Podcasts about Aphasia

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

  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 you've shared with them, you could interpret that message either as a simple suggestion or that there is a lack of trust in your work. So all in all, communication, I think, is a joint activity, and I think we should view it as a joint activity, and it depends on people's ability to build common ground with one another and draw from that common ground to interpret each other's messages.   Lyssa Rome I feel like that framework is really helpful, and it makes a lot of sense, especially as a way of thinking about the complexity of language and the complexity of what we're trying to do when we are taking a more top-down approach. So that's the distributed communication theory. And it sounds like the other framework that has really guided your research is rich communicative environments. And I'm wondering if you could say a little bit more about that.   Suma Devanga Absolutely. So this work originates from about 80 years of research in neuroscience, where rodents and other animals with acquired brain injuries showed greater neuroplastic changes and improved functions when they were housed in complex environments. In fact, complex environments are considered to be the most well replicated approach to improve function in animal models of acquired brain injury.   So Dr. Julie Hengst, Dr. Melissa Duff, and Dr. Theresa Jones translated these findings to support communication for humans with acquired brain injuries. And they called it the rich communicative environments. The main goal of this is to enrich the clinical environments. And how we achieve that is by ensuring that there is meaningful complexity in our clinical environments, and that you do that by ensuring that our patients, families, and clinicians use multimodal resources, and also to aim for having multiple communication partners within your sessions who can fluidly shift between various communicative roles, and to not just stay in that clinician role, for example.   Another way to think about enriching clinical environments is to think about ensuring that there is voluntary engagement from our patients, and you do that by essentially designing personally meaningful activities, rather than focusing on rehearsing fixed linguistic form or having some predetermined goals.   And the other piece of the enrichment is, how do we ensure there is a positive experiential quality for our patients within our sessions. And for this rather than using clinician-controlled activities with rigid interactional roles, providing opportunities for the patients to share stories and humor would really, you know, ensure that they are also engaging with the tasks with you and having some fun. So all of this put together would lead to a rich communicative environment.   Lyssa Rome It sounds like what you're describing is the kind of speech therapy environment and relationship that is very much person-centered and focused on natural communication, or natural communicative contexts and the kinds of conversations that people have in their everyday lives, rather than more sort of strict speech therapy protocol that might have been more traditional. I also want to ask you to describe collaborative referencing and collaborative referencing intervention.   Suma Devanga Yes, absolutely. So traditionally, our discipline has viewed word-finding or naming as a neurolinguistic process where you access semantic meanings from a lexicon, which you use to generate verbal references. And that theoretical account conceptualizes referencing as an isolated process, where one individual has the skill of retrieving target references from their stores of linguistic forms and meanings, right? So in contrast to that, the distributed communication perspective views referencing as a process where speakers' meanings are constructed within each interaction, and that is based on the shared histories of experiences with specific communication partners and also depending on the social and physical contexts of the interaction as well.   Now this process of collaborative referencing is something that we all do every single day. It is not just a part of our everyday communication, but without collaborative referencing, you cannot really have a conversation with anyone. You need to have some alignment, some common ground for communicating with others. This is a fundamental feature of human communication, and this is not new. You know, there is lots of work being done on this, even in childhood language literature as well.   Collaborative referencing was formally studied by Clark, who is the experimental psychologist. And he studied this in healthy college students, and he used a barrier task experiment for it. So a pair of students sat across from each other with a full barrier that separated them so they could not see each other at all, and each student had a board that was numbered one through 12, and they were given matching sets of 12 pictures of abstract shapes called tangrams. One participant was assigned as the director, who arranged the cards on their playing board and described their locations to the other, who served as the matcher and matched the pictures to their locations on their own board. So the pair completed six trials with alternating turns, and they use the same cards with new locations for each trial. And what they found was that the pairs had to really collaborate with each other to get those descriptions correct so that they are placed correctly on the boards.   So in the initial trials, the pairs had multiple turns of back and forth trying to describe these abstract shapes. For example, one of the pictures was initially described as “This picture that looks like an angel or something with its arms wide open.” And there had to be several clarifying questions from the partner, and then eventually, after playing with this picture several times, the player just had to say “It's the angel,” and the partner would be able to know which picture that was so as the pairs built their common ground, the collaborative effort, or the time taken to complete each trial, and the number of words they used and the number of turns they took to communicate about those pictures declined over time, and the labels itself, or the descriptions of pictures, also became more streamlined as the as time went by.   So Hengst and colleagues wanted to study this experiment in aphasia, TBI, amnesia, and Alzheimer's disease as well. So they adapted this task to better serve this population and also to align with the distributed communication framework. And surprisingly, they found consistent results that despite aphasia or other neurological conditions, people were still able to successfully reference, decrease collaborative effort over time and even streamline their references. But more surprisingly, people were engaged with one another. They were having really rich conversations about these pictures. They were sharing jokes, and really seemed to be enjoying the task itself.   So Hengst and colleagues realized that this has a lot of potential, and they redesigned the barrier task experiment as a clinical treatment using the principles of the distributed communication framework and the rich communicative environment. So that redesign included replacing the full barrier with a partial barrier to allow multimodal communication, and using personal photos of the patients instead of the abstract shapes to make it more engaging for the patients, and also asking participants to treat this as a friendly game and to have fun. So that is the referencing itself and the research on collaborative referencing, and that is how it was adapted as a treatment as well.   And in order to help clinicians easily implement this treatment, I have used the RTSS framework, which is the rehabilitation treatment specification system, to explain how CRI works and how it can be implemented. And this is actually published, and it just came out in the most recent issue in the American Journal of Speech Language Pathology, which I'm happy to share.   Lyssa Rome And we'll put that link into the show notes.   Suma Devanga Perfect. So CRI is designed around meaningful activities like the game that authentically provides repeated opportunities for the client and the clinician to engage in the collaborative referencing process around targets that they really want to be talking about, things that are relevant to patients, everyday communication goals, it could be things, objects of interest, and not really specific words or referencing forms.   So the implementation of the CRI involves three key ingredients. One is jointly developing the referencing targets and compiling the images so clinicians would sit down with the patients and the families to identify at least 30 targets that are meaningful and important to be included in the treatment. And we need two perspectives, or two views, or two pictures related to the same target that needs to be included in the treatment. So we will have 60 pictures overall. An example is two pictures from their wedding might be an important target for patients to be able to talk about. Two pictures from a Christmas party, you know, things like that. So this process of compilation of photos is also a part of the treatment itself, because it gives the patients an opportunity to engage with the targets.   The second ingredient is engaging in the friendly gameplay itself. And the key really here is the gameplay and to treat it as a gameplay. And this includes 15 sessions with six trials in each session, where you, as the clinician and the client will both have matching sets of 12 pictures, and there is a low barrier in between, so you cannot see each other's boards, but you can still see the other person. So you will both take turns being the director and the matcher six times, and describe and match the pictures to their locations, and that is just the game. The only rule of the game is that you cannot look over the barrier. You are encouraged to talk as much as you like about the pictures. In fact, you are encouraged to talk a lot about the pictures and communicate in any way.   The third ingredient is discussing and reflecting on referencing. And this happens at the end of each session where patients are asked to think back and reflect and say what the agreed upon label was for each card. And this, again, gives one more opportunity for the patients to engage with the target.   The therapeutic mechanism, or the mechanism of action, as RTSS likes to call it, is the rich communicative environment itself, you know, and how complex the task is, and how meaningful and engaging the task has to be, as well as the repeated engagement in the gameplay, because we are doing this six times in each session, and we are repeatedly engaging with those targets when describing them and placing them.   So what we are really targeting with CRI is collaborative referencing and again, this does not refer to the patient's abilities to access or retrieve those words from their stores. Instead, we are targeting people's joint efforts in communicating about these targets, their efforts in building situated common ground. That's what we are targeting. We are targeting their alignment with one another, and so that is how we define referencing. And again, we are targeting this, because that is how you communicate every day.   Lyssa Rome That sounds like a really fascinating and very rich intervention. And I'm wondering if you can tell us a little bit about the research that you've done on it so far.   Suma Devanga Absolutely. So in terms of research on CRI thus far, we have completed phase one with small case studies that were all successful, and my PhD dissertation was the first phase two study, where we introduced an experimental control by using a multiple-probe, single-case experimental design on four people with aphasia, and we found significant results on naming. And since then, I have completed two replication studies in a total of nine participants with aphasia. And we have found consistent results on naming. In terms of impact on everyday interactions, we have found decreased trouble sources, or communicative breakdowns, you can call it, and also decreased repairs, both of which indicated improved communicative success within conversational interactions. So we are positive, and we plan to continue this research to study its efficacy within a clinical trial.   Lyssa Rome That's very encouraging. So how can clinicians target collaborative referencing by creating a rich communicative environment?   Suma Devanga Yeah, well, CRI is one approach that clinicians can use, and I'm happy to share the evidence we have this far, and there is more to come, hopefully soon, including some clinical implementation studies that clinicians can use. But there are many other ways of creating rich communicative environments and targeting referencing within clinical sessions. I think many skilled clinicians are already doing it in the form of relationship building, by listening closely to their patients, engaging with them in authentic conversations, and also during education and counseling sessions as well.   In addition to that, I think group treatment for aphasia is another great opportunity for targeting collaborative referencing within a rich communicative environment. When I was a faculty at Western Michigan University, I was involved in their outpatient aphasia program, where they have aphasia groups, and patients got to select which groups they want to participate in. They had a cooking group, a music group, a technology group, and so on. And I'm guessing you do this too at the Aphasia Center of California. So these groups definitely create rich communicative environments, and people collaborate with each other and do a lot of referencing as well. So I think there is a lot that can be done if you understand the rich communicative environment piece.   Lyssa Rome Absolutely. That really rings true to me. So often in these podcast interviews, we ask people about aha moments, and I'm wondering if you have one that you wanted to share with us.   Suma Devanga Sure. So you know how I said that getting the pictures for the CRI is a joint activity? Patients typically select things that they really want to talk about, like their kids' graduation pictures, or things that they are really passionate about, like pictures of their sports cars, or vegetable gardens, and so on. And they also come up with really unique names for them as well, while they are playing with those pictures during the treatment. And when we start playing the game, clinicians usually have little knowledge about these images, because they're all really personal to the patients, and they're taken from their personal lives, so they end up being the novices, while the patients become the experts. And my patients have taught me so much about constructing a house and all about engines of cars and things like that that I had no knowledge about. But in one incident, when I was the clinician paired with an individual with anomic aphasia, there was a picture of a building that she could not recognize, and hence she could not tell me much at all. And we went back and forth several times, and we finally ended up calling it the “unknown building.” Later, I checked my notes and realized that it was where she worked, and it was probably a different angle, perhaps, which is why she could not recognize it. But even with that new information, we continue to call it the “unknown building,” because it became sort of an internal joke for us. And later I kept thinking if I had made a mistake and if we should have accurately labeled it. That is when it clicked for me that CRI is not about producing accurate labels, it is about building a common ground with each other, which would help you successfully communicate with that person. So you're targeting the process of referencing and not the reference itself, because you want your patients to get better at the process of referencing in their everyday communication. And so that was my aha moment.   Lyssa Rome Yeah, that's an amazing story, because I think that that gets to that question sort of of the why behind what we're doing, right? Is it to say the specific name? I mean, obviously for some people, yes, sometimes it is. But what is underlying that? It's to be able to communicate about the things that are important to people. I also wanted to ask you about another area that you've studied, which is the use of gesture within aphasia interventions. Can you tell us a little bit more about that?   Suma Devanga Yes. So this work started with my collaboration with my friend and colleague, Dr. Mili Mathew, who is at Molloy University in New York, and our first work was on examining the role of hand gestures in collaborative referencing in a participant who had severe Wernicke's aphasia, and he frequently used extensive gestures to communicate. So when he started with CRI his descriptions of the images were truly multimodal. For example, when he had to describe a picture of a family vacation in Cancun, he was, you know, he was verbose, and there was very little meaningful content that was relevant in his spoken language utterances. But he used a variety of iconic hand gestures that were very meaningful and helpful to identify what he was referring to. As the sessions went on with him, his gestural references also became streamlined, just like the verbal references do, and that we saw in other studies. And that was fascinating because it indicated that gestures do play a big role in the meaning-making process of referencing.   And in another study on the same participant, we explored the use of hand gestures as treatment outcome measures. This time, we specifically analyzed gestures used within conversations at baseline treatment, probe, and maintenance phases of the study. And we found that the frequency of referential gestures, which are gestures that add meaning, that have some kind of iconics associated with them, those frequencies of gestures decreased with the onset of treatment, whereas the correct information units, or CIUS, which indicate the informativeness in the spoken language itself, increased. So this pattern of decrease in hand gestures and increase in CIUS was also a great finding. Even though this was just an exploratory study, it indicates that gestures may be included as outcome measures, in addition to verbal measures, which we usually tend to rely more on. And we have a few more studies coming up that are looking at the synchrony of gestures with spoken language in aphasia, but I think we still have a lot more to learn about gestures in aphasia.   Lyssa Rome It seems like there that studying gestures really ties in to CRI and the rich communicative environments that you were describing earlier, where the goal is not just to verbally name one thing, but rather to get your point across, where, obviously, gesture is also quite useful. So I look forward to reading more of your research on that as it comes out. Tell us about what you're currently working on, what's coming next.   Suma Devanga Currently, I am wrapping up my clinical research grant from the ASH Foundation, which was a replication study of the phase two CRI so we collected data from six participants with chronic aphasia using a multiple-probe, single-case design, and that showed positive results on naming, and there was improved scores on patient reports of communication confidence, communicative participation, and quality of life as well. We are currently analyzing the conversation samples to study the treatment effects.   I also just submitted a grant proposal to extend the study on participants with different severities of aphasia as well. So we are getting all the preliminary data at this point that we need to be able to start a clinical trial, which will be my next step.   So apart from that, I was also able to redesign the CRI and adapt it as a group-based treatment with three participants with aphasia and one clinician in a group. I actually completed a feasibility study of it, which was successful, and I presented that at ASHA in 2023. And I'm currently writing it up for publication, and I also just secured an internal grant to launch a pilot study of the group CRI to investigate the effects of group CRI on communication and quality of life.   Lyssa Rome Well, that's really exciting. And again, I'm really looking forward to reading additional work as it comes out. As we wrap up. What do you want clinicians to take away from your work and to take away from this conversation we've had today?   Suma Devanga Well, I would want clinicians to reflect on how their sessions are going and think about how to incorporate the principles of rich communicative environments so that they can add more meaningful complexity to their treatment activities and also ensure that their patients are truly engaging with the tasks and also having some fun. And I would also tell the clinicians that we have strong findings so far on CRI with both fluent and non-fluent aphasia types. So please stay tuned and reach out to me if you have questions or want to share your experiences about implementing this with your own patients, because I would love to hear that.   Lyssa Rome Dr. Suma Devanga, it has been great talking to you and hearing about your work. Thank you so much for sharing it with us.   Suma Devanga It was fantastic talking about my work. Thank you for giving me this platform to share my work with you all. And thank you, Lyssa for being a great listener.   Lyssa Rome Thanks also to our listeners for the references and resources mentioned in today's show. Please see our show notes. They're available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials, and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of aphasia. Access. For Aphasia Access Conversations. I'm Lyssa Rome.       References   Devanga, S. R. (2025). Collaborative Referencing Intervention (CRI) in Aphasia: A replication and extension of the Phase II efficacy study. American Journal of Speech-Language Pathology. Advance online publication. https://doi.org/10.1044/2024_AJSLP-24-00226   Devanga, S. R., Sherrill, M., & Hengst, J. A. (2021). The efficacy of collaborative referencing intervention in chronic aphasia: A mixed methods study. American Journal of Speech Language Pathology, 30(1S), 407-424. https://doi.org/10.1044/2020_AJSLP-19-00108    Hengst, J. A., Duff, M. C., & Jones, T. A. (2019). Enriching communicative environments: Leveraging advances in neuroplasticity for improving outcomes in neurogenic communication disorders. American Journal of Speech-Language Pathology, 28(1S), 216–229. https://doi.org/10.1044/2018_AJSLP-17-0157   Hengst, J. A. (2015). Distributed communication: Implications of cultural-historical activity theory (CHAT) for communication disorders. Journal of Communication Disorders, 57, 16–28. Https://doi.org/10.1016/j.jcomdis.2015.09.001   Devanga, S. R., & Mathew, M. (2024). Exploring the use of co-speech hand gestures as treatment outcome measures for aphasia. Aphasiology. Advanced online publication. https://doi.org/10.1080/02687038.2024.2356287   Devanga, S. R., Wilgenhof, R., & Mathew, M. (2022). Collaborative referencing using hand gestures in Wernicke's aphasia: Discourse analysis of a case study. Aphasiology, 36(9), 1072-1095. https://doi.org/10.1080/02687038.2021.1937919    

In this week's episode, we speak with Dr Abby Foster and Suzanne Mungall, speech pathologists, about Earth Day, coming up on 22 April. Suzanne and Abby share their experiences about speech pathology and climate change, and why they feel the urgent need for health professionals to address the impacts of climate change on health and service delivery. Claire Esterman, from the Speak Up Podcast Reference Group, opens the episode with a brief reflection highlighting the opportunities, personally and professionally, that Abby and Suzanne discuss. Resources:  Contact Suzanne: suzannemungall@outlook.com Contact Abby: drabbyfoster@gmail.com Earth Day: https://www.earthday.org/ United Nations climate change information: https://www.un.org/en/climatechange National Safety and Quality Health Standards voluntary environmental sustainability and climate resilience module: https://www.safetyandquality.gov.au/standards/environmental-sustainability-and-climate-resilience-healthcare-module Helping people with Aphasia prepare for an emergency: https://leader.pubs.asha.org/do/10.1044/2020-1118-aphasia-friendly-emergency/full/ UN Sustainable Development Goals: https://sdgs.un.org/goals Climate for change: https://www.climateforchange.org.au/?gad_source=1&gclid=Cj0KCQjw782_BhDjARIsABTv_JDCadnChAqwfxbWIGwXnflty21bBF9DSDaLpYc1-XVHIzHRFpPusXgaAjotEALw_wcB Free access to transcripts and for a full list of resources / references for this podcast is available via the SPA Learning Hub (https://learninghub.speechpathologyaustralia.org.au/), you will need to sign in or create an account. For more information, please see our Bio or for further enquiries, email: speakuppodcast@speechpathologyaustralia.org.au Speech Pathology Australia acknowledge the Traditional Custodians of lands, seas and waters throughout Australia, and pay respect to Elders past and present. We recognise that the health and social and emotional wellbeing of Aboriginal and Torres Strait Islander peoples are grounded in continued connection to culture, country, language and community and acknowledge that sovereignty was never ceded.  Disclaimer: © (2025) The Speech Pathology Association of Australia Limited. All rights reserved. Important Notice, Please read: The views expressed in this presentation and reproduced in these materials are not necessarily the views of, or endorsed by, The Speech Pathology Association of Australia Limited (“the Association”). The Association makes no warranty or representation in relation to the content, currency or accuracy of any of the materials comprised in this recording. The Association expressly disclaims any and all liability (including liability for negligence) in respect of use of these materials and the information contained within them. The Association recommends you seek independent professional advice prior to making any decision involving matters outlined in this recording including in any of the materials referred to or otherwise incorporated into this recording. Except as otherwise stated, copyright and all other intellectual property rights comprised in the presentation and these materials, remain the exclusive property of the Association. Except with the Association's prior written approval you must not, in whole or part, reproduce, modify, adapt, distribute, publish or electronically communicate (including by online means) this recording or any of these materials.

Guest: Kelly Sloane, MD For patients who experience aphasia after a stroke, intervention and social support are crucial for recovery. Dr. Kelly Sloane, Assistant Professor of Neurology at the University of Pennsylvania, highlights how timely therapy and strong support systems can help rebuild both language and confidence in these patients. Dr. Sloane also spoke about this topic at the 2025 American Academy of Neurology Annual Meeting.

Guest: Kelly Sloane, MD For patients who experience aphasia after a stroke, intervention and social support are crucial for recovery. Dr. Kelly Sloane, Assistant Professor of Neurology at the University of Pennsylvania, highlights how timely therapy and strong support systems can help rebuild both language and confidence in these patients. Dr. Sloane also spoke about this topic at the 2025 American Academy of Neurology Annual Meeting.

People with aphasia can have problems understanding or using numbers in everyday life - known as functional numeracy difficulties. However, testing this is hard because there are limited published assessments for functional numeracy difficulties for people with aphasia. This study aimed to explore, validate and pilot a wide-ranging, aphasia-friendly functional numeracy assessment to investigate how functional numeracy is impacted by aphasia severity and time pressure demands, and to explore predictors of PWA's functional numeracy.The paper is:Which blueberries are better value? The development and validation of the functional numeracy assessment for adults with aphasia' https://onlinelibrary.wiley.com/doi/full/10.1111/1460-6984.12867 Kerri Ichikowitz, Carolyn Bruce, Vanessa Meitanis, Kelly Cheung, Yekyung Kim, Esther Talbourdet, Caroline NewtonFirst published: 13 March 2023This paper was awarded the IJLCD student prize.Resources:If you would like access to the online version of the Functional Numeracy Assessment, please contact the study authors.The intervention study: Newton, C., Meitanis, V., Bruce, C., & Donlan, C. (2025). Evaluation of the SWAN game-based approach to re-building numeracy skills in aphasia: Feasibility and preliminary findings. https://doi.org/10.31234/osf.io/f7d39_v1 The survey of SLTs: Newton, C., Brancamp, D., & Brancamp, T. (2025). The rehabilitation of numerical processing and calculation in aphasia: An international survey of speech-language pathologists. https://doi.org/10.31234/osf.io/g63j9_v1 Please be aware that the views expressed are those of the guests and not the RCSLT.Please do take a few moments to respond to our podcast survey: uk.surveymonkey.com/r/LG5HC3R

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 Brown: You know. Sometimes African Americans are looked down upon the most across our society. And why? That is, you know, it's a multitude of reasons, right? There is no one pinpointed answer for that, and it just kind of paints to the goes to the bigger picture of racial bias, and how patient and provider communication is just poor across the board, and you know, and it could be because of communication styles are different, right? It could be because of the practitioners. You know the old mindset was that the practitioner is always right, so they should. You know the patient should listen to what they're saying, and it's not. It wasn't necessarily a patient center or person-centered approach like it is nowadays. And some practitioners, especially in the South. They still are under that mind, right? Not necessarily in the South, probably across the board in the United States. Right? So, I think that you know those biases, and some of that lack of communication or poor communication it just contributes to the poor perceptions and stereotypes that are out there in African Americans and black people you know, because regardless. When a black person gets sick, you know, they may be scared to go and talk to a practitioner because of where they live. That might be the only practitioner or specialist that they can see, and they are a family member, or a friend might have had a bad experience. Therefore, they're hesitant to go to that person, and they'll just deal with the issue themselves. And that's where you know. I think a lot of the differences are when it comes to African Americans and healthcare providers. And I've seen that as well with individuals who have acquired language disorders. Right? I've had patients particularly. Tell me when I was practicing that. You know, Warren, we want you to come back, but we don't want the other girl to come back, right? Because you're listening to what I'm saying. You actually are educating us about what's going on more so than just what the language issue is right. And I think that points to the picture of just them feeling comfortable with me, because I'm most of the time with the same ethnicity, right? Same race. And I'm genuine, right? I do the same with any patient that I encounter. But obviously, sometimes, when it's African Americans, and I know what the assumption is, and I understand some of those experiences are, you know I try to go a little bit more. I try to. I try to go the extra mile for them. So, this.   Jerry Hoepner: And I think there's it's interesting. And throughout the paper there's parallels to some of the work that you and I and Dr. Keegan have done on healthcare perceptions in traumatic brain injury. That you know you mentioned that idea of providers still following it, falling into that provider centered care rather than person centered care. And I think that's a problem across the board for some providers, because that's evident in our research. But we don't have you know, we're not even representing the black Americans within that group. And I know that the problem is more pervasive when it comes to services for black Americans and other colored people as well. You know the one number that really struck me from the study in Chicago, 70% of.   Warren Brown: 70%.   Jerry Hoepner: From Covid.   Warren Brown: Yeah.   Jerry Hoepner: Were black Americans in Chicago, and only 30% of their populations or population was black Americans. That's just. You can't help but be startled by those kind of disparities, because clearly there's something.   Warren Brown: Up in there.   Jerry Hoepner: Something that.   Warren Brown: And these are these are fairly new studies. Right? I mean, the stat for Louisiana was 70 70.5% of this, and they only represent 33% of the State's population. Right? We're African American people. So that. That's you know. My personally, my dad didn't leave his house for a year and a half during Covid he would not go to church. He didn't leave right, and he was terrified. Terrified. You know. I know he had at least 4 or 5 people that died that he knew. You know. So, I mean, it's daunting right especially if you're not educated, or you're not understanding. I had a great relationship with a practitioner that could educate you on, you know the do's and the don'ts of what you should or shouldn't be doing so. Yes, sir.   Jerry Hoepner: Yeah, absolutely. I kind of broke down the article into 3, like major areas of interest and topics. And I'll just kind of lay out the 1st one being those challenges with healthcare providers. I couldn't help but put down. This one quote was like being put in a damn box, and we had a little conversation about that earlier, but We also talked about this like this lack of knowledge about stroke and that healthcare literacy creating this fear like. And you even mentioned that with your dad, right? This fear that I don't even want to go into that healthcare context. But then this like laundry list of things that we hear in a lot of studies about healthcare perceptions, healthcare providers are dismissive, dismissive, and you feel vulnerable in that context, you don't have control or agency. Those kinds of things that we don't hear in in those other studies about healthcare perceptions are things like. There was a clear. There was a clear prejudice against me. Right? There was this neglect by providers. One lady I had to write this down, wrote. I don't talk to my dog like that, you know, like.   Warren Brown: That's right.   Jerry Hoepner: So.   Warren Brown: That's right.   Jerry Hoepner: And then, you know, just a lack of inclusion in decisions in in the whole entire process. And just feeling that sense of people looking down on you, and that you know that this is kind of the expectation. So I'm really interested to get your thoughts about. You know that that issue of those challenges in terms of working with healthcare providers. How many of those are communication based? And what's kind of bias and kind of sorting some of that out, because we know some happens a little bit to everyone in that context. But certainly, this is different.   Warren Brown: Yeah, I think that you know we all have personal biases that, you know are inherently that we are. You know that we're introduced to that from an environmental standpoint. But you know, one would assume that when you become a healthcare practitioner provider, you know you have to be open-minded because, you understand, you're going to be dealing with so many different types of people from all walks of life. And unfortunately you know, these disparities still are there, and this particular study showed that they're still there, right one of the examples you just gave about the young lady that said, you know I wouldn't let my dog talk to me like that right? I remember in in her Transcript she also stated that you know, in multiple visits that she went to her physician would talk through her or over her, where she just totally felt dismissed, or one interaction she had. She had a friend who was white that brought her to the doctor, and they felt as if the friend was the patient, and she was the patient caregiver right? And I think that really broke her down. She literally stayed out of therapy or avoided therapy for a long time because of that. And obviously that affected her outcomes right. But I think the bigger picture is that it's a little bit of both, Dr. Hoepner. I think it's a lot of bias, and it's also poor communication. You know, I think, and some of that's not on the physicians themselves. Some of them, I'm sure, are compassionate. I think some of that is on the larger system systemic issues that are out there. Right? You know you have. They have insurance deadlines; they have time frames. They have. Probably some of them are overwhelmed with patient care in general. But I still think that you know to be truly compassionate, you know you need to understand what you're getting into as a practitioner, and still with individuals that you know may not understand some of the dynamics of some of the diseases or illnesses that they have. You have to find a way to provide them services that they need. Right? I think the communication is key, because it always goes back to communication. Right individuals who are educated, which a lot of these folks are. Some of these folks in the study. I had PhD. Some of them were medical doctors, right? Some of them have master's degrees. A lot of them still stated that their health literacy was poor when it came to symptomology, of strokes, symptomology of not just strokes, but them acquiring aphasia what that truly meant, and how that might affect their daily lives. Right. One of the individuals she stated that she didn't realize that you know aphasia was a thing until she had it. She didn't realize that she was having multiple strokes right until it happened, and she just felt like she would bounce back and go back to her daily life and be fine and go about her normal business. But you know it's hard to pinpoint exactly how to fix it. But this study is, I guess, one step towards trying to understand the different dynamics from multiple perspectives. And I think what makes it super unique is this qualitative study is really, really, it's very in depth. That's why it's so long right? It's a long paper. But we felt it necessary to put these quotes in, because these individuals, these interviews long and you can't help but be compassionate and understand each individual's perspective on what their experiences were right. You know, because this dynamic, this really changed their lives. And I know aphasia changed the lives of a lot of different people and caregivers right. Anytime you have a failure or even a brain injury. Right? It changes we know that. But I think compounded with the racial and ethnic tension or societal views that these individuals suffered with prior to having those injuries. This acquiring aphasia only makes whatever was going on a bit worse, because the inability to communicate or even comprehend what's going on around you, right being overstimulated, not necessarily being able to do on your own, or do for yourself, especially with a practitioner on something that's unknown to you is again. That's a daunting thing like you really don't know what to do, and if you feel dismissed, or if you feel as if a practitioner is talking down to you, what would make you, as an individual, want to go back? You know the a good example, I can say, is customer service right? If you go to a restaurant and you receive poor customer service from a from a waitress, will you give them a tip probably, maybe, or you might give them a less amount of tip that you would have gave given to a person who gave you better customer service right? This is a good example of what a physician interaction and communication is with a patient right. Sometimes these individuals just won't go back right or might not go back to any practitioner one of the individuals in the interviews. He literally said that you know he had a few poor encounters, so he switches doctors regularly because a lot of them don't understand him and won't try to understand him. So, you know, it's problematic. It's definitely problematic.   Jerry Hoepner: And you hit the customer service thing right on the head, because one of the things that I was struck by, and I've done work kind of parallel to this. And brain injury is that relationship and the importance of starting to build an authentic relationship in terms of mitigating some of the other communication problems, right? Like, if you invest a little bit in like getting to know that human being. You start to humanize them, and you start to, you know, want to have good outcomes for them, and that results in in better care. And it comes right down to that. That patient centered versus provider centered communication. Right? If you open up the door on the front end to investing a little bit in a relationship building, it seems like the goodness follows right like you're saying earlier, like, these physicians aren't bad people right? It's just, you know, they're in a system that says, Go, go. And then they have these biases that they might not even be aware of. And the next thing you know, they're out, you know, on the way out the door, and care hasn't happened in the way that it should. But I'm just struck by the fact that that was like a mitigating factor for people like just a little investment get to know that person. And then everything changes so.   Warren Brown: That's right. I think I think that's what you know. Someone asked me a while back. Why, like our Black aphasia group. Why is it so successful? Right? It's because it's not if I don't. The way that I approached it. I didn't approach it as me, Warren brown as an SLP. Right? I approached it, me, Warren Brown is trying to understand these people's stories and get to know them, and fully. How can I, as an SLP, help you right? And I think that's why our group is so successful, right? And why people keep coming back. Because if they didn't feel like it was a genuine interaction, I can assure you they wouldn't come back. Because I genuinely look forward to the group like the group members do, because I love talking to these folks. These are folks of my family, right? And that's the type of community that you know. Practitioners can make it like that right?   Jerry Hoepner: Okay.   Warren Brown: You know, in certain rehabs. That's what it is. It's a familiar environment. At certain places. I know some of the ones that I used to work at. So, you know, but I definitely understand the dynamics of health care have changed right as time has progressed, and that's due to a multitude of reasons. But care doesn't have to change. Right practitioners can change for the better. If you fully try to understand and invest time and energy and being genuine into the folks that you're seeing right. I truly believe that so.   Jerry Hoepner: Agreed, you know, and when I kind of listed a bunch of priorities, or what black people with aphasia want this? Isn't it an outlandish list by any means like, I've got this big, long list of things that are problems. And then they say they just want to be treated with dignity, compassion, and respect. They want.   Warren Brown: Right.   Jerry Hoepner: Heard, and they want to be treated like human beings. That's not unreasonable. So, it's not like they've got this big, long list of you got to do this. This I just think that's pretty interesting in light of all of the struggles that they're facing like. If you could give us these 4 or 5 things we could. We could work with.   Warren Brown: Yes, sir, and I. And I think even with that the you know, interpretation of respect is different from everyone. But I think ultimately, no matter what race, no matter what ethnicity, what creed you are. Respect is respect, you know, treating people the way you want to be treated right. I mean, that's what it is. And you know, talking to people the way that you want to be spoken to. Right? That's what it is. And I think, like you said, it's so simplistic it should be natural. But obviously it's not for some people right?   Jerry Hoepner: Okay.   Warren Brown: And that's and that's problematic. But hopefully, it's hopefully, we're trying to change that. So you know.   Jerry Hoepner: Yep. yeah. Finding a way to make those priorities on the front end. I think that really makes sense. The other thing I wanted to talk to you about kind of get your take on. This is along with the challenges and along with kind of these desires. What people with aphasia want? I just noticed a lot of strengths that I'm not seeing in some of the other research that's out there from the perspective of survivors of brain injury and so forth. Things that I just saw flowing through like this idea of self-reliance like I learned, I gotta rely on myself, I rely on my faith and my religious beliefs. And then this really struck me, this, this cultural community, where one of the one of the participants said something to the extent of, We always stay in each in each other's business, kind of like, whether we want it or not, whether they want it or not, and that allows them to help each other. I'd just like to get your thoughts on that, because that seems like such a strength of this community.   Warren Brown: Yes, sir, that's a that's a loaded question, but I can definitely break it down. So, I love that question, though I think that you know, from perspective of self-reliance. That's definitely a cultural thing, right? Because, you know, personally, I'm 38. So, I was raised to not be dependent on someone else, because you really can't depend on what someone else can do for you outside of what you can do for yourself. That is something that is instilled at a young age and I went to Southern for my master's right Southern university in Baton Rouge, which is a historically black college or whatnot. And you know, at Southern they taught us the same thing, because, you know, as you know, our field is predominantly white women, right? Less than 5% African Americans, even less percent African American men. And at Southern they always said, You have to work twice as hard in order to be in this field and be successful. And they instilled that in us so much right. Because you really have to understand that you know society has painted this picture that things are against you and these individuals, with aphasia in their own careers, have had this same type of battle and everything that they've gone through. So, they've always had to prevail. And some of these individuals in this group. They went through the Jim Crow South right they went through struggles of individuals, fully talking down to them, having separate everything, having to deal with parents and grandparents that, you know, had to bow down to certain people because of the societal norms at the time, so that self-reliance, you know, always was there, because they always had to work harder in order to achieve what even was fair or normal for other people right? And that paints it to a bigger picture, even goes back to the level of respect. Right? If you work twice if you feel like you working harder than someone else for a job. And you know you're more qualified. Right? That's something that that you feel you're owed. But to some black people you understand that I'm not old. Anything right? That's just how society paints it. It is what it is, and I think that goes back to that point. And I'm sorry. What was the other question? I was trying to.   Jerry Hoepner: So, I think just that that cultural community.   Warren Brown: The cultural. Yes, sir.   Jerry Hoepner: Others, business and.   Warren Brown: So that kind of touched on it, like I think from a cultural standpoint, you know I am my brother's keeper. Right. You may or may not know this, but I'm in a I'm in a predominantly African American fraternity. Right? We're the oldest fraternity, and that's something that we learned right. You. You never go anyplace by yourself. You always have your brother with you. I always have you know I am my brother's keeper, and that goes from, you know, not just African American males, but African American females, and vice versa, because that sense of community, you know. Again, we talked about it earlier with the Speech acts is unspoken, things that we understand inherently, that as an African American or a black person, you're going to endure in life, and you have to just suck it up and swallow your pride and deal with it. But we all are going through that struggle right, and I think some demographic groups can relate to that. But obviously some groups can't as much right. It's harder to you can empathize. But you may not fully understand, just because the dynamics are different, right? And I'm not saying that all black people have that experience. I'm not saying that. But I'm saying that a lot of black people feel like that. And that was inherent in the interviews as well. Because this group, you know, they, we talk about community. We talk about personal experiences and regardless. If some of them had a PhD., a MD a Ms., a BA right behind their names. All of them had the same experiences. Right? I have to highlight one of the folks in the group. He went to Harvard. He was the second African American person to graduate with a PhD. From the State of Mississippi. Right, you could. I could only imagine. And he did this in the seventies. I could only imagine the struggle that he had to go through right to attain a degree like that from a school like that coming from where he came from. So you know something that you know other people's family members may have done, you know, is probably much more meaningful to him because of the struggle he had to go through, and I think that is where the community comes in because African Americans acknowledge that right? I was always told. Like, you know, school is important. Education is important, you know, education to get you a lot further in life than sports and all these other things, because, you know, it was always instilled that in education, you know, knowledge is power and you know these older folks. I call them older folks. No offense, right? No ageism here. But you know the 70 plus right. Those individuals who have doctorates and really are fully educated. Their battle and struggle was much harder than mine coming through school right? And I. And that's a level of respect, a level of community that we all know how to respect. And I think you know, when it comes to community, that's something that we all can recognize as a culture. And with this particular group, that's something that's respected across the board because, regardless of the level of severity of aphasia, they have every individual in that group respects one another. They check on one another. They listen to stories about one another. They know about each other's family right? Milestones. It's phenomenal, right. When I got my doctorate. They were the 1st people to congratulate me right. When someone had another struggle in the group. We were the 1st to say a prayer for them and why? That is cultural. It's a traditional thing. I mean, it probably ties back to slavery before the great migration, right? And folks moved up and all around from the south to different parts of the North. Right? That's something that is always probably going to be there. And that's a cultural thing that you know, is really unspoken a lot of times. So.   Jerry Hoepner: Yeah. You know, you talked about the people in the study, the people with PhDs and master's degrees and physicians. One of the stories I kind of connected with was Ann Story. She was a physician prior to her stroke, and had acknowledged that she had colleagues that she would refer black Americans to, and colleagues she wouldn't and then she had the stroke, and she had this very personal, insider experience. I don't know if you want to just say a couple of things about that.   Warren Brown: Yes, sir, she actually, I'm glad you said that she actually definitely said that she referred people to certain practitioners because she knew certain physicians with had more empathy than others. Right now, her experience was a little bit different, right? She didn't really have any negative experiences with practitioners, but also all of them knew she was a medical doctor, right? And I think that you know that level of information is different, because had they not known who knows what her story would have been right as opposed to the individual with the PhD. They didn't know he had a PhD. Because at the time of his stroke he couldn't talk, so it wasn't until his wife came and alerted them as to who he was and where he worked, that some of that stuff shifted, and obviously it shifted when he went to different facilities as well. But Ann's experience was very, very different than some of the other individuals, but I think that even with that she was much more conscious about her experiences as well, because she kind of had a better anticipation about what she was supposed to receive and how services were supposed to go for her right. And that goes back to the bigger picture of healthcare literacy right? Obviously, her literacy and understanding of how healthcare works was a bit better because she was a medical doctor, and I think even just. Her journey with aphasia was a bit better in a lot of different ways as well. Yes, sir.   Jerry Hoepner: Yeah, that's really important to have that that perspective and that kind of juxtaposition. Well, I do want to make sure we have some time to talk a little bit about your role in running the Black aphasia group, and how that's changed your clinical perspective, your research perspectives kind of what you've learned in that. In that context.   Warren Brown: Absolutely so. Originally, I was gung ho! About brain injury. Only, right? I didn't really necessarily want to go into aphasia as much as I am, because my premise for going to get the PhD. Or really one of the main reasons why was I wanted to study sports, related concussions mostly. But once I got into the program and I learned about some of the different, the different profs, some of their interests, you know. I couldn't help myself, but dip into it some, and I got an opportunity at the last Aphasia conference to meet Teresa Gray and she allowed me to facilitate her group out in California, and then we started our own group through the aphasia center of Acadiana with Dr. Azios and Miss Rose Shelf. So, you know, I still run that group. It's still affiliated with the aphasia center of Acadiana. Although I'm in Jackson State. I asked Dr. Azios if we could continue to do that because I think that that connection to an aphasia center is integral. Because I think that you know with the group, that's what we're known for. And that's what we're going to stay as long as they'll have me. So. You know, with that group I've learned so much more than what I knew before, as far as compassion, as far as empathy. As far as, although you might be the expert or the practitioner, you still need to understand the dynamics of the individuals that you're seeing just hearing some of their stories, and even personally, as a practitioner, some of the things that I used to do right, which were probably wrong, because that's how I was trained originally in the beginning, you know, and I shifted throughout my career as well, because I understood a lot more, but I think even more so now, I really fully understand. And that's kind of what I teach a lot of the students that I have right how to understand the dynamics of people that you're working with and the students at Jackson State. They have an opportunity now where they actually come on with the group, and I allow them to have somewhat of a conversational type of discourse with the members, so they can understand those dynamics, for whenever they get out in the field to understand how to work with diverse people with aphasia. So, one of the things that you know, we were able to start with the group members. And this was all the group members. They wanted to create an anthology, right? Because they stated that they wanted to document right their journeys and journeys for other people who are African Americans or of color to understand. You know what you may or may not go through right that you are not alone, that you aren't in a damn box by yourself. Right? They wanted to understand that also for caregivers what to do, because all of these individuals literally stated, they all were oblivious to aphasia prior to this, prior to acquiring it. So this anthology is serving, as you know, just a guide or tool to use for individuals and for other individuals with aphasia who may or may not be of color to relate with right and for individuals to understand like, Hey, you know, this is what I went through. You know I am black with aphasia. This is also to get other people who are black with aphasia in their caregivers to understand that. Hey? We have a group for us out there that you may or may not want to be a part of and last week we actually added a new member. So that was wonderful. But so far, we have multiple different entries. The group participants have entered essays. They've entered poetry. Some have done checklists, some have done prayers some have even one. We have one from a caregiver. Her husband has aphasia. She comes to the group as well. We love her. She's actually a compound pharmacist. She wrote about her perspective as a caregiver in the anthology as well. So.   Jerry Hoepner: Cool.   Warren Brown: Me. Being in Jackson state. I got lucky enough to talk with Dr. Brandon Newkirk Turner, and Dr. Morris is that the University of Saint Augustine. They connected me with Dr. Mcdaniels, who's over the Humanity Society in Mississippi, and she's gonna help us to get it out there. So.   Jerry Hoepner: Awesome.   Warren Brown: And recently we started a collaboration with one of the art, the Black art History professors at Jackson State, Dr. Brittany, Meinberg. We're actually going to make it aphasia friendly. So, whereas we're gonna have mirrored pictures of the entries and the pictures of those entries from an abstract standpoint for individuals who have aphasia so they can read it and be aphasia friendly as well. So yes, sir, that's the idea, and hopefully we'll have something by the fall of next year. So.   Jerry Hoepner: Because.   Warren Brown: At JSU, we're going to be doing a symposium on aphasia. And obviously, since it's an HBCU we're gonna have some focus on diversity with that as well. So yes, sir.   Jerry Hoepner: Well, I'm excited to see that anthology come to fruition and look forward to kind of keeping an eye out for that and everyone out there who's listening. Keep an eye out for that as well. Just a handful. 2 or 3 more questions I want to ask. Just find out a little bit more about your experience. I know that you've had opportunities to work alongside of some great researchers and clinicians. I want to get your perspectives on that. And yeah, share a little bit about that, and how that's prepared you to be like a brand new professor this year. So.   Warren Brown: Yes, yes, sir, absolutely you know. I can honestly say it's truly been a blessing since I started at UL, and I'm done now to be able to encounter all the folks that I have. You know, from Dr. Salvatore to Dr. Michael Canito to you. Right, Dr. Hoepner to Dr. Louise Keegan, Dr. Azios, Oxley Ryan, Nelson. You know the list goes on right. Everybody that I've worked with and spoken to all have different perspectives of our research, you know, and I and I take pieces from everyone that I've worked with to understand how I want to approach things right, because my love is always going to be diversity right in whatever area that I'm in. And you know, I think that's what makes me a little bit unique, right? Because my perspective is always looking at the population that I mainly care the most about right. And you know understanding the different dynamics about how you all have what you all have done. And from reading, all of you guys work, I call it borderline stalking. You guys work right? I remember the 1st time I met you, Dr. Hoepner, I was terrified to talk to you, man I really was, and then, when you introduce yourself to me, I was quiet, and I was like, he's normal. He's not like, I thought he was. So, I was like, Okay, this, this is cool. So, and Dr. Jamie said, just go talk to him. He's cool. Go talk to him. I was like Okay, but I use it as an example, because, you know we're all human, and I think that you know sometimes, you know, as a new researcher, as a novice researcher, as a student, you know, you get overwhelmed with the people that you're reading about, the books that you're using or books that you're reading. These are the folks that are writing it. And hopefully, one day you can get to that level to impact students like myself, like I was, or students that are out there, up and coming students. So, you know, I think, that all the work that everyone is that I've learned under and still learning under, you know, it's important, because this is all. This is all, how we all are contributing to the field and how we're making the field better. Right? I think that's the ultimate goal ultimately is to serve the population of individuals that we're treating. It's never about me, right? It's never about you. It's never about any of this is about the work that we're doing to improve outcomes, to improve the populations that we serve. And you know, clinically, I've worked with some phenomenal clinicians. When I was a clinic, when I was a clinician when I was a full-time clinician and you know I've had great clinicians that I've worked under and with, and horrible at the same time. I think we all have, and you know, when I was in administration I would fire and hire people left and right. I would let people know if they were horrible, and I would just go on and keep moving. But I think you know now that I've shifted to research and understanding how clinicians think to a certain degree. You know, I can understand why some clinicians practice the way they do or did, because they were ignorant to what's out there, you know. Earlier on in my career I was oblivious to aphasia. I heard nothing about it. I work in acute care hospitals, major acute hospitals because they weren't that popular in the South, right? It wasn't really until I got to Southern, and I taught undergrad for a while. And you know in some of the text that I was reading. I read about it, and I was like, Oh, I never knew that was a thing right, because they weren't offered. We had Parkinson's groups. But we never had aphasia group, right? And I think that you know, and TBI groups that we have that as well. But I think these groups are much more impactful because they do serve as a sense of community for a multitude of people. And these groups are places where individuals can go when they plateau out of therapy. And I want to say something on that, too. That's actually one of the topics we wrote about in the anthology. What does it feel like to be plateaued or told you plateaued in therapy? Right? And it's just amazing how you know as a clinician, you say that to someone right? Or you meet, you met Max level of potential. You say that to someone, but you don't fully understand the mental or the impact that you have on an individual when you say that right? And that was something we talked about. And now they're writing about it. And I'm like man. I never thought about that as a clinician. So I say that to say even I'm still learning right. That's something we should know. But you don't think about it from a clinical standpoint, because that's a standardized thing. But to an individual who's suffering from or had to endure what you're saying to them, it's a totally different perspective. Right? So, you know, I'm learning that. And I'm learning how to be more compassionate, too. So yes, sir, I'm learning a lot. I love it. I love it so.   Jerry Hoepner: We are well on your way, and you will make that impact on a lot of students. I'm sure you already have. Well, just to kind of bring things to a close. I want to end with a lighter note hopefully, a lighter note. What brings you peace in the midst of this sometimes crazy world that we're living in.   Warren Brown: Oh, man, I love! I love my kids and my wife. I love my kids and my wife. They bring me peace. I'm a I'm a classic car collector. I love my classics, too. I have them. Can I share about that?   Jerry Hoepner: Absolutely.   Warren Brown: So, I have a 1969, a 396 Chevelle that I bought years ago. And we're restoring that we're almost done with that. I just have to get it painted. And recently I bought a 1985 K. 5 Chevy Blazer that we started to restore as well. It's a smaller engine. It's a 305, but that's something that brings me peace as well. You know my dad was a jack of all trades. So, I learned at a young age how to construct houses, how to do plumbing electrical fix cars. That's why I went to college, so I didn't want to do that full time. So, but one thing about it is that you know, I learned how to do all those things, so I can teach that to my kids. And hopefully, that's our family time. You know that we do these things together. That's what truly brings me peace, my family, and a lot of my friends. So, for sure. Yes, sir.   Jerry Hoepner: Well, that's fantastic. And obviously you and I could talk all day. We need to wrap things up. Hopefully. We'll get to see you at the Aphasia Access Leadership Summit and connect there.   Warren Brown: I'll be there. Yes, sir.   01:05:02.260 --> 01:05:11.929 Jerry Hoepner: Connect with a whole bunch of new people. That you haven't met yet, too. So, thank you so much. Warren and I look forward to talking to you again soon.   Warren Brown: Thanks, Dr. Hoepner. Thanks for having me. I appreciate it.   Jerry Hoepner: You're so welcome. On behalf of Aphasia Access, thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org. If you have an idea for a future podcast series or topic, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access.

In this week's episode, we recognise the inaugural International Primary Progressive Aphasia (PPA) Awareness Day 2025 coming up this Friday on 4 April 2025. Kym, Speech Pathology Australia's Senior Advisor- Aged Care, speaks with Scott Cooper a dementia advocate living with PPA, and his speech pathologist Dr Penelope Monroe from FRONTIER's PPA Communication Project, at University of Sydney. Scott talks about his experiences, his work as a dementia advocate, and the impact speech pathology has made to his and his family's life, as he says, “It just makes life easier." Resources: International Primary Progressive Aphasia Awareness Day: https://speechtherapyppa.com/ppa-awareness-day.html Primary Progressive Aphasia Guide: https://aphasia.org.au/aphasia/primary-progressive-aphasia/ PPA - A Call to Action video – Ffion Walker: https://www.youtube.com/watch?v=0fPT34jGWNk Find a speech pathologist search: https://www.speechpathologyaustralia.org.au/Public/Shared_Content/Smart-Suite/Smart-Maps/Public/Find-a-Speech-Pathologist.aspx SPA resources: Working with people with lived experience of dementia practice guideline: https://www.speechpathologyaustralia.org.au/resource?resource=920 Speech Pathology Australia acknowledge the Traditional Custodians of lands, seas and waters throughout Australia, and pay respect to Elders past and present. We recognise that the health and social and emotional wellbeing of Aboriginal and Torres Strait Islander peoples are grounded in continued connection to culture, country, language and community and acknowledge that sovereignty was never ceded. Free access to transcripts for podcast episodes are available via the SPA Learning Hub (https://learninghub.speechpathologyaustralia.org.au/), you will need to sign in or create an account. For more information, please see our Bio or for further enquiries, email speakuppodcast@speechpathologyaustralia.org.au Disclaimer: © (2025) The Speech Pathology Association of Australia Limited. All rights reserved. Important Notice, Please read: The views expressed in this presentation and reproduced in these materials are not necessarily the views of, or endorsed by, The Speech Pathology Association of Australia Limited (“the Association”). The Association makes no warranty or representation in relation to the content, currency or accuracy of any of the materials comprised in this recording. The Association expressly disclaims any and all liability (including liability for negligence) in respect of use of these materials and the information contained within them. The Association recommends you seek independent professional advice prior to making any decision involving matters outlined in this recording including in any of the materials referred to or otherwise incorporated into this recording. Except as otherwise stated, copyright and all other intellectual property rights comprised in the presentation and these materials, remain the exclusive property of the Association. Except with the Association's prior written approval you must not, in whole or part, reproduce, modify, adapt, distribute, publish or electronically communicate (including by online means) this recording or any of these materials.

After his stroke, musician Graham Hall struggled with speech. In this inspiring story, he shares his journey through Aphasia and recovery. The post The Hidden Struggle of Speech After Stroke: A Musician's Story appeared first on Recovery After Stroke.

This Medical Mondays replay is a medical rollercoaster you won't want to miss! Today, I'm peeling back the layers on five explosive health stories that lit up my phone with questions.Let's set the record straight about Wendy Williams - what's really happening with her health? I'll share my medical perspective on the surprising twist in her diagnosis. Then, my blood boiled discussing a heartbreaking story from Wisconsin - a young life lost over a $500 inhaler. As a physician, I'm telling you why this should never happen again.Real Housewives fans, you'll want to hear my take on Teddi Mellencamp's brain tumor battle. I'm spilling the tea on symptoms that could save your life. Speaking of life-saving info, we're talking about that major court decision forcing the return of crucial health resources to government websites.Oh, and bird flu in humans? Before you panic, let me break down what Ohio's first case means for you. This episode is packed with medical truth bombs that'll make you smarter about your health. Your questions, my answers - let's do this!This podcast is intended to be informational only.  It is not a medical consultation, nor is it personalized medical advice.  For medical advice, please consult your physician.Here are a few helpful resources to help on your journey to wellness:

In recognition of the first Primary Progressive Aphasia (PPA) Awareness Day, this episode explores how speech and language therapists are working to support people with PPA to maintain communication and preserve connections with their loved ones. Dr Shalom Henderson is joined by three leading experts in speech and language therapy—Dr Anna Volkmer, Dr Jackie Kindell, and Rosemary Townsend—who are pioneering innovative interventions to help people living with PPA navigate the challenges of language loss. Together, they discuss the impact of this progressive condition on communication and relationships, and the critical role that speech therapy plays in maintaining meaningful conversations. -- Key Topics Discussed:

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

In this, the third of our conversations around AI in speech and language therapy, we look at AI as a tool for people who have aphasia - a language disorder that affects a person's ability to speak and understand. Caitlin Longman, Accessibility Lead at the Stroke Association tells us about her work with people with aphasia and we hear from some of them about how they are using AI and also what are their concerns. Dr Abi Roper, an academic speech and language therapist and self-confessed 'techy' tells us about her research into AI to support aphasia.Interviewees:Caitlin Longman, Accessibility Lead at the Stroke Association, guest lecturer at Strathclyde University.Abi Roper, Speech and Language Therapy research fellow at City University and Joint chair of the Computers in Therapy CEN.Resources:For RCSLT Members only:Artificial Intelligence resources: www.rcslt.org/members/delivering…ligence-resources/Integrating Generative AI in speech and language therapy: a practical guide www.rcsltcpd.org.uk/lessons/ai-in-slt/Open access:Computers in Therapy CEN (‘CITCEN') citcen.org/Co-Pilot copilot.microsoft.com/ChatGPT chatgpt.com/Image gen Free AI Image Generator - Image Creator in BingFactsheets from AbilityNet about AI abilitynet.org.uk/factsheets/what-…-how-do-i-use-itFree webinar from AbilityNet about how AI can help disabled people abilitynet.org.uk/webinars/how-can…-disabled-peopleWebinar series from the Health Foundation about AI and the NHS (exploring priorities and anticipating the future) www.health.org.uk/about-the-health…re-of-healthcareA guide from the NHS Confederation on AI: "AI in healthcare: navigating the noise". www.nhsconfed.org/publications/ai-healthcareBlog from NHS England ‘How artificial intelligence is helping to speed up the diagnosis and treatment of stroke patients'. www.england.nhs.uk/blog/how-artifi…troke-patients/Research:AI technologies in therapy - experiences and perceptions of SLPsSuh, H., Dangol, A., Meadan, H., Miller, C. A., & Kientz, J. A. (2024, June). Opportunities and challenges for AI-based support for speech-language pathologists. In Proceedings of the 3rd Annual Meeting of the Symposium on Human-Computer InteracPlease be aware that the views expressed are those of the guests and not the RCSLT.Please do take a few moments to respond to our podcast survey: uk.surveymonkey.com/r/LG5HC3R

Dr. Aura Kagan has been named to the Order of Canada for her work transforming the lives of people with aphasia, a language disorder that affects a person's ability to communicate.

  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 sustaining and developing friendships? These friendships could be individual friendships or partner friendships or group friendships through social, religious or professional activities or even community groups.   Liz: Thank you for this question. I think it's sometimes a forgotten group that we overlook, the care partners, and the critical role they play in the recovery of people with aphasia. I always try to have us remember we want the care partners to do well on their own as people, and so we've done a couple projects. We've just finished data collection on a much larger study of 80 aphasia care partners, and I'm just getting into those data. We did a Qualtrics survey and also did experience sampling, where we used a phone app, and four times a day for two weeks, participants got these little pings, and they had to tell us, Where are you? What are you doing? Who are you with? How are you feeling? When was the last time you interacted with a friend? Was it a text? I don't have the amazing outcomes for you yet. This project was a much bigger follow-up to a project a few years ago with 35 care partners. We, of course, wanted to interview them but then COVID was happening, so we settled for a really nice Qualtrics survey.   I will say that these individuals were surprised when we were reaching out to them. They kept trying to schedule their loved one with aphasia, and we said, “No, we want to talk to you about your friendships.” And they were surprised, asking, “You want to talk about me.' I will say they were very excited that we wanted to know about them. Back to the timeline I shared earlier in that very small study, the profile was opposite. We asked them about their friendships before they were caregivers, the early stages of caregiving, and then now, and their comments kind of make sense. Across the group they reported in the early stages, they felt like they had really great friends, support and satisfaction. People were rallying around them, coming to the hospital to support them. Many of them had been caregiving for a very long time when we did a comparison, and their reported friendship satisfaction and support was actually lower now. The questions were not the same and the groups were different, but as I told you a few minutes ago, the people with aphasia were more negative in the acute stage, and our small group were more positive now with how they're feeling about their friendships, and the care partners were the opposite. They were feeling more supported in the beginning, and now as time has gone on, some of them report the friends aren't there as much. Some of them felt like they were a burden, or they didn't know how to engage, being very selfless. They have dropped their own social interests to take care of their loved one. We did see in that project, that the longer, the more months a person had been caregiving, was correlated with poor self-perceived friendships and also how they perceived their loved one's health. That was just their perception. If they perceived their loved one to have more health concerns, not just a feature but overall health, they also tended to rate themselves as not as satisfied with their friendship. Bringing in that piece of information and the caregiving burden into our new projects, we did actually get scales on resilience and caregiving burden depression. In this new project we replicated some of our same questions, and we're now trying to look more at overall well-being, seeing how resilience and purpose in life and caregiving burden might play a role.   Janet: That reminds me of the commercials, when you are taking off in an airplane or when you are thinking about being a care partner, you do have to take care of yourself as the care partner before you can give the best care to the person with aphasia. Anything that we can do to focus on the person the with aphasia, and also focus on the care partner, I think, is good in terms of developing and sustaining friendships,   Liz: Yes. Care partners definitely have a lot more to say, and we haven't actually been able to do face to face interviews yet, but we did have a lot of really rich, open ended responses and surveys that we're still looking through. A piece I'm really interested in, is we have that one-time perception when they did our one-time survey, now we have their responses, we can track how people respond over a two-week period, were they always at home with their loved ones and not responding to friends? I think there's just a lot and again, trying to understand from this group what are the positives. Who are the people that have these positive responses? Then, of course, the next big steps are trying to provide more research resources and interventions for both care partners and people with aphasia. Our group has not yet reached out to friends, so that's a big part to come. I think other researchers have examined friends and a key part intervening with these friends too.   Janet: People with aphasia and care partners have different friendship styles and needs, and when aphasia disrupts communication, it can also affect the way a person approaches friendship. As speech-language pathologists, I believe that we can play a role in guiding a person with aphasia and a care partner to develop communication skills that can support friendship efforts. Liz, what are some ideas or actions that you might think of for speech-language pathologists in a busy clinical practice? What kind of actions can they take to support friendship activities, for a person with aphasia, recognizing, of course, that we are all different in our friendship activities. Also recognizing that you're at the very beginning of some of this work, I'm hoping that you have some ideas you might be able to share with us.   Liz: Yes, actually our very first friendship project addressed this topic. It was led by Michelle Therrien, and we surveyed about 40 speech-language pathologists trying to find out their view of the role that they think they should play. They find friendship to be very important. They find it to be in their scope of practice. But not surprising, were not aware of resources. They felt overwhelmed with how much speech-language pathologists have to cover, right? But it was really good to know that the group we reached out to found it to be a very important part of their practice that they want to address. I think you hit on something really important, that we teach and adopt having a person-centered care model, and we know that it's part of what we ask about. The simplest thing is asking. We don't need tools. We just need to make sure it's part of what we ask, making sure we're talking about relationships, talking about friendships.   There are some really great tools that do exist. There's the Stroke Social Network Scale by Sarah Northcott and Katerina Hillary from the UK. Katie Strong, Brent Archer, Jamie Azios and Natalie Douglas are a wonderful group who have been studying friendship. They've used the Social Convoy Model in some of their papers. It has a great visual that they have used, and therapists can also use. Basically, it is mapping out the social network of who's most important, which could be used one time, or as a pre-post measure. There are different ways, formal or informal, of trying to monitor someone's social network or how they feel supported. I don't think there's a target number of friendships and I don't think more means better, but it could be just making sure we're checking in and that we know that's an important part of therapy. We want them to be able to communicate and interact with friends. Speech-language pathologists are creative in to how to make that happen.   Janet: I agree with that view Liz, and I hope that speech-language pathologists will feel comfortable being creative and asking people about their friendships or what they might need to help maintain or sustain their friendships.   I would like to turn now to the topics of reading and literacy, which I know you have been investigating. While these terms are related, they are not synonymous. Would you please explain the difference between them and how you are investigating both in your research?   Liz: Yes. Thanks. That is a good question. To be honest, the first answer is not very scientific. When I was writing papers it was getting cumbersome to always write reading and spelling/ writing. The term came to be when I wanted to make sure that I was making it clear that I wasn't just focused on reading, but also concerned with the spelling and writing components. With my colleagues, Jessica Obermeier and Aaron Bush, we started using the term literacy for some of our work. People will have different ideas of what literacy might entail. I have been describing treatment as “literacy focused”, working on reading and spelling and writing.   My initial work was very much focused on reading, and over the past several years I became more interested in trying to also add on the spelling component. If we're working on spelling and writing it gives us a chance to inherently work on the reading. If we're only focused on reading, it doesn't bring in the writing. There's a time for them to be separate, I fully agree. There are also times where they can be targeted at the same time.   Janet: That makes perfect sense. When I think about how we discussed in the past, reading for pleasure, or reading to gain knowledge, or reading for information, or reading for safety, so many different aspects of reading, literacy also factors into how you use reading in those situations.   Liz: Yes, and so in a lot of day-to-day communication, you need both, right? It's for text messaging, right? We need to read it and respond in a written way, also emails. There are lots of instances where for the for the interaction to go well, we need to be able to read and respond in writing, such as filling out forms, email, texting, social media. For a lot of interactions we need both for there to be a successful written language exchange.   Janet: Liz, as part of our work with the Academy of Neurologic Communication Disorders and Sciences, Aphasia Writing Group, you and I were part of the team who critically reviewed treatment approaches for reading comprehension deficits in persons with aphasia. You've also investigated, as you mentioned earlier, specific aspects of reading deficits in persons with aphasia. What are some of the insights that you have gained from this work? And by the way, it was such a pleasure doing that critical review of treatment for reading deficits, and there was a lot of interesting information that came to light in that paper.   Liz: Yes, thank you. I was going to comment that I remember we thought we were going to have all these papers to go through and really and that review, we were very much focused on papers where the main outcome was reading comprehension. When we stuck to what our aim was, there really weren't that many papers that that met the aim of that project. So that really brought to light that it really is an area of our field that doesn't have enough attention.   Some of my recent projects, as I mentioned with Aaron Bush and Jessica Obermeier, we've talked to people with aphasia and gotten their perspective of before and early days. I really like doing this research over time. Things change, but we learned just how important reading and writing are to people with aphasia, and that they really want to work on it. I think we've seen when we looked in the literature, there wasn't much there. When we've talked to people with aphasia and speech-language pathologists, they want to work on reading, and they're not sure how. That further motivates me that this is an area to work on.   In some of my beginning work, I was Diane Kendall's research speech language pathologist for a few years before I did my Ph.D., and I exclusively delivered her phono motor treatment. In that research trial, the main outcome was word retrieval, but the therapy that she designed inherently worked a lot on reading and writing. We retrained every phoneme - how to say it, what your mouth is doing, and also the graphemes that go with the phonemes. As her research speech pathologist, that's really when I got very interested in reading. I'd be in these sessions, and we'd finally bring out the graphemes that go with the phonemes. I recall telling people that this is going to get better – and it did not. That connection between the phonemes and the graphemes, for a lot of people, wasn't there. In that clinical experience as her research speech pathologist is when I realized that the treatment improved reading for some people, but not for everyone. So that's my background of really getting focused on reading.   In the last few years, I've been working on adapting that original version of treatment that was for word retrieval. I've added some components to make it more focused on reading. I've been working with Olga Burkina, who's at the Kessler Stroke Foundation, and has an NIH grant where she is pairing exercise with this reading focused phono motor treatment. It's fun to be a part of that group exploring the idea of doing aerobic exercise to improve the brain blood flow, and to see if that's going to help improve reading treatment. Again, the idea being going forward is what the treatment might change.   There are some other projects also. I'm working with Will Graves at Rutgers. He is using computational modeling to have us stop guessing which treatment. We're trying to get a really good baseline assessment, trying to find out about semantic impairment, phonological impairment, and then we're using this reading focused phono motor treatment. We also have a reading focus semantic feature analysis. I really enjoy getting to work with different researchers who have these wonderful, big questions, and that I'm getting to support it as the speech-language pathologist on these projects focused on reading and writing and phono motor treatment. So those are some exciting projects I'm involved in right now.   Janet: That's exciting, because you started out by saying there were only a few papers that we found that really address reading treatment, and you're right.  It's daunting, then how do you select the reading treatment? How do you help this person with aphasia who wants to improve their reading comprehension? I think it's exciting that you've got all these different avenues and are working with a variety of people to investigate treatment.   Liz: Yeah. And the one thing I'll add to that is part of that, that review we did, for some people those treatments are helping reading comprehension. But for some people, I've been trying to work on the next step. I have a very small dataset where I've added a semantic comprehension stage to my adapted photo motor treatment. I'm in the very early stages of this and I'm sure it's fine to say, but I've been having these really exciting conversations with Kelly Knollman-Porter and Sarah Wallace. They're also Tavistock Trust recipients, and they study reading from a different perspective, using text to speech, compensatory and very focused book reading. They're very comprehension focused, so we're at the very early, fun stages of where we are in our thinking. I think there might be a middle step we are missing, but we are talking about taking these impairment focused treatments, which I think have a role, and have a participation, functional part of it. That's another emerging, new collaboration, where we are coming to reading from different perspectives, and we're trying to see where we can get with that goal, back to this comprehension question, improving functional reading, maybe from impairment and compensatory approaches.   Janet: I think that's the right approach to take, and I think it's exciting, because we have to remember that everybody reads differently. Some people like reading, some people don't enjoy reading. They read what they have to, but they don't particularly enjoy it. So, if we all come to it from different perspectives, we all have different strengths that we bring, and different deficits as well, and different needs or designs, just as is so many things with aphasia. Start with the person with aphasia, asking What do you want to read? What problems are you having? Then use that as a guide to selecting an impairment-based treatment or text to speech treatment, or whatever. I think that's exactly the right approach.   Liz: The one thing the treatment we were talking about, phono motor treatment, in general, is a phonology treatment. The good thing is that my focus is asking, is it improving reading? I'm also extending it to writing. We do know at its core, it's a language treatment, so it is nice that it can be tweaked to serve the person's main interests. I think that's important, that we are trying to work on what people want to work on, but we want to make sure we're improving, if we can, not just one language modality, and we know that these abilities are supported by similar brain structures and underling cognitive processes. That's something else we've been trying to work on, being person centered and at the same time trying to maximize generalization - lots of pieces. I am finding now what's most motivating and exciting is trying to make sure that we're doing things that people with aphasia find important, and how also to keep the whole science moving forward in this way that's going to have functional, important outcomes. That people with aphasia are going to be able to do what they want to do to the best that they can.   Janet: Absolutely! But then there's the scientific challenge of how do you collect the data? How to best observe specific outcome data on performance measures, but also collect the person-centered data. How do you collect data that really can speak to whether you're having a success and whether this might be generalizable or transferable to another person?   Liz: I think it's important that we need both. I always say, and some of my collaborators may not like it, but if in the person reported outcome, a person with aphasia is telling us that they feel better and that they are communicating better in life, and those measures should not be optional, those measures to me, a critically important part of seeing this treatment successful. There are different ways to do that and different ways to capture their perspective. For example, if trained reading words moved this much and if the patient reported outcome change is greater, then I find that to be a success. If the reverse happens, I find treatment not successful. If my probes showed gain but the person with aphasia does not see it or feel it, then I don't find treatment to be a success. So, I think it's really important that persons with aphasia tell us different things, and we need to have many assessments in both of those categories. I think, when possible.   Janet: You're absolutely right. When you think about many of the treatments that we're doing, they are not necessarily easy, and they take time, and you have to stay the course. I think you know, I've been interested for a number of years in motivation and engagement, and what keeps people motivated and doing what they're doing. If you've got a treatment that you can see over time, small changes in your specific reading outcomes, but not so much of a change in the person centered outcomes, or person reported outcomes, how do you know the person is still really engaged and motivated and willing to slog through your treatment in order to get to the place that you hope they will? I think you're correct when you're assessing the importance of the person reported outcome.   Liz: Yeah, that's good. And then that's a whole other like measure in itself, right? The key of motivation we've talked about in some of the trials. The one person who didn't do very well, and just in our conversation, sometimes it for different reasons. That wasn't motivating for that person. There's that's a whole very important piece that a lot of us have a lot of room to improve in how we capture that and support that.   Janet: Which is a challenge when we're trying to devise treatments for, say, reading or anything that can be applicable to a wide range of persons with aphasia. Kudos to you for meeting that challenge as best you can.   Liz: We're working on it. But I do really think that it's changing. Sometimes I feel like there are impairment-based people and life participation people, and I don't think it needs to be that way. It's fine if we only study one area. We can't all study everything, but I think as a whole they complement each other very well. And so I'm just excited to see that it seems like things are moving in a really exciting way, where people who study aphasia in various different ways now seem to have the main outcome, asking is this going to help people with aphasia feel better, communicate better, and look forward to something different in life? I think we're all seeing that that's what we're supposed to be doing, and how we do it is going to look really different, and that's great. I think we're moving in the right direction.   Janet: Very well said. I think, and you obviously do as well, that literacy and reading skills are crucially important to individuals with aphasia in so many ways, such as life skills reading or pleasure reading. Acknowledging that we all have different skill levels and preferences, what are some ideas that you might have identified that speech-language pathologists can use to support the literacy and reading desires and activities for a person with aphasia?   Liz: Great question. I think my answer is very similar to the question about what can SLPs do to help support friendship? I think being person centered. You said earlier, right, we all have different interests. Somebody might say it's not one of my goals and I really don't want to spend a lot of time on this. But just having those conversations and person-centered measures and using supported conversation we can easily gather important information. There are some really good patient-reported outcome measures that ask about reading, so maybe use some of those existing tools. The Comprehensive Aphasia Disability Questionnaire has a nice scale that talks about different aspects of reading as well as other aspects of language. But at the minimum, I think finding a way, even just to draw your own scale and then trying to find out in their life, what are different activities where they want to or need to engage, right? Texting, email, restaurant. I mean, we think about it, we're reading all the time throughout life. So, I think finding the reading need is a general interest and then getting really specific is one way to do it. Another thing could be, as I mentioned before, our brain relies on similar structures and language networks when we are engaging in spoken language and written language. So oftentimes improving our reading and writing improves our spoken abilities and vice versa. So even if it's not the main goal in treatment, for example if the main outcome might be word retrieval, I really believe multimodal learning is important. If, after you've gone through what you want to do say writing it, having them repeat it, maybe copy it, even though that's not the main goal, and it's not slowing the therapy, if it's working for you and your client, then I really think, at the minimum, using written language to support spoken language has a good role. I also think the opposite can be true using spoken language to support written language. So I do think that it's important that we know we are addressing all of language, and that that language skills really do usually move up and down together in aphasia.   Janet: Well said, again. Liz, thank you so very much for joining me today in this fascinating look into friendship, literacy, reading and aphasia. And again, hearty congratulations to you on being named Tavistock, Distinguished Scholar. On behalf of Aphasia Access, I wish you well in your research and clinical efforts, and thank you for taking the time to speak with me today. At this point, I'd also like to thank our listeners for supporting Aphasia Access Conversations by listening to our podcast, including this fascinating discussion with Liz Madden.   Liz: Thanks so much, Janet, I feel like you could just chat with you all day. Thank you again for giving me a chance to highlight some of my work. Also I want to thank everyone with aphasia who has participated in my projects, all my students and collaborators, Aphasia Access and the Tavistock Trust for Aphasia. Thanks again.   Janet: For references and resources mentioned in today's podcast, please see our Show Notes. They are available on our website, www.aphasiaaccess.org. There you can also become a member of our organization, browse our growing library of materials, and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@aphasiaaccess.org. For Aphasia Access Conversations, I'm Janet Patterson, thanking you again for your ongoing support of Aphasia Access. References Antonucci, T. C., & Akiyama, H. (1987). Social networks in adult life and a preliminary examination of the convoy model. Journal of Gerontology, 42(5), 519–527. https://doi.org/10.1093/geronj/42.5.519 Archer, B.A., Azios, J.H., Douglas, N.F., Strong, K.A., Worrall, L.D. & Simmons-Mackie, N.F. (2024). “I Could Not Talk . . . She Did Everything . . . She's Now My Sister”: People with Aphasia's Perspectives on Friends Who Stuck Around. American Journal of Speech-Language Pathology, 33, 349–368. https://doi.org/10.1044/2023_AJSLP-23-00205 Azios, J.H., Strong, K.A., Archer, B, Douglas, N.F., Simmons-Mackie, N. & Worrall, L. (2021). Friendship matters: A research agenda for aphasia. Aphasiology, 36(3),317-336. https://10.1080/02687038.2021.1873908   Madden, E.B., Bislick, L., Wallace, S.E., Therrien, M.C.S. & Goff-Albritton, R. (2023). Aphasia and friendship: Stroke survivors' self-reported changes over time. Journal of Communication Disorders, 103, 106330. https://doi.org/10.1016/j.jcomdis.2023.106330 Madden, E., Conway, T., Henry, M., Spencer, K., Yorkston, K., & Kendall, D. (2018). The relationship between non-orthographic language abilities and reading performance in chronic aphasia: An exploration of the primary systems hypothesis. Journal of Speech Language Hearing Research, 61, 3038-3054. https://doi.org/10.1044/2018_JSLHR-L-18-0058 Madden, E. B., Torrence, J., & Kendall, D. (2020). Cross-modal generalization of anomia treatment to reading in aphasia. Aphasiology, 35, 875-899. https://doi.org/10.1080/02687038.2020.1734529   Purdy, M., Coppens, P., Madden, E. B., Freed, D., Mozeiko, J., Patterson, J., & Wallace, S. (2018). Reading comprehension treatment in aphasia: A systematic review. Aphasiology, 33(6), 629–651. https://doi.org/10.1080/02687038.2018.1482405 Strong, K.A., Douglas, N.F., Johnson, R., Silverman, M., Azios, J.H. & Archer, B. (2023). Stakeholder-engaged research: What our friendship in aphasia team learned about processes and pitfalls. Topics in Language Disorders, 43(1), 43-56. https://10.1097/TLD.0000000000000302   Therrien, M., Madden, E. B., Bislick, L., & Wallace, S. (2021). Aphasia and Friendship: The Role and Perspectives of Speech-Language Pathologists. American Journal of Speech-Language Pathology, 30(5), 2228-2240.   Resources   Stroke Social Network Scale reference and materials: https://cityaccess.org/tests/ssns/      Aphasia Access Conversations Episode #119 - Finding the person in front of aphasia: A conversation with Lauren Bislick

Jonathan Bogner's story is one of resilience and unyielding optimism. After surviving two strokes, navigating aphasia, and ultimately undergoing a life-altering heart transplant, Jonathan has redefined his purpose. A producer of films and reality shows, Jonathan now uses his platform to advocate for organ donation and shine a light on the challenges faced by caregivers and patients alike. He shares how rigorous optimism, rugged flexibility, and resilience have become his guiding principles in overcoming adversity. Chapters00:00:00 - A warm welcome to the Eternal Optimist Podcast00:00:19 - Meet Jonathan Bogner: A man of resilience00:00:57 - Achievements that paved the way00:02:21 - The battle begins: Health challenges and heart failure00:07:39 - Living life with a defibrillator00:10:25 - When your chest starts beeping: A surreal realization00:12:48 - The toll of repeated shocks and heart degradation00:15:00 - "Does size matter?" The heart transplant waiting game00:18:15 - The unexpected gift of a woman's heart00:20:07 - The delicate balance of optimism and medical reality00:22:48 - Inside the heart transplant experience00:27:45 - Aphasia and intubation: A fight to communicate00:31:13 - Countdown to a heart transplant00:34:41 - Redefining routines post-transplant00:36:08 - Mental health and the philosophy of optimism00:42:01 - Juggling life's roles: Caregiver, creator, and survivor00:45:00 - The three R's: Rigorous optimism, resilience, and rugged flexibility00:48:50 - Wisdom and reflections to carry forward00:55:15 - Lightning round: Favorite books and life-changing insightsLinks and ResourcesJonathan BognerJonathan on LinkedInPersonal StoriesJonathan on IMDbBook RecommendationsMaster of Change by Brad StulbergThanks so much for joining us this week. Want to subscribe to Eternal Optimist? Have some feedback you'd like to share? Connect with us on iTunes and leave us a review!

In this episode of the Making Headway Podcast, host Eryn speaks with Bryce Daly, a stroke and aneurysm survivor who shares his incredible journey from being a promising student athlete to navigating the challenges of recovery and living with aphasia. Bryce recounts the traumatic experience of his stroke, the subsequent coma, and the long road to rehabilitation. He discusses the emotional and physical hurdles he faced, the importance of support from family and friends, and offers valuable advice for others dealing with similar challenges. The conversation highlights the resilience of the human spirit and the power of community in recovery.Keywordsbrain injury, stroke survivor, aphasia, recovery, support, resilience, mental health, community, rehabilitation, survivor storyTakeaways· Bryce had a 5% chance for survival after his stroke.· Recovery from a stroke can be a long and challenging journey.· Aphasia can lead to feelings of frustration and isolation.· Support from family and friends is crucial during recovery.· It's important to advocate for oneself in social situations.· Memory can be affected by brain injuries, but it can also improve over time.· Engaging in physical therapy is essential for regaining strength and mobility.· Community support can make a significant difference in recovery.· Don't give up on communication; progress takes time and patience.· Sharing experiences can help others feel less alone in their struggles.Sound Bites"I was in a coma for weeks.""Don't give up.""I can't remember everything.""I love my memory.""I can remember everything."Chapters00:00 Introduction to the Making Headway Podcast00:47 Bryce's Survivor Story: From Athlete to Stroke Survivor06:03 The Journey Through Coma and Recovery11:49 Living with Aphasia: Challenges and Triumphs18:00 Advice for Others with Aphasia and Brain Injuries24:10 Community and Support: Reaching Out for HelpReach out to Bryce on IG @bryceweeklyEryn on IG @eryn_makingheadwaypodcastAlison on IG @alison_maknigheadwayodcastMHP on IG @makingheadwaypodcast Go to our website www.makingheadwaypodcast.com for full show notes and resourcesSupport us atPatreonDonate section on our website.

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 almost always simply said, “I remember exactly”. Because as others told stories that she was familiar with, she could comment that way. Otherwise, her conversation skills were not there. So that was our first hour that we would spend together simply informally visiting with each other. And the second hour that we spent together, we would go to what I would call “my theater,” our living room with a 50-inch television. And there we could read Aphasia-Friendly stories. I would stream the story to the television set. I would have them formatted so that there would be an H for Harold, an R for Rosella, and we would read the story so that the folks who were listening and watching could see the story as well as hear the story. And if we made any mistakes, they could make the corrections in their own mind. There was a way that she was able to, again, participate. It's worth telling. But there was one waffle evening when she turned to me, and said, “China”. I knew she had a story in mind, but her look said, “you tell it. I can't do it.” And so, I did. It was a story about a cracked tea cup And so I decided certainly next Waffle Night we need to let her help tell that story of the cracked tea cup. Here is that story. Cracked Tea Cup. H: This is as story of a cracked tea cup. R: Harold and I were youth sponsors. H: Rose was one of the youth. R: Winifred was her mother. H: She invited me to her home. R: “Thank you,” she said. H: “Thank you for being Rose's sponsor.” R: We visited. H: Before leaving, she said R: “Let me pray for you.” H: It was a pray of blessing… R: …for our work in Mississippi. H: Then she added, R: “Wait!” H: “I have something for you.” R: She got a tea cup. H: Erland brought it to me from China. R: It's cracked. H: Put it in your china cupboard. R: You'll never use it. H: “But you'll remember be when you see it.” R: Sixty years are gone. H: This tea cup is still in my china cupboard. R: And I remember Winifred. H: It reminds me R: Of the grace, H: Of the affirmation, R: Of blessing, H: Of the seminary president's wife.   And so those Waffle Nights became the favorite parts of our week when we could spend time with friends and Rosella could be part of the conversation by reading stories together with me. Katie Strong: So beautiful! This is really just a fabulous way of having such a natural thing, a shared meal, a celebration to share stories. And it sounds like everybody enjoyed Waffle Nights. So, thank you for sharing, Harold. Erin, I was wondering if come into the conversation a bit more and tell us how you got involved with Harold and the Aphasia-Friendly Reading Approach? Erin O'Bryan: Thank you, Katie. Even though I've heard Harold's story so many times, I still get teary every time I hear him talk about their year of not being able to see each other during COVID and the Waffle Nights that were just so wonderful. So, I met Harold in 2019 when I first became an Assistant Professor after 10 years of working as an SLP in healthcare. And Wichita State already had a weekly aphasia group, and I couldn't wait to meet the members. So, I went to aphasia group and there I met all of the care partners in the observation room and Harold showed me a video of him and Rosella reading a story together. I had been watching Rosella in the aphasia group and I'd seen that most of her utterances were short one- to two-word phrases and that much of her communication was nonverbal. But then in the video, she was reading full sentences aloud, taking turns with Harold. And what really struck me was that she was so motivated and happy to read the story. I was so impressed. Harold asked me, “Do you think that other people with aphasia could benefit from doing this?” So many thoughts were running through my mind as we were having this conversation. Earlier in 2019, I had visited Audrey Holland, who was one of my mentors when I was in grad school at University of Arizona. And we'd actually set up this meeting through an online Scrabble chat. She invited me to her home. Katie Strong: How very ‘Audrey'. Erin O'Bryan: Yes, it was lovely. And I got to visit her with all her kitty cats. So, I asked her advice because I was applying for an Assistant Professor position after 10 years of working in health care. And I remember that she was so excited about her speechpathology.com video series and the related book that she was working on with Roberta Elman that she liked to call the Social Imperative of the LPAA, which I believe is the subtitle of that book. And Katie, I think you were a part of both the video series and the book. Katie Strong: I was, yes. Erin O'Bryan:  Well, Audrey just loved that. She was so excited about that, and she told me to learn everything I could about the LPAA. And she said, “I must join Aphasia Access.” She said, “that's where all the important work is happening.” So that year I listened to loads of Aphasia Access podcasts, and I got very familiar with the Chapey and Colleagues LPAA Values chapter. So then as I'm sitting there talking to Harold, I'm thinking about the LPAA value, everyone affected by aphasia is entitled to service. So, I mean, who is affected more than a spouse? So definitely I was thinking about having the care partner being involved seemed like a wonderful thing. And I was also thinking that Harold and Rosella's approach shared so many similarities with Script Training, which I have loved and have been using in healthcare care since grad school. And there also are similarities with ORLA and Multiple Oral Rereading. And all of these are evidence-based treatment approaches. So, I felt pretty confident that Aphasia-Friendly Reading could be a very valuable intervention. So, I said to Harold, “I'd like to try using your approach with other people with aphasia and their care partners in our clinic”. And Harold was happy for us to try it. Katie Strong: I love that. I love that. And just for our listeners, we'll put some links and references in the show notes for some of the approaches like ORLA and Script Training that Erin has mentioned in addition to Harold's book and some other some other resources too. Erin O'Bryan: Yes, thank you, Katie. Those are all wonderful resources for people to be looking at. So, my grad students and I started a pilot study with a woman with aphasia and her husband. And they were actually friends of Harold and Rosella's from their aphasia group. We use the pseudonyms Cora and Dave when we describe them in our papers. It became clear that we needed to make a few adaptations to Harold's approach for use in the clinic. For one thing, I wanted the person with aphasia to have the largest role in selecting the story topic and deciding what she wanted to say. For our first session, we asked Cora and Dave to bring ideas for a story that Cora wanted to tell. And we also suggested they consider bringing some related photos. In our first session, Cora, Dave, my grad student, Addison, and I all sat around the table and together we brainstormed about the story. Cora wanted it to be about a Caribbean cruise that she and Dave had gone on. She brought photos from that trip. Dave helped with supplying names and information about places that Cora wanted to talk about. Places from their shore excursions, such as having their picture taken with a donkey in St. Thomas and visiting the Bomba Shack on the island of Tortola. We got Cora's feedback on every line that was proposed, fine-tuning the story until Cora liked every line. And we also adjusted some of the lines to make them easier for her to say. So once Cora and Dave were happy with the story, we helped them practice during our sessions, one hour per week with my grad student, Addison and I at the clinic. And we gave a printout of the story and a practice log to record notes about their home practice. In this first pilot project, Cora and Dave practiced their story for eight sessions until Cora said she was ready to plan their story sharing celebration. Then they shared their story with their friends in aphasia group. And the clinicians and the other people with aphasia in the room were just amazed. And other people in the aphasia group said, “I want to do that!” So, after two people with aphasia and their care partners did Aphasia-Friendly Reading projects, I wrote a manuscript reporting the pilot results. And Katie, I had seen online that you were an editor of Perspectives at the time. So, I emailed you my manuscript and asked if it was appropriate for Perspectives. And you emailed me back and said, “let's meet online and talk about it.” I was so delighted that you were interested in my project. You suggested that I consider exploring the value of the intervention by interviewing the participants. And I didn't know anything about qualitative research. But, Katie, you helped me write great interview questions for the care partners. And you helped me learn thematic analysis so we could find the themes in the care partner's quotes. And so, after learning from you, I have come to love the thematic analysis process. I really think it leads to deep listening. What we learned from the interviews is that the care partners felt empowered by being included in the intervention and the care partners really valued the collaborative nature of the storytelling project and especially that the intervention was so different than the previous therapy experiences that they had had because it was person-centered, it was fun, and they got to share their story with other people in their lives. So, then the three of us, Harold, Katie, and I wrote our first article about Aphasia-Friendly Reading and it's published in Aphasiology and the title is, “I wasn't just sitting there”: Empowering care partners through the Aphasia-Friendly Reading Approach. And then in 2023, the three of us went to Boston and presented it at ASHA. Katie Strong: Thanks for sharing that, Erin. You know, I think the experience of the care partners saying that therapy was fun important to note. And Harold has mentioned that Rosella thought it was fun, and the other participants thought it was fun. And I guess I just want to bring home that hard work can, can still be fun or therapy can be fun. And especially when it comes from the person with aphasia and their care partners. The topics are generated by the client and care partner. They're sharing things that are really important to them that have happened in their past. I love it. Erin O'Bryan: And one of the care partners even said that they learned better when it was fun. Katie Strong: I love it. Fantastic. Erin, I was wondering if you could share some tips for clinicians who might be listening that are thinking about how they might be able to incorporate this Aphasia-Friendly Reading Approach into their practice. Erin O'Bryan: Thank you for asking, Katie. So, in the past year, you and I have been talking about how we want to make it as easy as possible for clinicians to use our storytelling approaches in regular clinical settings, outside of research. And we really want clinicians to realize that it takes almost no time to prep for a person-centered storytelling session. You just have to go into the session ready to actively listen to what the person with aphasia wants to say. I love the acronym PULSE that you and Barbara Shadden wrote about in your paper, The Power of Story and Identity Renegotiation. And then in our paper, we reviewed PULSE again. So just for our listeners, I'm going to go through it real quickly because I think these are great things for clinicians to keep in mind. The P in pulse is for partnerships, partnering with the person with aphasia. And in the case of Aphasia-Friendly Reading, the clinician partnering with the care partner also. The U in pulse is for uniqueness. So, the clinician should be prepared to help the person with aphasia tell their unique story. The L is for listening. The clinician needs to learn how to really listen. And S is for supporting the person with aphasia in telling their stories. For example, using communication ramps in Supported Conversation for Adults with Aphasia strategies to support communication. And then finally, the E impulse is for explore. So as a clinician, be ready to go off-road with your client to explore the story that they want to share. And as a clinician, know that it's okay, even it's great for you to do that. Katie Strong: I love that. I love that. Erin, I guess that leads us into sharing that we do have a paper that came out in 2024 called Person Centered Stories on the Main Stage in Intervention, which highlights examples from three different story projects, including Aphasia-Friendly Reading. So, we'll link that to the show notes as well. Erin O'Bryan: Yes, and this year at ASHA 2024, Katie, you and I are going to be also giving a talk about this work called Elevating Person-Centered Stories to the Main Stage in Aphasia Intervention. And we are looking forward to presenting this work hopefully to an audience of clinicians. Katie Strong: Yes, yes, we hope to see folks in Seattle for sure. Well, I want to bring back both Harold and Erin into this conversation. And I think one of the things that I've recognized through this collaboration that you and Harold and Rosella and later on I got to be a part of is that we really are all better together. And I was hoping each of you could take a moment to share how this work has changed your thinking or maybe some ideas about sharing with others about what you've learned from this collaboration. Harold Regier: Well, for me, one of the things that I think I really learned from this is that we care partners need the therapist and the therapist needs us care partners. And there are more ways in which we can work together than perhaps sometimes we have done it when we have just been sitting there. And so, I really, I'm so pleased to be able to feel that that we care partners are more involved or can be more involved in the whole therapy process than what so often we have been. But I think that one of the things that the therapist needs to help us understand is when is it appropriate for us to be part of the process and when it is not appropriate for us to be part of the part process. It's not a matter of us being there all the time and sometimes being in the way. So, I think that kind of very frank candid conversation with us would help us understand that. And I certainly understood better that that the role of the care partner in terms of helping the person with aphasia be able to communicate better is very different from the role of the therapist. I never tried to be the person who was the teacher, trying to let Rosella know how she should do better and how we might be able to improve our reading. We just did it and it came out the way it came out. But then when I see how Erin was working with other clients and the persons with aphasia and the family members together identified the stories that they were interested in putting together, and the therapist helped put that together into words that they then could repeat or share together and in a storyline, that that is the place where I think we can be so much more collaborative with the therapist in a process like that. So I just always was telling myself, “Don't be a therapist. Don't be a teacher. Don't try to say, well, you can do better than that. Just simply do what is natural.” And then I wish that the therapist would take the other role and really work hard to help the person with aphasia do better with their reading and their performance. We didn't do our reading for production. We did it for fun, as you were saying earlier. And then we did it because we wanted to share that fun and that experience with others. And that was so very, very satisfying for us. Those are some of the thoughts that have come to me in terms of the relationship between therapist and care partner. Katie Strong: Thanks Harold. Yeah, Erin, any thoughts? Erin O'Bryan: I've learned so much from this collaboration. From Harold, I learned what a difference it makes when a care partner puts so much time and thought into supporting their partner with aphasia's communication and her quality of life. Also I've seen how much Harold has done and I hope that me you know as a busy professor stopping and taking the time to tell him that I saw so much value in what he was doing at home with Rosella reading those videos together. I hope that this helped him realize that it was valuable to share. And I'm thrilled to say that Harold has been going around the state of Kansas giving talks about aphasia at colleges and senior living facilities. He's doing so much and I love to see that. And from collaborating with you, Katie, I've learned the importance of making the story sharing a really beautiful celebration honoring the person with aphasia and you know bringing special things like favorite food treats, beverages, flowers, and especially inviting the people that are important to the person with aphasia. We've now had five or six story sharing celebrations. It seems like everyone is more beautiful than the last. I've learned so much about that. And I've also learned that qualitative research helps me capture the meaningfulness of these projects and the meaningfulness as we're working with people with aphasia and that this research can be so fun and rewarding. Katie Strong: I love that. I love that. As I was listening to you, Erin, respond to Harold, it just sounds like together we can validate one another. The work that you're doing, you were doing with Rosella, Harold is very validating and then Erin bringing it into the lab to test it out and it's all beautiful. It's, it really is. And I guess as I reflect on this thought about what I've learned is to reiterate, Erin, something you said, that listening to family members or care partners and the ideas that they have to engage their loved ones in communication activities are so powerful and taking that time even if you are busy to listen and think and validate and see how that connects to the existing evidence-based literature. I think is really powerful. But I also think that there's this collaboration and the combination of care partners and clinicians and researchers. And of course, the person with aphasia at the center of all of that, making a powerful team to develop innovative methods of storytelling is really one of my big takeaways from all of this. Erin O'Bryan: Yes, that's wonderful. Harold Regier: I would like to give kudos to the therapists who worked with Rosella over the many, many years. Ten years of aphasia therapy, four of which were one-on-one, six of which were part of a support therapy group. Those therapists were such relational people, such encouraging people, and also knew the techniques that work in therapy. So, I wanted to say that those years were very, very meaningful, very, very helpful, and helped us with the day-to-day kind of living with hope, with the expectations that things can continue to get better. Katie Strong: Thank you, Harold. Yeah. Erin, any other thoughts as we wrap this up today? Erin O'Bryan: Well, I just wanted to say that I would never recommend that all intervention involve the care partner because I understand that it's good for the person with aphasia to get one-on-one time with the clinician. But don't forget that that care partner is often with the person with aphasia almost 24/7 and we may only see them one or two hours a week. So, it's so important that we do more to really educate the care partner about how to acknowledge the competence of the person with aphasia and really how to support their communication. So that's why I really want us to do more with in involving the care partner and in intervention. So, I'll get off my soapbox. Thank you, Katie, for letting us share about this project that I love. Katie Strong: I'm so delighted that we could have this time together today. Harold, thank you for your generosity and sharing your ideas and Rosella's stories with us and this beautiful work of Aphasia-Friendly Reading and Erin for your work in the lab and bringing it to the clinic. On behalf of Aphasia Access, thank you for listening. For references and resources mentioned in today's show, please see our show notes. They're available on our website, www.aphasiaaccess.org. There you can also become a member of our organization, browse our growing library of materials, and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@aphasiaaccess.org. For Aphasia Access Conversations, I'm Katie Strong. Thanks again for your ongoing support of Aphasia Access. Contact information for Guests – Harold Regier hrregier@cox.net  Erin O'Bryan, PhD., CCC-SLP erin.obryan@wichita.edu  Resources Aphasia Institute's Introduction to Supported Conversation for Adults with Aphasia (SCA™) eLearning. https://www.aphasia.ca/health-care-providers/education-training/online-options/ Chapey, R., Duchan, J. F., Elman, R. J., Garcia, L. J., Kagan, A., Lyon, J. G., & Simmons-Mackie, N. (2000).Life Participation Approach to Aphasia: A statement of values for the future. The ASHA Leader, 5(3). https://doi.org/10.1044/leader.FTR.05032000.4 Cherney, L. R. (2010). Oral reading for language in aphasia: Impact of aphasia severity oncross-modal outcomes in chronic nonfluent aphasia. Seminars in Speech and Language, 31, 42–51. https://doi.org/10.1055/s-0029-1244952 Cherney, L. Babbitt, E., Oldani, J., & Semik, P. (2005). Efficacy of repeated choral reading for individuals with chronic nonfluent aphasia. [Clinical Aphasiology Paper]  http://aphasiology.pitt.edu/1548/  Kaye, R., & Cherney, L. R. (2016). Script templates: A practical approach to script training in aphasia. Topics in Language Disorders, 36(2), 136–153. https://doi.org/10.1097/2FTLD.0000000000000086 O'Bryan, E. L., Regier, H. R., & Strong, K. A. (2023). “I wasn't just sitting there”: Empowering care partners through the Aphasia-Friendly Reading approach. Aphasiology. https://doi.org/10.1080/02687038.2023.2272956 O'Bryan, E. L., & Strong, K. A. (2024). Person-centered stories on the main stage in intervention: Case examples from the My Story Project, Aphasia! This Is Our World, and Aphasia-Friendly Reading. Perspectives of the ASHA Special Interest Groups. https://pubs.asha.org/doi/10.1044/2024_PERSP-23-00272 Regier, H. (2021). A Decade of Aphasia Therapy: Aphasia-Friendly Reading: A Technique for Oral Communication. Independently published Available on Amazon Strong, K. A. & Shadden, B. B. (2020). Stories at the Heart of Life Participation: Both the Telling and Listening Matter. Chapter 5. In A. L. Holland & R. J. Elman (Eds.) Neurogenic communication disorders and the Life Participation Approach: The social imperative in supporting individuals and families (pp. 105-130) Plural Publishing. Strong, K. A & Shadden, B. B. (2020). The power of story in identity renegotiation: Clinical approaches to supporting persons living with aphasia. ASHA Perspectives, SIG 2, 5, 371-383. https://pubs.asha.org/doi/pdf/10.1044/2019_PERSP-19-00145 Youmans, G., Holland, A., Munoz, M. L., & Bourgeois, M. (2005). Script training and automaticity in two individuals with aphasia. Aphasiology, 19(3/4/5), 435–450. https://doi.org/10.1080/02687030444000877

In this week's episode, we speak with Dr John Pierce from the Centre for Research Excellence in Aphasia Rehabilitation and Recovery at La Trobe University. He discusses what multi-modal treatment is, how it can be used as an aphasia treatment, and how it is being adapted for telepractice. Resources: Aphasia Therapy Finder: https://aphasiatherapyfinder.com/therapyprofile/20 Aphasia CRE: https://www.latrobe.edu.au/research/centres/health/aphasia Information on M-MAT Tele: https://www.mmat.rehab | https://www.latrobe.edu.au/research/centres/health/aphasia/research/technology Dr John Pierce: https://johnepierce.github.io AI images: https://johnepierce.github.io/AI_images.html Pierce, J. E., Hill, A. J., Wong, D., Pitt, R., & Rose, M. L. (2024). Adapting a group-based, multimodal aphasia treatment for telehealth – co-design of M-MAT Tele. Disability and Rehabilitation: Assistive Technology, 1–8. https://doi.org/10.1080/17483107.2024.2366423 Pierce, J. E., OHalloran, R., Togher, L., Nickels, L., Copland, D., Godecke, E., … Rose, M. L. (2023). Acceptability, feasibility and preliminary efficacy of low-moderate intensity Constraint Induced Aphasia Therapy and Multi-Modality Aphasia Therapy in chronic aphasia after stroke. Topics in Stroke Rehabilitation, 31(1), 44–56. https://doi.org/10.1080/10749357.2023.2196765 Rose, M. L., Nickels, L., Copland, D., Togher, L., Godecke, E., Meinzer, M., Rai, T., Cadilhac, D. A., Kim, J., Hurley, M., Foster, A., Carragher, M., Wilcox, C., Pierce, J. E., & Steel, G. (2022). Results of the COMPARE trial of Constraint-induced or Multimodality Aphasia Therapy compared with usual care in chronic post-stroke aphasia. Journal of Neurology, Neurosurgery & Psychiatry, 93(6), 573–581. https://doi.org/10.1136/jnnp-2021-328422 Speech Pathology Australia acknowledge the Traditional Custodians of lands, seas and waters throughout Australia, and pay respect to Elders past and present. We recognise that the health and social and emotional wellbeing of Aboriginal and Torres Strait Islander peoples are grounded in continued connection to culture, country, language and community and acknowledge that sovereignty was never ceded. Free access to transcripts for podcast episodes are available via the SPA Learning Hub (https://learninghub.speechpathologyaustralia.org.au/), you will need to sign in or create an account. For more information, please see our Bio or for further enquiries email speakuppodcast@speechpathologyaustralia.org.au Disclaimer: © (2024) The Speech Pathology Association of Australia Limited. All rights reserved. Important Notice, Please read: The views expressed in this presentation and reproduced in these materials are not necessarily the views of, or endorsed by, The Speech Pathology Association of Australia Limited (“the Association”). The Association makes no warranty or representation in relation to the content, currency or accuracy of any of the materials comprised in this recording. The Association expressly disclaims any and all liability (including liability for negligence) in respect of use of these materials and the information contained within them. The Association recommends you seek independent professional advice prior to making any decision involving matters outlined in this recording including in any of the materials referred to or otherwise incorporated into this recording. Except as otherwise stated, copyright and all other intellectual property rights comprised in the presentation and these materials, remain the exclusive property of the Association. Except with the Association's prior written approval you must not, in whole or part, reproduce, modify, adapt, distribute, publish or electronically communicate (including by online means) this recording or any of these materials.

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 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 Elissa Larkin about her work to increase communication access within her hospital system via communication partner training programs and her dual role as a speech-language pathologist and bioethicist. Guest info Elissa Larkin, M.S., CCC-SLP, HEC-C is a Bioethicist and Research Speech-Language Pathologist at the Center for Aphasia Research and Treatment at Shirley Ryan AbilityLab. Elissa earned her Master of Science in Communication Disorders with bilingual certification (Spanish) at Arizona State University and completed advanced training in bioethics at Northwestern Medicine Center for Bioethics and Medical Humanities, subsequently earning national certification as a Healthcare Ethics Consultant. Elissa's areas of professional focus include applications of ethical frameworks to promote patient rights and shared-decision making in rehabilitation practice, Life Participation Approach to Aphasia-centered research and treatment, and interprofessional education models to increase communication access and equity for all patients. Elissa received the 2023 American Speech-Language-Hearing Association Louis M. DiCarlo Award for Recent Clinical Achievement for her work in communication access education and advocacy.   Listener Take-aways In today's episode you will: Understand the theory behind implementing communication access strategies at the institutional level in a variety of practice settings. Learn about some techniques to effectively teach supported communication to colleagues from different disciplines. Describe the impact on patients and rehab professionals of communication access.   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 Elissa Larkin.   Elissa is a bioethicist, certified healthcare bioethics consultant, and research speech language pathologist at the Center for Aphasia Research and Treatment at Shirley Ryan AbilityLab. She's also certified as a bilingual English/Spanish SLP. Her areas of professional focus include applications of ethical frameworks to promote patient rights and shared decision-making in rehabilitation practice, Life Participation Approach to Aphasia-centered research and treatment, and interprofessional education models to increase communication access and equity for all patients. Elissa received the 2023 American Speech Language Hearing Association Louis M. DeCarlo award for recent clinical achievement for her work in communication access education and advocacy.   Elissa, I am so glad to be talking to you today. I'm really excited for this conversation.   Elissa Larkin Thank you so much. Lyssa, I'm very excited too.   Lyssa Rome  I thought we could start by having you introduce yourself a little bit more.   Elissa Larkin Okay, sure, as you said, my name is Elissa Larkin. My pronouns are she/her/hers. In terms of positionality, I am a white, cisgender, middle aged woman, and before we really jump in, I also want to acknowledge and describe the context I work in—as a very resourced research and rehabilitation hospital. I want to explicitly recognize that because a number of things I'll share were made possible by very generous mentors and institutional resources that I know are unique and not necessarily available everywhere. I'll try to offer examples from my experiences, and really hope there will be things people can pick and choose pieces from that may fit where they practice.   Lyssa Rome   Yeah, and having spoken with you about this, I think that there are things that clinicians in a variety of contexts will be able to take away. So you have this really interesting background in bioethics. It's unusual for people in our field, and I'm curious, how did you get there? Why did you decide to do that bioethics training, and how has that informed your practice?   Elissa Larkin    Thank you. What a wonderful question to start with, and I'm grateful for the way that path unfolded. In my clinical practice, as an SLP, I think it was often issues of justice that motivated me the most, alongside my patients and families. We have a very active and engaged ethics department within our hospital, and so I got to partner with the ethicists at times on cases where there were issues that arose for some of my patients with communication disabilities. I was fascinated by how the process worked and how much patient rights and preferences were really centered very genuinely.   At some point, I had the opportunity to do more training in a program that was designed for practicing clinicians—it was like, part time, over two years—arose, and I jumped at it. It was a wonderful grounding, kind of a broad overview and foundation of bioethics, principles and philosophies, theories, frameworks. And I felt like with each reading and class, honestly, Lyssa, I just there would be aha moments where it was like, ”Oh, there's a name for that thing that I've been experiencing.” Or, “Oh, this method of approaching a really complex, gray situation really helps make sense of it and gives you more of a place to start.” I think sometimes in clinical practice, we can feel really swept up in all of these complex things happening. And we want to do something, but it's hard to know where to start or how to even make sense of everything that's going on. I just felt like the clinically oriented ethics training program really helped me with that. And then the more I studied it, the more I wanted to do something with it.   It happened that when I finished the program, the ethics department within my hospital had someone retire from a part-time position, and so I threw my hat in the ring for that, and they hired me for the part time role. They took me on, basically, and provided me kind with an on-the-job fellowship for more of the clinical bioethics practice. And it's just been a really meaningful learning process.   Another piece I think that is important for me is that the program, the Donnelly ethics program here, was founded in 1995 by a physical medicine and rehab physician who's also a disability rights advocate. That very much informed the shape of the program and just how it was embedded in our hospital system, how it operates, and certainly how I was then trained. And so it just really aligned with my own philosophy as an SLP, and there's just been a lot of dovetailing.   As I said, the bioethicists on the team before I joined, none of them were speech pathologists. One has a legal background. There was a neuropsychologist, and then a PhD bioethicist, more academically trained. But they would partner with primary SLPs when the patient needed communication accommodations. Once I came onto the team, there was also a lot of openness. They really embraced my expertise, and I've gotten to work on most of the cases where a patient needs communication accommodations. And they've also really embraced learning these strategies themselves, implementing them. None of my colleagues go to consults now without a clipboard and a Sharpie.   Lyssa Rome Wow, which is just living the dream.   Elissa Larkin  Yeah, they're doing it. You know, they're really embracing it.   Lyssa Rome    You've talked just now about how communication access is a part of the ethics work that you do, right? And it's part of what you think about as a bioethicist. And so I'm wondering how that ties into the work that you've done in trying to broaden access within your hospital system, and maybe you could talk a little bit about what you have done to broaden that access?   Elissa Larkin     Sure. Yeah, so communication partner training has become really central to my practice, and this is a place where I think mentorship is a really important part of my story. I work in the Center for Aphasia Research and Treatment. Leora Cherney is the director of the center, and she has been a mentor to me since before I joined the center, when I was a full-time clinician on the floor. She's someone who makes herself very available to SLPs throughout the organization, and so she provided guidance and support when I was learning about communication partner training and wanting to figure out a way to address things more broadly, as you said.   I think for a long time we have been giving our colleagues fish. You know, it's like we share a patient who has communication needs, and they ask us for advice and modeling to accommodate that one patient's needs. And we do that, and it helps that one patient.   And at some point I realized I wanted to teach people to fish. And so I started thinking about how to do that, and I sort of had this incremental from sort of like mini shoestring projects with a colleague on the floor. We both went to a Supported Communication for Adults with Aphasia, presentation that our colleague, Edie Babbitt, also a generous mentor, gave for our institution as a course. She had gone to the Aphasia Institute and done the Train the Trainer certification. And my colleague and I walked out of there and said, we have to do something like this on the floor. We have to do it more than how we're just doing it in a mini way, within the one hour we get for family education before someone discharges. We need to do something more dedicated.   So my colleague Julie Carpenter and I developed this one-hour training for patients and their care partners, family, friends, whoever could come. We offered a full hour just focused on that, and that sort of began my process. Once we had success with that. We could, I mean, you could see the care partners learning to fish. I wanted to learn more. I wanted to learn how to do it better. I wanted to learn what was behind these trainings in theory. And so I asked for support from the hospital to also go and do the Train the Trainer certification at the Aphasia Institute. And they said, “Yes, as long as in return, we'll ask you to also do a webinar for us.”   My grandmother was a career middle school teacher for over 30 years. She always said, “The best way to learn something is to teach someone else.” So I think the combination of preparing and delivering that webinar and going to the Aphasia Institute and learning just what I was looking for: the theory that was behind things, what they've learned over time, really from experts, and learning their system, helped really grow my knowledge and skills and sort of overall mindset of how to tackle this problem, this big problem, and maybe a bigger way take a little bigger chip out of it.   One of the things that in that Train the Trainer experience that really struck me was they challenged all of us to think about the communication environments where we practice and the systems they're in, and look for opportunities to embed communication partner training. And for me, when I did that, I thought about our clinical ladders program, or professional development structure. You know that clinicians kind of enroll in and take these different electives to grow their skills, but it's in this sort of structured, supported way within the hospital.   We already had a champion model, which is an implementation science model, a way of spreading knowledge and skills more broadly, sort of clinician-to-clinician. And I thought, what if we could have a champion program for communication strategies or communication accommodations? And I started working on that. And again, I went to Leora, who was very supportive and helped me think through how to structure it, and we pitched it as a pilot. In 2017 Edie Babbitt also mentored me in that program. We sort of thought through a curriculum of, how could I try to take what I learned from the smaller communication trainings I'd done and do it in a broader way and over more time.   So it's a year-long program for rehabilitation clinicians, and it started with four clinicians, a small group, but we had all allied health disciplines, represented SLPs, OT, PT, and all levels of care within our organization. We had two inpatient clinicians, an outpatient clinician, and someone from our day rehab program.   Throughout the pilot, the things that I really tried to center in the curriculum were practice—hands-on practice—opportunities to reflect: How did that go? What might you do differently? You know, we video record it, watched video recordings, discussed. And then also, opportunities for clinicians to apply it in their own practice and reflect on that too.   So, you know, the idea was kind of, I did the initial Supported Conversation for Adults with Aphasia training in the beginning, and that was sort of foundational. And then each time there were two months or so in between meetings, and their job was to take what they learned in the meeting and go put it in a practice with their patients. And they kept a log of just like once every couple of weeks, one example where they used communication accommodations with patients. And how did it go? What was the clinical context? What did you do? How'd it go? And that was the fuel for the discussion to start the next meeting off, we'd all come back and share. I borrowed a phrase from a community member with aphasia who runs his own community group. He always starts with thorns and roses. And so that's what we would do in Communication Champions. You know, “What's been challenging and what's going well?” And then also we would problem solve together. If someone brought a challenge and said, “I could really use help,” we would talk about it.   For me, something that was really rich about the experience was I learned a lot too, of course, especially from hearing how clinicians in other disciplines would tackle the problem. Once they have foundational knowledge, sometimes they approach something differently than I would as an SLP, in a way that I thought, “Oh, yeah, I think that'll work better. That totally makes sense.”   We all learned a lot through that part of the process. So I think the program gives that foundational knowledge. They put it into practice. Halfway through, their job changes to focus on mentoring others. So they do a case study presentation to all their teammates, and kind of launch themselves as a Communication Champion. So they're presenting about a patient, hopefully the whole team kind of knows, so it's really relevant and engaging, is the idea. And they emphasize the communication accommodations they used in clinical practice and the impact that it had. And then they tell their teammates, “I'm in this program, I'm learning these skills, and I can be a resource for you.”   And then the program really ends in helping the trainees get to a point where they're then thinking more broadly. We go from the examples of communication accommodations for patients with aphasia to other diagnoses, because people are in the program from all over the organization, we're working with very different patient populations, sometimes so accommodations for a person with locked in syndrome, accommodations for someone on a vent, all the different varieties, cognitive-communication accommodations, and then they think about the communication environment where they practice.   There's a wonderful article by Robin O'Halloran and colleagues from 2012. It's a metasynthesis of surveys done of various stakeholders, including patients with aphasia in an acute care setting and providers, as well as family members I believe, and collecting their input on communication facilitators and barriers. And then, you know, they came up with these six different categories. And so we read the article, and then the champions look at the environment where they work, because we know it can vary a lot across just one organization, which says a lot about how varied our patients' experiences can be, as well. And they break it down, what are the facilitators in my environment? What are barriers? And then we talk about it—is there any low hanging fruit? Are there any barriers that you could address that would be pretty easy to remedy, and are there any that would be really impactful to address?   And some of those trainees actually have gone on to do a project to address some of those barriers. We added a Communication Champions level two, where once you complete the program, if somebody wants to do basically an independent project, they can request support. And, you know, I provide mentorship if needed, I just support them however I can. And there have been some really neat things that have come out of that, too.   Lyssa Rome It's amazing. It sounds like you've developed a really rich program, and I'm curious about how it's been received, what kind of feedback you've gotten from the people that you've trained in the hospital.   Elissa Larkin Thank you. Yeah, every cohort I end with direct feedback from the trainees about the program, all aspects: “What went well? What could be better? Anything else we should add?” And one thing that consistently people have said is that the practice is really valuable. We have actually partnered with community members with aphasia. I've neglected to mention this is all over Zoom at this point, which makes it accessible for people from all parts of the hospital and for our community members.   So the practice, rather than role plays with each other, our community members with aphasia, Zoom in and have conversations and give direct feedback. “You did a good job speaking slowly.” “Could you write more for me?” Things like that. And the clinicians have said that is not only really helpful, it helps them build confidence, and it feels really meaningful. And the community members have been so generous with their time, and they have also said they feel like not only is it fun for them, they also find it meaningful to feel like they're training clinicians who are going to work with other people with communication disabilities and maybe make things more accessible for them. So that's been, I think, a really important part of the program, and I'm so thankful that our community members are always up for being a part of it and giving their time that way and expertise for that matter.   Lyssa Rome    What about other examples of how this has played out for the people who you've trained?   Elissa Larkin  Yeah, I have to say, clinicians have shared some really powerful examples of what this has changed in their practice, and some of them might seem kind of simple like I had an occupational therapist inpatient who worked on a primarily neuro rehab unit, mainly with stroke survivors. She told me about this bathing session that she had with a patient with aphasia, and she was so excited to show me all the communication supports that she had created ahead of time, to walk the patient through what to expect, what the steps were, what her expectations were, to leave room for questions, all ahead of time. And then she said they had this extremely successful session.   I said, “What made it so successful? What did that look like for you?” And she said, “Well, the patient did what I knew she could do. The communication didn't get in the way. It felt really accurate. And it was an important piece of her getting ready to go home, which was also really important to this individual. And so that, to me, was really meaningful.”   I've actually had some prosthetist orthotists join the program as well. So, you know, they're making braces for patients and other kinds of things, and they have had some great stories about just really getting it right. One clinician said that he was working with this patient with aphasia, and he was writing all these options down, and he brought all these examples to show her, and he said she was really particular. She was a very put-together person, and she ended up choosing this, like, hot pink brace. And when he confirmed, like, “This is what you want?” She was just all lit up like, “Yes, this is exactly what I want!” You know, that is meaningful in his practice. He was so proud and excited to tell me that.   And actually, a couple of other people from the P&O department did the program last year, and this year, they're working on making the documents that they use in their department more accessible. So they've taken this on. Their manager totally is supporting it, and I'm kind of just supporting them. So to me, those are the signs that make me feel really hopeful, that the champion part of it is working. You know, I wouldn't even know that those barriers are there. That's not my field of practice, and for them to not only identify these issues, but start to feel like they can address them and improve things for their patients, and then have examples where it works. It's just been really exciting and rewarding.   Lyssa Rome It's amazing to think about, sort of the ripples out from the work that you're doing within the hospital, and then also, ultimately, to patients and people who are in very vulnerable… I mean, you give the OT example choosing a brace, those experiences are so central for patients, and to be able to have such a broad impact by training people from so many different departments is really amazing.   Elissa Larkin    Thank you. And you know, just listening to how you put that, it made me think about again, some of the ethics terms that now bubble up for me are dignity. There was so much dignity preserved there and even uplifted for that patient during her bathing session. The personhood.  The autonomy. And getting your brace exactly how you want it—if you're going to wear this every day, that's a big deal. I think, to be seen, to feel like you can advocate for yourself and your own care, because you're working with a provider who knows how to accommodate your needs.   I think in our field, there have been leaders who have planted these seeds of talking about communication ramps, really looking at the parallels between physical accommodations and communication accommodations. That's another thing in the Communication Champions program: Clinicians have said, “That really makes sense.”   A PT shared—she practiced in day rehab—and she said, “One day, it just dawned on me that the paper and the marker that is my patient's least restrictive device for communication, right? I would never ask them to walk without their walker. Why am I asking them to have a conversation with me without their tools?” And those are the times where it feels like, “Okay!”   I love that word ripples. I feel like there's a lot of empowerment happening in all directions. That's my hope, that the clinicians feel empowered, that when patients are interacting with providers who have this knowledge and these skills, and it's that the patients feel empowered too. And we know that it's complex. It requires ongoing adaptation. And so I hope that in talking about communication partnership, when clinicians are using the knowledge they have and they're trying, patients can partner with them. That's what we want. That's how we want it to be. You know, we're working for them. And we're working together, hopefully.   Lyssa Rome  Well, as you're describing that, it becomes so clear to me how ethics, how justice, and how access, are so deeply intertwined. So it's really clear that in both the ethics programs, and your work as a bioethicist in your hospital system, and the Communication Champions program, you're implementing those ideas, those sort of foundational values that I also hope are central to my practice. I mean, I think it's definitely something that I aspire to. And it's really impressive to me how you've put them into practice.   Elissa Larkin     Oh, thank you. I aspire to them too. Every day. All of this is nothing if not humbling, which is where we want to operate from anyway. Yeah, I'm thinking of one more little story. It might make me emotional to talk about it.   Lyssa Rome Take your time.   Elissa Larkin Yeah, thank you. It's a happy story. It's just… We have a program in our hospital for patients with locked-in syndrome, who've had brain stem strokes and the majority of whom are totally dependent communicators, mainly communicating with their eye movements, right? And I got to meet a patient with locked-in syndrome somewhat recently, who had a complex situation where he hadn't appointed a power of attorney for finances, and at that point he really needed someone to be able to help with those things.   We were asked to do a capacity assessment to see if he could appoint someone. Normally, we don't actually do financial power of attorney, but this was a disability rights issue. It was like, if we can't do it here, then he's not going to probably have another opportunity where the resources are there to complete it. So I partnered with a neuropsychologist who hadn't worked with people with locked-in syndrome before, but she was very familiar with the assessment process, and we were really careful about how we planned the questions and the structure and the flow to give this person his best shot at demonstrating capacity.   In the beginning, I was doing all of the communication with him and the spelling and the choices. But the neuropsychologist—we met with him three times—and by the third time, she held the board and was asking questions directly and helping spell things out. She actually, at times, I think, had a better angle for his eye movements. And it was just, he was just right on. They were in sync, and he totally demonstrated capacity. He indicated who he wanted, and had very clear rationale.   And so when we told him it was clear and he was going to be able to complete this and our team would help him do this and put it in place, he just let out the biggest sigh. And you know, in terms of communication that said so much. You can imagine all the other ways that could have gone, and what an impact that would have on that individual's life, who absolutely deserves to be able to choose who they want to help was such an important thing. And you know, we thanked him for working so hard to communicate with us and being so patient as we learned his communication system. And then he also had a smile, like he was able to just do this spontaneous smile.   You know, those two pieces of communication were just really meaningful. And after a debriefing with my colleague, she said she felt like she learned so much. She feels empowered to use communication accommodations, to reach out if she's working with someone who has different needs and she isn't sure. And that's how I want it to be. That's what I hope for. I hope everybody in the hospital, at some point, has access to training like this. Our security guards, they totally want to be able to do the same thing, right? Admissions folks. Everybody, wants to get to know our patients, to communicate with them in an equitable way. And I do think that having access to training is the answer, and having it tailored.   Lyssa Rome    What a moving story and how fulfilling that must be—both for the clinicians in other disciplines and SLPs too, I guess, who have learned how to provide access. It makes me wonder, as you think about what you've learned from having done this work, what would you like listeners to take away from having heard about the work that you've been doing?   Elissa Larkin    Well, my first thought is you're probably already doing more than you are giving yourself credit for. I think advocacy is kind of built into our practice in some beautiful ways. And I also think everyone should maybe do that same exercise that the Aphasia Institute folks suggested: thinking about the communication environment where we work, and thinking about the systems that are in place, and where there might be opportunities to offer our expertise.   I think that there have been a number of times where colleagues of mine have been so receptive. And, you know, I think there's a lot of trust already between us, the folks that we work with. And so I think if we can find opportunities to offer communication, accommodation, mentorship.   I also think the other piece that I've learned that is so important is—and this is in literature, too, I just have found it to be very true in practice—is tailoring. I have done communication partner training for our campus security, campus safety team. And I used very different examples for them. I talked to them first about when this comes up, what it looks like. It's got to be relatable. And I think that part of the brilliance of the SCA model and other models too, that include role play, is giving people a chance to put ourselves in the shoes of someone who has a communication disability makes all the difference. Then you get it, “Oh, that was really hard. And if I can make that easier for someone, I want to.” And then you got them. Then they're listening. Then they want those strategies. They want to learn the accommodations.   So I think offering our expertise, tailoring, and I think also, thinking about what scope feels reasonable. I talked about teaching people to fish. I also think giving people fish is really important—don't get me wrong.   I worked with a chaplain team also, and one of the chaplains said to me… I asked him, “Do you have any advice if colleagues of mine want to provide communication training to their spiritual care colleagues?” And he said, “You know, I would start with a shared patient and one chaplain, and then get that person to convince their colleagues to listen. And, you know, maybe you can give them some certain tools, or you could just even meet with them.” But I think all those small steps of bridge-building can be really impactful.   I've been thinking a lot about just disability rights history, and I think communication access is at a certain point in its evolution in terms of awareness. And I think all of us can contribute to raising that. It's going to take time and just a whole lot of us chipping away as we can, growing, learning, along with people with lived experiences, and advocating together.   Lyssa Rome    Well I hate to stop the conversation, but that's a really great note to end on. I just really appreciate your sharing these really powerful stories with us, knowing that, I think clinicians in a really broad variety of clinical settings can take some of this and put it into practice so that we can also bring justice and access to the people that we're working with.   Elissa Larkin    Thank you. I agree.   Lyssa Rome Elissa Larkin, it has been so great to talk with you. Thank you so much for sharing all of this with us.   Elissa Larkin     It's been a pleasure to talk with you, Lyssa. Thank you for the opportunity.   Lyssa Rome  And thanks also to our listeners. For the references and resources mentioned in today's show, please see our show notes. They're available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials, and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access. For Aphasia Access Conversations. I'm Lyssa Rome.   SRAlab Center for Aphasia Research and Treatment link: https://www.sralab.org/research/labs/center-aphasia-research-treatment SRAlab Donnelley Ethics Program link: https://www.sralab.org/services/donnelley-ethics-program Leora Cherney was awarded the 2023 Aphasia Access (inaugural) Sandra O. Glista Mentorship Award (alongside the amazing Robin Pollens) Aphasia Institute Supported Conversation for Adults with Aphasia (SCA) training Dr. O'Halloran's article: O'Halloran, R., Grohn, B., & Worrall, L. (2012). Environmental factors that influence communication for patients with a communication disability in acute hospital stroke units: a qualitative metasynthesis. Archives of physical medicine and rehabilitation, 93(1), S77-S85. Dr. O'Halloran's related tool: https://www.pluralpublishing.com/publications/inpatient-functional-communication-interview-screening-assessment-and-intervention The Communication Environment Survey Tool (CEST) The CEST is Copyrighted. You are welcome to use, copy and distribute the CEST for clinical and/or academic purposes, with the following restrictions: You may not retitle the tool or remove or obscure the SRAlab name or logo, copyright notation or the reference information. You may not state or imply ownership or authorship of the CEST, apply your organization's name or logo to the tool, or charge fees for access to the tool. You may not modify, enhance or otherwise create derivative works of the CEST without the written permission of SRAlab. If you wish to post the CEST on a clinic or academic intranet, please contact our legal counsel at econway@sralab.org for permission to do so.

Welcome to the Aphasia Access, Aphasia Conversations Podcast. I'm Ellen Bernstein Ellis, Director Emeritus of the Aphasia Treatment Program at Cal State East Bay in the Department of Speech, Language and Hearing Sciences, and 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. Brief topic intro I'm today's host for an episode that will feature Dr Felicity Bright. We'll discuss her research looking at factors impacting wellbeing,  engagement and hope. Guest bio   Felicity Bright is a registered speech language therapist and associate professor in rehabilitation at Auckland University of Technology in Aotearoa, New Zealand. Her research examines cultures of care, and in particular, how the cultures and practices in rehabilitation respond to the needs and priorities of patients and those who support them. She has a particular interest in stroke and in the needs and experiences of those with communication impairment through her work, Felicity seeks to support practitioners services and rehabilitation organizations and to provide better person centered care. Listener Take-aways In today's episode you will: Explore how qualitative research promotes the nuanced study of meaningful clinical practice Consider cultural differences in well-being and what this might mean for how we work with people with aphasia and their support networks Reflect on the importance of having discussions with patients about hope and well-being Discuss how culture and organizations impact healthcare practice for individuals with aphasia Show notes edited for conciseness Ellen Bernstein-Ellis Felicity, welcome to our show. Thank you for agreeing to be our guest today. Felicity Bright  Thank you for having me. It's great to be here. Ellen Bernstein-Ellis  Welcome Felicity. We're going to start today with  an icebreaker question. The one you selected for today is, “Do you have  a favorite book or movie about aphasia? Felicity Bright  It was hard to choose one. Actually, I was just looking at my bookshelf and I went back to myself as a fairly new speech and language therapist quite a few years ago now. One that was really transformative for my practice was Talking about Aphasia by Suzie Parr and Sally Bing.  It's a classic, but it was a beautifully written book that really opened my eyes to the experiences of people with aphasia beyond all the technical work that we'd learned in university and so on, but it brought to life the humanity of the people who have aphasia, and really helped me rethink why I do what I do, and what the real impacts of aphasia can be for people. Ellen Bernstein-Ellis  Yes, that's a beautiful book that brings that all to the forefront. And I want you to say the title and author again, in case I spoke over you a moment ago, Felicity Bright The book is Talking about Aphasia and the authors are Susie Parr, Sally Bing and Sue Gilpin with Chris Ireland, Ellen Bernstein-Ellis We'll put that (i.e. citation)  into the reference list on our speaker notes. So thank you. And as we start today's interview, I was wondering if you'd like to share your path from clinician to researcher, because we've had several guests who have started in clinical work and then came to their doctoral work and research a little bit later. So,  I'd love it if you could share that with our listeners. Felicity Bright Sure. So I worked as a speech and language therapist in New Zealand. We are speech language therapists. I worked in a range of neurological settings, from acute stroke neurosurgery, did a little bit of ICU, did some rehab in inpatient services and in community, and really enjoyed that work, but I'd always had a long standing interest in research. I was a bit of a geek, you know, When I was in training, that was, that was me,  I was the geek. And so I'd always kind of expected at some point I would go down the research track. It was prompted after I had my first baby, and my work required me to either go back full time or to not work. And so at that point, I chose to not go back to work full time, and a research job came up at Auckland University of Technology, and I'd followed their work for a while. We don't do speech therapy here, it was rehabilitation research, and I was offered an opportunity to be a research officer doing interventions as part of a randomized control trial with people with traumatic brain injury. And so that kind of gave me the space to bring together some clinical work, but also some research work. It gave me the opportunity to do my Masters alongside this with my fees paid. So that was fantastic. And it really solidified for me that I was quite happy and enjoyed being in that kind of clinical research space. And so I've been in the university now for 15, nearly 16 years Ellen Bernstein-Ellis  Wow, that's a great story. So now you have a 15 year old, right? Felicity Bright I have a 16 year old who is now taller than I am. Ellen Bernstein-Ellis Well, thank you for sharing that.  I'm just really looking forward to a discussion around some, what I consider critical but hard to define and challenging to research topics. like engagement, wellbeing and hope.  I want to start by asking, how did you end up researching a topic like engagement or hope? You did say during our planning meeting that you research things that you're bad at, which made me laugh. So that sounds like some courageous and reflective exploration. So maybe talk a little more about that. Felicity Bright Yeah, I am a bit of a selfish researcher. I research the things that I find tricky and a little bit hard, because for me, I want to learn how can I do better at this? How can I help my students learn how to be better in these areas? How can I help clinicians not make the mistakes that  I've made. I guess trying to be a better clinician has been at the heart of a lot of the work that I do. And you know, when I was working full time in clinical practice, I had patients who would stick with me where I just felt I let them down. They had such a short window of rehabilitation access. They were living with stroke for the rest of their lives. They maybe had eight or 12 weeks of speech therapy. There were just times when I really felt I missed the mark for them, when they didn't get the best rehab they could have had. And it was when I was working in the university in this randomized control trial of goal setting interventions after traumatic brain injury that it started to help me reflect on some of the why I was maybe having some of the challenges I was having. So in this trial, which was quite prescribed because it's a randomized control trial, I was noticing that patients seem to be engaging with these interventions a lot more than the people who I worked with in clinical practice, and that kind of surprised me a little bit. I also noticed that-- we were using Mark Ylvisaker's approach to goal setting around what  is meaningful identity based goal setting--and people were identifying hopes and goals and dreams that would have left me panicking as a speech and language therapist. What do I do about this? But it made me realize, actually, I didn't need to panic about that, and there were ways to engage with people about their hopes and dreams that honored those hopes and dreams, that kept them alive. But also, I could see ways that  I could work with this. I could bring my speech therapy hat and help people. And so it highlighted to me that maybe the things that I had perceived to be difficult or issues, didn't need to be and there were ways to think about these things differently and ways to work differently to better support people. So working on this trial, and I did some quite structured reflection around that with some of my colleagues, writing in auto ethnography around this, gave me the opportunity to reflect on these areas, but also highlighted that there was the real opportunity to do more nuanced and more detailed research that would bring to life different ways that we could support people to hold hope, to engage in rehabilitation that is meaningful and that might be able to produce some quite tangible suggestions to support clinicians and to support the people with stroke who we work with. Ellen Bernstein-Ellis  I just want to say that these intangible, some what we call intangible topics that you've tackled, you always seem to end with tangible suggestions, and that's what I have found so inspiring. And we're going to circle back to hope in a few more questions. But, I just want to say, not only has my clinical thinking been informed and inspired by your research topics, but I've also just learned so much from the variety of qualitative methodologies that you've used in your work. I was wondering if you could share how you developed your expertise in qualitative research, maybe even offer some tips to people wanting to develop their own skill set. And okay, maybe I'm being a little selfish interviewer. You just said selfish researcher, but I found this challenging, and I've been trying to dip my toe, or I've fallen in head first,  trying to develop my skill set around qualitative research. What's your advice?  Felicity Bright  I was really fortunate. I came into research, into a team that had qualitative expertise and that used a variety, but not a wide variety, of different qualitative approaches. And it was a team, and still is a team, that has really high standards for methodological rigor. So to us, it's really important to do research that is robust and rigorous and that anchors back to the underpinning theory and philosophy that underlies each of the approaches that we use. But I was also really lucky in my research that I had supervisors and bosses who really supported innovation, who didn't tell me, no, this is how we do things, who didn't expect me to come into a study and do it just as they had told me to do. But they created the space for me to explore when I was working as a clinical researcher, but also as a master's and as a PhD student. Really had no issues when I said I'm going to go to the library, and I would just sit in the library and read qualitative textbooks and come back with a completely hair brained idea, but that actually turned into something that was really interesting and meaningful. So the Voice Centered Relational Approach that I've used a number of times came from sitting in the library one afternoon and just reading Feminist Research Methodology books. And I think one of my tips would be read outside speech and language therapy. There's amazing work that is happening, not just in the health disciplines or education spaces, but I love reading health sociology journals. I get notifications of a number of different journal types that alert me to different work. One of my recent projects I used Applied Tensions Analysis, which I'd never heard of, but I had a notification come across for a paper about domestic violence settings and kind of how services work. That's not in my area of research or clinical expertise, but there was something within that abstract that made me go, oh, there's an idea there that is similar to the ideas that I'm trying to get at in my stroke research. And so reading widely, I use Twitter a lot as a way of, kind of coming up to date with different research. I use trial and error. I've tried things and got them terribly wrong. I tried Grounded Theory  for about a year for my Masters, and it was atrocious. But also I found that doing research with people with aphasia pushes you to be innovative. A lot of the methodologies as they are published don't necessarily quite fit with the types of interviews or the types of data that we have, and so for me, that's provided an opportunity to test and do things differently. Ellen Bernstein-Ellis I mean, that's an inspiring response and encouraging support. So thank you. During our planning discussion, you also referred me to the Life Thread model and the 2008 article by Ellis Hill, Payne and Ward. What a wonderful article. So thank you for that. I was particularly taken with its implications for clinical practice and how it might guide us in asking questions in a better way to help us understand the social realities of our clients, to prioritize that. To understand how important the social reality is for our clients. Could you please share with our listeners some of the core concepts of the Life Thread model and how it's informed your work? Because I do see the connection there. Felicity Bright  Yeah, I came across this, Carolyn Alice Hill, who developed it, I think, as part of her PhD, was a collaborator of one of my PhD supervisors, and so Cath put me onto it. But the Life Threads model is about identity. And Carolyn's work was in stroke, and she was kind of talking to how identity changes and develops over time. And the Life Threads model talks to how our lives and our identities are made up of many threads, and those threads, they can change over time. But when there's a traumatic event like a stroke, it can cause some threads to break or be frayed, and that can be really challenging. We know there's a lot of work around aphasia and identity construction and identity loss, that's come around. But also what we know is that stroke can also prompt people to think about what are the threads that they want to continue post stroke.  Maybe there are some threads, I found in my hope research, where people are saying,”I don't want to be that person anymore. That's not something that I value”, and for them, sometimes the stroke could be an opportunity to rethink what are the threads that I now want to bring into my life as I weave this new identity of somebody post stroke, but still continues threads that have come through from before the stroke. We know from the hope research that I was doing that it was often really hard for people to see these threads.  It kind of felt like there was a pre-stroke life and a post-stroke life, and that there was quite a disruption. Those threads were cut. And so for me, it prompted questions about how do our conversations as clinicians help people identify the threads that are important for them to thread through their life. What are the new threads that they want to pick up on? You know, some of the work I've done, and we will talk about this a bit later on, around life after stroke, has highlighted how actually a lot of the conversations that happen between clinicians focus around things like tasks and activities and doing things, but there isn't necessarily a lot of conversation about identity or about what is meaningful and what do people want to carry through, and how can clinicians support that? And I would say that if we can kind of tune into the threads that matter to people or that people want to matter in their lives, it gives us a chance to tailor therapy to be much more personalized, more meaningful and more engaging, and I would suggest, probably leads to better outcomes for people. What we know from quite a bit of the research, not just my research, but other work, is that people are often doing this identity work on their own, without support. And we know that it's really hard, because our identities are social and they're relational, and they occur through connection and through communication, all of these things that are disrupted by aphasia, often. And so I think the Life Threads model really prompts us to think how can we as clinicians, support people to engage in conversations about identity, and how can we overtly, really attend to supporting identity within the work that we do. Ellen Bernstein-Ellis  Wow, that's beautiful. And yes, I think there's been, fortunately, a growing understanding of the importance of looking at the lack of support for this identity work with us with our clients, and I can really see how the Life Threads model has played an important role in your thinking and research. I recommend our readers to the article because it has some great examples of how to maybe flex the way you ask questions to help understand the narrative better. So I think it's, a marvelous article, I just want to take a moment and let our listeners know about the fabulous interview that you did with Michael Biel on the ANCDS podcast where you discussed engagement and ways you might incorporate Goal Attainment Scaling to help our clients establish meaningful goals.  I'll put the link to that, along with the citations to all of the work we're discussing today in our show notes. That also gives me a chance to say I don't have to cover everything today, because he did a really good job on those topics. But at the end of that podcast with Michael, you highlighted what was coming next, and that was your work on wellbeing. You've been exploring, and this is a quote by you, “what does it look like to explicitly attend to holistic, long term wellbeing?” Can you discuss some of the takeaways from your 2024 article, Psychosocial Well being After Stroke in Aotearoa, New Zealand, a Qualitative Meta-synthesis with your co authors, Ibell-Roberts and Wilson. Maybe we can just start by talking about the term psychosocial wellbeing. That's an important one to understand, but it can vary depending on one's cultural context.  Just to start with that, so yeah, good luck with all of that! Felicity Bright  It's a massive question, and it's funny, I started with the term psychosocial wellbeing, and I really intentionally used the language of psychosocial to kind of move away from thinking about just psychological wellbeing, which tended to be framed more from a mood perspective. And so I really wanted to be attending to some of the emotional, and the social, and the relational elements of wellbeing. But actually, I've now dropped the psychosocial because what we found is, when we talk to our people with stroke in the community, as part of our research, that term is completely meaningless to them, but the term wellbeing is something that resonates. Wellbeing is a really, firstly, a really nebulous term, but it's also really multifaceted. And I guess the place we've come to is, we view wellbeing as kind of quite unique to an individual, but it's deeply relational, and it's influenced through connection with people, with their cultures and with their communities, and all of those areas need attention. Now, in this piece of work that you referred to, Qualitative Metasynthesis, we were looking across the literature in Aotearoa, New Zealand, when we look at all the work that's been done, looking at life after stroke, and living life after stroke, what do people say about wellbeing and that highlighted that there were a number of features. Now, one thing I want to flag is that within New Zealand, we have an indigenous population, the  Māori population of New Zealand, who have been here for centuries before Pakeha came and colonized New Zealand. And one of the things that's been really important in our work is to really make sure that we are upholding the voices of Māori, who are often either not included in research, or are involved in research that is not particularly culturally safe, or where their perspectives are kind of subsumed within the wider perspectives of the dominant Pakeha, or European culture. And so one of the things we've been really lucky to do with this is to have my colleague BJ Wilson, who was leading the Māori stream, so she engaged with our  Māori data and literature uniquely. So we upheld that in its own right. That's context, because I'm going to talk to two different ways of thinking about wellbeing, one that was general from all of the literature and one that was specific to Māori . So when we look across all of the New Zealand literature, including the  Māori literature, we kind of saw there were probably four key areas that seemed to matter for wellbeing. Having strong connections with family, with old, pre stroke friends, but also with new friends, people who had also been through stroke and had some similar experiences. The sense of self that was connected, where people had a sense of being connected to who they were before the stroke, who they are now, and have an idea of who do I want to be in the future? And there was a sense of coherence, sense of thread that went between those identities. There was, when they experienced wellbeing,  a general sense of stability in the present. So things were okay now. It didn't mean that things were perfect. Some of the literature has suggested that people have to have positive emotions if they're going to have a sense of wellbeing. But actually, this qualitative meta synthesis, and the following qualitative work we've done has suggested, no, life is never 100% positive for any of us, but it's about having a balance of, yes, maybe there are some hard times, but also there are some good times as well.  That overall, there's an equilibrium of emotions, Ellen Bernstein-Ellis  Right the duality, like be able to hold the duality Felicity Bright  Absolutely and kind of be okay with it, recognize that each of them has a time and a place. People also, when there was a sense of wellbeing, had a vision for the future, kind of a sense of moving towards that. So, yes,  they were okay in the present, but they also had a sense that the present is not my future for the rest of my life. I can see a life that is meaningful and enjoyable, and I'm taking steps towards it. But when we looked at the literature from Māori, and this was the analysis led by my colleague, Bobby-Jo, it also came through ideas like whanaungatanga and ngā hono. So whanaungatanga talks to the notion of connections, and ngā hono talks to connections and kind of belonging as well. And that was a sense of connection to whānau. So that is to people's wider kinship networks, not just blood relations like a family would be, but to kinship networks who are meaningful to the person. Having a sense of connection and belonging in their community, but also to places of meaning. So not just people, but to places. We also notice an idea around ko ahau, so being connected to their identity as Māori, to their cultural identity, in a sense that their cultural identity was recognized and was valued and supported by those around them, including healthcare professionals. Ideas of mana and wairua. So mana talks to the inherent standing and value that an individual has. And we all know that in a healthcare context, actually, that can be diminished because you become a patient in the healthcare context. But actually, for wellbeing, having that mana recognized and valued and upheld was really critical. And when one's personhood is understood and respected, that also helped with the sense of wairua, I guess, the spiritual essence of the person. And finally, was the notion of rangatiratanga, which is about autonomy and control and the ability to make decisions for oneself.  We can see that while there were similarities between our  Māori and our non-Māori groups, there were also cultural differences. So for wellbeing, for Māori, had wider integrations with their sense of whānau, their family and kinship networks, and for their culture and wellbeing was unique for each whānau within the research. Ellen Bernstein-Ellis  I'd like to take a moment and have you elaborate a little bit more on that concept of the relationship of whānau to wellbeing, and how the whānau may be impacted by the stroke and subsequent aphasia. So often our family and support network does not receive direct attention. And here, you're elevating it quite a bit, so maybe you could speak to that a bit more. This is really top of mind for me, because I just went to a think tank meeting and hearing the stories of the care providers saying, I'm not sure I mattered in this equation of my spouse's health care rehabilitation.It just really struck me to hear that. So please, let's talk a little bit more about those values. Felicity Bright  Yeah, absolutely, for all of the people in our wellbeing research and in the previous hope research and so on that I've done, kind of people's whānau, their family and their social connections were absolutely critical to their recovery. And what came through, when we were looking at Māori experiences, was particularly also the intergenerational aspect, like sometimes within stroke services, we might think about the partner a little bit, not always particularly well. And I'll talk to that in a minute. But actually, we could also hear within our  Māori whānau, kind of the impacts for generations above and generations below, like the disruption to relationships between grandparents and grandchildren, and how the grandparent who may have aphasia, would usually have a really critical role in passing on family knowledge, or passing on Matauranga, kind of Māori cultural knowledge. But actually, because of the way the stroke affected them, they couldn't do that and take that role on, and so that impacted not just on the relationship, but also kind of on the identity and how Māori culture could be passed on through a whānau unit. But we've also heard exactly what you talk about. Our services are focused around the person with stroke rather than their whānau, but our services are also really short term. And so what  we can see from the research is that the family and the whānau become the connectors and the supporters. They are the consistent people. They hold, usually, deep knowledge of the person that often the healthcare professional doesn't hold. And we're doing some work at the moment around communication access in stroke units.  And even in the context of really significant aphasia, we're hearing about how whānau, even though they don't know about aphasia, they don't know about communication strategies.  But because they know how to read the person, they know their non verbal communication, they are actually really powerful translators, and hold the expertise that, actually, we don't hold as Speech and Language Therapists.  But we also know that the whānau are key in helping people access supports outside the healthcare system, and they do a lot of that navigation work that they are left to do because the healthcare system doesn't do it very well. And like you say, that's really challenging when the whānau's well-being is impacted themselves, you know, but that isn't seen consistently, and it isn't acknowledged. They very quickly become the carer, rather than, this is this person's wife and they've been married for 45 years. Or this is this person's husband, and they've got three young children at home. What is this going to mean for their relationship as a couple, for their relationship as parents? And so the families are talking to us about the exhaustion and the grief and the shock and the loss.  The relief that the person is alive, but again, the duality, there is relief, but there is also distress from the way that the stroke is impacting. And so we would really be calling for much more focus on everybody's wellbeing in this context, because if the wellbeing of whānau is not there, that impacts also on the wellbeing of the person. And I think we need to be shifting how we think about who is our client, whose needs do we serve, and what is our role in supporting the social and relational context around the person Ellen Bernstein-Ellis  That's beautiful. You really highlighted that role, the role of the whānau. And you also identify, Felicity, some other key contributors to wellbeing, and then how those might really impact our clinical goal setting, and I know that's always such an important aspect of how we think as clinicians. You have to document because we're in a system, which we'll talk about. Maybe you can share some other factors that you identified. Felicity Bright  Yeah, so I would be encouraging people to think about what are all the things that seem to support people's long term wellbeing? And those are things, like the relationships they hold within their family, but also within their social networks and within their work networks and so on, Thinking about the different emotions that people might be experiencing. Thinking about hope and what supports people to hold hope, and what do people hope for. Think about the connections that matter to people, the connections to people.  The cultural things that matter for people's wellbeing.  The connections to community activities and roles and so on. And think about the things that matter and are meaningful for individuals that usually fall outside our traditional SMART goals that we use in New Zealand, you know? Is it smart, specific, measurable, achievable, realistic, time bound? What is it? I would be saying our goal should be focusing on what makes a good life for this person. And I would be encouraging you, if you're a clinician, looking at the goals that you're setting for the person.  Where is the good life in those goals? Is that up front and center and documented on the page that everyone can see it? That's something I learned through my goal setting research. That was my first research job, the importance of taking people's words, putting their words on a page, and keeping the words where everybody could see it. So where are the things that support wellbeing and that constitute a good life in our goal setting? Where are they in the interventions that we're doing? And I would be really encouraging people to reflect on how they are making the links explicit between the therapeutic tasks and the things that really matter to people. Because we know from the engagement work that when people can see the link between what they're doing in therapy and what matters to them in life, it is much more likely to be engaging and is much more likely to support them to persist, even when it's difficult, because they can understand this is why I'm doing this thing. Ellen Bernstein-Ellis  Right? Oh, that's beautiful. That really leads nicely into another 2024 article that you've put out focused on wellbeing.  And that's The physical wellbeing is our top priority: Healthcare professionals' challenges in supporting psychosocial wellbeing and stroke services. That article examines what seems to be a mismatch between knowing as clinicians that wellbeing is important, right, and being able to specifically address it within our clinical context. So, we say that we want to, and we know it's important, but the ability to get there, it's quite challenging. I was wondering if you could highlight some of your findings and key recommendations. And I think one of those actually addresses the graduate curriculum. I think that is really going back to the beginning, right? So, please share some of the wonderful work from that article. Felicity Bright So the context for this work is, this is part of a bigger program of research I'm doing around wellbeing after stroke. And this isn't specific to people with aphasia, but we do have people with aphasia in the research.  This research came from this issue-- we've got decades of literature that says that wellbeing is important. We've got a body of literature that says clinicians know wellbeing is important, but we are persistently not addressing wellbeing, and we've got decades of patient experience data that says this is an unmet need. So I was really interested in understanding, why have we got this persistent mismatch between what is known what matters and what is done, and so using an approach called institutional ethnography to try and get into the cultures and the structures that contribute to this, the rationale behind that is I didn't want to be creating solutions that were going to be completely unattainable in the healthcare context. And so I wanted to understand what's going on in the structure of the healthcare system, and how might we be able to work with that or push against that, to create different ways of thinking about how we work to deal with this persistent issue. So this project, this part of the research, we were looking at, why are clinicians not seeming to address wellbeing? And so we interviewed over 30 clinicians, I think, within this research for a whole range of healthcare disciplines. What came through really consistently was everybody wanted to support wellbeing. Everybody thought it was important, but there were a number of factors that made it difficult, and we traced as to why that was so. Firstly, we can look back to when the person first comes into the service. They come into the emergency department. There's often a code stroke that's called. It's a time of really busy early biomedical focus around investigating the stroke, doing assessments. The first couple of days are about intervening to prevent another stroke or to prevent complications. And dysphagia assessment is a classic in New Zealand. Dysphagia assessment is usually prioritized over communication assessment because it is seen to have particular risks and contribute to particular complications. And so we've got this really early biomedical focus as people come through the first few days. Then the focus shifts a little bit to assessments and treating impairment in function. And when we were interviewing clinicians, they were talking about wanting to give people the best chance of recovery, and that linked to ideas around neuroplasticity and the importance of early intervention for maximizing neuroplasticity and brain remodeling. There was a real focus on addressing the practicalities like toileting and dressing and what was needed to get people home. And there was a view often that emotions could wait. We need to do the practicalities first. We can do the other stuff later. This was a time of focusing on helping people survive, get through and get home, and it was in the context of really busy wards.  You know, sitting and watching nurses work, they are flat out. They are understaffed, and they have very limited time to be doing these aspects of work. But all of this contributes in this wider healthcare system that in New Zealand, and I suspect internationally, is short staffed, underfunded. We've got more demand than we've got beds. There is a really strong focus on getting people home. Now that's not inherently bad. A lot of our people that we speak to want to be home. Home is a more healing environment for many people than being in hospital. But when the focus is on getting people home, and that is usually about, is the person physically safe to be home, what can happen is other forms of work and other impacts of stroke can be devalued or be forgotten. And what we could see is people were doing work to support wellbeing within this, but it was kind of a particular form of wellbeing work. They would acknowledge a person's emotions, if they came up through interactions.  They would be responding to the emotional cues that people gave off that they were maybe feeling a bit uncertain or a bit upset. They talked about the importance of listening to the person, but that was often couched in a ‘I can listen for so long, but then I need to get on with my session', because the assessment, the treatment, the moving people forward wasn't important, and they would look to others to help. But the problem is, I would say this, this did a really good job of dealing with the tip of the iceberg, the emotions that were on the surface. But if we think back to what I've just said about what matters for wellbeing,  relationships, connection, sense of self, hope, those things are not addressed. What we saw was that wellbeing was other to the core work of any individual discipline. That didn't work for anybody. Didn't work for our patients that we spoke to. It didn't work for our clinicians as well, because we could also see the moral injury and the burnout that comes when you can't offer the services that you know people are wanting and needing. And when we think about what do we do about that? Well, yeah, it's tricky, and I don't have any great answers, but training and education is one thing. So when we think about wellbeing as seen as other to the core business of the disciplines, we need to look at, what is it that we're teaching our students? What are we saying is core work of speech therapy or of physiotherapy or of nursing. I've got the privilege of chairing the accreditation body for speech therapy in New Zealand, and we are rewriting our accreditation framework at the moment that essentially dictates what programs need to teach. We now have a requirement that programs are teaching about psychosocial wellbeing, and that programs are assessing students on how they're addressing psychosocial wellbeing. We need to look at how pathways for care develop, and where is wellbeing within policies, processes, structures, documentation, Basically, it's nowhere. But we also need to look structurally, and we can talk a little bit more about structures and organizations and cultures, because I think what this work reflects is a wider issue around the cultures and the organization of care that can make it really challenging for clinicians to work in the ways that they do. Ellen Bernstein-Ellis  Oh my gosh, it's a beautiful, beautiful response. I think my favorite quote, and there were many in that article, but the one that said “people with stroke live with the impacts of a stroke system that is designed around biomedical short term care for a lifelong condition and deserve services that support them to thrive, not just survive.” I think it's what we need to bring back into the curriculum for our students to understand. And all of this ties into the importance of understanding how cultures and organizations, like you just said, of care, might impact the therapy we provide to our clients. Why do cultures and organizations of care matter? You're alluding to that. I think we've just started to reflect on that. Felicity Bright  Yeah, I've often felt there's a real risk with the research that I do that we could end up pointing the finger at clinicians of not doing things as well as they could or as well as they should. But actually, we need to understand why is this? Why does it make sense for clinicians to prioritize dysphagia over communication? Why does it make sense to prioritize getting people home, over spending the time on addressing their wider wellbeing? And I've been really lucky to work with Deb Hersh and Stacey Attrill, we did a piece of work that looked at this in the context of how speech therapists enacted therapeutic relationships. And we started by delving into why do people work in the way that they do? We started to see the cultural elements. So the needs, for instance,  your allegiances to colleagues, to be a good team player, to maintain your legitimacy. And particularly for speech therapists, who often have a slightly tenuous role in stroke teams. Physios and OTs are important, but speech therapists often have to kind of fight to kind of have their voices heard, and so that can lead to speechies behaving in particular ways. We can also see how cultures of safety impact on what people prioritize. So Abby Foster has done some beautiful work around the cultures of aphasia care and acute care, and highlighting that actually the priority for physical safety and managing dysphagia risk is privileged over the culture of or a need to think about what is the risk associated with communication and poor communication and people not having communication access. If we understand why people work as they do, and if we understand how the cultures and the structures work, then we can start to unpack them and think about what are the ways that we might be able to do things differently. You know, these cultural factors are very real, and none of them are inherently wrong, like it's not a bad thing that we're trying to prevent people getting aspiration pneumonia. That's really, really important, but we need to understand how these things shape practice and the unintended consequences that they might have for what is not valued and for what work isn't prioritized, and what outcomes don't actually seem to really matter in these contexts. And when we start to make these visible, then that opens up space to think about, how might we be able to do things differently, where we can maybe hold all of these things. And you know, in my work that I'm doing around wellbeing, that's the next phase of our work, is working with clinicians to think about, how might we be able to do things differently, so that it's not one or the other, it's not a dichotomy.  But how do we create space for all of these things to be viewed as important and to be prioritized? Ellen Bernstein-Ellis  You've started to dig into that already, because you have yet another 2024 article that you co-authored with Kayes, Soundy and Drown,  Limited conversations about constrained futures: exploring clinician conversations about life after stroke in inpatient settings. And that examines how clinicians talk about the future with their clients. It analyzes 300 hours of observation of clinical interactions, along with 76 interviews with people with aphasia and 37 clinicians. I just want to say that's an astounding undertaking. So, as I read it, it felt like almost an extension of your 2013 and  2020 articles looking at hope, because you connected how what we say can impact how our clients see their future possibilities. Can you share some of the themes you constructed from all of that amazing data collection? I mean, I'm sorry, I thought 15 interviews were a lot, so then I saw this, and I'm like, oh my goodness, amazing. Felicity Bright  It was a pretty massive piece of work, but it was a real privilege to be able to sit and just observe interactions. And I'm so grateful to our people with stroke, many of whom were like two or three days post stroke, and they had the stranger come along and sit there and observe them for 12 hours, but also to our clinicians, who were quite vulnerable in that process of having somebody observe and analyze what they were doing. But at the same time, I think that work is really valuable for looking at what is going on. What we could see is that the conversations that were being had tended to focus on quite a short term future, and we termed this theme constrained temporal horizons. When clinicians were talking about the future, the vast majority of those conversations were about the immediate future. For doctors and nurses--for nurses, it was often what needs to happen in this shift. For allied health and for doctors, it was what needs to happen before you discharge from our service into the next service. And for some allied health, it might be the first few days at home, but there was a view that talking about the longer term future beyond that should be done by other clinicians who might have more knowledge of what life could look like at that stage. We also found that the talk about quite a constrained future was in the context of actually very limited talk, in the first place. So when we think about communication access, for instance, we think, oh, people with aphasia aren't getting very good communication. Actually, lots of people with stroke are not getting very good communication. Again, thinking about cultural factors, but actually communication is not happening well in stroke units, or, I think within the wider healthcare system.  You know, we've got a very task focused, medically focused situation. And so the conversations that were happening were on topics that were led by healthcare professionals, on the topics that they felt mattered-- the tasks they needed to do, the body structures and impairments. The goals that were set were about what needs to happen before somebody gets home. There was little talk about emotions. There was little talk about how you're feeling about what's going on, or what it might be like for you or for your family when you go home. And so this talk about the emotions and so on and future possibilities was left to patients and to families to raise. And instead, the conversations tended to focus on what the healthcare professionals saw as essential topics for the episode of care. We certainly did see some conversations about the future. So I don't want to be disparaging, and I also want to acknowledge the very partial nature of research. I did not see every single interaction. I know that a lot of these quite personal conversations often happen in things like the shower, when the nurses or the OTS are helping the person shower.  That's one of the few private spaces on the ward. And so I want to acknowledge that my analysis is based on a limited data set, and it isn't based on all the conversations that happened, but certainly there was a trend towards limited conversations. We did see that clinicians would open some doors about the future. So they would talk about possible prognosis in the context of things like upper limb prognostic testing that is offered in some hospitals in New Zealand. We would see clinicians talk about what was meaningful to people, particularly in a context where the patient was struggling to engage, but often when the clinicians were talking about this wider future in this context, it was done to try and plant seeds about what the healthcare professional thought was realistic, and it was done to try and help the person engage in rehabilitation in the context of maybe struggling to engage at the best of times. So I think what we could see was that conversations were limited. They were limited conversations about short term, constrained futures that didn't necessarily set people up with hope for the future, with a sense of possibility, with a sense of even starting that process about what matters, to thinking about what matters to me, what do I want life to look like? Ellen Bernstein-Ellis  Wow, and that really just circles us back to that concept of hope. Your work in hope has just been so meaningful to me. I've been really honored to be the guest lecturer speaking about aphasia to our counseling course that's taught by Dr Shubha Kashinath at Cal State, East Bay. And I've included, from the beginning, your work on hope. I just feel it's critical to give our students ways to understand and think about this construct and the role they can have in offering some hope building clinical interactions. I'd like to close this interview by having you discuss some of your first work that I had the honor to read, and some of the hope affirming strategies that you suggest in your 2020 article. Because I just think that's really a gift. Felicity Bright  One of the things that really fascinated me in this work was how our people with aphasia in the research talked about how they look at their clinician and they are reading them to see, are you somebody who's going to give me hope or not? And if they didn't feel their clinician was going to support their hope or was going to help give them hope, or was going to disparage their hopes, they would shut down and they wouldn't share. And so I think, one of the things is to be reflecting on yourself.  What are the messages that you are giving about how you are a safe person to talk to, about whether you are somebody that they can engage in these risky conversations about? I think there's a couple of things as well. We need to recognize that just because somebody says they hope for something doesn't mean that they expect it to happen. We all have unrealistic hopes and expectations. You know,  psychologist colleagues talk to me about how actually having unrealistic hope is part of being psychologically adjusted, and why should that be different for people with stroke? Who are we to say that we hold the expertise. Now, that's not to say that there aren't challenges. So sometimes you might need to do a bit of a balance of, oh, is this something I need to engage in a conversation about? You know, an example is, if somebody is going to invest quite a bit of money in something that actually, there's no evidence to support and could potentially be problematic. There's a really good guideline I found from Christy Simpson, who's an ethicist, who talked about what are the positive effects that this hope has for people? What would be the impacts of taking it away, both positive, but also, what are the negative things that it would do? And so actually engaging in a bit of a risk analysis to think critically about what is holding this hope doing for somebody. Linked to that in the latest paper we did around recalibrating hope, it really highlighted to me the importance of trusting people to often recalibrate their own hopes. So I went back to my original participants from my 2013 research a couple of years later, and I looked at their experiences of hope over that time. And what we found was most of them recalibrated their hopes. They hoped for different things over that time, and they had done that as they engaged in different activities, as they tried things, as they considered their progress, as they rethought what mattered to them. And so that really highlighted, to me, the need to trust people, but it also highlighted the need to think about, how do we support a context that supports people to do that recalibration. Those who were more likely to recalibrate and hold both hope and realism together were people who had social networks, who were engaging in meaningful activities, and who had a sense of purpose and possibility. One of my participants didn't have that. They had lost their social connections. They had no activities in which they were engaging in what was meaningful, and their hope had shrunk. And so it talks to me again, those earlier conversations we've had about well being, thinking about what's meaningful, what supports wellbeing, that's exactly the same thing that supports hope. How are we supporting people's social wellbeing? How are we supporting their relational wellbeing? How are we helping them connect to what is meaningful and what is possible, not just to their impairments, and maybe what is not working so well. I think it's really important to be explicitly thinking about, what is it that helps people bring joy, have joy? What brings them peace in the present? And how can we help them have that sense that things are okay, even if they're not perfect, but also help them have that sense of looking to a future that's possible. Ellen Bernstein-Ellis  Okay, we only have a minute or two left, but I'm going to throw this last question out to you. Felicity, if you had to pick only one thing that we need to achieve urgently as a community of providers, of professionals, what would that one thing be? This is almost like your elevator pitch. You got 60 seconds here. So, so Felicity Bright  So my one thing, in a long, complex sentence, is that speech and language therapists need to reprioritize communication and supporting people to live well after stroke and aphasia, and they need to consider how we model to our colleagues and to our patients and families, and how we support cultures of care that value relationships and relational work, that value and support communication, and that value and support wellbeing.    Ellen Bernstein-Ellis  Oh my goodness, well said, Felicity. Thank you so much for the honor of having this interview today. I know it's going to be impactful to our listeners, and I want to thank our listeners as well. For references and resources mentioned in today's show,  please see our show notes. They're available on our website@www.aphasiaaccess.org and there you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy, and if you have an idea for a future podcast episode, email us at info@aphasia access.org.  For Aphasia Access Conversations,  I'm Ellen Bernstein-Ellis, and thanks again for your ongoing support of Aphasia Access. Thank you, Felicity. Felicity Bright  My pleasure. Thank you for having me.   References and Resources AUT Centre for Person Centred Research: https://cpcr.aut.ac.nz/our-research Biel, M. (Host). (2016). An interview with Felicity Bright: The patient's engagement and experience with you, the speech pathologist (No. 2) [audio podcast episode). ANCDS. SoundCloud.https://soundcloud.com/ancds/ep-2-an-interview-with-felicity-bright-the-patients-engagement-and-experience?utm_source=www.ancds.org&utm_campaign=wtshare&utm_medium=widget&utm_content=https%253A%252F%252Fsoundcloud.com%252Fancds%252Fep-2-an-interview-with-felicity-bright-the-patients-engagement-and-experience  Bright, F. A., Ibell‐Roberts, C., Featherstone, K., Signal, N., Wilson, B. J., Collier, A., & Fu, V. (2024). ‘Physical well‐being is our top priority': Healthcare professionals' challenges in supporting psychosocial well‐being in stroke services. Health Expectations, 27(2), e14016. Bright, F. A., Ibell-Roberts, C., & Wilson, B. J. (2024). Psychosocial well-being after stroke in Aotearoa New Zealand: a qualitative metasynthesis. Disability and Rehabilitation, 46(10), 2000-2013. Bright, F. A., Kayes, N. M., McCann, C. M., & McPherson, K. M. (2013). Hope in people with aphasia. Aphasiology, 27(1), 41-58. Bright, F. A., McCann, C. M., & Kayes, N. M. (2020). Recalibrating hope: A longitudinal study of the experiences of people with aphasia after stroke. Scandinavian Journal of Caring Sciences, 34(2), 428-435. Bright, F. A., Kayes, N. M., Soundy, A., & Drown, J. (2024). Limited conversations about constrained futures: exploring clinicians' conversations about life after stroke in inpatient settings. Brain Impairment, 25(1). Ellis-Hill, C., Payne, S., & Ward, C. (2008). Using stroke to explore the life thread model: an alternative approach to understanding rehabilitation following an acquired disability. Disability and rehabilitation, 30(2), 150-159. Foster, A., O'Halloran, R., Rose, M., & Worrall, L. (2016). “Communication is taking a back seat”: speech pathologists' perceptions of aphasia management in acute hospital settings. Aphasiology, 30(5), 585-608. Parr, S., Byng, S., & Gilpin, S. (1997). Talking about aphasia: Living with loss of language after stroke. McGraw-Hill Education (UK). Simpson, C. (2004). When hope makes us vulnerable: A discussion of patient-healthcare provider interactions in the context of hope. Bioethics, 18(5), 428-447

In this episode, I talk with Maaike Vandermosten, Associate Professor in the Department of Neurosciences at KU Leuven, about the neural basis of developmental dyslexia, and neuroplasticity in recovery from aphasia.Vandermosten websiteVanderauwera J, Wouters J, Vandermosten M, Ghesquière P. Early dynamics of white matter deficits in children developing dyslexia. Dev Cogn Neurosci 2017; 27: 69-77. [doi]Beelen C, Vanderauwera J, Wouters J, Vandermosten M, Ghesquière P. Atypical gray matter in children with dyslexia before the onset of reading instruction. Cortex 2019; 121: 399–413. [doi]Phan TV, Sima D, Smeets D, Ghesquière P, Wouters J, Vandermosten M. Structural brain dynamics across reading development: A longitudinal MRI study from kindergarten to grade 5. Hum Brain Mapp 2021; 42: 4497-509. [doi]Clercq PD, Gonsalves AR, Gerrits R, Vandermosten M. Individualized functional localization of the language and multiple demand network in chronic post-stroke aphasia. bioRxiv 2024; 2024.01.12.575350. [doi]

You know those awkward moments where you can't hear what someone is saying in a loud environment, so you just nod and agree to whatever they say? …hoping it makes sense to just nod and agree? As a medical SLP, odds are, you've worked with patients who have done this to you. Not because you're providing therapy in a loud environment, but because they have receptive aphasia, or impaired auditory comprehension. While impaired speech and language is easy to pick up on, auditory comprehension is a whole different ballpark… Which is why we're bring on our beloved aphasia & auditory comprehension MedSLP Collective mentor, Brett McCardel! Brett drops dozens of golden knowledge nuggets with us as he shares things like… What impaired auditory comprehension can look like (it really varies!) How auditory comprehension impacts quality of life The two ways we can classify auditory comprehension Assessment tools Treatment considerations And so much more!! If you serve people with aphasia at all, you won't want to miss this episode! And if you want to dig EVEN DEEPER into your aphasia assessment and treatment skills, you might be interested in this month's themed mission inside of the MedSLP Collective! We're dedicating every resource, checklist, in-service, and webinar this month to aphasia - including aphasia in sign language!  Get the show notes here: https://syppodcast.com/341 Aphasia Therapy Approach (00:01:34) Changes in the Meta SLP Collective (00:02:50) Focus on New Resources (00:03:46) Implementation of Material (00:05:42) Diving into Auditory Comprehension (00:07:02) Understanding Auditory Comprehension (00:08:50) Challenges in Auditory Comprehension (00:10:05) Impact on Quality of Life (00:12:04) Classifying Auditory Comprehension Deficits (00:14:44) Assessment of Auditory Comprehension (00:15:35) Common Assessment Tasks (00:18:02) Auditory Processing Model Overview (00:19:13) Auditory Comprehension at Single Word Level (00:20:17) Treatment Approaches for Single Word Level (00:21:24) Research on Auditory Discrimination Skills (00:22:12) Awareness in Auditory Comprehension (00:23:46) Transition to Sentence Level Comprehension (00:25:24) Assessment Tools for Sentence Level (00:27:44) Treatment Strategies for Syntax and Morphology (00:29:21) Discourse Level Assessment (00:33:31) Compensatory Strategies for Discourse Level (00:35:52) AAC and Auditory Comprehension Support (00:36:54) Case Study on Auditory Comprehension (00:37:41) Understanding Auditory Comprehension (00:38:52) Life Participation Approach (00:39:51) Communication Environment Considerations (00:40:00) Functional Treatment Strategies (00:41:00) Holistic Aphasia Treatment (00:41:54) The post 341 – The Complex World of Auditory Comprehension and Receptive Aphasia: Assessment, Treatment, and More appeared first on Swallow Your Pride Podcast.

John 00 Fleming presents JOOF Radio 058 (Tracklist below) With a run of festivals out the way where I' ve been playing shorter sets, I' ve been recalibrating for my many extended club sets ahead, digging more into my Deep hypnotic playlists and put a mix together of some of my favourite releases I' ve been loving this year. There' s some truly outstanding music out there. The harder side comes in the form of the guest mix from Daniel Weirdo from Hungary who' s currently on fire at the moment in the studio. Guest mix: Daniel Weirdo [Hungary] Tracklist: ---- John 00 Fleming ---- 1 Ruls - Higher High 2 Digital Mess - Connect The Head 3 Kebin Van Reeken, Topo Larocca, Undermove - Vagabund 4 Mike Koglin, Moodfreak, Sudhaus - Pulse (Kebin Van Reeken Remix) 5 Aphasia ofc - Fractured Shadows (Maarten Spoor Remix) 6 Milkwish & Van Dope - River (Jerome Isma-Ae Extended Remix) 7 Exotek — Arrival [JOOF Recordings] 8 Sphera - Echoes of a Previous Life [Iboga Records] 9 Sphera - Forever [Iboga_Records] 10 Basil O' Glue - Remember 98 [BAGRUHM] 11 Rick Pier O Neil & Elan Myles - Eternal Transit [JOOF Recordings] ---- Guest Mix ---- Guest mix: Daniel Weirdo [Hungary] --- Tour Dates ---- Sept 26th // Warehouse 3000, Melbourne [Australia] Sept 27th // Lucy' s Loveshack, Perth [Australia] Sept 28th // Chinese laundry, Sydney [Australia] Oct 05th // Lost in sound @ The mothership, Aukland [New Zealand] Oct 06th // Lemon & Lime @ The Triffid, Brisbane [Australia] Oct 12th // The Prog Lab, The Loco Klub, Bristol [UK] Oct 19th // Fleming & Lawrence @ Discopussy, Las Vegas [United States] Oct 25th // The Journey @ Shuffle Club, Calgary [Canada] Oct 26th // Ozmozis, Toronto [Canada] Oct 27th // Afraid Festival, Puebla [Mexico] Nov 16th // INCOGNITO, Los Angeles [United States] Dec 06th // ORA Nightclub, Seattle [United States] Dec 08th // Galaxy Station Festival, Houston [United States] More to follow tbc... *********************************************************** For JOOF merchandise and T-Shirts head to our shop here: https://john00fleming.tmstor.es ***********************************************************

Imagine going about your day, following your routine, when out of the blue something comes along and knocks you to the ground, ending the life you've known up until that moment.In the movies, things can go into slow motion, or you hear the “needle scratch” that ends the background music as everything comes to a shuttering halt and you fall to the ground.This was the moment Dori Staehle (pronounced STAY-LEE) got beat like a drum in a bicycle accident – and as she was soon to discover, drumming was going to be the next step.Dori told her professors she was raised by wolves. Her father became a single parent to Dori and her two older sisters and the girls found themselves taking care of the household with minimal parental guidance.At age 16, she left home to live with a friend from high school. Around that same time developed a curiosity about spirituality and sought to learn more about faith on her own. After college, where she almost burned out due to her heavy course load, Dori pursued a career path of international business and sales and marketing but felt unfulfilled creatively. At the same time, she discovered her children “learned differently.” so out of necessity she designed a unique way to teach them mathematics.It was then that Dori discovered that hand drumming helped beat stress and ADHD issues and improved productivity. So in 2009 she became a Certified Drum Therapist with Drums and Disabilities, and later trained with Health Rhythms.Not everything was “fine” – that 4-Letter Word – but it was about to get worse. BAM! One day in 2011, that bicycle came out of nowhere. After weeks of being put off when she sought proper medical attention and being told she was “fine” when she was in constant pain, an MRI revealed that not only did she have a mass of cysts inside her, the bicycle accident had triggered Aphasia.Dori almost gave up, but decided to ask God to give her a way to heal herself and others - and that's when things got interesting.Already well into her 50s, she started her fourth business, Next Stage Drumming, mainly offering classes, events, and private drum therapy sessions. Once Dori added some mentoring and coaching to the mix, she began to see breakthroughs taking place very quickly – not only for her clients, but for herself as well.In a moment, when you meet Dori, you'll hear her fascinating story about how all the threads, lessons, triumphs, and tragedies of her life coalesced as if they were leading her to the drums. As Dori says, “You're never too old and it's never too late to rock what you've got!”Dori's hype song is "Rise Up (Lazarus)" by CAIN.Resources:Dori Staehle's website: https://www.nextstagedrumming.com LinkedIn: https://www.linkedin.com/in/doristaehlemba Facebook: https://www.facebook.com/nextstagedrummingInstagram: https://www.instagram.com/nextstagedoriClaim your access to Dori Staehle's free stress relief video when you sign up for her newsletter: https://www.nextstagedrumming.com/free-tips/Invitation from Lori:Before you press that "Play" button (or after you finish listening), let me mention that in my special guide, 5 Easy Ways to Start Living the Sabbatical Life, you can...

We often talk about how aphasia impacts people's ability to speak or understand language, but what about aphasia's impact on sign language? Do the hands sometimes sign “apple” instead of “orange” thanks to a semantic paraphasia? If one arm is weak or paralyzed because of a stroke, how does THAT impact someone's ability to communicate using sign language? Instead of speech-language pathology, would we make the focus sign-language pathology?  Shelby Hill SLPD CCC-SLP QOM, is here to talk all about it - and you WON'T want to miss this discussion! Shelby describes her important work and research with individuals who are deaf and have also acquired a communication disorder. She covers important topics like whether or not sign language falls under the SLP scope of practice, how the neurological processes for signing are similar to those for speaking, and what aphasia can look like in individuals who use sign language. Don't worry, if you find yourself saying, “I should have known that!” throughout this episode, you're not alone. Get the show notes at: https://syppodcast.com/338 Timestamps: The post 338 – Aphasia in Sign-Language: The Emerging Specialty of Sign Language Pathology appeared first on Swallow Your Pride Podcast.

This week, we rebroadcast an episode from Season 4. Maire MacCana, community-based Speech Pathologist with the Tasmanian Health Service, chats with Dr Jasvinder Sekhon, a speech pathologist and research affiliate and community of practice member at the Centre for Research Excellence in Aphasia Recovery and Rehabilitation. Jas explores research into counselling training for speech pathologist to support the psychological wellbeing of people with post-stroke aphasia. Contact Dr. Sekhon at: J.Sekhon@latrobe.edu.au Resources: CLEAR - Counselling education in aphasia rehabilitation short course: https://shortcourses.latrobe.edu.au/counselling-education-in-aphasia-rehabilitation-clear Aphasia CRE webinar - Enabling speech pathologists to feel confident supporting people with post-stroke aphasia: https://www.youtube.com/watch?v=aNAezKIgk5s Speak Up: Applying a biopsychosocial framework when working with people living with aphasia: S4E10: https://soundcloud.com/speechpathologyaustralia/applying-a-biopsychosocial-framework-when-working-with-people-living-with-aphasia-s04-ep10 References: The Government Office for Science, London. (2008). Foresight mental capital and wellbeing project, final project report. https://www.gov.uk/government/publications/mental-capital-and-wellbeing-making-the-most-of-ourselves-in-the-21st-century Ryff, C. D. (1995). "Psychological Well-Being in Adult Life." Current Directions in Psychological Science 4(4): 99-104. https://shortcourses.latrobe.edu.au/counselling-education-in-aphasia-rehabilitation-clear Sekhon, Jasvinder K., Oates, Jennifer, Kneebone, Ian, & Rose, Miranda (2022) A phase II randomised controlled trial evaluating the feasibility and preliminary efficacy of an education program on speech-language pathologist' self-efficacy, and self-rated competency for counselling to support psychological wellbeing in people with post-stroke aphasia, Topics in Stroke Rehabilitation. https://doi.10.1080/10749357.2022.2145736 World Health Organisation (WHO). (2001). International classification of functioning, disability and health. http://www.who.int/classifications/icf/en/ World Health Organisation (WHO). (2022). Mental health: Strengthening our response. https://www.who.int/news-room/fact-sheets/detail/mental-health-strengthening-our-response. Zanella, C., Laures-Gore, J., Dotson, V. M., & Belagaje, S. R. (2022). Incidence of post-stroke depression symptoms and potential risk factors in adults with aphasia in a comprehensive stroke center. Topics in Stroke Rehabilitation, ahead-of-print, 1–11. https://doi.org/10.1080/10749357.2022.2070363 Speech Pathology Australia acknowledge the Traditional Custodians of lands, seas and waters throughout Australia, and pay respect to Elders past and present. We recognise that the health and social and emotional wellbeing of Aboriginal and Torres Strait Islander peoples are grounded in continued connection to culture, country, language and community and acknowledge that sovereignty was never ceded. Free access to audio transcripts for all Speak Up Podcast episodes are available via the Association's Learning Hub, you will need to sign in or create an account. 1. Go to: www.speechpathologyaustralia.org.au/Public/…e616542. 2. Filter – Format – Podcast – Search 3. Select the podcast of your choice 4. Enroll (you will need to sign in or create an account) 5. Add to cart – Proceed to checkout – Submit 6. You will receive an email Order Confirmation with a link back to the Learning Hub 7. The Podcast and transcript will be available in your Learning Centre For further enquiries, please email learninghub@speechpathologyaustralia.org.au

Welcome to this Aphasia Access Aphasia Conversations Podcast, a series of conversations about aphasia, the LPAA model, and aphasia programs that follow this model. My name is Janet Patterson. I am a Research Speech-Language Pathologist at the VA Northern California Healthcare System in Martinez, California, and a member of the Aphasia Access Conversations Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their efforts in engaging with persons with aphasia and their families through a variety of educational materials and resources. I am the host for our episode that will feature Lauren Bislick, in which you will hear about friendship, yoga, mental imagery and aphasia. These Show Notes accompany the conversation with Lauren but are not a verbatim transcript.   In today's episode you will hear about: the value of friendship in our lives and Mission SPEAK, ideas for creating an accessible yoga program for person with aphasia, and the value of mental imagery.  Dr. Janet Patterson: Welcome to this edition of Aphasia Access Conversations, a series of conversations about the LPAA model and aphasia programs that follow this model. My name is Janet Patterson, and I'm a research speech language pathologist at the VA Northern California Healthcare System in Martinez, California. Today I am delighted to be speaking with Dr. Lauren Bislick, a newly minted Associate Professor at the University of Central Florida, in the School of Communication Sciences and Disorders. Lauren is also the director of the UCF Aphasia House, and the director of the Aphasia and Related Conditions Research Lab. Across her work efforts, Lauren investigates the diagnosis and treatment of acquired apraxia of speech and aphasia, the value of mindful body practices such as yoga, friendship development, and interprofessional education and practice.    In 2023, Lauren 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, Lauren. 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 influence of the Tavistock award.    Welcome Lauren, to Aphasia Access Conversations.   Dr. Lauren Bislick: Thank you, Janet, and thank you Aphasia Access for having me. Also thank you to the Tavistock Trust for the review team for nominating me and for selecting me. I'm truly very honored to be a recipient of this award.   Janet: It's a well-deserved award. Lauren, as we said, you were named a Tavistock Trust, Distinguished Scholar USA for 2023. You join a talented and dedicated group of individuals in this award. How does receiving the Tavistock award influence your clinical and research efforts in aphasia?    Lauren: First, I'll say again, I was truly honored to receive this award and was definitely surprised. The nomination announcement occurred at the Clinical Aphasiology Conference, and they didn't give us a heads up that the announcement was coming through, so I was very surprised. I think in terms of how this has influenced my clinical and research efforts as an academic, and as a clinician. I think a lot of people can relate to that feeling of imposter syndrome, and so receiving this award has helped me push that feeling to the side a little bit in some aspects of my work and of what I do. It's also allowed me to feel very proud about what I've been able to do. but more so through my collaborations and my students and the community that we have at UCF. It's allowed me to grow connection. Since receiving this award, people have reached out to me to talk about collaboration or wanting my help in terms of more of a consultant role. It's allowed myself and my lab to reach a larger group of people and has definitely supported that emphasis on quality-of-life work, which is not necessarily the training that I focused on when I was in my doctoral program. That's been something that I've come into in my time as an assistant faculty member or a junior researcher. It feels very good to be acknowledged for that and for these lines of work being supported.   Janet: And well deserved, for certain. Lauren, I would like to begin by asking you 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 sad times in one's life. One of the unfortunate consequences of aphasia can be the loss or diminishing of friendships, or the communication skills important to developing and sustaining friendship and community. How did you become interested in this aspect of aphasia? And what conclusions have you drawn from your research?   Lauren: Thank you for this question. One of the things that I talk about frequently in both my aphasia course and the motor speech disorders for our graduate students, is how individuals with acquired communication disorders, whether it be linguistic, or motor based, is that their social circles get smaller, and we know that's a problem in life. Friendship is an essential component of quality of life, and as you said, whether celebrating the good things or you're going through a hard time you need those friends. This is an important area that I believe gets overlooked although now we have a couple of different groups looking at friendship and aphasia, which is wonderful. I actually have to thank Dr. Elizabeth Brookshire Madden for pulling me into this work. She is at Florida State University, and I like to call us aphasia sisters. We went through the same doctoral program, and she was one year behind me. We became very close during that time, both as friends, but also in the work that we do. [Aphasia Access note: Elizabeth Madden was selected as a Tavistock Distinguished Scholar USA in 2024.]   One of the other faculty members at Florida State University, Michelle Therrien, does work on friendship, but in the pediatric world. This grew out of conversations between Liz and Michelle, where they started talking about how we can look at friendship and aphasia. Clearly, we all believe it's an issue, but it hasn't been well investigated. That was shortly before the team Project Bridge Conference, which is really what helped initiate this kind of area of research for our group. Liz and I met at the 2018 Project Bridge conference and started facilitating a friendship group; she took the lead in this area. I got pulled to the yoga group, which we'll talk about later. Liz talked with a number of care partners of individuals with aphasia, and started discussing their social groups, and then friendship. Leaving that conference, she had some really great ideas about where to go next and what was needed in the area of friendship. From there grew her team of myself, Michelle Therrien, Sarah Wallace, at the University of Pittsburgh and Rachel Albritton, who's also at FSU.    In our first study, we did a survey with SLPs trying to ask if SLPs see friendship as being an issue? You know, is this us projecting, or is this something that clinical speech-language pathologists are seeing as an issue? If so, are we addressing it in the field? What that initial study showed us was that, yes, SLPs report that their clients are experiencing loss or difficulty with friendships. They also reported that there are barriers, there aren't assessments that ask about friendships, and there aren't interventions. So, while they see this as an important thing, and something that SLPs believe that this was within our scope of practice, they need a little more guidance as to how to support people with aphasia in terms of maintaining friendships, and then also developing friendships.    Following that study, we then spoke to people with aphasia and also spoke to caregivers of people with aphasia to get their perspectives and their lived experiences. What happens to friendship, immediately after a stroke? In that acute phase? What happens to friendship during that chronic phase? And then where are they now? What we found through these conversations is that many individuals reported that their friendships had changed after they acquired aphasia, both in the acute phase and the chronic stages. The same could be said for caregivers as they are navigating this world as caregivers. They are experiencing changes in their friendships. With aphasia being a chronic condition, this is something that people are living with for the rest of their lives. Friends can kind of be there in the beginning, and that acute care phase where they send messages or come by to say hello and show their support. As they realize that the communication impairment isn't going away, they don't know what to do and may get a little uncomfortable, feeling bad that they don't understand their friend with aphasia, or they don't know how to support them in their communication, or this problem isn't disappearing. This is me projecting, but I believe that's what's happening and what we're seeing is that people with aphasia, and their caregivers are reporting this loss. They also are reporting gaining new friends as they become ingrained in social groups. They meet other people with aphasia or care partners of other individuals with aphasia and develop friendships that way. They are also reporting smaller social groups, smaller groups of friends from their pre-aphasia life, dwindling for a lot of people. We think from our research what we're finding is that we really need interventions that target friendship maintenance and development. Some of that may be as simple as providing education, inviting friends into the therapy room. We do this with care partners, we can also offer this to friends to see how we are interacting with your loved one with aphasia. We can provide key tools to support communication; I really think a big piece of it is education. We've got to find the best way to navigate this in the clinical world. I think that's the next step not only for our group, but for the other groups that are looking at Friendship.    Janet: Lauren, you make some very good points in those comments. I wonder, do you have some brief thoughts or very specific ideas about how as clinicians, we can act in ways to optimize the friendship activities of our clients, or their care partners, recognizing though, that everyone has different styles and needs for friendship? It's like you say, we should not be projecting our desires and our styles and our needs onto our patients, but rather listen to them and figure out what their needs and desires are?   Lauren: Number one, right there, is listening to our clients, listening to their loved ones, what do they need? As I mentioned before, I think education is a really big piece of this. That may mean just having some materials as a speech-language pathologist that you can send home with family members that they can give to friends, right, so not just materials for that care partner, or the person with aphasia, but materials for friends. Here's something that will educate you a little bit on what aphasia is, there are some ways that you can successfully communicate with your friend with aphasia, here's what to expect. I think some of it is people just don't understand. They don't live in our world clinically, working with people with aphasia, working with people with communication disorders. For some, it's that they've never been exposed to, and so there's a discomfort with the unknown. I think education is huge. Also inviting friends. If you're going to have a counseling session with a care partner, and a person with aphasia, and their loved one, would they like friends to be at that table? Ask them. They may not, they may want it just for them and to be quiet and personal, but they may have some really close friends that they know they're going to lean on and want to be there. Opening the opportunity to invite other individuals and also inviting friends to support groups. Bringing friends to support groups, I think, would also be a space where friends then can observe interactions among people with aphasia, as well as their loved ones, and can have an opportunity to interact with other people with aphasia. So those are a few things that I think we can do right now. There are through many of the different resources like ARC [Aphasia Recovery Connection], for example, there are opportunities for education, communication partner training, and those are things that we can also plug friends into   Janet: Those are some very good ideas, Lauren, very good ideas. You have also worked to address the isolation felt by people with aphasia, and severe acquired communication impairment through your lab's Mission SPEAK program. Can you tell us more about this program, please?   Lauren: Absolutely. Mission SPEAK stands for Mission to Promote Socialization, Participation, Engagement, Advocacy and Kindness, for people with severe acquired communication disorders. This grew out of a lack of participation among some of our community members who had more severe communication impairments. They felt that they were just unable to be successful in a group setting, and tried some of the aphasia support groups, but didn't feel like they were being heard, or that they had equal opportunity, or were just frustrated by it. It didn't feel right for them. And so, I started thinking about, well, how can we provide an opportunity for individuals who feel this way, or maybe they're just more introverted which could be another piece to why they don't want that large group. How can we provide opportunities where they're still getting to practice communication in a safe space, develop friendships, and just be able to interact to combat those feelings of isolation that people with aphasia and other acquired communication disorders report. Mission SPEAK is a program where the students in my lab, both undergraduate and graduate students, some are CSD, some pre-med, some in their med programs, where they have the opportunity to meet with an individual with aphasia or another acquired communication disorder on a weekly basis to have a conversation. It's all via Zoom. These meetings can take any shape that the person with aphasia or the communication impairment and the student want to go with it. We have some individuals that meet to actually practice what they're learning in therapy and so the clinician has connected with my students to say ‘Hey, can you go over this homework with them or allow them opportunities to practice' and sometimes the clinician will hop on to Zoom as well. We also have opportunities such as one of my students and one of our friends with aphasia are reading a book together and so they do shared reading. In another pair we have a young man who really just needs interaction, so he meets with two different students, and they just have conversations over shared interests. Sometimes his mom is there to help support communication. We see as time goes on that as the individuals are getting more comfortable with each other, and the students are getting more comfortable, there are emerging areas where there are overlapping interests, or maybe the student is learning from the person with aphasia say, about sports, for example. We have one group where our friend with aphasia is a huge sports fanatic. He was meeting with two young women in our undergraduate program who knew very little about some of these sports and so he's taught them. It's really fun. Again, they meet at least once a week. We have one individual that at one point was meeting with three separate students three times a week. The friendships that form from these smaller groups are something special. For some of these folks it's intergenerational, for others they are peers. What you see is that the students don't want to give up this opportunity. I have some students who have been meeting with their friend with aphasia for over two years now. They've gone from their undergraduate programs through their graduate programs, and they've just developed a friendship and don't want to let go of it, which I think is phenomenal. This is something that I would like to see open up as chapters across different universities. Students want these interactions so badly and there are so many people with acquired communication disorders that need an outlet, and that would benefit from this safe space to work on their skills to just have fun. It really can be whatever they want it to be.   Janet: What a great idea. You've got my brain spinning. And I've been making notes about some clients I've been thinking about who would benefit from exactly what you're saying, just the opportunity to have an interaction and conversation. Wonderful.    Lauren, another avenue that you've been interested in is the practice of mindfulness, especially yoga practice. How do you see yoga practice supporting the LPAA philosophy of living well, with aphasia?   Lauren: Love this question. I have to backpedal just a little bit to answer it to say, I was never a yogi until I started my doctoral program. If you know me, I'm 5'11”. I'm tall and I grew up playing all the tall-person sports and pretty much was of the mindset that if you're not huffing and puffing and soaked in sweat, then it wasn't exercise or it wasn't beneficial. Well, I was wrong. In my doctoral program, I was dealing with imposter syndrome. I'm also a first-generation college student. Being at that level, and with all the different hurdles that a doctoral program offers, I was really feeling that imposter syndrome and anxiety that surrounds it. Somebody suggested starting yoga, and it's what got me out of bed in the morning, and really grounded me to face my day and feel as confident as I could in my skin during that time. After doing it for a few years, I just had this aha moment of, wow, I would love to bring this to the aphasia community. It's helped me with my anxieties and my areas of self-doubt and has just allowed me to also be present. I can only imagine for some folks with aphasia the anxiety that they may have surrounding communication, or just feeling okay with where they are in this part of their journey and that acceptance piece. Then I pushed it off. I said, well, I can't do that now I have to wait until I get tenure, I've got to focus on this very systematic treatment development program. I can't do more things.    Then in 2019 when I was an assistant professor, just my first year at UCF, I went to Project Bridge again thank you, Jackie Hinkley. While I was there, there was a small group that consisted of Dr. Amy Dietz and her friend with aphasia, Terry, who were at a table, and they were promoting yoga for aphasia. I was walking around, and I saw that table and I thought it was amazing. I went over there to have a conversation with them. Amy Dietz had just finished a small pilot project looking at methodology of how we make yoga accessible. And so I talked with Amy and I talked with her friend with aphasia, Terry, about their experience, and then more people started coming to that table; Susan Duncan, who is aphasiologist and a speech-language pathologist and a yoga practitioner, and then also a person with aphasia, Chase Rushlow and his mom, Deanna Rushlow. All the whole rest of that conference, we hung together, and started planning out the trajectory of how to bring accessible yoga to people with aphasia and to the aphasia community. Chase had experienced yoga, post stroke, and as a person living with aphasia with his mom, they shared their story about how it brought them together, and how it grounded him, how he found Zen. It was so fruitful being able to have these conversations with people with aphasia, and also their care partners, and them telling us what yoga has done for them. Not only did we all have our own experiences with yoga from myself, Amy and Susan, but then we also were getting this feedback from the rights holders, right from our patient stakeholders. And so this group moved forward.    Sorry, I had to backpedal there a little bit. Since that time, I'm so proud of what we have done as a team and what has unfolded. I was very fortunate to meet a yoga therapist named Karen Cornelius here in the Orlando area and together, we've been able to build an accessible adapted virtual yoga program for people with aphasia. It started as kind of this feasibility study with our own aphasia community group here in Orlando, getting feedback from them, figuring out how to make the language accessible, what visuals are helpful? What do people with aphasia want from a yoga practice, were there things that they liked, or things that they didn't like. We've had this really long but very informative process of delivering yoga from a yoga therapy perspective, caring experience, and then figuring out what to spend more time on and how to present things verbally and visually. Now I feel like we have this ongoing, strong, adapted yoga community that we're able to offer. We offer it every Friday at 11am. And we have participants from all over the US. We still have a strong group from Florida, from the Orlando area, but we've got people that participate from California, we've got folks from in the middle of the state, we've got people from Kentucky, we've got people from Pittsburgh, we have people from up north. And we also have a participant from Bermuda. It's amazing to see all of these individuals who would have never met each other otherwise come together so that they can have a yoga practice. For some of these folks, they participated in yoga before their stroke, and then had a really hard time getting back into it afterwards because of the language impairment, the language barrier really. Yoga is a very language heavy practice. The modifications that we've made have been really helpful in making it accessible. But then we've also brought in others that never looked at yoga before and experienced it for the first time and have heard their report that they reap the benefits of it. What we're seeing in both our qualitative research, and also in our quantitative research is that people are reporting reduced stress after participating in at least eight weeks of yoga, better sleep quality, and increased resilience. Some have discussed better pain management, so they feel like their pain, although it's not gone away, that they are able to go about their daily life without pain taking as much in terms of resources from them as it did prior. The biggest thing to I mean that sticks out is people are talking about self-acceptance. Yoga has helped them accept where they are right now in their journey. The last thing I'll say along these lines is there is something so powerful about having individuals come together in this group and there's conversation that happens at the beginning and at the end, just like you would if you walked into a yoga studio. I think it's that they're all working on a common goal, in this hour, and very little of what's being done is focused on communication, the effort is taken away. They're really just sharing a space with each other, enjoying that space, doing something that's making them feel good. And they're not having to think about their impairment. There's something really special with this group.    This work has now been funded by Orlando Health, which is our one of our big hospitals in the area. We're working with an interprofessional team and actually bringing yoga therapy into the inpatient rehabilitation program. This has been really neat, because Karen, the yoga therapist, and I are working with an interdisciplinary team of speech-language pathologists, physical therapists, occupational therapists, and recreational therapists. We'll have a group of individuals and all of these different professionals in the same room, and we're getting feedback from the professionals about what they like, what's facilitating this program for them, and what are the barriers. At the end, they will be the ones running this program, and they are very committed to keeping it up and running. We're also of course, getting the feedback from the people with aphasia and other brain injury survivors in this group, as well as their caregivers that are coming in and participating. I think now I can say I've done a good chunk of research in my life, and this area is the most fun and the least amount of work. Everything has happened organically. There has not been a moment where it feels like this really is work, or I don't want to do this. It's all just unfolded so beautifully. I feel so fortunate to be a part of this, I'm so thankful that Project Bridge pushed me into this, in a sense, when I thought I had to put it off for years and years to come. It's been a lot of fun. For our listeners, we have an ongoing yoga program on Friday mornings at 11 am EST, that is run by a yoga therapist who is amazing, and well versed in aphasia. I welcome people to join us.   Janet: I am moved by your story, Lauren, both your individual journey through your doctoral program and finding yoga to help your own self, and then taking that into the aphasia community. Several times you've used the phrase, ‘your journey through life' or ‘your journey of life'. And isn't that true? We're all on a journey, and it changes year to year, or decade to decade, if you will. It's exciting to know that you're finding a way to connect people with aphasia to a larger community that focuses on yoga, for example, rather than focusing on the impairment that they have living with their aphasia. Thank you for that. It sounds like it's a great success, and I hope it will continue to be so good for you.   Lauren: Thank you.   Janet: Lauren, another area of investigation, you're examining the benefit of motor imagery and home practice, for enhancing treatment outcomes in persons with apraxia of speech. This is a little bit different from yoga and mindfulness. But yet at the same time, it's about what people can do in their own selves, I think to improve their communications and improve their interactions with others. Will you describe this work and your current findings, please?    Lauren: Absolutely. And you really did hit the nail on the head because it does overlap a lot. It's different in that we are working on the impairment here, but the motor imagery piece grew out of what I was seeing with yoga. Many of our participants have hemiparesis, for example, or they might have apraxia of speech or more severe aphasia. When they are unable to produce a certain movement, or unable to say a certain mantra, we tell them just to visualize. If you can't move that arm that is fine, or if you can't move it to the extent that you want to that is okay, just imagine that arm moving. Just imagine or hear yourself saying this affirmation.    Based on what we were doing with the yoga I started digging a little deeper into the research on motor imagery and mental imagery, and that's where this idea arose. Surprisingly, there hasn't been a whole lot of work using motor imagery for rehabilitation of apraxia of speech. There's been a little bit of work in the area of stuttering, and motor imagery is used significantly in sports medicine, athletic training for professional sports, and musical training, and also rehabilitation of limb and gait, but really very little about speech. And so, I found a hole. My thought was maybe this motor imagery piece is a start, it's something that people can do at home without much support, and maybe it will impact their performance, either that day or in a therapy session a few days later. I wrote a grant and it was funded through the National Institutes of Health. The grant focused on looking at the impact that motor imagery has when combined with behavioral speech treatment. My thought moving forward was that I got my Ph.D. not only because I wanted to know more and wanted to create treatment programs, but I wanted to prove to insurance that healing the brain post stroke, or rehabilitation of speech and language post stroke, is not the same as healing a broken bone. It takes a lot more time. It's ongoing. In my time, I have not seen a change in insurance. In fact, I think it's gotten worse. So my thought into this is we've got to give clinicians and people with communication impairments the opportunity to work more from home. What can they do on their own to bolster the impact of those few treatment settings that they actually are getting, if they are treatment seeking individuals. The idea is, the hope is, that through motor imagery, what we're doing is priming the neural network. Patients can go home with targeted stimuli that they're working on, for example, and just imagine themselves saying it accurately, thinking about how the articulators are moving, visualizing themselves being successful. Hopefully, we're priming those networks. Then when they go into that treatment session, those networks are primed and perhaps we see a boost in performance. The hope, the long-term goal, of this is to build a home practice program that can be accessible to people in the comfort of their homes, easily and free of charge. The speech-language pathologist can also interface with the program to put stimuli into it, for example, so that it can support what they're working on in therapy. We're still in the early phases, but we just completed our first qualitative interview after somebody has completed the whole program, and they really liked it. I thought people were going to be bored with motor imagery because we're not yet allowing them to say anything. In the motor imagery piece, we really want to focus on what does imagery add, but they really enjoyed it. Our first participant, what he said was that at first he didn't like it, he thought it was weird. After we went through practice for a few weeks, he would come into the therapy session and we would do a probe and afterwards if I commented that he did really well on that today, or in the treatment session itself, or if I was seeing a lot of success with certain targets, he would say ‘the homework, the homework'. My thought was that he felt like the homework is helping. He was encouraging and felt like it was helping. We've only run a few people through, so right now, it's preliminary findings, but what I'm seeing is a benefit when they are going home and having this opportunity to practice. Even though it's not verbal practice, it's motor imagery, I'm seeing a change when they come into the session. The study itself is funded for three years, and we have the opportunity to provide free therapy for 18 individuals with co-occurring apraxia of speech and aphasia. I'm excited to see what that group data look like, but right now, and with just the conversations that we're having with the folks that are coming through, I feel very optimistic about this program. It will definitely need to grow, I don't want it to be only motor imagery forever. It's a good first step.   Janet: That is very exciting to hear. I look forward to reading the results as you have more and more individuals with apraxia of speech move through your program.   Lauren, as we draw this interview to a close, I wonder if you have some lessons learned that you would share with our listeners, as well as some Monday morning practices, that is actions that we can take on Monday morning to improve our interactions with persons with the aphasia or apraxia of speech.    Lauren: So I think first, and this is reflecting on what I do, I know many individuals out there, whether you are clinically working with the population, or you're doing research, you're in an area where you are giving. We are giving to support a community. The same thing that I tell our caregivers is to do something for you first, that will allow you to continue to give to others. What is something can you identify, something every day. When there's a little bit of something that you can do for yourself that just fuels you to be the best clinician, the best researcher, the best partner, parent, the many hats that people wear, to your community. That may look different for everyone. For some people, maybe it is meditation, for others maybe it's yoga, maybe it's running, maybe it's baking, everybody has their thing, but identify that certain something that gives you the energy and maybe the groundedness to serve your community.    One thing we've touched on, and if you're listening to this podcast, you know this, but listen to our friends with aphasia. Their perspectives give us so much more than we could ever pretend to know. I've learned so much from my friends with aphasia, even moving forward and in my research - thinking that I know what people want, talk to them, and then the realization this actually isn't an issue, this other thing is. Seek better understanding, otherwise, we're going up the wrong ladder and putting our efforts in the wrong area.    Building community through shared interests, that's what I'm trying to do a bit, and also incorporate student involvement; use your resources. With Mission SPEAK we really are trying to build community through shared interests. It's really neat to see how this unfolds. Even when you have a person with a communication impairment or a person with aphasia, who is maybe 30 years older than the student that they're meeting with, there are shared interests. And it's so neat, what they learn from each other and how this partnership grows, and this friendship grows. Then you also have peers, folks who have acquired communication impairments that are close in age with our students, and that takes on a life of its own as well. Try to match people up based on shared interests, or at least having someone that is really eager to learn. Also being open. Building community through shared interests supports what we've done with yoga. Here are folks that are finding peace and community and enjoying this activity together. It could be anything doesn't have to be yoga.   One other is interdisciplinary practices. When we're thinking about our friends with aphasia, not just thinking about the aphasia or stroke, when we're working with our more acute care friends, or those that are still on that rehabilitation trajectory. Stroke Survivors are dealing with more than aphasia, and I think sometimes we can lose sight of that. Making sure that there is an interdisciplinary team or you're offering interdisciplinary supports, asking what else do they need. I find that I've learned so much from my colleagues in physical therapy and occupational therapy. I work closely with an assistive technology professional who has just unlocked for me the world of supports that are out there that help people live well with aphasia, and also with hemiparesis. Supports such as for cooking with hemiparesis, supports for a computer adapted need, supports many things, such as positioning, seating, getting out there and playing sports, again, in an adaptive community. There are so many things that have happened, I think, over the last decade to make things more accessible for people post stroke. Educate yourself on what's out there.   Janet: Those are great ideas. Thank you so very much. And thank you, Lauren, again for taking the time to speak with me today about the Tavistock Distinguished Scholar Award, and about your work in aphasia.   Lauren: Thank you very much for having me.   Janet: You are so welcome.    I would also like to thank our listeners for supporting Aphasia Access Conversations by listening to our podcasts. For references and resources mentioned in today's show, please see our show notes. They are available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, please email us at info@aphasiaaccess.org. For Aphasia Access Conversations, I am Janet Patterson, and thank you again for your ongoing support of Aphasia Access.   Lauren, thank you for being with me today and congratulations on being named a Tavistock Distinguished Scholar on behalf of Aphasia Access and the Tavistock Trust. I look forward to learning about your future accomplishments, and seeing how you help people with aphasia and apraxia of speech on their journey of life. References   Madden, E. B., Therrien, M., Bislick, L., Wallace, S. E., Goff-Albritton, R., Vilfort-Garces, A., Constantino, C. & Graven, L. (2023). Caregiving and friendship: Perspectives from care partners of people with aphasia. Topics in Language Disorders, 43(1), 57-75. https://doi.org/10.1097/TLD.0000000000000301    Therrien, M.C., Madden, E.B., Bislick, L. & Wallace, S.E. (2021). Aphasia and friendship: The role and perspectives of Speech-Language Pathologists. American Journal of Speech-Language Pathology, 30(5), 2228-2240. https://doi.org/10.1044/2021_AJSLP-20-00370  Resources   Aphasia Recovery Connection (ARC)        https://aphasiarecoveryconnection.org  Aphasia and Related Conditions Research Lab and Mission SPEAK https://healthprofessions.ucf.edu/communication-sciences-disorders/aphasia-and-related-conditions-research-lab/  Project Bridge     Project Bridge - Research Community in Communication Disorders

In the 51st episode of the #RehabCast, our host Dr. Bill Niehaus first meets with Maheen M. Adamson, PhD, MHL to discuss A Vision Neuroscience-Based Communication & Detection Solution for “The Speechless” (https://acrm.org/acrm-communities/technology/launchpad/acrm-launchpad-2023-winners/). Dr Niehaus then welcomes Anne Deutsch PhD, RN, CRRN and Raj Kumar PhD MPH to look into Trends in the Characteristics and Outcomes of Older Medicare Patients with Traumatic Brain Injury Treated in Inpatient Rehabilitation Facilities: 2013 to 2018 (https://doi.org/10.1016/j.apmr.2024.02.716).

Guest: Michelle Armour, MS, CCC-SLP - Michelle joins us for this one-hour podcast to discuss an Intensive Comprehensive Aphasia Program (ICAP). She draws upon her experience to review the evolution and structure of ICAPs. She explains how to incorporate the Life Participation Approach to Aphasia in an ICAP setting. Michelle discusses useful outcome measurements and resources. For SLPs considering an ICAP, you won't want to miss this episode!

Aphasia is by Mark Applebaum   Mark Applebaum is a musical inventor whose music combines the unrelenting rigor of post-war European Modernism with ridiculousness and whimsy borne of zooming obsessively and exactingly close to the mundane. Mike and Mike break down how they learned Mark Applebaum's iconic solo work *Aphasia.* “Eat sandwich,” “smell grapefruit,” “open beer,” “close window,” “fasten seatbelt”!   Topics include: - Prior experience with Applebaum's music - Practicing slow and fast - Memorizing new repertoire - Being specific in theatrical repertoire   Mike C's video of Aphasia with Four/Ten Media https://www.youtube.com/watch?v=B2YLoqIYEUI   MikeDrop is Mikes Compitello and Truesdell

June is aphasia awareness month! In this episode the Slow Road to Better crew talk about what no one told them, what they think helps survivors become thrivers and randomly about showers! Go figure.

Join host Sarah Launchbaugh and special guest Jami Harl as they discuss speech-language pathologists' role in Aphasia treatment and advocacy. DISCLAIMER - The content of Studio 151 podcast and TU Communication Disorders Connection podcast do not represent the views and beliefs of The University of Tulsa and the Mary K. Chapman Center

There are about 15 million people in this world having thoughts and ideas that they can't put into words. People who have had had strokes or traumatic brain injuries often live with aphasia, or difficulty talking or using language. Their thoughts are intact, but the language gets stuck. But music mostly originates in the undamaged hemisphere of the brain. People with aphasia can often sing. This is a story about a choir comprised of people with aphasia, and what it's like to struggle for words.The Aphasia Choir of Vermont

Discourse-level treatments for aphasia that show promise in improving word and sentence production in discourse have recently emerged in the aphasia research literature (Dipper et al., 2021). By focusing on both microstructure (the specific words, phrases, and sentences used in the discourse) and macrostructure (the organization of the discourse as a whole), discourse-level treatments aim to help clients with aphasia speak more fully in everyday life (Armstrong, 2000; Dipper et al., 2021). This resource is an intermediate-level resource for speech-language pathologists who are interested in learning more about discourse-level treatment and highlights a variety of discourse-level treatment approaches that clinicians may consider when working with clients with aphasia. Members – Get access to the PDF Handout for this resource here: https://medslpcollective.com/discourse-level-treatment-for-aphasia Get access to the PDF for this resource and other resources and Continuing Education Courses with a MedSLP Collective Membership! https://medslpcollective.com The post Discourse Level Treatment for Aphasia appeared first on The MedSLP Collective Podcast.

In recognition of Aphasia Awareness Month, we knew June would be the perfect time to focus on aphasia. So today Mai Ling chats with Dr. Anthony Kong, an expert on aphasia with an emphasis on aphasia among speakers of Chinese languages. Anthony begins by sharing a bit about what aphasia is and then goes deeper into how the specific elements of Asian languages can cause aphasia to be even more pronounced in speakers of those languages. He also talks about why he felt he needed to focus specifically on aphasia in Chinese speakers as well as some tips on how you can effectively blaze a trail in an underserved area yourself.

Guest: Michelle Armour, MS, CCC-SLP - Michelle joins Keys for SLPs to share her journey developing a Life Participation Approach to Aphasia program that inspired her to gather qualitative measures that support evidence-based practice with aphasia groups. She draws on her years of experience working with people with neurogenic communication disorders across settings to describe a program that maximizes life participation. She offers participants key components of a successful group program with LPAA. Michelle Armour shares outcome measures highlighting how aphasia groups improve life participation and support evidence-based practice.

Also on Arizona Spotlight: Richard Davis remembes growing up in Tucson's Black community; learn about Aphasia, and a place in Tucson offering friendship and support for those living with it; and go storm chasing with "Stories That Soar!"

SERIES 2 EPISODE 183: COUNTDOWN WITH KEITH OLBERMANN A-Block (1:44) SPECIAL COMMENT: Today would be a good day to convict Donald J. Trump. The jury in his Stormy Daniels Hush Money/Election Interference case may get the case as soon as this afternoon and then they could deliver the only verdict not materially interfered with by a judge – or JUDGES – that Trump himself appointed. The country, the world, keeps emphasizing in succession the unprecedented nature of Trump's indictment, arrest, arraignment, mugshot, trial, artist sketch, jury selection, defense, witnesses, objections, fart-naps and today, closing statements… but for some reason they leave the other unprecedented reality OUT – that our court system IS rigged, that it IS rigged, BY Trump, FOR Trump, with three judges HE put on the Supreme Court until they die or resign delaying and subverting justice in THOSE cases, and an unqualified former Yoga Correspondent for the Miami Neuvo Herald he appointed to FEDERAL Court brazenly and openly stalling and trying to SABOTAGE the espionage case against him in THAT case. THAT is what is unprecedented about the prosecution of Donald Trump. THAT his appointees are interfering with the attempts to bring him to justice and we may never know if he appointed them only on the assurance that they would do EXACTLY what they are doing now when and if it came to this… and what Trump means when he says the New York District Attorney Alvin Bragg's office and Justice Juan Merchan's courtroom are rigged against him – what he MEANS is… they are NOT rigged for him. I'll look at the legal stuff as the case moves inexorably towards the jury. ALSO: We get comic relief from the Libertarian Party (Trump came close to - in an Aphasia haze - calling them The Libyan Party) and we find out that The Washington Post was good enough to sit on the Alito Flag story for just 1,222 days (the final nine AFTER The New York Times had already broken it) and wouldn't even run it even on the soft premise that it really WAS Martha-Ann Alito's dispute with the neighbors.  I will sing about it. B-Block (29:47) SPORTSCENTERCENTRAL: In memory of perhaps the most beloved man in sports: Bill Walton. Everyone has their Bill Walton story, I'll tell you mine. (36:07) THE WORST PERSONS IN THE WORLD: Rishi Sunak's campaign handlers clearly want him to lose reelection in the UK. Nick Fuentes complains J.D. Vance isn't white enough (never realizing that none of the Trumpist really think anybody named 'Fuentes' could be white). And Fred Trump praised Hitler? I heard it on C-SPAN! C-Block (43:35) THINGS I PROMISED NOT TO TELL: 45 long years ago today I shocked my professors and relieved my suspicious parents by graduating from Cornell University. And I've had the dream where I DON'T graduate an average of once a week every year since. It used to be a stress dream. Lately it's turned into an amazing revelation about how your mind really works (or at least: how mine does).See omnystudio.com/listener for privacy information.

Dr. Janet Patterson: Welcome to this Aphasia Access Aphasia Conversations Podcast, a series of conversations about aphasia, the LPAA model, and aphasia programs that follow this model. My name is Janet Patterson. I am a Research Speech-Language Pathologist at the VA Northern California Healthcare System in Martinez, California, and a member of the Aphasia Access Conversations Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their efforts in engaging with persons with aphasia and their families through a variety of educational materials and resources. I am the host for our episode that will feature Robin Pollens, in which you will hear about the transformative power of mentoring. These Show Notes accompany the conversation with Robin but are not a verbatim transcript.   In this episode you will hear about: 1. the presentation of the Aphasia Access, Sandra O. Glista Excellence in Mentoring award to Robin Pollens, 2. stories about mentoring from Robin's career as a speech-language pathologist, and 3. the power of a mentoring relationship to affect the relationship with people whom you mentor, from whom you receive mentoring, and with whom you share mentoring opportunities.   I am delighted to be speaking with my dear friend and longtime LPAA colleague, Robin Pollens. Robin is an ASHA certified speech language pathologist and held the positions of adjunct assistant professor in the Department of Speech, Language and Hearing Sciences at Western Michigan University, and clinical supervisor and coordinator in the Aphasia Communication Enhancement program. She also provided clinical speech-language pathology services through home health, and skilled nursing outpatient clinics.   In addition to her focus on LPAA, Robin is passionate about graduate education in speech-language pathology, palliative care, interprofessional collaboration and ethics, and has written and lectured nationally and internationally on these topics.  In 2023 Robin was awarded the Sandra O. Glista Excellence in Mentoring award from Aphasia Access. 2023 marks the inaugural award given to both Robin and Leora Cherney from the Shirley Ryan Ability Lab in Chicago. The “Sandy” is awarded by Aphasia Access and recognizes an exceptional mentor who has demonstrated unwavering commitment, unparalleled guidance, and profound impact on the professional and personal development of others working in the aphasia community. The award is named in honor of Sandy Glista, one of the founders of Aphasia Access, and is a testament to her enduring legacy, and a reminder of the transformative power of mentorship.   Welcome Robin, to this edition of Aphasia Access conversations. Ms. Robin Pollens: Janet, thank you. Thank you so much for all that intro, and it's nice to be here to talk with you today. I want to also right now, thank Aphasia Access for this honor. It was especially meaningful, towards the end of my career, to receive a mentorship award and to hope there's something that I did, or I said, or I wrote over the years that was meaningful to somebody else. I also appreciate that I'm sharing this inaugural award with a wonderful friend, Leora Cherney, and that this award is named for my close friend and collaborative partner, Sandra Glista. It's a real honor to have received it and an honor to talk with you today, Janet. Janet: The feeling is mutual about talking with you, Robin, and the honor is certainly well deserved. Robin, as I mentioned earlier, you were honored with the Sandra O. Glista Excellence in Mentoring award. This award recognizes your commitment to mentoring individuals who are part of the aphasia community, including clinicians, researchers, persons with aphasia, and their care partners, students and others. Through Sandy Glista and this award, we are reminded of the transformative power of mentoring. Robin, how do you envision the value of mentoring to individuals and to the Aphasia community?  Robin: When I received this award, it set me on the road to reminiscence. I remember being in, I think, undergrad, studying Speech and Hearing Sciences and I had not yet done any clinical work. I had the opportunity to sit and observe a grad student doing an aphasia assessment with a patient. I was sitting behind this two-way mirror and I'm watching, and my mind is going, “okay, she holds up this card; and then she writes something down; and then she has someone point.” That's what my mind was doing. Sitting behind the two-way mirror with me happened to be a visiting professor from Australia named Anne. She turned to me and said, “Look at all of that empathy”. And I went, in my mind, “Empathy, what does that have to do with it?” Then I looked through the mirror, and I saw that this grad student was talking softly and looking kindly in her eyes, and kind of patting the client when she got frustrated. I thought, “Oh, I guess that's part of this.” So I'm thankful for her (Anne) and I feel like she was my first mentor. She only said one sentence to me, but it set me on a path for what it means to be an SLP. I know that recently, like in the last five years, there's been more discussion in our field about the importance of counseling, and mental health and people with aphasia. When I would be watching a grad student doing therapy, and I'm supervising, sometimes I would see them having what I would call a counseling moment. I would make sure to let them know later, saying perhaps, “I saw when the patient was frustrated, you stopped the task and you talked with them kindly. They told you about some things that were happening, and you gave an empathic comment.” This is the way that I think about mentoring, that it's a pathway to learning or growth that comes out of your own experience, and then it goes on to others and recreates. I can go on and on with stories.         Janet: Please do tell stories, Robin, because I'm fascinated by stories. I have another question though, Robin, as you continue to tell me your stories, you've led right into the question that's on my mind. People may think of mentoring as one way, such as the experience that you had sitting behind the mirror and watching the graduate student. I see mentoring as an interactive relationship that goes multiple ways. I would love to hear more of your stories and learn about your thoughts about interactive mentorship. Does that make sense to you?  Robin: Yes, I do like that framework that you just said, Janet. And when I knew I was going to be doing this discussion with you today, of course, I went online, and I looked up mentoring to see what kind of definitions I might find. I actually found a website that I liked; it was Art of Mentoring. The definition for mentor they used was a coach, a connector, or even a challenger to help their mentees reach their full potential. The mentee will lead the relationship, inviting the mentor into their own inner dialogue to assist in working through, and I really liked that. I think that's ideally how the relationship can work. So, for example, when I was supervising the students in the ACE program, when it got to be in the middle of the semester, we would have a midterm conference and I would always say, “Tell me about your goals for yourself for the rest of this semester, how would you like me to help you?” The answers were so varied, there were some people that were very focused on the clinical learning tasks, they might say something like, I'm having trouble being in the conversation and keeping track of data, or this patient's talking so much, I don't know how to navigate the session to get everyone involved. So, there were clinical skills. Whereas there were other people that would say something like, I get so anxious before the session, I'm so nervous, it takes me a while after I met it to really be able to focus on what's happening. Those are two very different kinds of goals, and I wouldn't have known as their supervisor and mentor for that situation if I hadn't asked, and if they hadn't, let me know. So, I do think that that's important. I also think sometimes we have to seek out our own mentors; that's part of the relationship. In the beginning of my career when I was in my clinical fellowship year, I didn't have one of these strong clinical fellowship, amazing experiences that some people did, I was in a public school, and I had someone who was my supervisor. During that time, I was able to get a position in a different city, working in the hospitals, and another supervisor agreed to keep following me as the supervisor. In the hospital, I had some new patients that had had injuries, and I wasn't sure what to do. My supervisor didn't know anything about that, and I ended up going to a conference in Braintree, Massachusetts, and they were talking about this new thing called Rancho Los Amigos Scale, and I learned about it and brought it back. Sometimes throughout our careers, I think you need to actively seek out a mentor. I think I remember that Aphasia Access started a program where if you wanted to be a mentor, or you have a mentor, you can let them know; I think that's great, because there's always things that go on as your career continues that you may want to get some guidance for. Janet: What I'm hearing you say, Robin, if I can paraphrase your words, is as an individual, a good thing is for one to be open to mentoring opportunities, whether you provide them or acknowledge them, when you see a student or a colleague performing in an empathetic manner, or for your own self seeking out someone to give you assistance. The mentoring could be a large role, such as in a CFY, or a lengthy one such as a  two- or three-year relationship, or it could be a very short-term kind of mentorship. This seems to me to be what you're saying, make yourself open to learning and interacting with all sorts of people, because they can have an influence on your life, and presumably, you on theirs as well.  Robin: You summarized that great Janet. Yes, and I know that when I was working in home care quite a long time ago, I remember feeling in awe of the family members, the amount of care and the total concern, and they modified their life to care for their loved one. All of a sudden, I remember that feeling, and then fast forward two decades later, when some of my family members had illness, and I was in that role. I was drawing upon what I learned from them, which in turn, I share with our families of the people with aphasia when they're having medical situations. So hopefully, we're just all doing this for each other, throughout our lives.   Janet: What's the phrase “together, we're more powerful”, that's not it exactly, but our thinking together and the little pieces of information about mentorship or actions about mentorship, that you can recall from 15 or 20 years ago, that can help you today, are just as important as the word someone says to you this afternoon, about how you can be a better clinician, or you can give guidance to someone who is seeking it from you. Exactly. Robin, in your position at Western Michigan University, I know you have mentored numerous students, and we could probably talk for months or years about wonderful stories. Some of them, most of them, I'm sure are successful, but there probably were a few that were less successful mentorship relationships. I know that you've mentored students, what I'm interested in learning from you is have you also mentored persons with aphasia or their care partners?   Robin: Yes, and I think there are different ways to mentor somebody with aphasia. I think the piece of it I'm going to pick up on has to do with helping them express their identity, helping them to reach their level. And again, I think for me, the roots of it came actually long before I knew about Life Participation Approach to Aphasia, it wasn't really articulated yet. I remember working in home care with a woman in her 40s. She had her stroke, and she had severe aphasia. But also, all of a sudden, she could no longer work as a crossing guard. That was her work, as a crossing guard for the elementary school. She also was no longer part of her caring circle at church, she was the one that greeted people, and sent get-well cards. I think that one really struck me because I was also on the caring circle at my temple. So, we ended up in therapy focusing on reading and writing, but in the context of being able to write sympathy or get-well cards. She made a dictionary of phrases you could write and things like that. So, fast forward to being in the ACE program, which was created by myself and Sandra Glista, to be a place where goals were addressed, not only the impairment level, but also the participation level, and there's certainly countless examples there I can think of, even from way back in the beginning, because it's in the article that we wrote. There was an organization in our city called Senior Corps, and it's actually in many states still. We trained some of the volunteers to communicate with people with aphasia, and then matched them with some of our people with something they wanted to do. So, one of the people ended up being, with his conversation partner, part of a bowling league, an accessible bowling league. He was young, he'd always been in sports, and he was just sitting home so that was his identity. Another person was matched with a woman who ended up going into a first-grade art class in elementary school once a week and helping out in that art program with her conversation partner. So, these were things that we started saying, we're working on communication, but we're also in some way guiding them towards a meaningful and participatory life. So that's one way, I hope that I've been a mentor for some people with aphasia. Janet: I bet you have been a mentor for a lot of people with aphasia, because I can just visualize you thinking, and tapping into all the information from your former mentors, as you try to find ways to help an individual with aphasia, and his or her care partner or friend, take that step to being able to do whatever it is that they'd like to do, as well as they can possibly do it. I'm glad that you've had all these mentoring opportunities, and I think you're a leader in this field.   Robin: Thank you, Janet. I'd also say I think a way to be a mentor with someone with aphasia is also just having an authentic relationship with them, when their communication changes so much and people don't know how to communicate with them, and they don't know how to communicate with others. Being someone that they know they can talk with, they can relate with and laugh with, I think that in and of itself is a valuable way for interacting with somebody who has a sudden change in their communication.   Janet: You're talking about accepting someone for who they are, meeting them where they are, and together, you have a relationship that is built on trust, so that that individual would be more willing to accept from you, ideas that you suggest. They may be wacky ideas at the moment, but they certainly work in the long run. That relationship helps you both accept information from each other. I'm really curious, you've told us several stories about mentoring, and we'd love to hear many, many more. Can you think of a favorite mentoring experience you've had in some part of your career? Tell us one about one of those.   Robin: Sure, I'll name the one that I just got to go through. That was mentoring the next coordinator of the Aphasia communication Enhancement Program, which is Alison Mezcal. I had the great pleasure to stay for a semester while she was there, and we were able to do all of the coordinating. I already knew that she was a great clinician, she already knew the ACE program, she had been our student 10 years before. But the coordination piece, which is scheduling, and contacting people and planning, and all that would be new. So, we got to do it together over the semester and that was so satisfying to be able to do that. I also literally cleaned out the office and all the files and all the things so that it was ready for the next person. I know many people don't get to leave their position with the opportunity to do that, to directly mentor the next person, and it was a great pleasure. Janet, on the mentoring website, they talked about their logo, and it was two geese flying in, here's what they said, “The geese at the front of the flock improve the aerodynamics to make it easier for the followers to fly; the geese at the back honk to encourage the front geese to keep pushing forward.” And they are constantly shifting position, meaning the mentor could be leading from behind or in front, and sometimes just flying alongside. And that's what I had the opportunity to do with Allison. So that was a great pleasure.   Janet: That was a great story, Robin. I just imagine the warmth it brought to your heart as you watch this living thing that you and Sandy created many years ago, move on to the next generation. But you know, I thought about something else, too, that this is part of, I think, what might be thoughts that a mentor has to consider. So, you've invested a lot in your ACE program, quite a bit over the years, and your heart and soul are in that, and you have mentored the next generation beautifully. But now you have to step aside. The next generation may have different ideas or may take it in a slightly different way, or may do things that you never even thought about. So, part of what a mentor has to do I would imagine, is also take a deep breath and know that you've done the best job you can. But then step aside and maybe your job now is to be at the back of that flock of geese and keep honking as the program moves forward under a new leader and a new director.   Robin: Excellent. Yes, and that's very fun. I have great confidence and hope, and in a couple of weeks Alison and I are meeting for coffee, and I want to sit back and just hear all about the things that she's creating.   Janet: That's wonderful. You are indeed a wonderful mentor, Robin, you've been a great mentor to me over the years, sometimes you knew it, sometimes you didn't, as a result of the conversations we've had, and through the different projects that we've done over the years. Let me turn to a slightly different topic now. We've mentioned this a couple of times already, that for many years you worked with Sandy Glista, who is a dear friend to both of us. I believe that being honored through this award, receiving the “Sandy”, it must bring warm thoughts of your days working together. Please tell our listeners about how Sandy's friendship and collegiality have influenced you during your career.   Robin: I would say in the beginning, which would be the late 1990s, I'd say Sandy initially was a mentor, the kind of mentor that many people spoke about. In this regard, she was a connector, she connected people together. Well, she connected me to you, Janet, when you and myself and Ellen and Glenn did a project years ago on Cybersafety for people with aphasia. I was doing homecare and Sandy was working on a project with keeping elders communicating. She invited me to be involved in this project and start having some Western students intern with me. Then she invited me to do a presentation on a topic she was starting out investigating, interprofessional education, which was a new thing. We were in a college, and we had OT and social work and all the different disciplines together. They did a presentation, I brought in my team, my home care, OT PT, social work team, and we proudly presented a case. It was after that, that she was going to be going on sabbatical and she asked me if I would take her place in working with people with aphasia at Western, and that's when I began actually working at Western, in 2002. Once she came back, we started talking, and creating and planning this new version of an aphasia program and for a couple of decades, we were collaborative partners. We would add to each other, fit to each other, enjoy being together, and have a wonderful creative experience, creating these ideas that we had and seeing them happen. If we did anything such as write something or present something, it was always Sandy Glista and Robin Pollens, or Robin Pollens and Sandy Glista, whether they were even present or not, because the ideas germinated from both of us. So, if you ever have the opportunity to have a work relationship like that, it's a real gift.   Janet: Our listeners can hear, I hope, the joy in your voice, as you're talking about that relationship you had with Sandy. I know that was a very special relationship for the two of you. I can see because I'm looking at your face right now, I can see the joy in your face. Recalling the close times and close work that you and Sandy had together, I'm sure that there were some disagreements or seeing things from different perspectives, but your last statement saying that it was a wonderful working relationship and you you'd like to see everyone have that kind of close, creative relationship, is admirable. So, thank you for that insight. Robin. I'm also wondering who were some of the mentors that you and Sandy drew upon? Robin: When Sandy went on sabbatical, she visited national and international aphasia centers, and she brought back the inspiration and the sense of community that she experienced there. I was reading the World Health Organization ICF with its impairment, activity, and participation parameters, and I could envision how we could use this concept to create goals for clients, and to create participation groups where clients could work on their impairment-based goals in the context of an activity of choice. Sandy and I studied relationship centered care, which came out of the Fetzer Institute here in Kalamazoo, and we envisioned a program where family members or care partners were part of the mission of a program. Finally, in our collaboration, we created a sequential way to educate the students through the semester to be able to provide this type of SLP treatment. On the first page of the article we published in 2007, you'll see a long list of people who inspired us. Those were ACE program mentors and as ACE continued, Elizabeth Nadler, Marie Koss-Ryan and Suma Devanga added their creativity supervisors. And I would add that once Aphasia Access was formed, there were many people in Aphasia Access, who became our collaborative mentors. So, thank you to everyone.   Janet: Robin, you said something about interprofessional education and interprofessional practice, and it kind of got lost in a sentence, and I'd like to circle back to that and acknowledge that you and Sandy were visionaries in this area. Nobody else was talking about interprofessional practice, or publishing about it, or making it happen. You and Sandy were at the forefront of that.  I remember those papers that you wrote, talking about the value that each one of the rehab professionals could bring to the treatment of the patient and how they we can all reinforce the goals for the patient, the various goals. So, we all owe you a debt of thanks for that, as well.   Robin: I didn't realize that was that different. I just realized that we had the opportunity since we were at Western and there were the other professionals there, that each semester, we ended up creatively finding ways to coordinate with OT, or bring in a social worker or whatever it was. I have enjoyed watching the growth of this area of interprofessional over the last years and seeing how it's appreciated.   Janet: I think it's very important. A previous Aphasia Access Podcast, #84, was with Mary Purdy, who talked about interprofessional collaboration and related a specific story where she and a physical therapist work together to achieve the particular goal of one of their clients. Another podcast, #78, with Michelle Gravier, Albert Mendoza, and Jennifer Sherwood described an interprofessional exercise program. I'm so glad that there is a greater appreciation for interprofessional education and interprofessional practice these days. So, Robin, as we bring this conversation to a close with thoughts, or as I like to call them Monday Morning Practices, do you have ideas that you could share with our listeners, things that they might either think about in the long term, or that they might do on Monday morning when they see their clients?   Robin: Well, I almost feel teary as I'm answering this, but I'm going to work through this teariness. I'm thinking about beginnings. And I'm thinking about endings. And so, I'm thinking about making sure that in the beginning, if someone's in the hospital and has new stroke or new aphasia, whatever it is, that you are giving them hope, as described as important in the article way back by Avent, Glista and others, and I can't talk without giving a story, Janet. I'm remembering in homecare, seeing a new patient with severe aphasia, not much talking. The wife left the room while I was in the session, and I noticed a deer's head on the wall. So, I took out a piece of paper and I wrote down some written word choices, you know, baking, gardening, hunting, whatever. I said, “Tell me, I want to learn about you.” And he pointed to hunting, so we ended up having the whole conversation using supportive communication strategies and written words. At the end of the almost hour, his wife came in the room, and I said to her, “Oh, I just was hearing about the time that he and his brothers went up hunting up by Lake Michigan, and they had that rainstorm, and then the roof was leaking.” She looked at me and said, “How did he tell you that?” So, I took out the piece of paper, and I showed her our conversation, basically, with words and drawings. He had already gone through acute care, and inpatient rehab so I said to her, “Didn't anybody show you this along the way?” And she said, “No.” So that's one of the messages that I often like to express - the importance in the beginning of giving the family a method to be able to communicate because that's a way of giving hope. I can also quote another colleague of mine, Marie Koss-Ryan, who did some acute care pretty recently: same thing - she went in the room, new stroke, new severe aphasia. He was trying to read his menu to order breakfast and couldn't do it. So, she took out her iPad, pulled up a page of juices, and said,” What kind of juice do you like?” and he pointed to tomato juice. A little while later the tray came and then his wife came for the day visit and she saw the tomato juice, and she burst into tears? Marie asked what was wrong, and she said, “How did somebody know he drinks tomato juice every morning for breakfast.” She took out her iPad and showed her how you can pull up pictures. To me that's giving hope through a way to communicate. So that's the piece from the beginning. And I can't help but mention just briefly, to also remember if you are working in palliative care and end of life care, to also show up as a speech-language pathologist that can help people to be able to communicate as best as they can, even if it is at the end of their life.   Janet: Those are, are very important points, I think, to start us off to remember the power of communication. And then also to know that there are lots of messages people wish to convey towards the end of their lives. How can we help them convey those messages? Robin, this has been an amazing conversation. And I know that you and I will have many more opportunities to talk to each other. I just wish we had many more days right now to listen to the stories and share the thinking and the insights and the bits of mentorship we have received from each other and from people in our clinical worlds. So, thank you so much for speaking with me today. I am proud to call you my friend and my colleague, and again, congratulations on receiving the Sandra O. Glista Excellence in Mentoring award. I know Robin, that when I asked you to be interviewed for this podcast, you were initially reluctant, as is your style. I'm so glad that you finally agreed because the messages that I'm hearing in our chat today, they're far beyond you and me. They're about the power, the transformative power, of mentoring, no matter who you are, or who you mentor. So, I thank you, and on behalf of Aphasia Access, I want you to know how humbled I am by your long-standing commitment to mentoring. I believe that even though you are retired from Western Michigan University, you have many future mentees that will also be humbled by your long-standing commitment to aphasia, to people with aphasia, to their care partners, and to mentoring.   Robin: Thank you, Janet. Thank you very much. And I guess I will say this ended up being a gift that you gave me to be able to do this. I mean, we should all do it for each other to give them a chance to reminisce and tell their story and get perspective and life. So, thank you.   Janet: You are more than welcome, Robin. I would also like to thank our listeners for supporting Aphasia Access Conversations by listening to our podcasts. For references and resources mentioned in today's show please see our Show Notes. They are available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, please email us at info@aphasiaaccess.org. For Aphasia Access Conversations, and again thanking you Robin Pollens, I am Janet Patterson and I thank you all for your ongoing support of Aphasia Access.                           To engage in further conversation about mentoring, Robin can be reached at robinpollensslp@gmail.com     Reference List APPENDIX B: Rancho Los Amigos Scale-Revised. (2011). Continuum (Minneapolis, Minn.), 17(3 Neurorehabilitation), 646–648. https://doi.org/10.1212/01.CON.0000399079.30556.03   Avent, J., Glista, S., Wallace, S., Jackson, J., Nishioka, J., & Yip, W. (2005). Family information needs about aphasia. Aphasiology, 19(3–5), 365–375. https://doi.org/10.1080/02687030444000813   Glista, S.O. & Pollens, R.D. (2007).  Educating clinicians for meaningful, relevant, and purposeful aphasia group therapy. Topics in Language Disorders 27(4), 351-371. https://doi.org/10.1097/01.TLD.0000299889.62358.6f   Pollens R. (2003). Home care. Hom Healthcare Nurse, 21(5), 348. https://doi.org/10.1097/00004045-200305000-00015   Pollens, R.D. (2020). Facilitating client ability to communicate in palliative end-of-life care: Impact of speech–language pathologists. Topics in Language Disorders 40(3), 264-277. https://doi.org/10.1097/TLD.0000000000000220     URL The Art of Mentoring    https://artofmentoring.net/what-is-mentoring/   Aphasia Communication Enhancement Program, Western Michigan University https://wmich.edu/unifiedclinics/vanriper/aphasia   Fetzer Institute       https://fetzer.org/   Aphasia Access Podcast Conversation #84 Interprofessional Practice and Interprofessional Education: In Conversation with Mary Purdy https://aphasiaaccess.libsyn.com/interprofessional-practice-and-interprofessional-education-in-conversation-with-mary-purdy   Aphasia Access Podcast Conversation #78 A Llama, a Resistance Band, and Neil Diamond Walk Into a Bar - An Interprofessional Exercise Program for Individuals with Aphasia: A Conversation with Michelle Gravier, Albert Mendoza, and Jennifer Sherwood       https://aphasiaaccess.libsyn.com/a-llama-a-resistance-band-and-neil-diamond-walk-into-a-bar-an-interprofessional-exercise-program-for-individuals-with-aphasia-a-conversation-with-michelle-gravier-albert-mendoza-and-jennifer-sherwood

Dr Margaret Moore is fascinated by our most mysterious organ - the brain. By looking at stroke survivors, she is trying to understand how brains work, how they don't, and how they predict the world around them

This episode, and the next couple of episodes, are about word games! Today, Joshua Blackburn recounts how his sons' uninspiring English homework led to him inventing the language quiz game League of the Lexicon; and Kathryn Hymes and Hakan Seyalıoğlu of Thorny Games explain how they make topics like language loss and deciphering alien language into creative play. Get the transcript of this episode, and find links to more information about the topics therein, at theallusionist.org/wordplay2. Word Play part 1, featuring Leslie Scott from Oxford Games, is nine years down your podfeed. This episode was produced by me, Helen Zaltzman, with Martin Austwick of palebirdmusic.com. We'll be playing a space-themed show in the planetarium at the H.R. MacMillan Space Centre in Vancouver BC on 18 April 2024; get tickets via theallusionist.org/events. Become a member of the Allusioverse at theallusionist.org/donate and as well as keeping this independent podcast going, you get regular livestreams, insight into the making of this show, and watchalong parties - AND to hang out with your fellow Allusionauts in our delightful Discord community, where I am posting all my best/worst portmanteaus and portmantNOs. The Allusionist's online home is theallusionist.org. Stay in touch via facebook.com/allusionistshow, instagram.com/allusionistshow, youtube.com/allusionistshow, twitter.com/allusionistshow etc. Our ad partner is Multitude. If you want me to talk lovingly and winningly about your product or thing on the show in 2024, sponsor an episode: contact Multitude at multitude.productions/ads. This episode is sponsored by: • Squarespace, your one-stop shop for building and running your online empire. Go to squarespace.com/allusionist for a free 2-week trial, and get 10 percent off your first purchase of a website or domain with the code allusionist. • Babbel, the language-learning app designed by real people for real conversations. Get up to 60% off your Babbel subscription at Babbel.com/allusionist.• Wildgrain, the subscription box for sourdough breads, fresh pastas, and artisanal pastries that you can cook from frozen in 25 minutes. Get $30 off your first box, PLUS free croissants in every box, when you start your subscription at Wildgrain.com/allusionist or use promo code ALLUSIONIST at checkout.• HomeChef, meal kits that fit your needs. For a limited time, HomeChef is offering Allusionist listeners 18 free meals, plus free shipping on your first box, and free dessert for life, at HomeChef.com/allusionist.Support the show: http://patreon.com/allusionistSee omnystudio.com/listener for privacy information.

  Show Notes - Episode Next STEPS: In conversation with Professor Ian Kneebone 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, 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 Professor Ian Kneebone from the University of Sydney Technology.  Biosketch: Ian Kneebone Professor and Head of Discipline (Clinical Psychology) at the Graduate School of Health at the University of Technology Sydney. He is a chief investigator at the Aphasia CRE and has led and co-facilitated much of the work on optimizing mental health and wellbeing for individuals with aphasia. His work on illuminating the stepped care model as a guide for clinicians working with individuals with stroke has helped speech-language therapists and other rehabilitation disciplines to better understand their roles in psychological care after stroke and specifically aphasia. He previously joined the Aphasia Access Conversations Podcast with me for Episode #34. We're excited to have Ian joining us again, as so much work has taken place in the area of psychological and psychosocial interventions for individuals with aphasia in the past five years since that previous podcast conversation. Professor Kneebone and his colleagues have been at the center of that work, including developing and evaluating the ASK trial, the Kalmer relaxation program, collaborative goal setting, Reducing Emotional Distress in Stroke (REDS)and low intensity psychotherapeutic interventions, among others. In addition to Professor Kneebone's large-scale investigations about psychological interventions, Ian is a clinician at heart, also very engaged in hands-on clinical work, where he directly collaborates with speech-language pathologists and other disciplines. I'm privileged to discuss these topics with Ian today. Take aways: Need for psychological care for people with aphasia: People with aphasia have higher rates of depression, anxiety, and other psychological needs. People with aphasia are twice as likely to be anxious or depressed as someone with a stroke without aphasia. Stepped care model provides direction: The stepped care model helps us to define scope of practice and where we fit in, based upon our level of training. It also provides guidance for psychological care that all speech-language pathologists/speech-language therapists are trained to implement. Behavioral activation: This is a direct connection to the Life Participation Approach for Aphasia (LPAA). Increasing engagement in personally relevant activities is at the heart of both approaches. Ian discusses where solution-focused brief therapy and acceptance and commitment therapy fit into the stepped care levels: With additional training, good evidence is developing for these approaches. There is a need for ongoing psychological supports in the chronic phase of recovery: Increased mood state is associated with better physical and communication outcomes AND dealing with the physical and communication issues can improve mood state. Shifting to “compensation” can make people with aphasia feel like they're not going to recover further: We need to make sure that we have conversations about those shifts so that people don't misperceive that shift as the end of progress. SLPs/SLTs need to train mental health professionals to use supported communication techniques to support their interactions: SLPs/SLTs may need training on how to teach other disciplines to support communication. People with aphasia should be involved in co-design work to address psychological interventions. From a research perspective, we need to involve people with aphasia and from an intervention standpoint, we need to involve individuals with aphasia.   Interview Transcript: Jerry Hoepner: Today, it's my pleasure to introduce Professor Ian Kneebone. In Kneebone, is professor and head of discipline in clinical psychology at the Graduate School of Health at the University of Technology Sydney. He is a chief investigator at the Aphasia care and has led and co-facilitated much of the work on optimizing mental health and wellbeing for individuals with aphasia. His work on eliminating the step care model as a guide for clinicians working with individuals with stroke has helped speech language pathologist and speech language therapist and other rehabilitation disciplines to better understand their roles in psychological care after stroke, and specifically aphasia. He previously joined the Aphasia access conversations podcast with me for episode 34. We're excited to have Ian joining us again. As so much work has been done and taken place in the area of psychological and psychosocial interventions for individuals with aphasia. In the past five years since that previous podcast conversation, Professor Kneebone and his colleagues have been at the center of that work, including developing and evaluating the Ask trial, the calmer relaxation program, the collaborative goal setting, project and low intensity psychotherapeutic interventions among others. In addition to Professor knee bones, large scale in investigations about psychological interventions, Ian is a clinician at heart, also very engaged in hands on clinical work, where he directly collaborates with speech language pathologist and other disciplines. I'm privileged to discuss these topics with Ian today. I'm excited to dig into this conversation. And I'm really interested in talking a little bit about your perspectives about kind of the intersection of speech language pathology, and psycho psychotherapeutic interventions, psychological care, those big topics in general. And I know that in our past conversations, we've discussed a little bit about just the profound need for psychosocial psychological interventions for individuals with aphasia and the kind of the lack of access to care for mental health providers, to individuals with aphasia. So maybe we can start out a little bit by just sharing your thoughts on the role of speech language pathologists in addressing communication-based psychological supports for individuals with aphasia and their families.   Ian Kneebone: Well I think the first thing is to say that the whole stroke team should take responsibility for psychosocial issues and challenges, both from a prevention point of view, but also an intervention point of view. Where there's the potential to do so. Particularly with people with aphasia, the speech pathologist, or speech language therapist's role is a real standout one. And we know frequently that this work, because of the communication problems, often falls to Speech, Language Therapists to, you know, by their own admission, feeling unprepared to do it. So, I think there's certainly the will there from speech language therapists to be involved in this work, we just need to provide the right training the right scope of practice, and to get things going. So, this this gap in services is filled. You know, you were talking about the rates of psychosocial issues, but we do know that if you've got a stroke, and you've got a phase, you're afterwards, you're twice as likely as someone with without aphasia after a stroke to be anxious or depressed and have very, very high rates. Even clinical levels of depression are common. I guess it's not surprising anyone who works in the area will know that, but it's still very sobering to restate that statistic.   Jerry Hoepner: Yeah, it sure is. Just speaks to the tremendous amount of need and, and obviously, we know the tremendous amount of unmet needs for people with aphasia and their family members as well. Just because of how we're barely scraping the surface of this issue, I think, but making some good progress in those directions, you've done some really foundational work on the Stepped Care Model for stroke and even other populations as well. How can SLPs draw upon that model as a way to help them to understand scope of practice issues, to understand where they fit and kind of guide their interventions?   Ian Kneebone: Well, I think Stepped Care has been really useful. And I've gotten great feedback on this not that I invented step care by any means. But certainly, the improving access to psychological therapies model from the UK started this off in mental health. But the opportunity is to convey and allow people to know where they can work and what's appropriate, and when they might need to refer on or co-work with, with another profession. And the Stepped Care Model really does that. So, people are able to say, Well, I'm involved in this group, it's designed to prevent things like depression and anxiety, which are very common, as we just said, and I'm able to learn these skills or apply these practices to improve outcomes and prevent this. But you know, at some point, when these levels of symptoms of such and particularly questions of risk, risk of self-harm, risk of suicide, those sorts of things, when commonly people would refer on to mental health professionals. And I think the unique ability of speech language therapists to provide supportive communication training for mental health practitioners and so on, means that the role goes beyond just prevention, and to actually intervention. But also, to say that the model where people stepped and matched to the level of care they need, means that, you know, there is a scope of practice beyond prevention for speech language therapists, and that's those therapists who choose to train in psychological practices and psychotherapies. So, we do know, for instance, there's some strong work going on at the City University in London, where they're looking at training Speech, Language Therapists in a particular sort of Solution Focused therapy, which is very well regarded as an evidence base. And that's provided by speech language therapists, with the right training and the right background, to develop the competencies and know how to manage risks, and so on. So, the Step Care Model allows people to see where they're at in terms of their scope of practice, when they're on or when, if they want to, what skills they might need to practice at a at a high level.   Jerry Hoepner: Yeah, that's really well, well explained. And that's actually a really nice segue into my next question, because I know, the Step Care Model that you presented back in 2016 identifies some specific psychological interventions. So, you talk about motivational interviewing, cognitive behavioral therapy and a number of other approaches. I'm just interested is their kind of a plan in mind or a process in mind that will help to identify other interventions and kind of where they fall to give mental health professionals, speech language pathologists, and other disciplines, kind of a sense of where those other interventions fall. So, things like dialectical therapy and so forth?   Ian Kneebone: Well, there's a range of therapies that we've found useful for people with, with mental health problems, and obviously, it's the application of those to people with aphasia that's the point of interest. And we do now have very promising work going on cognitive behavior therapy for people with aphasia, we've just completed a case series, which is just been accepted by Neuropsychological Rehabilitation, looking at modified CBT for people with aphasia, which is really exciting. We're doing stuff on behavioral activation, which is very promising for people with aphasia and relaxation therapy, we've just completed some case series work, looking at that. And that's really exciting because that was co-designed by people with aphasia, and then then then launched based on that very solid foundation. The more interesting or the very interesting work is being done on some of these, what we call third wave Cognitive Behavior therapies, which are things like Dialectical Behavior Therapy and Acceptance and Commitment Therapy, for instance. And a lot of that's been leveraged off the brain, the general brain injury literature now where people like Dana Wong, who's from LaTrobe University here has done some seminal work looking at modifying for people with cognitive and communication problems, Acceptance and Commitment Therapy. Reg Morris from Plymouth University in the UK has done some great founding to work with some of his PhD students and looking at Acceptance and Commitment Therapy for both carers and people with aphasia after stroke, you did mention before, it's easy to focus on, of course, the client or the patient with aphasia, but you know, the need goes beyond that, because the ripple effect of the, of the impact of the communication and, you know, the disabilities that commonly come with stroke as well goes to a person's social circle and familial circle, and including those people in therapy is, is an important part of the investigation as well. Absolutely.   Jerry Hoepner: It's so common, we have partners who are socially isolated as well, just because they're the primary communication partner for that individual with aphasia, and whatever restrictions to participation, they feel, right, it's just all connected.   Ian Kneebone: When I teach my clinical students, I often say like, you no, you've got an identified person who's been referred to you, but you've got to realize that nearby, there's going to be someone who's just as anxious and depressed, if not more so. But at that point, and that we do know, there's a reciprocity between anxiety and depression, that person with aphasia, and, and a significant care person. So, it's really important to include those people in therapy if you can, but being mindful of not including it in a way that adds to the significant burden and challenges. So it's got to be done in a really appropriate way without asking people for things that they're not able to provide, because they're just coping with things like role changes, financial issues, and you know, the loss of the person as the relationship they had with them on account of communication.   Jerry Hoepner: Absolutely. And, as you were talking about that, it makes me think about how that changes over time as well. So those initial kind of burdens, that might be a tough time for them to engage in those kinds of conversations, because like you said, they're just trying to keep their head above water and trying to make it through everything else, all those other role changes and additional roles they've taken on. But I wonder about your thoughts in the chronic phase as, as both the individual with aphasia and their partners start to make those adjustments, if maybe that's an opportunity for some of those interventions.   Ian Kneebone: Those often talk about that that phase is life after stroke. And that's usually about 12 months later, when we know pretty much how people's rehabilitation has proceeded. And people are pretty much aware of how they will be functioning on into the future. And as you say, I think there's a there's a sort of a crisis point when someone's having their stroke. And there's that kind of acute phase where people are adjusting, but the important thing at that time, people think well, my personal, my personal looking after, or I'm going to get better and so on. But it's when that realization happens. So, we find these sorts of emotional difficulties can occur early or later after, after a stroke, with or without aphasia, of course, and that, you know, it's important that people's needs be met, on into the future, the recovery phase in life after stroke. Because many people when we've done this in our qualitative interviewing and surveys by places like the Stroke Association, UK, that people often the 12 months, a lot of the care, a lot of the treatment or drops away. And then as we were talking about the feeling isolated, and well, this is all I'm going to get, and so on, people are really challenged at that time, and we need to be able to provide, you know, supports and therapies on into the future for those individuals. You know, depression, anxiety content, you know, is pretty consistent at any time after a stroke. And when we're really bad at predicting, I think, you know, who's going to be affected at what state so we're going to be going to be vigilant, and we have to be, you know, particularly vigilant, I guess, I'm probably preaching to the converted with your audience here, but that we know that people are anxious and depressed out of stroke effects, their functional outcomes, and including the communication outcomes and so on, you know, if somewhere, you know, I remember seeing someone with a with a swallowing problem and the Speech Language Service was very concerned about this. And they had a day of good mood, and they came to a day hospital party, and now reading these party pies like there was no tomorrow's person's actual ability to swallow. Now I'm not saying it wasn't about risk was altered by their mood state and that that goes across the continuum of the areas which speech language therapists are involved with. So really important for outcomes and not just mood outcomes. You know, being depressed or anxious is distressing in itself. But you know, the ability to make a difference to people's physical and communicaiton outcomes of addressing psychological issues is considerable.   Jerry Hoepner: Yeah, I like the way that you describe that as being so intertwined and interconnected. So, you can't just separate those pieces out and say, I'm dealing with the physiological issues right now. Now I'm dealing with the psychological or the psychosocial and emotional issues, because there's so interconnected and, and I want to go back to a point you made earlier, which is, so often people early on have that sense of I'm going to be this, it's, I'm not going down the road a year, I'm not going to be one of those people who needs this. So, I'm just going to, you know, nose to the grindstone kind of work through this right now. But it can pop its head up anywhere in that recovery. And, and I think there's some reality that sets in once some of those initial supports are taken away.   Ian Kneebone: I mean, one of the biggest challenges I've faced when I've been in in stroke rehabilitation, and working with Speech, Language Therapists is around when people are using compensation, being asked to use compensation, as a strategy for communication and kind of dealing with all that mean, I'm not going to get any better with my speech. And, and, and, you know, people get really angry, and it's their frustration, and so on, and there's, you know, therapists going to be blamed for it. So, there's a real, real strategy there for dealing with that, and, you know, working with people to retain, retain hope. But you know, being pragmatic with well, you're leaving the hospital, now, you're going to have to communicate there in the community, you want to get out and do some of the things or at least some of the things you used to then how are we going to do this? And how are we going to approach it? But yeah, it can be quite a crisis point.   Jerry Hoepner: And I Yeah, and I think part of our role as a speech language therapist in that context, is to communicate that really well in a way that doesn't set them up for oh, you're switching over to compensatory approaches that you that means you think that I can no longer improve, in terms of my abilities, but rather to convey this is one of several things that we want you to do to be more successful, and to continue to engage. That's, I mean, that's kind of for speech language pathologists who are supposed to be good at communicating those things. We don't always do a very good job of communicating those things. I was thinking a little bit about Deborah Hersch's work on transitions and discharges and how poorly we do and saying, This is what's going to happen. We've got these limitations of the system. But this is the plan, this is not something that you did wrong, this is something that we just need to work through. And when we, I think when we feel discomfort about conveying things like it's time to transition home, or it's time to transition out of therapy, that we don't do a very good job of explaining those things.   Ian Kneebone: Well, I've certainly worked with a lot of members of stroke teams, allied health and speech pathologists, but one of the one of the difficulties, of course, is when we feel uncomfortable about doing it, and it's not the news, people want to hear we kind of beat around the bush. And then when people aren't clear, and you've got people with cognitive and communication problems, it's kind of a perfect storm for it to go amiss. Yeah. So, I think one of the messages I give out is people think if they just communicate it really well, it'll all be fine, and it'll go work fantastically, and people will transition really smoothly. But it's a bit of a wakeup call to realize, however well you put it, this is sometimes news people don't want to hear, and that there's going to be a reaction to that. And just to appreciate that it's not necessarily your fault. But there's the reaction that is it is people becoming aware of limitations going into the future, not the not the recovery they wanted, but the recovery they've got and supporting someone through that is a challenge when sometimes, you know, you're the target of dissatisfaction.   Jerry Hoepner: Right? No, that's such an important point. Just being cautious of that as well. Because certainly, certainly that's an important thing to consider. I'm interested in the process of interprofessional collaboration with mental health professionals with psychotherapists. What are your thoughts on the best way to approach a collaboration or setting up a collaboration with a mental health provider rather than an “oh, this person's got needs beyond what I can provide? Take them off my hands.”   Ian Kneebone: It's just so essential. One of the struggles we've had is that you know many people in my own profession, which is clinical psychology will say, well that this person can't communicate, I can't provide them with therapy. And that's so disappointing because we know if we modify them, we can do that. But certainly, my clinical experience in collaboration is that, you know, working closely with a speech language therapist about the best ways to communicate with someone they've, you know, very thoroughly assessed, is really useful in allowing me to learn and, you know, I work in session with, with therapists, as well as you know, gaining assessments and information and talking to them about that before it. And really importantly, there's a lot of in the research we're doing about collaborating, particularly with collaborating, particularly with speech language therapists, to be able to do those sorts of prevention work and, and therapies we've, we've discussed. And that's been such a joy working with Amanda Lakute, and some other people on that work, and Miranda Rose's team in looking at optimizing mental health and wellbeing in designing, for instance, Jas Sekhon's work, we know, on teaching Speech, Language Therapists, you know, counseling skills, so that they feel competent to support people that first step on the ladder, but also dealing with how speech language therapists can obtain the skills. And also really importantly, this is bringing onboard people with aphasia, to the co-design work, to design things that we know will be effective with them rather. So, we're not doing things to people, we're doing things with people and looking at the best way of designing our interventions. And not just our research, but our clinical interventions, so that they translate well into the different environments, healthcare environments that we work in.   Jerry Hoepner: Absolutely, and kind of three really important points for a speech language pathologist, one, having that training to feel more confident and comfortable with actually carrying out those level one, psychological interventions, but also having training on how to teach mental health professionals how to interact. So, training those communication support strategies is a big part of our role. And if there should be something that we're comfortable with, we should be comfortable as speech language pathologist with training others on how to use those communication supports and   Ian Kneebone: Jas of course is a speech language therapist, Jas and she has got such a great course and such a nice way of delivering that in the speech, language therapy world that it's, it's so nice, and then people say, well, Ian, can't you go and teach us in counseling and like, you know, I'm happy to provide counseling training and different psychotherapies. But, you know, the role model that people like Jas provides in saying, well, this leads, not only can Speech Language Therapists use these therapies I can try and others in them because, but you also know, it's a competency within, within the scope of, of every practitioner really. Yeah,   Jerry Hoepner: absolutely. And, and I think sometimes we forget about that piece, kind of think it's a given that we're going to be able to train other professionals, but I think, also, there's a little bit of that uncertainty, when you're working with someone else about expertise and roles and territory and all of those things you might kind of back off in terms of providing the thing that you are the very, you know, what is your kind of bread and butter, your biggest strength in terms of teaching those things. So, I agree, Jas is fantastic, and the work that she's done in that area has been just so helpful and moving us forward from an educational standpoint.   Ian Kneebone: I guess as a psychologist, I kind of assumed a lot of that work would be the net training was available in courses but as we know, from the surveys and so on, but it has been a bit hit and miss despite the demands and like guidelines, like the Royal College in, in the UK, for people to have those roles, and then it's kind of I know, it's hard to fit everything into the into courses, because there's so much new material on different ways of intervening and assessing, but it's such a core skill that it's good to see that those who may have missed it on the way through that they're released post, you know, these master courses that provide people with to fill in that gap.   Jerry Hoepner: Agreed. And again, there's a lot of a lot of training that still needs to happen yet and a lot more changes to happen in the graduate student training programs for speech language pathologists as well.   Ian Kneebone: When I'm talking to you from Australia, of course, and we're no exception here despite you know the leading lights that we have in this country for speech pathology and trading and communication and counseling skills for people with aphasia we're still working on it here and I know from your surveys, that's still a challenge in the US as well. So, it's a piece of work in progress.   Jerry Hoepner: Yeah, it definitely is. At least there's some awareness of it. And we're starting to make a little bit of ground, I think in terms of awareness. And definitely when we have international programs for training, speech language pathologists and speech language therapists from a counseling standpoint, but also for working together collaborating on research internationally, I think that bodes well, for our future, I think we're moving in the right direction. I want to return.. Oh, go ahead.   Ian Kneebone: No, no, I'm just agreeing with you. So Oh,   Jerry Hoepner: Oh gotcha. I want to return to the other point that you made about codesign, with individuals with aphasia, involved in that process. And I might have you talk a little bit about the relaxation program that you co designed the calmer program and kind of how that was set up. And what you've learned from that?   Ian Kneebone: Well, we pretty much it's run by Rebecca El-Helou, who's a PhD about the completed a PhD with me, and she's done a range of work, including the Kalmer project, which is part of what we call REDS, which was Reducing Emotional Distress in Stroke program. And we just thought, like, you know, relaxation, it's, it's one of these things that we know works with the general population really well. And, but it's not offered to people after stroke generally, or wouldn't necessarily people with aphasia after stroke. And so one of the things we wanted to do by that is, you know, start developing the evidence base, and we thought, you know, really, there are all these great relaxation programs out there, but will they work with people with aphasia, I mean, the advantages, of course, they can be very communication life, because of the nature of the interventions, you know, which is about, you know, focusing attention, reducing autonomic arousal, using breathing and so forth. So, they can be very nonverbal. So, with you, this is eminently suited, and it's also something that could be online, it can be on your phone, right. And it's such a great thing in terms of accessibility. So we work with people with aphasia, because we thought like a lot of, despite the low level of communication required, that it may not suit everybody, we weren't going to assume that people with aphasia would, would take to it necessarily, and we're so pleased that we got a group I think about 10 or 11, people who were involved with us in looking and going through the, the sort of standardized programs, and then looking at how we could reduce down the communication, and how we could also, you know, just make it user friendly, and whether people needed to care or not to support them in, in getting them online to do it. And just really tightening up something and tailoring it to people with aphasia. So, we've got about two levels of communication, for instance, which people can dial up depending on their needs. And, you know, and while I say we will talk with people with aphasia, we also of course, include speech language therapists and  uh Brooke Ryan, you may have heard her doing her work, she's out in western Australia at Curtin University now doing a great job in, in looking at psychosocial work with people with Aphasia out there. And, you know, certainly it was gone, guided by all the current guidelines on supporting people with aphasia, not only to do the relaxation training, but to communicate their views on the relaxation training and how we might modify it to be more appropriate. So that was great. And we also have recently done behavioral activation study, there's just been a publication in Aphasiology about behavioral activation, which is an intervention, which, at its simplest, is a getting people re engaged with their environment, doing things that they enjoy that they've got mastery over, and they value. And also looking at how it can produce an online program that would support people once again, with or without a carer, to undertake that in a really accessible way assessing accessible communicatively but also because it's online, it's available at the time of your own choosing. And we're really lucky we may not be known as well internationally is in Australia, but we had a lot of work from the Black Dog Institute here, which is developed a lot of online programs. So, we also benefited from their huge expertise in this area, in, in developing something that we hope is going to be really great for people with aphasia and, you know, just get the resource out there. I mean, some of the work we've done is trying to get, you know, health services to be out able to offer treatments but you know, getting clinicians with the time. And you know, getting resources to do that is a real challenge. So, you know, we've got to go with where people may be able to access things themselves through Stroke Association, stroke, foundations, those sorts of things, where possible, so that we can get things out there and kind of like, circumvent all the problems of resourcing in the health community, which, you know, we've got a very different approaches to healthcare in the US and Australia, but the same, the same struggle in trying to get resources to people. And so, we're just looking across the board and how we can do that in this online stuff, particularly with the assistance of real experts, like Black Dog has been a great opportunity here. And we're just like, inevitably looking for funding for the next stage where we can roll it out and provide an evidence base to how useful this might be to people with aphasia after stroke. Jerry Hoepner: I think that's so useful. And I want to kind of make the connection between behavioral activation and the Life Participation Approach to Aphasia interventions that Aphasia Access stands for. And that's just such an important part of everything that we do from a life participation approach is increasing that participation, finding ways to get people reengaged in authentic, meaningful things that they care about. So, I want to make that connection. And the way that that might look for individuals could be part of a community group, it could be an aphasia camp like we offer, and I know that Linda Worrall's group started at a camp in Australia a couple of years ago as well. So they've got a couple under their belt, or, and I think I like this extension into the accessible online format that can reach as many people as possible, even if that's like the way that gets them into the loop, because I think it's hard initially to, to invest in going someplace or becoming a part of a group, things like that. But certainly, there's something to be said about once you're in and once you have that success that comes with having the right supports and having peers who understand you, then it's a little bit easier to take that next step, I think,   Ian Kneebone: Oh, absolutely. And like the across this kind of leisure rehabilitation is something our occupational therapies, therapists colleagues talk about, and the behaviors talk about environment enrichment and so on. And, you know, battle activations, all in that ballpark, and really important for people, as you say, it's certainly part of, you know, Miranda Rose and her team are doing work on community aphasia groups, which are kind of exciting, because they're led by people with aphasia, once again, because of the resources, issues that happens with, you know, trying to fund these sorts of activities. And, you know, there's, that's certainly an important part, and also meeting in the group, as you know, is a valuable, enjoyable experience, both in terms of the support from right from people, you know, looking at what other people are doing, and getting engaged with that, but also, you know, being on a similar journey, and the support that that can give to other people's is, is really valuable, I think, is as part of the process that leads to the positive experiences from those groups. Jerry Hoepner: Absolutely. And I, and I hope our listeners I got pretty savvy listeners, I hope they pick up on that connection as an important way to return to those meaningful activities and to have a positive effect on mood and other psychological domains. Ian Knebone: Well, watch this space because the works, you know, the initial works being done, but they're rolling it out in Australia, where they've just got some, some country-type areas involved in offering this training to people. So they've developed some really comprehensive training things for the materials for the people, the professionals that support this program, but also for the people with aphasia who lead the groups. There's a PhD should Kathryn Pettigrove, who, who you should get a podcast on, she's just amazing and excited about this work, and you may have seen her in the US recently, but such talks with such enthusiasm about it. So, I would recommend that to you and your listeners. And as the evidence comes out, and it's going to be a great model, I think for helping people to help themselves. Really.   Jerry Hoepner: Absolutely. And you're right, we definitely need to get her on this podcast. I'll write that down as soon as we're done, make sure that we follow up with that terrific point. (See episode 86) Episode #86: Making Aphasia Groups Work   Ian Kneebone: And she's just so enthusiastic, new energy coming into the, into this area, not that there's a lack of energy, but it's just nice to see that, you know, a few people hanging on the baton.   Jerry Hoepner: Absolutely. Yeah. It's great to great to spread that out. Because there's so much to do. There's no no lack of things to do in this area, for sure. I'm interested in your thoughts. You talked a little bit about Jas Sekhon, but your perspectives on training, both future speech language pathologists who are in their training programs and existing speech language therapists pathologist who are already working clinically in seeking continuing education. Can you talk about some of the keys from your perspective to making that education successful?   Ian Kneebone: The first step is, you know, there's still a little bit of work in saying this, you know, convincing people this is part of their role, because some people will, will think, Well, no, I just hand this over to the psychologists that I you know, I don't think we can, we can accept that but, but moving forward. With that, it's really integrating, you know, the right, you know, say step one type interventions like problem solving, behavioral activation, relaxation therapies, and so on, right in into training courses, because these, these are things that, you know, people say, what's a psychological therapy? How am I going to do that? Well, it because it's psychological therapy, it doesn't have to be done by a psychologist is the first point. And a lot of it's kind of manualized and fairly intuitive to professionals. And many people come and say, you know, problem solving, and I've been dealing with all these challenges in my life already. And this just makes such sense. I wish I'd kind of it just, I should have known this already. Because, you know, I'm a slight person, I've got a master's degree in speech, and language therapy. But you know, it's so useful to me as well, and handing over to my clients is just really great. I mean, we do know, there's some work that's been done in the UK looking about Peter Knapp and his colleagues at looking at problem solving as a prevention and, you know, really good RCT results on how that prevents, you know, psychiatric psychological symptoms after stroke.   Jerry Hoepner: Absolutely.   Ian Kneebone: So, I think it's just rolling out and getting people to be to get over their concerns about and Jazz Jazz program. If you would, then that's, you know, specific counseling skills, but also then add some of these other strategies in. And we've got some experience in doing that recently. It's with step care, Carolyn Baker, who's at Monash University here in Melbourne, has been doing some work with with both online and offline online because of COVID in rolling out these therapies with allied health practitioners, including psychologists, but also Speech, Language Therapists, and being able to do that, and the main thing is just the kind of the structural issues in, you know, adding to people's workload, and allowing the system to support the investment that will, you know, lead, as we say, not just to people coping better with things but also improve, you know, the functional outcomes after stroke. So, while that's been a bit of a mixed feast, in terms of, you know, outcomes, because it's just been so hard to get these systems to take on board the training and get, get the people through these very straightforward psychological interventions that we know will almost certainly benefit people. But we're doing that, as I say, a two-pronged approach, we're looking at the self-help co-design work that can go online and so on and be accessible that way. And also trying to, you know, train every day, healthcare workers in being able to provide these to people with aphasia.   Jerry Hoepner: Absolutely, and when you say, fitting in to people's schedule, or their workload, I mean, I just think that goes both ways, because not addressing these things really limit your outcomes in terms of, kind of, like you said, the communication outcomes are going to improve as those psychosocial outcomes begin to improve.   Ian Kneebone: You know, it's short sighted not to make this investment. But you know, doesn't mean it'll net. And so, you know, the logic doesn't necessarily follow, right. In terms of what happens with healthcare resources. And the other thing is, I guess, we're talking about all what suspects with therapists, fleet Language Therapists role is really important that not to throw the baby out with the bathwater is that, you know, like, if someone's communication can improve their depression and anxiety will improve as well. So, you know, as I often say, when I'm talking to training other allied health people, you know, we've all you know, you've all abandoned the session because someone said or stressed or upset and so on. But if you keep on doing that, something's got to change. You can either refer them on or do some collaborative work with somebody, but not, you know, not stopped doing the OT or the physio or speech language therapy, because you know, those things have to come along with as you were saying earlier, they're all joined up.   Jerry Hoepner: Absolutely, no, that's a, that's a really great point. And they all have to happen simultaneously to be effective, for sure. Ian earlier, you were talking about Carolyn Baker's work, her recent work, and I'm really interested in the low intensity psychotherapeutic interventions from the eDelphi study. Just wondering about kind of your thoughts on what the place is for those you mentioned occupational therapist, physiotherapist, speech language therapist. Ian Kneebone: This is Carolyn's most recent work, which is the last data we kept it in the middle of this year has been rolling out training to people, you know medical nursing, speech language therapists and also psychologists in kind of first level step care for people with stroke. So, people were enrolled in the program, and some was telehealth some was not. And they would then choose one of three therapies that they thought might suit them best. And that would be problem solving behavioral activation or relaxation therapy, and then they'd have seven sessions of therapy with that. So these were people who weren't necessarily psychological therapists, although some were providing, providing these sessions within a current health system that's operating day to day with the practitioners from the current health system, rather than you know, someone coming in and doing a great RCT. But then the resources disappear, and you go away, no matter what you prove, one way or the other. And that's been a real eye opener, I mean, that there were major challenges when we started that because of COVID, because so many healthcare workers, as I'm sure there were in the, in the US were, were redirected to other tasks to do with the epidemic. But we've soldiered on, and got that it's a really great learning experience to see. See how that went, how it was rolled out. And we've got one at a time and qualitative evidence that we're going through, it's starting to sift through at the moment to look at what we can really learn from that project about how we do this going forward. I mean, I do not at the moment, it's just that that redirection of resources, particularly under COVID, was so difficult. And that was perhaps a unique time. But the resources, as I was saying earlier, are always under scrutiny and precious. So, right. It's about I think, partly getting the evidence base and so on. So we were talking about relaxation therapy recently. And I've got the irony of people saying, well, you know, you put it in a grant application to do to demonstrate the treatment efficacy, and people said, well, it's relaxation therapy, why wouldn't work? Of course it will work. And then, and then the people say, well, we can't put it in policy, because there's no evidence base. So you kind of you know, it even the same, the in the same grant round. Yeah. And so we're just doing it anyway, we're doing it with PhD students, we're doing it with, you know, startup resources that Miranda Rose in the Center of Research Excellence in Aphasia Rehabilitation in Melbourne have got hold of for us. And we're going to demonstrate the usefulness. So, people will put it in their guidelines and so on. And then the UK National Stroke guidelines, say all this great stuff about some relaxation training, we do the same, but there isn't sufficient, not sufficient numbers, significantly power to demonstrate efficacy and so on. I'm just really grateful they mentioned some of Vaour work. But then I kind of have well, yes, but and, you know, that means it's not rolled out. I used to work in a stroke rehabilitation word in Vatum, in the UK, and we had a number of Allied Health assistants, you know, physiotherapy assistants who've gone off and done all this training in how to do relaxation with people that didn't get any time to provide. So it's kind of like, oh, gosh, you know, it is hard to, sometimes to, to get this happening. But you know, I think there is saying that, but there is kind of a, it's a right time. And you were talking to me before about, you know, five, you know, psychosocial guidelines for people with aphasia, and so on that were being developed. And I think the more that we do that, the more the ability will be there to leverage those resources to people who need them.   Jerry Hoepner: Agreed. I think that is a really good place to start to wind down our conversation because I think we're moving in the right direction. Still, still plenty of work to do, but I'm wondering, kind of as a as a summary are there are two or three things that you think speech language therapist, working with people with aphasia should keep in mind from a psychological intervention standpoint, and what's a good starting point?   Ian Kneebone: Well, I think it's probably the three things I do is like, you know, take it on as part of your work to be aware of these, these these issues and try not to shy away from As tempting as that may be. So, the first thing is, you know, there are good instruments for now that we have screening for anxiety and depression so you can pick those up and they're well within your skill base to use. And then getting the skills and training and things like counseling if you don't have them already, or you don't feel confident in using them, and then getting access to some of these other things. So like Caroline's work, you know, we're hopefully the publish the manual shortly that can guide people, speech language therapists in using those treatments. So that will be something that's out there and a resource that people can use. And once again with it well within the competence of, you know, speech language therapists. And I think finally, you know, just using the great communication skills you've got, even when you're sort of giving people difficult news to receive that. And just being as clear as you can be, you know, how to do the communication. And, you know, kind of accepting people are going to be frustrated. But, but giving it the clarity and the justification in a way that retains people's hope for further recovery but it's pragmatic, to get them functioning as well as they can in the community, because that's so much of the key to people going forward.   Jerry Hoepner: Absolutely. And that's, that's our whole goal to get them reintegrated as much as possible.   Ian Kneebone: So, awareness, skills, communicating effectively regarding the difficulties and the challenges.   Jerry Hoepner: Excellent summary. Well, Ian, it's been fantastic having this conversation. Great to have it again, I don't remember exactly how many years ago we talked. But it's great to have that follow up conversation. And I know our listeners will really enjoy this conversation. So, thank you for being here today.   Ian Kneebone: I'm more than happy to help out and thanks for all the speech language therapists who have contributed to my work. I wouldn't be here without them. And it's great to see this interprofessional learning moving forward. If I hadn't missed out any of the great people I've worked with, I do apologize. But there's just too many of you now, which is part of the success story.   Jerry Hoepner: Yeah, that's a good problem to have. Well, thank you again. Goodbye.   Ian Kneebone: Thanks, Jerry.   Jerry Hoepner: On behalf of Aphasia Access, thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org. If you have an idea for a future podcast series or topic, email us at info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access.   Resources: El-Helou, R., Ryan, B., & Kneebone, I. (2023). Development of the “Kalmer” relaxation intervention: co-design with stroke survivors with aphasia. Disability and rehabilitation, 45(9), 1517-1529. Kneebone, I. I. (2016). Stepped psychological care after stroke. Disability and rehabilitation, 38(18), 1836-1843. Morris, R., Eccles, A., Ryan, B., & Kneebone, I. I. (2017). Prevalence of anxiety in people with aphasia after stroke. Aphasiology, 31(12), 1410-1415. Ryan, B., Bohan, J., & Kneebone, I. (2019). Help‐seeking and people with aphasia who have mood problems after stroke: perspectives of speech–language pathologists. International Journal of Language & Communication Disorders, 54(5), 779-793. Ryan, B., Kneebone, I., Rose, M. L., Togher, L., Power, E., Hoffmann, T., ... & Worrall, L. (2023). Preventing depression in aphasia: A cluster randomized control trial of the Aphasia Action Success Knowledge (ASK) program. International Journal of Stroke, 18(8), 996-1004. Sekhon, J. K., Oates, J., Kneebone, I., & Rose, M. (2019). Counselling training for speech–language therapists working with people affected by post‐stroke aphasia: a systematic review. International journal of language & communication disorders, 54(3), 321-346. Sekhon, J. K., Oates, J., Kneebone, I., & Rose, M. L. (2022). Counselling education for speech-language pathology students in Australia: A survey of education in post-stroke aphasia. Aphasiology, 36(12), 1417-1446. Sekhon, J. K., Oates, J., Kneebone, I., & Rose, M. L. (2023). A phase II randomised controlled trial evaluating the feasibility and preliminary efficacy of an education program on speech-language pathologist'self-efficacy, and self-rated competency for counselling to support psychological wellbeing in people with post-stroke aphasia. Topics in stroke rehabilitation, 30(8), 842-864.

An S-Tier podcast, Hex Girls lore, and wooden spoon technology.

SEASON 2 EPISODE 134: COUNTDOWN WITH KEITH OLBERMANN A-Block (1:44) Trump appears to be suffering from a condition called "Fluent Aphasia." Victims can verbalize intricate long sentences, and appear to be answering questions or making coherent observations. But frequently all they have is the structure and the cadence of coherence; the rhythm of speech. They do not fully understand what they are hearing, cannot convey what they are trying to through speech, and are almost invariably the victims of strokes or head injuries. All attempts to explain "Fluent Aphasia" (or by its formal name, "Wernicke's Aphasia,") use the phrase "Word Salad." And after a three-day series of speeches in which, on literally dozens of occasions, he said things that SOUNDED like sentences but were not, the evidence is mounting and the problem is accelerating: the Trump word salad is "Fluent Aphasia" and on top of all of Trump's other mental and ethical problems, it is disqualifying. He cannot be president. His brain literally does not work correctly, MEANWHILE: “Course I'm respectable,” says John Huston as Noah Cross in Chinatown to Jack Nicholson as Jake Gittes in Chinatown. “I'm OLD. Politicians, ugly buildings and whores all get respectable, if they LAST long enough.” And then there's what happens when you're all three of those things - as the Supreme Court and its justices are all three of those things: Politicians pretending to be justices, working in an ugly building, and as Trump relied upon and was proved correct – they're all whores. “Because the Constitution makes Congress rather than the states responsible for enforcing Section 3 against federal office holders and candidates, we reverse,” reads the Court's decision to not enforce the 14th Amendment denying insurrectionists the right to become president or hold other offices. 9-nothing. Except it DOESN'T do that. Section 3, as conservative scholar after conservative scholar has repeatedly stated, is SELF-enforcing. It is automatic. If you engaged in insurrection, you're out. If you think you're being ill-treated, Section 3 provides you an override mechanism: you can get the House AND the Senate to each CLEAR you, each by a two-thirds vote. Period. The constitution says NOTHING about an enforcement responsibility. The Court betrayed democracy yesterday – again: this time by going faster to help Trump. On presidential immunity, it's going SLOWER to help Trump. Its members, including Jackson and Kagan and Sotomayor, who before folding, stood up just long enough to wave BYE BYE to representative government, overruled one of the easiest parts of the constitution to understand for the benefit of one corrupt politician. Individually and as an entity they have proved themselves inept at basic reading comprehension. They have proved themselves to be corrupt and illegitimate. Its usefulness and relevance is at an end, and whatever replaces it, the immediate need is obvious: The Supreme Court must be dissolved. The funny part, of course, is that these idiots have inadvertently given the current sitting president (a Mr. Biden, I believe) a kind of qualified, specific immunity from prosecution in case HE wants to illegally overturn an election. B-Block (25:50) POSTSCRIPTS TO THE NEWS: Another reporter claims Trump is about to pivot and Trump promptly makes her look like an idiot. Trump's new vaccine promise: I'm here to kill your kids. Trump shortens his National Abortion Ban plan. Jack Smith says no, the DOJ 60-Day Secret Unwritten Rule does NOT apply to cases already filed against Trump. And farewell to my old friend Chris Mortensen go ESPN. (33:50) THE WORST PERSONS IN THE WORLD: Jesse Watters says Biden "licking ice cream" is unmanly and implies he has Alzheimer's. That's before they found the post from five years ago of Watters... licking ice cream. The would-be Republican nominee for governor of Missouri is suing because, he claims, he was only an HONORARY member of the KKK, and Kristin Welker allegedly wins after allegedly graduating from Harvard and allegedly being a White House correspondent and saying Trump "allegedly" tried to overturn the election. C-Block (41:30) THINGS I PROMISED NOT TO TELL: My oldest enemy - the one I thought was killed off in the '80s - turns out to be alive and well. My half century battle against "The Auto Train" and its stopped-up toilets of 1972.See omnystudio.com/listener for privacy information.

This week we dive into more of Maria's experience with her mom as we discuss Primary Progressive Aphasia (PPA) with ⁠Naomi Nevler, MD from the Penn FTD Center. We had the chance to spend time with Naomi on our visit to Penn last fall, and her passion for science and her understanding and compassion for our community, we feel, is all felt through the episode. We hope this helps you gain deeper insight into PPA... and we hope you appreciate some raw and unfiltered thoughts on the subject from your favorite duo. We want to send big love to the entire ⁠⁠⁠⁠Penn FTD Center Team⁠⁠⁠⁠ for jumping in feet first, to our sponsors for their support and to our guests for openly sharing their stories.  Please see below for links mentioned in the show and a direct link to our informative companion blog for this episode. Each week a new episode will launch Tuesday followed by a blog that will be sent out via email to our subscribers. To sign up for our e-mail visit our website ⁠⁠⁠⁠remembermeftd.com⁠⁠⁠⁠. The companion blog to this episode can be read ⁠⁠⁠⁠here⁠⁠⁠⁠. Special thank you to The AFTD for their collaboration and support of these blogs! And a special thank you to ⁠⁠⁠⁠Alector⁠⁠⁠⁠ for their boundless work in the neurodegenerative space. Powered by innovation, exquisite science and a determination to make a difference, Alector is working on the discovery and development of potential therapeutic treatments in the hopes of improving the lives of patients, caregivers and families living with neurodegenerative diseases. Remember Me Podcast is appreciative of all your support of our work.  --- Support this podcast: https://podcasters.spotify.com/pod/show/rememberme/support

In a special series within season 4, Indre speaks with Connie Tomaino, executive director and co-founder of the Institute for Music and Neurological Function (IMNF). This episode, Connie talks about how music therapy can benefit patients who have had a stroke and/or suffer from aphasia.Cadence is the podcast where we talk about what music can tell us about the mind. Hosted by neuroscientist and musician, Dr. Indre Viskontas, the fourth season will bring you the stories of people who experience music outside the bounds of the average listener, and who use music as a tool to be heard in a society in which they are often ignored.

When Bruce Willis, an action movie star known for his way with words, started to lose his language skills, it made news. He had aphasia.