Aphasia Access Conversations

Aphasia Access
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Aphasia Access Conversations

Aphasia Access Conversations brings you the latest aphasia resources, tips, and a-ha moments from Life Participation professionals who deliver way more than stroke and aphasia facts. Topics include aphasia group treatment ideas, communication access strategies, plus ways to grow awareness and funds for your group aphasia therapy program. ​This podcast is produced by Aphasia Access. Search our courses, resources, and events by keywords at https://bit.ly/aphaccacademy.

  1. 2D AGO

    Episode 130: A tool for sneaky good interprofessional learning and collaboration: In Conversation with Hillary Sample and Dr. Steven Richman

    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

    54 min

  2. JUN 24

    Episode 129: “Helping myself by helping other people: In Conversation with Cindy “Yee” Lam-Walker”

    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

    30 min

  3. JUN 17

    Episode 128: From Participant to Leader: Community Building in Aphasia Recovery – A Conversation with Sherry Lovellette

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

    32 min

  4. JUN 11

    Episode 127: Beyond the Plateau: Mindfulness in Aphasia Recovery – A Conversation with Lori Gray

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

    47 min

  5. APR 23

    Episode 126: Collaborative Referencing with Dr. Suma Devanga

    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 aphasia, dysarthria, and other neurogenic conditions. 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 Dr. Suma Devanga about collaborative referencing, gesture, and building rich communicative environments for people with aphasia.   Guest info Dr. Suma Devanga is an assistant professor in the Department of Communication Disorders and Sciences at Rush University Medical Center, Chicago, where she also serves as the director of the Aphasia Research Lab. She completed her PhD in Speech and Hearing science from the University of Illinois. Urbana Champaign in 2017. Dr. Devanga is interested in studying aphasia interventions and their impacts on people's everyday communication. Her recent work includes investigating a novel treatment called the Collaborative Referencing Intervention for Individuals with aphasia, using discourse analysis methods and patient reported outcome measures, studying group-based treatments for aphasia, and studying the use of gestures in aphasia. Additionally, she is involved in teaching courses on aphasia and cognitive communication disorders to graduate SLP students at Rush. She also provides direct patient care and graduate clinical supervision at Rush outpatient clinics.   Listener Take-aways In today’s episode you will: Understand the role of collaborative referencing in everyday communication. Learn about Collaborative Referencing Intervention. Describe how speech-language pathologists can create rich communicative environments.   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. Suma Devanga, who is selected as a 2024 Tavistock Trust for Aphasia Distinguished Scholar, USA and Canada. In this episode, we'll be discussing Dr. Devanga’s research on collaborative referencing, gesture, and building rich communicative environments for people with aphasia.   Suma Devanga is an assistant professor in the Department of Communication Disorders and Sciences at Rush University Medical Center, Chicago, where she also serves as the director of the Aphasia Research Lab. She completed her PhD in Speech and Hearing science from the University of Illinois. Urbana Champaign in 2017. Dr. Devanga is interested in studying aphasia interventions and their impacts on people's everyday communication. Her recent work includes investigating a novel treatment called the Collaborative Referencing Intervention for Individuals with aphasia, using discourse analysis methods and patient reported outcome measures, studying group-based treatments for aphasia, and studying the use of gestures in aphasia. Additionally, she is involved in teaching courses on aphasia and cognitive communication disorders to graduate SLP students at Rush. She also provides direct patient care and graduate clinical supervision at Rush outpatient clinics. Suma Devanga, thank you so much for joining us today. I'm really happy to be talking with you.   Suma Devanga Thank you, Lyssa, thank you for having me. And I would also like to thank Aphasia Access for this wonderful opportunity, and the Tavistock Trust for Aphasia and the Duchess of Bedford for recognizing my research through the Distinguished Scholar Award.   Lyssa Rome So I wanted to start by asking you how you became interested in aphasia treatment.   Suma Devanga I became interested in aphasia during my undergraduate and graduate programs, which was in speech language pathology in Mysore in India. I was really drawn to this population because of how severe the consequences were for these individuals and their families after the onset of aphasia. So I met hundreds of patients and families with aphasia who were really devastated by this sudden condition, and they were typically left with no job and little means to communicate with family and friends. So as a student clinician, I was very, very motivated to help these individuals in therapy, but when I started implementing the treatment methods that I had learned, what I discovered was that my patients were showing improvements on the tasks that we worked on in therapy. Their scores on clinical tasks also were improving, but none of that really mattered to them. What they really wanted was to be able to easily communicate with family, but they continued to struggle on that, and none of the cutting-edge treatment methods that I learned from this highly reputable program in India were impacting my patients’ lives.   So I really felt lost, and that is when I knew that I wanted to do a PhD and study this topic more closely, and I was drawn to Dr. Julie Hengst’s work, which looked at the bigger picture in aphasia. She used novel theoretical frameworks and used discourse analysis methods for tracking patient performance, as opposed to clinical tests. So I applied to the University of Illinois PhD program, and I'm so glad that she took me on as her doctoral student. And so that is how I ended up moving from India to the US and started my work in aphasia.   Lyssa Rome I think that a lot of us can probably relate to what you're describing—that just that feeling of frustration when a patient might improve on some sort of clinical tasks, but still says this is not helping me in my life, and I know that for me, and I think for others, that is what has drawn us to the LPAA.   I wanted to sort of dive into your research by asking you a little bit more about rich communicative environments, and what you mean by that, and what you mean when you talk about or write about distributed communication frameworks.   Suma Devanga So since I started my PhD, I have been interested in understanding how we can positively impact everyday communication for our patients with aphasia. As a doctoral student, I delved more deeply into the aphasia literature and realized that what I observed clinically with my patients in India was consistent with what was documented in the literature, and that was called the clinical-functional gap. And this really refers to the fact that we have many evidence-based aphasia treatments that do show improvements on clinical tasks or standardized tests, but there is very limited evidence on these treatments improving the functional use of language or the everyday communication, and this remains to be true even today.   So I think it becomes pretty important to understand what we are dealing with, like what is everyday communication? And I think many aphasia treatments have been studying everyday communication or conversational interactions by decontextualizing them or reducing them into component parts, like single words or phrases, and then we work our way up to sentence structures. Right? So this approach has been criticized by some researchers like Clark, who is an experimental psychologist, and he called such tasks as in vacuo, meaning that they are not really capturing the complexity of conversational interactions. So basically, even though we are clinicians, our ultimate goal is improving everyday communication, which is rich and emergent and complex, we somehow seem to be using tasks that are simplified and that removes all of these complexities and focuses more on simple or specific linguistic structures. So to understand the complexities of everyday communication, we have shifted to the distributed communication framework, which really originates from the cultural historical activity theories and theories from linguistic anthropology.   Dr. Julie Hengst actually proposed the distributed communication theory in her article in the Journal of Communication Disorders in 2015, which highlights that communication is not just an individual skill or a discrete concept, but it is rather distributed. And it is distributed in three ways: One is that it is distributed across various resources. We communicate using multiple resources, not just language. We sign, we use gestures, or facial expressions. We also interpret messages using such resources like dialects and eye gaze and posture, the social context, cultural backgrounds, the emotional states that we are in, and all of that matters. And we all know this, right? This is not new, and yet, we often give credit to language alone for communication, when in reality, we constantly use multiple resources. And the other key concept of distributed communication theory is that communication is embedded in socio- cultural activities. So depending on the activity, which can be a routine family dinnertime conversation or managing relationships with your co workers, the communicative resources that you use, their motives, and the way you would organize it, all of that would vary. And finally, communication is distributed across time. And by that we mean that people interpret and understand present interactions through the histories that they have experienced over time. For example, if you're at work and your manager says you might want to double check your reports before submitting them based on prior interactions with the manager and the histories

    37 min

  6. MAR 25

    Episode 125. “It was like being put in a damn box”: Healthcare experiences of Black Americans in conversation with Dr. Warren Brown

    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 my friend and colleague, Dr. Warren Brown. I’ve been fortunate to work with Dr. Brown for the past two years and I’m excited to share the work he’s been doing in service of the LPAA. Warren C. Brown, Ph.D., CCC-SLP is an Assistant Professor in the Department of Communicative Disorders at Jackson State University. His research explores the intersections of traumatic brain injury (TBI), aphasia, and healthcare disparities, with a focus on cultural and linguistic diversity in clinical care. He serves as a facilitator for the Black Aphasia Group at the Aphasia Center of Acadiana and has published on topics related to brain injury, intersectionality, and patient-provider communication. Dr. Brown is an active member of the American Speech-Language and Hearing Association (ASHA), National Black Association for speech Language Pathology (NBASLH), the Academy of Neurogenic Communication Disorders and Sciences (ANCDS), and Alpha Phi Alpha Fraternity Inc. Take Aways: Learn about health disparities faced by Black Americans. Learn about the perceptions of Black Americans towards their healthcare providers. Dr. Brown will continue to facilitate the Black Aphasia Group affiliated with the Aphasia Center of Acadiana. Dr. Brown and his team to are hoping to publish an anthology project featuring entries from Black Americans with aphasia by fall of next year. Dr. Brown plans to organize a symposium on aphasia at Jackson State University with a focus on diversity. Dr. Brown plans to present a poster on the anthology project at the upcoming Aphasia Access Conference.   Interview Transcript:   Jerry Hoepner: Alright. Well, Warren, it's good to see you today. I'm fortunate to see you on a regular basis. So, I think this is the second time we've connected today. For different reasons. But I'm glad to have you here as a part of the Aphasia Access Conversations Podcast. I'm hoping you can share a little bit about yourself. I know that some aphasia access affiliates will know you and know a little bit about your work. But I'd like others to get to know you and your work as well, so can you share a little bit about yourself?   Warren Brown: Yes, sir. Well, thanks for having me. For sure, this is an honor. I'm a recent graduate from the University of Louisiana and Lafayette. With my PhD. I studied under multiple folks. There. I studied under Anthony Salvatore, Dr. Judith Oxley, and Dr. Jamie Azios. My main areas of interest are traumatic brain injury, aphasia, and all neurogenic disorders related to marginalized populations. Prior to my doc program, I was a practicing clinician for 11 years or so I practiced in mainly acute care hospitals long term, acute care, hospitals, home health, and predominantly in Southern Louisiana. So, and I did a little bit of private practice. I did everything but child language disorders. So I prided myself when I started my doc program as being a clinician first, and thinking about clinical issues, first, because I was gracious enough to get a lot of great experience in my timeframe, so I kind of had a better idea about, you know the areas that I was most mostly interested in prior to going into my doc program. So, I'm married. I have 3 kids Wes, Evie, and Wells, which is my newborn and a lovely wife, Tatiana. I'm a new faculty member at Jackson State University in Jackson, Mississippi, and I love my job, and I love my students, and I love my research endeavors that I've done thus far. So, you know I'm fortunate enough to work with you, Dr. Hepner, Dr. Louise Keegan, Dr. Jamie Azios Dr. Judith Oxley. Still Dr. Anthony Salvatory. Still Theresa Gray, a few other folks. I'm just happy that Dr. Brandy Newkirk-Turner as well at Jackson State. I'm happy that I have a great group of mentors to ask questions to and bother from time to time. So, I'm just grateful. So yes, sir.   Jerry Hoepner: Well, yeah, it's been really fun working with you and getting to know you. And certainly, that really strong, diverse group of mentors is something to build upon for sure. That's a great group of people. So privileged to be a part of that a couple of things that we were going to talk about today. I want to get to your work with the black Americans with aphasia group, and I want to get to some of the new work that you've been doing on an anthology. I'll kind of leave it at that, for now you were gracious enough to share a manuscript. That you and Dr. Azios have under review right now. I know it's not quite published, but I'm wondering if you're willing to give us just a little bit of a preview of that work, and I have a few things that I just think were really powerful from reading that manuscript, and I'm interested in your thoughts on it. So, do you want to tell us a little bit about, like the general context of that manuscript?   Warren Brown: Yes, sir, so this was. This was actually a part of my dissertation. My dissertation was a mixed methods. Research project on healthcare encounters of African Americans with aphasia and without aphasia. But I was lucky enough to capture 8 interviews from a qualitative standpoint for that dissertation from African Americans with aphasia from across the United States. Different age ranges different levels of severity and obviously different etiologies from which caused them to acquire aphasia. The paper really came about, because, again, clinically, you know, I always realized that individuals who had aphasia who were black, had a lot of different experiences when it came to healthcare providers and practitioners. And oftentimes, when I would go into a home or see them in a hospital, they would be surprised that I was the individual to see them right. They would think I was a dietary staff member. They would think I was DNA. They would think I was a nurse, everything but a speech pathologist. So, when I had the opportunity to lead or facilitate a group which was the California the conversational group with Dr. Teresa Gray. You know I love to hear the different experiences that those individuals were having, as well coinciding with what I knew what was going on in the field. So that's what spawned this idea about understanding the dynamics of what you know. These encounters were from a deeper perspective. So originally it was going to be just a regular project with Dr. Azios and I, but we felt it'd be better if we made it a larger scale project and added to a portion of my dissertation. So, we did so. We really look to understand those lived experiences of those individuals, how those healthcare encounters went for them before and after they acquired aphasia, and trying to understand, like different strategies and challenges, that you know they may have had to use to overcome some of those issues, and how, you know we could take what they were saying, and make that accessible to practicing clinicians to understand how to work with diverse populations a bit more you know. Yes, sir, so.   Jerry Hoepner: Yeah, I mean, I found a couple of points that well, actually, several within the background. And literature review that really struck me. There's several of these statistics, but a couple that really stood out to me were the percent of deaths among black Americans during the Covid pandemic. And just you know the marked difference between the amount of actual African Americans in those communities and the numbers that died. Which were that was just really striking to me. And then the other one. The other context that you wrote about was the study of 85 black Americans. That were a part of a VA. Study, a veterans affairs study and really just talked about their, you know, their feelings of being stereotyped by the professionals that we're dealing with them, treated and labeled as if they were uneducated, and addicts and angry and poor, and those really set the context for the study. Wondering if you can just kind of weigh in on those and other kinds of striking background pieces of information.   Warren Brown: Yes, sir, so you know, it's known that you know there is racial bias when it comes to African Americans in general, just because of how society is. But you know oftentimes in neurogenic disorders it's unstudied, right? You don't look at race and ethnicity as factors as being contributing factors to some of the issues that the populations that we service are dealing with, you know, looking at Covid alone. You know, we added, that I added that statistic because you know it just kind of highlighted how much racial disparities really are prevalent right and not just individuals with aphasia, but individuals who have a multitude of you call it metabolic issues, right or just issues in general when it comes to healthcare, and how sometimes these issues go unserviced or underserviced, or these individuals are not educated about what they need to do or what they need to accomplish, from a healthcare practitioner which ultimately leads to poorer outcomes across that population. You know. One of the things that we listed in that paper was also about just black women in general, right? Black women are twice as likely to have low birth weights of infants when compared to white women, and they also face lower rates of prenatal care right? Although that doesn't have much to do with aphasia. I think that that speaks to a larger picture than that.   Jerry Hoepner: Yeah.   Warren

    49 min

  7. 12/19/2024

    Episode 124: Friendship, literacy and reading in Aphasia: An Interview with Liz Madden

    Dr. Janet Patterson: Welcome to this Aphasia Access Aphasia Conversations Podcast, a series of conversations about the LPAA model and aphasia programs that follow this model. My name is Janet Patterson, and I am a research speech-language pathologist at the VA Northern California Healthcare System in Martinez, California. Today, I am delighted to be speaking with Dr. Elizabeth Madden, an Assistant Professor at Florida State University in the School of Communication Sciences and Disorders and an affiliate of the Institute for Successful Longevity. Liz also leads the FSU Aphasia Research Laboratory. Liz's research, teaching and clinical interests focus on rehabilitation of aphasia, and specifically on understanding the relationship between spoken and written language abilities in individuals with aphasia and developing behavioral treatments to address reading and writing disorders post stroke. Her work also addresses the impact of aphasia on the friendships and social well-being of people with aphasia and their care partners. These Show Notes accompany the conversation with Liz but are not a verbatim transcript.   In today’s episode you will hear about: the power of friendship and what people with aphasia and care partners think about how aphasia can affect the ability to create and sustain friendships, the definition of literacy and its behavioral components, and behavioral treatments for reading comprehension deficit in aphasia.   In 2024, Liz was named a Distinguished Scholar USA by the Tavistock Trust for Aphasia UK. The Tavistock Trust aims to help improve the quality of life for those with aphasia, their families and care partners by addressing research capacity related to quality-of-life issues in aphasia. Congratulations on receiving this honor, Liz. Aphasia Access collaborates with the Tavistock Trust for Aphasia in selecting the awardees and is pleased to have the opportunity to discuss their work and the career influence of the Tavistock Award.   Welcome Liz, to Aphasia Access Conversations.   Dr. Liz Madden: Thank you, Janet. I'm really happy to be here today. I also say thank you to Aphasia Access and to the Tavistock Trust for Aphasia. I'm very grateful for this award and excited to have this conversation.   Janet: I'm excited to be talking to you, my friend and research partner in several endeavors that we've been working on over the last few years.   Liz, as we've said, you were named a Tavistock Trust Distinguished Scholar USA for this year, and you join a talented and dedicated group of individuals. How has receiving the Tavistock Award influenced your clinical and research efforts in aphasia,   Liz: I first wanted to extend that thank you to the Tavistock Trust for Aphasia, and specifically Henrietta, the Duchess of Bedford and the honorable Nicole Campbell, and just a very gracious, sincere thank you for all the time and effort and support they give to aphasia researchers. I would say, I'm just delighted and very humbled to be recognized this year. I would say further that this award motivates my work that is focused on trying to really make an impact on the lives and quality of life and successful living for people who have aphasia and continuing my work. My beginning work was really more impairment focused, which some of that we will talk about, and I really value that. But having this award, and the more I stay in the field, it is extending that and making sure that everything I'm doing always is directly related to helping the lives of people with aphasia.   Janet: That leads right into the question I'd like to begin with Liz, which is about your recent work investigating the role of friendship for persons with aphasia. I believe in the power of friendship and community during joyful times and also during the sad times in one's life. In Aphasia. Access podcast episode number 119, Finding the person in front of aphasia, I talked with your friend and colleague, Dr Lauren Bislick, with whom I believe you collaborate to investigate friendship and aphasia. How did you become interested in this aspect of aphasia, and what can you tell us about your work in this area and your collaboration with Lauren?   Liz: Lauren and I did our Ph.D.’s together. We both were mentored by Diane Kendall at the University of Washington, so Lauren and I are Ph.D. sisters. Also, we were both at Project Bridge, led by Dr. Jackie Hinkley in 2018. That's really where my interest in friendship began. That conference brought together researchers, speech-language pathologists, people with aphasia, and their friends and family. I was the researcher at a table, and we ended up being Team Friendship. Lauren was also at this meeting, but she was at Team Yoga; Lauren does a lot of work with friendship, but also with yoga. My other colleague who does a lot of friendship work with me is Dr. Michelle Therrien here at FSU. She primarily works with children who use AAC, but her main research is friendship. She and I had already had some conversations about the importance of friendship, particularly for people who have communication disorders. The idea was we leave the conference and to take action and carry out some of the goals that were generated from that discussion. So that's when I reached back out to Lauren, because she was at that conference. Then I also reached out to my friend, Michelle Therrien, and other individuals who became part of our Team Friendship, Dr. Sarah Wallace, who's also one of our good friends and collaborators, and Rachel Gough Albritton who is one of Jackie Hinkley’s former doc students and here at FSU as well. and the office of research. That is the background of some conversations before Project Bridge, but really for me, coming back and actually starting studies addressing different aspects of friendship, which I know we'll talk more about, was really brought about by the Project Bridge conference.   Janet: That is quite a story, and I can see you sitting around the table and developing Team Friendship - good for you.   We all know, Liz, that one of the unfortunate consequences of aphasia can be the loss of or the diminishing of friendships, or the disruption of the communication skills important to developing and sustaining friendship and community. What have you learned from people with aphasia about their successes and challenges in sustaining and creating new friendships.   Liz: Yes, good question. Well, at that conference that I mentioned, there were five or six people with aphasia, and initially our table was labeled something like, What happens in the long run? and we started having conversations. It was very clear after our initial conversation that the group centered on relationships and friendship, so we shifted to being friendship only. I will say, just at that table, it became very clear to me, that's what rose to the top when the group was thinking about the bigger picture of living life.   In a research project we've done there was a small sample of 15 people with aphasia, and we talked to them over time. I think the timing of a conversation is really something important to keep in mind when we're talking to people with aphasia about any topic, of course, but particularly friendship. From other studies we've noticed that responses are really different. If we're talking during the early days, maybe the acute days, versus the chronic days, we'd get really different responses. Just a quick summary, again, this was 15 people and a unique set. Most people in our study were a part of aphasia groups, and, of course, really motivated to do research. But I will say, when we looked at their responses, when asked to think back to the early days, all different aspects of friendship, how supported they felt, or how they were able to communicate, and we compared it to their responses in the now. Overall, the pattern was less satisfaction, feeling less supported or less able to engage in those earlier days, but more of a recovery pattern over time, but again, not for everybody. There were still a few people in our group that were reporting not having many friends. Our paper had a different light, a positive light about friendships. Some of the other papers out there have a more negative tone. It's a very important area we need to address. I was happy to see this group reporting, now that they had been living with aphasia for several years, their pattern of more negative responses early, and a recovering pattern now. They reported making friends with other people who have aphasia, and finding at this point, who are those good friends.   There's other great work being done by other colleagues, Brent Archer, Jamie Azios and Katie Strong, who are studying the same topic. They had a great paper that describes who stuck around, they were examining the next steps of what it takes to support the positive recovery that we know does happen for some people.   Janet: I like the positive perspective you are taking. Given that one has had a stroke, and given that the this is the situation in life, what is the positive? What can you do? Who are your friends? Look at positive ideas rather than publishing research on all the negative aspects. Kudos to you for doing that.   Liz: Thanks, all of it's important, right? We have to know that. I think we had a special group. I think we had a particularly positive outcome, and it was good to know that friendships don't disappear for everyone. But I think there's something that those people had done and that their friends had done, that we're still trying to learn more about.   Janet: Thank you for that work. Liz. It makes me think about the aphasia journey in that it involves not just the person with aphasia, but also their care partners and all the people around them. In your investigations of friendship, what do the care partners of persons with aphasia tell you about their successes and challenges in sustain

    41 min

  8. 11/19/2024

    Episode #123: Engaging Care Partners, Sharing Stories, and Waffle Night Celebrations: A Conversation with Harold Regier and Erin O’Bryan

    In this episode you will:  Learn about how the Aphasia-Friendly Reading Approach was developed. Hear about the importance of actively engaging care partners in therapy through this storytelling approach. Learn the importance of celebrating stories and how to host your own version of a Waffle Night.   Katie Strong: Welcome to the Aphasia Access Aphasia Conversations Podcast. I’m Katie Strong, a  member of the Aphasia Access Podcast Working Group. I'm also a faculty member at Central Michigan University where I lead the Strong Story Lab. 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 Harold Regier and Dr. Erin O’Bryan. We’ll be talking about the Aphasia-Friendly Reading Approach that Harold developed for his wife, Rosella, who had aphasia and how Dr. O’Bryan took this approach into the lab to refine it for clinicians to use in sessions. Before we dive into the conversation, let me share a few details about our guests. First a bit about Harold. Harold R. Regier, B.S. Ed., BDiv. Theol., is a retired minister with a career path in programs addressing social justice issues. In retirement, his spouse, Rosella, had a stroke resulting in aphasia. His passion shifted to becoming an aphasia care partner focused on helping to recover language and communication skills. He is the author of “A Decade of Aphasia Therapy,” subtitled “Aphasia-Friendly Reading: A Technique for Oral Communication,” published in 2021.  Our second guest is Dr. Erin O’Bryan. Erin is an Assistant Professor in the Department of Communication Sciences and Disorders at Wichita State University, in Wichita, Kansas. Her major research, teaching, and clinical interests focus on helping people with aphasia communicate through scripts, stories, and phrases and teaching students and care partners how to support communication. Dr. O’Bryan directs the Wichita Adult Language Lab whose current projects focus on supported storytelling and Melodic Intonation Therapy. Welcome Harold and Erin. I’m looking forward to our conversation today. Erin O’Bryan: Thank you, Katie! I’ve been listening to Aphasia Access Podcasts for years, and so many of my heroes have been interviewed in this series. It is really an honor that you invited Harold and I to be on the podcast today! Katie Strong: I am so excited for our listeners to hear about how the Aphasia-Friendly Reading Approach was developed and expanded. This work is near and dear to my heart – particularly in this unique way of developing and telling stories. I feel compelled to disclose to our listeners that I am grateful to have been involved in this work as it was refined for clinical environments. So, I am going to come right out and say, this is my bias. Harold, I’m a big fan of yours and the Aphasia Friendly Reading Approach and of you Erin for how you brought this approach into the lab and studied it so that clinicians can use this approach. So, now let’s get started! Harold, can you share a bit with us about how the Aphasia-Friendly Reading Approach came to be? Harold Reiger: Sure. Thank you so much, Dr. Strong, for the privilege of being here to share just a bit of our story. You know, Rosella and I would have celebrated our 65th wedding anniversary if she had stayed with us just a few weeks longer. We had a very long and very happy marriage. She used to kid me, “We've been together so long we know what the other person will say before he or she says it.” Well, actually, aphasia kind of shattered that theory. But maybe there was a little bit of that was true. Well, anyway, Rosella was a retired public-school teacher with part of her career also involving children's curriculum development. She led many workshops, was a storyteller, and was a frequent guest speaker. Communication and broad coalitions were a strong suit for her. So, aphasia, loss of language was a huge loss for her. Perhaps that sets the stage for working so hard to restore some major storytelling. But I'm sure this is the same kind of feeling that every person who is a care partner with the person with aphasia has. How did we discover a technique for storytelling through oral reading? Really, I think I just stumbled into it. The cues came from Rosella. She could say many words. She had a strong voice, but she did not put words together in a way that made it possible for a listener to understand what she meant to communicate. So, I was highly motivated, wishing there was a way to help her tell her stories. Looking back, I now can see three of what I call ‘indicators’ that led me to the technique that I eventually called Aphasia-Friendly Reading. They were painting, reading, and church liturgy. So let me explain. Indicator number one, completely on her own, Rosella began to paint. Just shy of two years after her stroke, Rosella began to paint. She painted for four years. She painted 250 paintings. The choice of her subjects were all hers. Objects, scenery, flowers, roadside sightings, trips and vacations, past memories. And yes, stories, family stories, stories that she didn't have words to tell, but she could tell them with a brush. She gave every picture a title or caption, signed it, and dated it. And somehow she found those one, two, or three words to intelligibly, that is accurately, identify the picture that she had just painted. But after four years of painting those pictures, she put her paintbrush down, never to pick it up again. And yet I kept remembering that she was able to identify pictures accurately using those few words to explain what it was that she was telling with her pictures. But then indicator number two came, reading periodicals and books. She underlined periodicals with many circles, much underlining. For a long time, Rosella delved through as many as 40 or 50 books per month. She turned every page, but did she understand what she was reading? Frankly, I often wondered and doubted it. One day, Rosella was reading orally beside me, and I pressed my iPhone video button. Listen to just a few seconds of that reading. And while you listen, think of two questions. Could you understand what she was reading? What was the story that she was trying to tell? And secondly, do you think that Rosella was understanding what she was reading? So listen to that clip. Excerpt of Rosella reading from a book. You heard Rosella reading the story of she and her sister, Anna Grace, requesting radio station KNEX out of McPherson, Kansas to surprise their mother by playing it for her birthday. It was a song that the girls knew that their mother loved. And you heard her read those words, “I love those dear hearts and gentle people.” And then as she continued reading the lyrics of that song, she exclaimed, “Oh, Harold”, which was her way of saying how excited she was to recall that particular story. Now, that explanation, of course, was not in the book. Then there was a third indicator that I recognized, and that was liturgical reading. One day in church we were reading a call to worship displayed on the screen. We were reading responsibly with the leader reading the first line and the congregation reading the second line. I glanced to my side and was surprised to see Rosella reading with the congregation. Maybe it was only the first three or four words of the line, but she read these words accurately. A light went on in my mind. Might this be a hint of how to help Rosella participate in oral reading? Short sentences read with a co-reader who read every other line and written in an easy to follow format? And so I adapted various psalms into very short lines formatted for us to read responsively. I read the first line, she read the second. The result was amazing success. Let me just illustrate by us reading just a very short psalm for you. This is Psalm 150 that Rosella and I will read together. H: Praise the Lord! R: Praise God in his sanctuary. H: Praise God in his mighty firmament. R: Praise Him for his mighty deeds. H: Praise the Lord for his greatness. R: Praise him with the trumpet. H: Praise him with the lute and harp. R: Praise him with the dance. My thought then was, could we try to write other stories and read them in what I began to call Aphasia-Friendly Reading format and style? And so, I began in earnest to try to write other stories. Short sentences, familiar words, larger font. Each line considered a sentence, even if it was only one word. Label the first line H for Harold and the second indented line R for Rosella. As I started reading and continued to read every other line, this could set the tone, the rhythm, and the pattern for saying every word clearly. I thought it was time to try. And then I began to wonder, is there a setting that we could read stories to others? Could we create an audience in some way? When COVID hit, of course, I could not see Rosella in person anymore, for an entire year we were separated. And the only contact we had was FaceTime telephone calls. And those were really a disaster because we found it very difficult to communicate with each other when Roselle was not able to understand me and I wasn't able to understand her, except when we read Aphasia-Friendly stories. And so, I wrote many stories during that year. And we read those stories then as our connection during our FaceTime calls. And somehow we were able to survive COVID. But it was after COVID then that we were able to again get back together occasionally. And I would bring her back to my apartment. And there I would invite friends, usually a couple or two individuals to come over and I would serve waffles. I'm not a kitchen person, but I could make waffles. So, we'd have a simple meal, a simple supper that we could visit with each other and talk about anything that we would like. And Rosella a

    41 min
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Aphasia Access Conversations brings you the latest aphasia resources, tips, and a-ha moments from Life Participation professionals who deliver way more than stroke and aphasia facts. Topics include aphasia group treatment ideas, communication access strategies, plus ways to grow awareness and funds for your group aphasia therapy program. ​This podcast is produced by Aphasia Access. Search our courses, resources, and events by keywords at https://bit.ly/aphaccacademy.

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