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 j

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

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 mys