Aphasia Access Conversations

Dr. Katie Strong, Assistant Professor in the Department of Communication Sciences and Disorders at Central Michigan University talks with Dr. Natalie Douglas from Central Michigan University implementation science and how this applies to aphasia practice.

Natalie Douglas is Lead Collaborator at Practical Implementation Collaborative, an Associate Professor in the Department of Communication Sciences & Disorders at Central Michigan University, and an Editor at the Informed SLP. She completed her B.S. and M.A. degrees at Ohio University and after a decade of clinical practice as a speech-language pathologist in hospital and long-term care environments, she completed her Ph.D. at the University of South Florida. Her work aims to advance best, person-centered practices in communication and quality of life interventions for people with dementia, aphasia and other acquired communication disorders in adults. She additionally aims to empower local healthcare and educational teams to support best practices, quality improvement initiatives and person-centered care through applying principles of implementation science.

In this episode you will:

• Learn about what implementation science is and how this applies to aphasia practice
• Hear about how using an implementation lens can lead to better outcomes with clients and families.
• Learn about Sam, the Bocce player, his sauce, and the importance of a person-centered approach to care in people living with dementia.

KS: Natalie, welcome to the Aphasia Access Conversations Podcast. Thank you for joining us today. I'm looking forward talking with you and having our listeners learn about your work.

ND: Thank you, Katie. I'm always so happy to talk with you, especially here today.

KS: So, I feel like we should share with our guests, a couple of fun tidbits about how you and I are connected before we get into the meat of today's conversation.

ND: Okay, let's do it.

KS: So first and foremost, we are colleagues at Central Michigan University. We share actually share a wall. Our offices are in the same hallway, although with pandemic, it's been awhile since we have both been in the office together. So, we are colleagues and have a lot of great fun together. But we have another way that we are connected as well.

ND: Yes. So, we crossed paths. I think in the early 2000s. So, I was working at a certain hospital system from 2003 to about 2013. And then I came to find…this was in Florida, by the way, we're in Michigan now. And then I found out that you worked for that same hospital system, also as an SLP right before I started, or something close to it.

KS: I did! Yes, we came up to Michigan in 1999 so I was there just a couple of years before you were, and we had shared colleagues!

ND: Amazing.

KS: Crazy.

ND: It was meant to be can't get away for me, I was going to find you!

KS: Absolutely, well fate! Fate. I love it!

NS: Indeed.

KS: Let me first congratulate you on being named a Tavistock Trust for Aphasia Distinguished Scholar. It's fabulous! Tell me a bit about what this award means to you.

ND: Thanks for that so much. And this award really means a lot to me. I'm just so truly honored, grateful and humbled to receive it, along with people such as yourself and many other esteemed colleagues. And upon finding out about the receipt of this award, it really kind of prompted me into a lot of reflection from when I first started studying speech language pathology. So, this was, you know, in my undergrad degree in 1997. And I, a couple years after that, was introduced to what aphasia was. And, you know, this was further nurtured by working with Dr. Brooke Hallowell. And then continuing, you know, through clinical practice and trying to improve life for people with aphasia, working with Jackie Hinckley in my PhD program. And it really had me become extremely reflective upon what I've been doing recently, which is more system level changes. So how can we ensure that people with aphasia and other communication disorders, how does everybody have access to the best interventions? How do we make it so that best practice is not based on where you have your stroke, geographically speaking? You know, how do we spread what we know, works for people? How do we get the word out so that it becomes routine based care? So, this award, it just served as a catalyst for a lot of deep reflection and gratitude for the work that I've done in the past and now and also for the work that needs to be done in the future. So, I'm just extremely grateful to the Tavistock Trust and colleagues and mentors for this really humbling award. So, thank you for that.

KS: Congratulations! The award is well deserved, and we are excited to hear about your work, both the work you have been doing and the work the will come in the future too. Natalie, as we get started, I'd love to hear the story of how you became interested in implementation science as an area of research and expertise.

ND: Sure, so, I think like many of us, when I was working in a clinical setting, there were many problems that I didn't feel like I had the ability to solve with my clinical training. So, you know, I just, quite honestly would leave clinical practice at times feeling honestly, full of guilt and shame, quite frankly, because I felt like I wasn't giving clients and patients and people the best possible services for one reason or another.

KS: I feel like a lot of people listening who are working clinically or have worked clinically in the past can really relate to that. You know, we all get into this field to help people and then when you get into it, sometimes that help isn't as easy to do with a lot of the barriers that are in place.

ND: Yeah, exactly. You know, and for me, you know, there were some cases where it wasn't necessarily an issue of me not knowing what to do. So in in many cases, I had the knowledge and in some cases, I had the skills. Not in all cases, there was often a skill gap to but in some cases, I did have the knowledge and skills to provide a certain evidence-based practice, but I still wasn't. And until I came across implementation science, I thought it was my own personal, I mean, honestly, moral failing why I wasn't.

KS: That's heavy.

ND: Yeah. I don't know that everyone hits existential crisis, like I do. But I mean, I really did, because it didn't feel right. You know, it didn't. It didn't feel right. Um, so it was, you know, the inability to solve those types of problems that really kind of propelled me back into academia. And so, when I first started my Ph D program, with Dr. Jackie Hinckley, I thought I was going to do something with aphasia treatment research. And I don't know how she remembers this, but it was sometime around in 2009. Jackie gave me a monograph, just a little book by Dean Fixen and colleagues and it was about implementation science. And it talked about how there was an entire discipline, dedicated to really merging the gap between research and practice. And it showed that there are mechanisms kind of outside of me as a person that influenced what I was able to do clinically. So factors like, what the organizational culture is like, what the organizational climate is like, things like insurance, reimbursement, policy. You know, all of these factors that are really outside the individual realm of the clinician, that we have data to show that it really does, those other factors influence what we're able to implement on a clinical level. And so I just kind of devoured that monograph, and quite honestly, been thinking about it, ever since in one iteration or the other. Because it's not just our field, you know, it's not just speech language pathology, it's not just aphasia, you know. This is across education, mental health services, every medical specialty. You know, we the way that we've created these systems of academics and practice, we've kind of reinforced silos. And so, the two don't always meet without active work. And that, I think, is what implementation science can really do. It can provide tools to kind of bring those realms together.

KS: It sounds like it was really a mind-blowing experience for you to have that monograph in your hands.

ND It was mind blowing. Indeed.

KS: And how lucky we are that it got into your hands. Well, I know many of us have heard that term, Implementation Science, but it isn't always clear what is meant by that. Could you help us to understand that a little bit more?

ND: Right. I think that's a really great question. And I think it's definitely not something to take for granted. You know, as helpful as, as implementation science is to our discipline. Within implementation science, there are a lot of constraints in terms of like language and terms, so it can get a little bit foggy, hazy pretty quickly. But the NIH or the National Institutes of Health definition of implementation science is really the study of strategies to help to determine how to best implement an intervention or evidence-based practice into a typical practice setting, usually as delivered by typical practitioners. So, this is not a situation where you would hire an interventionist or a graduate student, for example, to implement your assessment or intervention tool in a typical setting. I mean, there's definitely nothing wrong with that. But that's not in that could be, you know, if you're following a stage model, you know, that could be a direction that you go. But I think the guts of implementation is having, you know, and I think the routine typical clinician is a beautiful, amazing thing. So, I hope it doesn't don't when I say routine and typical, I really don't mean it in a negative way. But to get just really everybody on board.

KS: You mean your average, fabulous, SLP who is out there working directly with clients and families.

ND: Exactly, exactly. So, what we can do is just like how you would study the effectiveness of an intervention, okay. So, you have, for example, communication partner training. That's an example of an intervention in our discipline has a lot of effectiveness data, right? We know that it works, right? When it under certain parameters, we know that it can support communication and other quality of life outcomes. So, what you would do is, in addition to studying the effectiveness of an intervention, or if the intervention has already been studied, you could study the effectiveness of an implementation strategy. So, for example, you might say, "Okay, if we put in some type of audit and feedback system, does that increase the uptake of communication partner training?" Or if we provide incentives in some way, like some type of certification, or honestly, you know, the ultimate, not the ultimate, but a very effective implementation strategy is paying people to do something, right. And so that's, we don't do that in our field. But if, you know, as I said, a little bit earlier, you know, this is something that's, you know, grown outside and kind of encompasses many disciplines. You know, if I think about myself, and what causes me, you know, to want to change my individual level behaviors, right? There's like, certain incentives that might get me to do that. But those are implementation strategies, and not necessarily the intervention itself. Right? So, implementation sciences, like how do we get it into that typical setting, delivered by a typical practitioner, in the best way? So, just like how you could comparatively assess, you know, two different naming interventions for aphasia, you could assess two different implementation strategies. You can say, "Okay, if I put audit and feedback in one condition, and then I put education and training and another condition, am I going to get different adoption rates?" Right, will, more people do it in x condition versus y condition? Does that make sense?

KS: Yeah it does. So, taking the example you used for communication partner training, and we know that it has a high level of evidence that it works, but I'm not sure if our fabulous, everyday clinicians are using it on a regular basis. So that would be a step to then have some sort of implementation study or protocol to help basically get the evidence out into practice. Is that what we're talking about?

ND: Yeah, it is right. So right. And you kind of said it without saying it. So, one example of an implementation outcome would be something like reach. Okay. So, it's like, if we looked at all of the potential places where communication partner training might be beneficial, right? How do we get that number up? You know, with fidelity to what communication partner training actually is, right? Which we know is not just handing somebody a handout, right? So, you know, those are the types of kind of questions that you might ask, you know, and we can use an implementation science framework to kind of guide our thinking, you know, like, how do we get this reach up? or higher? How do we know, you know? And it gets messy, you know, it definitely gets messy and there's, it's complex, a lot of these questions. But these are the types of questions that I really think we need to be asking if we're wanting to advance these positive outcomes for families.

KS: Yeah. And I think that messiness kind of substantiates how you were feeling back when you were working clinically. Right? That you had this knowledge and skill..

ND: That is true.

KS: But you can't actually get it going into your day to day practice.

ND: That's right. Yeah.

KS: Thank you for explaining that. I really appreciate that, and I think our listeners will also. I do think it seems clear, and then it gets fuzzy. I know it's a deep area of science. Well, you and a few colleagues are working on a scoping review on the landscape of implementation science in communication sciences and disorders. Can you tell us a bit about what you did, what you found, and why this is important specifically for aphasia?

ND: Sure. Right. So, this is a project that I've been working on with some other colleagues. So, with Dr. Megan Schliep, Dr. Julie Firestein and Jen Oshita, and we're working on and again, we're, this is not published, so please take this with a with a grain of salt or 10. I mean, we tried to have good rigorous methods. So, we basically wanted to see because, you know, I, this, when I say this, like I, myself have wrote a lot of these papers. So, I'm like talking about myself, but we have a lot of talking about implementation science, and we have a lot of concept papers. And it's good, you know. We need to be talking about it. It's a new area. But we don't we wanted to know, where is the science, right? Like been we've been talking about it. So, the Journal of Speech Language and Hearing Research, they had a special issue in 2015. So that's like, you know, a few years ago now, the ASHA Foundation had an Implementation Science Summit in 2014. So, years are going by right? And so, we wanted to know, have these initiatives, you know, this discussion that we've been having has it resulted in any changes, right? Are we moving the needle when it comes to incorporating some of these methods into our clinical practice research? So, at this point, we ended up finding 82 studies that met our criteria. But what I think is really interesting for people with aphasia, is we did this communication sciences and disorders wide, so including all you know, pediatrics, adults, we did, you know, speech language pathology and audiology. We came up with 82 studies, but the, the patient population that was most represented, was aphasia. Out of all of those different, you know, potential patient populations. And I thought it was a really fascinating finding. You know, it makes me think that clinical practice, researchers in aphasia are really kind of on the cutting edge, you know, when it comes to studying how to get these best practices into typical settings. And I think it also means that in aphasia, we have a unique opportunity to move things down the implementation pipeline. So, like, we started, you know, you and I started talking a little bit about reach, right? So, it's like, how do we get something out? You know, get people doing it? Well another, you know, kind of further down that implementation pipeline would be an outcome such as sustainability, right? So, like, when there is no researcher in sight, right, like this clinical trial has ended years ago, how do we put mechanisms in place so that that intervention is still sustained right, within that own system? So I think in aphasia, we've got really, yeah, interesting opportunities to be able to look at some of these longer term outcomes. You know. Overall, like as a field, it seems like we're really, potentially overly relying on like training and education as an implementation strategy. And I think that can be, you know, a number of reasons that I'm speculating here but you know, most of us are trained from a behavioral education standpoint. So I think we're really comfortable, you know, in that realm, you know, in some of these other implementation strategies, I don't know that we really know about them or use them, you know, to this point. But I think, you know, overall, a lot of progress has been made. But of course, we have a lot of room for growth. But I think we have some really unique opportunities, especially in the aphasia world, which I think is very exciting.

KS: Yeah, that is exciting. And I guess I'm feeling excited and proud and that kind of like 'eek' as we are stretching ourselves and learning things about how we might move the science forward ultimately so we can help the people living with aphasia to live better lives or reach their goals or whatever it is that they are wanting to pursue.

ND: Yes. Absolutely.

KS: As you know, this podcast has a wide listener base with shared interests in aphasia. Researchers, clinicians, program managers, people living with aphasia, their care partners and family members. What are some steps that they can take to support implementation science?

ND: I think that all of those people that you mentioned those different groups, so you've got researchers, clinicians, you know, program managers, administrators, people living with aphasia, and their families and friends, right? Every single group that you mentioned, right through an implementation lens, they are a stakeholder, an equal stakeholder, where their input engagement is not only valued, but also, I think, required, if we're going to have optimal implementations to support all the outcomes that we want, you know. And so, I think one of the biggest steps that we can all make, is kind of reaching across our silos are relationship silos, right? So, for a researcher reaching out to a clinician, if we're clinician reaching out to a researcher. We don't need to have these silos. Even though we might, we might say there's not a hierarchy with our mouths between researchers and clinicians. I think we kind of know that's not quite true, right? It's a thing that is maybe unspoken, but it can make people feel intimidated to reach out. But I think that, and it's not just clinicians and researchers, but also administrators, families, people living with aphasia, if we can all start to break down some of those silos. So, I think the project that you're involved in with Jackie Hinckley, the Project BRIDGE, is a really phenomenal example of that, where people are actively listening, and learning from another, you know. I think it's not just a nice thing to do, but there's data to support better implementation outcomes, if we do that kind of engagement work upfront. You know and something that I try to ask myself when we're having these types of discussions is who is missing? Right? Who was missing during these discussions? And how do we get them to the discussion? How do we get them to the table to discuss and to really, so that we can figure out what's important, and how do we reach across some of the boundaries that we have and start to have this conversation?

KS: I'm envisioning a 'talk with' instead of 'about'.

ND: Absolutely. And you know, this is not…I see this as like a both a "both and" thing. And so, this is in no way minimizing or to the detriment of basic science work, right? Like, we're specifically talking about clinical practice research, which not everyone does, right? And we know that there's different stages. But this is kind of a "both and" right"? We need our basic scientists and we need that foundational level work, we do. But I think there's enough data in that research to practice gap to say that we need to start way earlier in terms of, you know, kind of start thinking about, if I'm a clinical practice researcher, and my intervention requires a certain amount of time. You know, so if it's like time per week, you know, in minutes or in days per week. And I know for sure that Medicare is only going to reimburse three times per week, right? Then it's like, okay, that's something that's so much easier dealt with upfront, right? And so I think this can allow us this lens can allow us to be a part of some of these policy discussions when it comes to third party payers and to say, "Hey, guess what, this treatment didn't work, when you only did it four times a week, you need to do it five" right? Or whatever the case may be, but to have to be thinking about the different layers. And I it's a lot to think about, right? It's a lot to think about. As opposed to, you know, getting this amazing level of evidence on a treatment, but then understanding that it potentially is not going to be feasible or acceptable in a real-life setting. Sometimes you can't fix that gap. You know, sometimes it might be a little bit too late, you know, so I think the more we can be thinking about that upfront, the better.

KS: Yeah, I love it. I'm visualizing sitting around with our implementation lenses on with stakeholders at the table from all walks of life and moving things forward. Oh wow. I've got goosebumps, Natalie.

ND: You do.

KS: I do. You are putting the challenge out. That's for sure. I'd love to switch gears a bit and talk about another recent publication of yours. You and Ellen Hickey have recently co-authored a book titled Person Centered Care and Communication Intervention for Dementia: A Case Study Approach. What was the inspiration for the book?

ND: Sure, yes. So, thanks for bringing that up and letting us talk about that, to appreciate that. So Ellen, and I were, you know, we were thinking, as you know, clinical researchers, and we both of us had spent, you know, several years in clinical settings, we were trying to make it easier for clinicians who wanted to implement Person Centered Care, kind of across the care continuum. And from what we could find, you know, there were a lot of outstanding resources available about certain techniques. So, you know, external memory aids, or maybe the Montessori philosophy, or spaced retrieval. But what we wanted to do was put everything in one place, if possible, with a real kind of focus on treatment, and emphasis on the person. So, one thing that we thought was exciting, was we went so far as to name each chapter after a person and their role in life.

KS: You sure did, I love it!

ND: As opposed to, you know, this is a chapter about vascular dementia. This is a chapter about aphasia, you know, but again, this is a "both and" situation, you know, we need to have that detailed information.

KS: You made that message loud and clear. Person centered, loud and clear.

ND: For sure, for sure. So, for every case, there's eight cases in there. For every case, we really dive in deep on what it would look like to do, you know, a person centered assessment, and then provide some kind of flexible templates and some gold banks, you know, we're hoping that it will give, you know, very bright clinicians, you know, who are already doing great work, more ideas. You know, and by seeing clearly, not every person is going to remotely resemble these eight cases in this book, but we hope that by showing and focusing on a lot of the nuance, it will help spark some more person-centered programming for some of our clients kind of across the Health care continuum.

KS: Thank you. It's fabulous. When I was reading the book, I noticed prominent in the chapters, you've adapted the Life Participation Approach to Aphasia and the Living with Aphasia: Framework for Outcome Measurement, a.k.a. the A-FROM, to working with people with dementia. You know Aphasia Access' work is so centered around LPAA or Life Participation Approach. I love how you are expanding this vision. Can you share how this came to be?

ND: Sure, sure. So, Ellen and I had both used the A-FROM in our clinical work and it really made sense to us that when we think about some of those layers. You know, you've got issues of, at the impairment level, if that's cognitive or language, you've got issues to consider around the environment, life participation and personal identity, right? We felt that these factors were really relevant across disorder types and that this could be a very helpful way to ground some of the interventions and planning for intervention, as well as look at some of the outcomes. So, the Aphasia Institute was generous enough to allow us to use that model, you know, in the book, and we just, you know, merely suggest. It's not been tested or anything, but we just suggested it might be appropriate for people living with dementia as well. You know? And I know that we've got a segment of our population with frontotemporal lobar dementia, you know, or with primary progressive aphasia variants, potentially, so I think sometimes it's good to think about some overlap across disorder types, you know, in terms of how we want to ground intervention and outcomes, right? Because when we're thinking about people with dementia, and aphasia, really, we have to think beyond the impairment not to exclude the impairment. And, you know, we're not doing that, but just to think, to add some layers to what we might want to measure, and what we might expect to see some changes in.

KS: Well I think it's fabulous. I wish people could see, but I'm actually holding the book in my hands as we speak. It's the right size.

ND: It's pretty skinny! (laughter)

KS: Yeah, the right size. (laughter) But seriously, I'd love to dig into one of the cases. In particularly, I'd like to talk about Sam, the Bocce Player who was inspired by your own grandpa. And I'm looking at the chapter and I see photos of your grandpa and our grandma and your children…and I mean Natalie, let's talk about Sam.

ND: So Sam is my grandpa, he is no longer with us. And he was just the most unique, hilarious, funny, just complete character. He was all about his Italian heritage. And, you know, it was extremely sad for him to struggle with a communication disorder towards the end of his life. And it was just really difficult to watch and see, of course. It was devastating. You know, that's why we're all here in this field, right? But the reason that I…there were multiple reasons I wanted definitely a way to remember and honor him. I'm very grateful for the time that we had together but he is definitely one who did and would like he would be the person who you would go into their medical room, if it was rehab or hospital and with the "usual tactics", it would be a "patient refused" [scenario]. There's just like, no way that he would attend to activities like workbooks or, you know, traditional speech and language tasks. I mean, it just would not happen. And he would refuse things all the time. He was like super stubborn, but the things that he loved, you know, he loved. And I think he is somebody, that's a really great example of sometimes if we go in and we're not knowledgeable of the person, we could lose our opportunity to try to facilitate communication with somebody. So, what we have in the chapter and in real life, you know, really kind of focusing on passions, so he was able to be around my kids when they were smaller, his Italian heritage, and Bocce and food, you know. And using those things in kind of a nontraditional setting, we were able to have some really special moments of what I think were very joyful, participatory, person-centered moments. If we kind of went about it in traditional, you know, from a medical model, I just don't think that would be have been very impactful. So, the hope is that for those folks that we see that they're like "Get out of my room!" you know. We've all been involved and told to 'get out!'.

KS: "You're fired!"

ND: "You're fired! Why are you here?" You know, trying to think creatively about what that might look like to support somebody's communication.

KS: Absolutely. And I think the way the chapter is set up, how we first learn about Sam's background, and his family, and job, and then we learn about the medical history. I know that's not how we always come across information when we're meeting clients, or patients, or people. Whatever we are calling them in the places that we are working, but I do think it influences how we view one another. You know. And being able to think about our clients as people. And how we might engage with them. This is fabulous. One of the things that I thought, you know I love to cook, Natalie.

ND: Yes, you do.

KS: You talk about Sam and his sauce throughout the entire chapter. And I'm guessing you aren't the one who isn't going to be the one to help me learn how to make the sauce, are you?

ND: I know. That's so terrible. When I was a kid, he owned a restaurant and on Tuesdays he would take me in there and we would make the sauce for the restaurant. And so, he would show me how to do it, and I basically just stirred it. And unfortunately, that's the only detail other than the love... I can't give you details about the sauce itself. And as you know, that's really not my jam at this point, but, you know.

KS: I guess as I was reading Sam's case, as well as all of the others, I just feel like you and Ellen have done such a beautiful job of bringing this very 'person-first'. I could really see how I could adapt some of these ideas, assessments, and treatment strategies that you've put into the book, even if I didn't have someone exactly like Sam that I could implement them with. So, thank you. Thank you.

ND: Thank you.

KS: As we wrap up, do you have any final thoughts you'd like to share with our listeners?

ND: I again want to express my true, deep gratitude for chatting with you today and for the generous and forward-thinking community of Aphasia Access, truly a game changer for the field. If anyone is interested chatting more about implementation, I hope you reach out to me. I'm always more than happy to talk and brainstorm about ways that we can move this forward. There's also an Implementation Science and Aging Special Interest Group that's free to join. It's interdisciplinary with some people in mental health, nursing, social work. It's all people across disciplines who are interested in who are interested in merging the worlds of aging and implementation science, I can give you that info to put in the show-notes.

KS: Sounds great! We'll add that and your Twitter handle and website for Practical Implementation Collaborative to the show notes. Natalie, thank you for taking time to share your story and work with us. Congratulations again on the Tavistock Scholar Award.

ND: Thank you so much, Katie.

On behalf of Aphasia Access, we 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 topic email us at [email protected]. Thanks again for your ongoing support of Aphasia Access.

Connect with Natalie Online

Practical Implementation Collaborative

https://www.practicalimplementation.org/

Natalie Douglas on Twitter @Nat_Douglas

Links Mentioned in Episode

Implementation Science & Aging Research Special Interest Group

https://www.isarsig.org/

Project BRIDGE – Stakeholder Engaged Research

www.projectbridge.online

Read More In-depth

Bauer, M. S., Damschroder, L., Hagedorn, H., Smith, J., & Kilbourne, A. M. (2015). An introduction to implementation science for the non-specialist. BMC psychology, 3(1), 1-12. https://doi.org/10.1186/s40359-015-0089-9

Douglas, N.F. & Burshnic, V.L. (2019). Implementation science: tackling the research to practice gap in communication sciences and disorders. Perspectives of the ASHA Special Interest Groups, https://doi.org/10.1044/2018_PERS-ST-2018-0000

Hickey, E. M., & Douglas, N. F. (2021). Person-Centered Memory and Communication Interventions for Dementia: A Case Study Approach. Plural Publishing. https://www.pluralpublishing.com/publications/person-centered-memory-and-communication-interventions-for-dementia-a-case-study-approach

Schliep, M. E., Alonzo, C. N., & Morris, M. A. (2017). Beyond RCTs: innovations in research design and methods to advance implementation science. Evidence-Based Communication Assessment and Intervention, 11(3-4), 82-98. https://doi.org/10.1080/17489539.2017.1394807

Welcome to the Aphasia Access Conversations Podcast. I'm Jerry Hoepner, a faculty member in the department of Communication Sciences and Disorders at the University of Wisconsin – Eau Claire. I am privileged to introduce today's guest, Brendan Constantine. I'm excited to have a conversation with Brendan about his work with poetry for individuals with aphasia and related disorders.

Brendan Constantine is a poet based in Los Angeles. His work has appeared in many of the nation's standards, including Poetry, Best American Poetry, Prairie Schooner, Poetry Daily, Tin House, Ploughshares, Field, Virginia Quarterly, and Poem-a-Day. His most recent collections are 'Dementia, My Darling' (2016) from Red Hen Press and 'Bouncy Bounce' (2018), a chapbook from Blue Horse Press. A new book, 'The Opposites Game,' is on the way.

He has received support and commissions from the Getty Museum, James Irvine Foundation, and the National Endowment for the Arts. A popular performer, Constantine has presented his work to audiences throughout the U.S. and Europe, also appearing on TED ED, NPR's All Things Considered, numerous podcasts, and YouTube. He holds an MFA in poetry from Vermont College of Fine Arts and currently teaches at the Windward School. Since 2017 he has been working with speech pathologist Michael Biel to develop poetry workshops for people with Aphasia and Traumatic Brain Injury (TBI).

Take aways:

1. Learn about Brendan's poetry workshops for individuals with aphasia and traumatic brain injuries.
2. Hear about the work he has done with Michael Biel's poetry group, the Chippewa Valley Aphasia Camp, and the Blugold Thursday Poetry Guild.
3. Learn how poetry can reveal competence, self-efficacy, confidence, and self-worth for poets with aphasia and brain injuries.
4. Hear examples of some of the poetry writing prompts and supports needed to facilitate successful outcomes.
5. Learn how poetry fits into the life participation approach.
6. Hear a few of the perceived outcomes from poets with aphasia and brain injuries.

Interview Transcript: Note – a person with aphasia in the group calls Jerry "The Professor" and Brendan the "California Guy", so we decided to keep it that way in the transcript.

The Professor: All right, well hi Brendan good to see you. I'd say nice to see you again, but we just had poetry class together a few moments ago, so great to see you again five minutes ago. Yeah, we're glad to have you.

California Guy: So, yes, it's wonderful it's wonderful to see you again and yeah, we did just have a great class.

The Professor: Yeah, it's been a real treat and a real privilege to be a part of the poetry group so I'm excited to talk about that a little bit tonight and about some of your work and other poetry classes and workshops as well. So, shall we dive into it?

California Guy: yeah, absolutely okay.

The Professor: sounds good, well, maybe, before we start, I know you but not everyone does. Can you share a little bit about yourself, about your poetry about your teaching. That kind of stuff.

California Guy: I'm a poet, based in Los Angeles California born and raised and for roughly the last 25 to 26 years I've been making my living here as a poet, and the teacher identified as a poet first and the teacher second maybe because even though I've been doing it for a long time teaching still scares me, and I think of it is something that I do, in addition to writing permanently I've got or a collections of poetry in print and based on the way and a lot of publications in in national journals and I've been fortunate enough to have my work adapted for the screen and I'm doing I'm doing pretty well for a poet these days and trying to think what else I. I've been fortunate enough also that my work has been proven useful. That is to say that my poetry is taught in a lot of places and because it seems so conducive to teaching that's really how I got started with teaching was that began with people reaching out and asking if they could use phones in the classroom and then asking if I would come and visit their classrooms and now I'm not only a full-time teacher at a local high school or high school, I should point out, incidentally, that rejected me as a student back in '78. But I also I also get to work with different groups I work with adults who have been away from writing and are just coming back I work with I frequently work with pick an elementary school and lecture at the local colleges a few times a year. And then there are groups like ours, and some of the some of the classes, that I would say, are more specialized. I think a long ago with some around 2009 I met a man named Gary Glaser who had developed a series of poetry workshops for people with Alzheimer's he created a really interesting series called the old timers poetry project and, on the strength of that and working with him. I started working with the facial book Club in Los Angeles, and then ultimately got to work with got to meet and work with you.

The Professor: I think that's a terrific answer and I, and I appreciate that you said. Your poetry is useful because I'm interested in diving into that what's useful about it, I kind of phrase, the question I'm not really sure how to address this but is it something about the power of poetry transcendence this ability for people to express things that they can't express other ways, you have ideas about that.

California Guy: yeah and the only thing I'm struggling with right now is making sure that my answer doesn't dominate the rest of our time together because it's so loaded. When I first started writing poetry in earnest our tree was experiencing as it does, I kind of, there was a wave of interest in popularity that was that was cresting in the middle nine days. And we were seeing a lot of poetry, at least, out of here, I was aware that poetry was starting to appear on the radio, you were hearing it on you know, on NPR and prairie home companion, and things like that and Things more people were getting gift anthologies of poetry and poetry was starting to enjoy an interesting higher profile slam poetry was also coming into its own and right at that time, the word accessibility started to become a bad word. At least among poets, a lot of poets felt that there were there was too much work out there, that was playing to the audience that wanted to be like. As often happens when anything becomes popular you know, a certain group or sunset identifies everything that makes it popular and immediately begin to disdain it. And likewise in poetry circles, you heard you know lots of folks going well you know. There were a lot of what they called make poetry, it seemed that just poetry was you know, was coming up through the floor and that there was you know, there was tons of it and it wasn't very good work was happy or it seems to have lots of buzzwords and then, once I take accessibility became sort of a bad word efforts paying attention to that I was mostly because I I'm sort of amused by it seemed like a fake issue. It seemed like a fake problem I look at people are reading phones and being moved by. You know why, would you even bother to criticize that you know why, would you bother to say Oh well, there's so much sameness. I think that sometimes people are afraid that work of quality will be drowned out or somehow muffled by an abundance of lesser work but I, I firmly believe that you know, a it's in the eye of the beholder and be only the future nose art. And with all of this sort of swirling around in my head, I have saw instead of accessibility, I saw usefulness, you know, I think that I think that people's attention is a very valuable commodity, and I think it only gets more valuable it only gets more precious because so much competing for attention so much that is worthy is competing for attention the easy observation is that with social media and the phenomenon is celebrity that there's a lot of stuff that is worthless that it's competing for attention, I also think there's a great deal of very important stuff that competes for our attention. And for me to ask for your attention. As a poet I'm asking something serious from you, you know why should you pay attention to me I better have something interesting and useful to say you know. You know if all I'm going to do is shake my fist at you, or just try to make you feel good, then you know. There may be merits to that, but I feel like I would like there to be something useful something that you can take away, something that will clarify something or allow us to identify with each other and so that is the kind of usefulness, I mean then there's the other, there is another kind of usefulness now, which is I believe that as a poet, you know if you are not going to take some responsibility for the excitement then you're going to be complicit in the boredom, and that means I need to look at the work of my contemporaries I need to look at the work of people around me and make noise about it when one thing that I think and share it and put it out there and I also need to help raise the voices of the people around which is one of the big reasons that I teach. And, and that too is another kind of usefulness take the skills of poetry of the things that we use to identify a poem as upon rhythm meter similarly metaphor image personification hyperbole citation all of these things are useful and practical. You know, I believe that metaphor is in fact a gateway to compassion. You know if on a you know spending my days wondering how the light shields, as it falls into the room and how the Chair feels you know I when I luxuriate into it, if I'm wondering about how everything around me feels then it's going to be a lot easier for me to remember to remember how you feel or you know or ask how you feel. And, and I think these are just you know, some of the uses that I'm referring to.

The Professor: that's terrific and just to reiterate a couple of those points I think I'm right in saying that it's useful for the people who consume it and useful for the people that produce it right yeah and then that idea of raising up those voices I think it's really powerful as we think about you know, using poetry, with people with stroke and brain injury and dementia, as you said, yeah.

California Guy: And a way to segue into that and again I'm hoping your editors will help us cut to the chase well I say I'm a lot I think poetry emerges from culture to culture, for you know, a very simple reason, and that is that. Most of life, he is in fact indescribable that life is you know is characterized by things that just seem impossible to relate things that either are very minute and subtle or things that are huge and breathtaking. And that vein what it's like to be alive and any moments to convey mortal self consciousness to another person it's an almost impossible task, and so we try to come up with other ways to stay the unsayable music is a big one dance is another painting drawing sculpture. You know plays theater movies, these are all an effort to sort of brands like what it's like to be alive and conscious and reacting to things in a mode and perhaps the most perverse of all. Are those of us trying to attempt, the unsayable with language. Because right away the deck seems to be stacked against us, if I just tell you that I'm having a good day or a bad day you will never feel it with me. If I get into a little more detail if I say it was a rough day at work or I felt that nobody was listening to what I was saying, or there was a great deal of traffic again you'll have information, but you won't feel it with me. But if I can give you something that it was like, if I can give you a simile or a metaphor, that I can give you the subtle textures colors sounds and shapes I can give you an image to see in your mind then maybe you and I can start to have higher communication, you will start to know more closely how I felt and as a poet, I know that once I except as my goal as just trying to translate a feeling to you, then I can use just about anything to get there and it has been most wonderful reeducation. The tools of poetry are the characteristics or three are working with people that have traumatic brain injuries and us and language processing disorders, people with like aphasia. Because. In poetry, because feeling is first there's a lot more room for how to use the language and when I encounter a new writer who's dealing with aphasia and they begin to understand that they really can you know work with whatever words are coming to mind, even if they feel like the wrong word, you know that poetry, you know that all poetry suffers from a great deal of inaccuracy and then every poet or the history of poet poetry. You know feels like they got it wrong and they didn't quite choose the right word that there was probably a better word out there, that also most of the word rules of language don't necessarily have to apply, I can write a poem using perfect grammar but I don't have to I can, if I need to abandon subject verb agreement and just put my emphasis on cultivating images and communicate by just relaying to another person, you know, in very what we call in poetry compressed language. You know the bare bones of my sensory memory, you know I touches taste sound smell, you know textures these. That this may be, all I need to create an emotional experience and the reader or the listener. You know, and that it will be its own thing that it will be viable it'll be upon. You know, it will have magnitude. And you know, working with people that have aphasia working with people that have traumatic brain injury folks, that is to say folks that you know. Or you know just putting together a simple sentence might be a challenge it's been amazing to watch what happens. When you just change the focus a little bit instead of saying tell me how you, you know about your day or write me a story about your day if they know going in that they're working with poetry. And then every single word that they choose, will mean potentially more of an itself, you know. But every word that they that they managed to come up with will have a greater currency, you know or for any audience, because, of course, when we experience poetry if we read poetry listen to poetry, we paint we attend it differently than we attend the other things don't like I mean if you know you're reading a problem you're going to read it differently to yourself. Then you would then you would read a story it's a different act of attention and we know that you know that going into it, that there is a kind of preciousness to every word that we might not attribute with just a prose narrative story, and I have found that this has only been empowering people with aphasia and traumatic brain injury.

The Professor: I just gotta say I one of the things I love most about working with you on this is your ability to acknowledge competence, you may know not know the but the nerdy speech language pathologists that listen to this will know the term acknowledging competence, this idea that we convey through our words through our actions through our non verbals that someone has the capability and that expectation for competent performance. And I think what you just talked about is really important, if someone's thinking. Oh, I want to run a poetry group, but I don't have Brendan Constantine I think the key is really this idea that you said poetry, you know it is really a heavy lift in that you're trying to explain the unexplainable and you're trying to do it with words and yet we're asking people who have trouble with words doing this, I think your flip of saying, but the angle at this, is that you can use any words and you can use the words that are at your disposal, and you don't have to use them correctly and you can still be really successful and as we've learned really moving in and how you use those words. I just think that's the most remarkable thing about the poetry groups that I've been a part of.

California Guy: Thank you, the therapies that I have encountered for people that are dealing with language processing disorders, they tend to be very corrective predictive therapies, you know the example that comes to mind is. Where, for instance, someone will be presented with a worksheet that has a drawing of a bed. And then there'll be an incomplete sentence at the bottom and it'll say when I'm tired I get in my blank and the person with aphasia or TBI is being guided to you know. To finish the sentence in a very predictable way because the emphasis is you know, we need to help them get you know back in the habit of simple communication and being to identify their needs, and this is, this is a very necessary kind of therapy, but. When it comes to poetry what's interesting you know poetry and creative writing in general is we're not interested in the next expected word. You know of you know we're interested in the word that will be emotionally true, and that may be a very unpredictable thing I've found you know witnessing a lot of paraphrases you know word displacement word substitution. You know, you know the substitution of you know, words that are genetically similar to the word that the person wants to use that quite often even when you know, a person with aphasia feels toward it in the act of trying to say something very simple and chooses the wrong word. That goes quote unquote wrong words. Nearly often actually are emotionally compatible with what they are trying to say, you know that you know if they're the wrong words they're only wrong by so much there inexact and that's different. And, and you know many, as I say, it's exactitude that a lot of therapies are trying to produce, but in poetry we're not really interested in exactitude largely because we know it's impossible. I mean great, I mean you know, working with metaphor trying to write this way to communicate through poetry is a lot like you know I liken it to the way diamonds are graded you know if you go to a jeweler and buy a diamond. The scale he's working with has at one end a concept of a perfect diamond but a perfect diamond is, in fact, impossible to possess because on their scale a perfect diamond would be composed entirely of light. And then seems to be, you know that seems to be a perfect own would be as it Lucy when you know you know we're trying for something that you know we know we're never going to get all the way there we're going to get close you know and so. You know. Your employer poetry, you know it's you know. As I said, it is different to the rules, and I find that it does tend to accommodate you know people that have these constrained communicative challenges and to mention that you know quite often, you know. Another thing that that I think you know it's just such a simple fix you know if somebody is interested in creating a poetry workshop. A lot of your you know for people that that have aphasia or people that have traumatic brain injury the standard model of any creative writing workshop is that everybody gets together and ranks. You know, and we do some of that in in the group that you and I shared but if you're willing to just change focus a little bit and give your students time to work on stuff on their own. And instead of putting an emphasis on producing writing right there in the workshop that the workshop is the place where the writing happened. But instead put an emphasis in your workshop on you know communicating about what you like about poetry what you notice about you know a poem that you like and how it works and extracting from that things that you would like to try, with the group and say okay. You know, we looked at this kind of home and this kind of home seems to work by doing this either, it has repetition in it for its shaped a particular way or use a certain kinds of words okay now we're all going to try that and we'll meet again in a week and you give everybody plenty of time to work. Just that you know just that little difference can produce huge results, the pressures off nobody staring over their shoulder nobody's you know they get enough of that you know, but if they have time to say I'm just writing this for me I'm just feeling he's to work on. You know, then get ready for some really interesting results you know and that seems to have been the case with our class is you know they have a week in between sessions, and you know plenty of time to be comfortable with you know with whatever words.

The Professor: Yeah agreed and I've been really so we've been doing this, since November and I've been really surprised, but I shouldn't be surprised at how much kind of I'll call it poetry theory poetry approaches that people have just kind of adapted and really understand in terms of the way that they talk about poetry now versus how they talked about poetry before you know, tonight we had one of our Members share a poem about writing poems and it had all of those pieces in it right. You know about using imagery and about using metaphor, and about and was able to kind of talk about those things in a sophisticated way and how much of that that people can really learn and apply is really remarkable.

California Guy: From what I've seen there's and it's interesting because we do have some some folks in the class that are dealing with you know different degrees of challenge and I have found in particular, you know, am I allowed to say the names of anyone in the class.

The Professor: I that's a good question um I think it's probably okay to say a first name that's fine okay.

California Guy: Well, today we have you know we have we had a student named reached out to I think of the folks that we work with has perhaps one of the most extreme. Challenges and what has happened, has been really remarkable because you know, because the pressure has been taken off of her to find the exact words that in fact. She seems to have embodied the principle that, if I can describe for you all the things around the thing that I want to talk to you about. You know I mean Sometimes I feel as though there are very specific words that she cannot some. And so, she gives us all the nouns that exists around that particular now literally like you know case in point, if I couldn't you know, think of the word bed, you know and instead describing everything else in that room or naming all of the things that are on the path. And of course, her poetry that's only going to make the he's more vivid, so you know. If she tells us about going on a trip. She mentioned, you know. The sunlight, you know, on grass and ducks in a pond and the thousands of people getting in and out of their cars. And the wind and her ears and all of these things come up and she does it in one or two words and it's not in complete sentences, but you never miss a beat and these incredible rhythm. You know and it's really pretty stunning, you know, and she knows that she can she can move from image to image to image to image and take us through the course of a day at a lake you know and it's you know it's really quite exciting, this is, you know this is more than once I've you know. I've got my thoughts myself, you know I, you know as her family aware of this or that story that she's you know anything at this, you know. In a home, you know she'll make reference to you know, surely you know, surely to talk about a perfect day or so throwing a memory from childhood and I think. You know this whole sounds like stuff that's coming out here for the first time, you know I mean you know and endeavored to just talk about those things directly would never have done so with this depth of feeling.

The Professor: Yeah agreed, you know when you were talking about this, we had a conversation about this tonight in group, one of the most popular or common phrases that our group Members say may become a title for one of our publications about the poems. Which is, I don't think I did this right.

California Guy: That's right. We here at every assignment, you know when we meet up again yeah I don't think I did this right and of course that's become my new favorite thing to hear. Because you know it means they're about to blow me away, it means they're about to do something totally unexpected with the prompt. that's another thing for anybody that might listen to this and is interested in putting together a workout. And you want to give your you know your students. Challenges you know I find don't try to you know, don't give them exercises where you know what the poem is going to look like when it's done don't have to fix an idea of what the finished product should look like, in fact, ideally, probably have no idea what the finished product is supposed to look like. You know the this you know, because the class is going to take it in their own direction anyway, you know and so long as they have the freedom to take it in their own direction. You know, it tends to get really exciting, because they will invariably show you things that you just did not see coming you know and I have seen that happen, you know from time to time, where you know, a workshop instructor will give an assignment with very specific instructions and the writer gets a better idea, and you know along the way the prompt inspires them, and you know, which is what you're hoping for, but then they sort of deviate from the rules of the project and take it in some new direction. You know and I've seen it happen, where, then the workshop leaders say, well, you did it wrong. And they didn't they did it right it's a creative writing class. They should be writing creatively, it would be, it would be an amazing if the one thing that got in their way was the assignment, you know. Hopefully we're just you know I mean any good prompt really should just be a means to get you started. yeah, just you know, because you know once the poet has some momentum, you know, let him go yeah.

The Professor: Again, that comes back to that principle of acknowledging competence and having that expectation that people are going to produce something that will blow you away I'm kind of jealous for your high school students, because my high school poetry was never that good. So maybe we can talk a little bit about some of the other poetry workshops and classes that you've run so you talked a little bit about the poetry work that you did with individuals with dementia. And I know that you've done some work with Mike Biel maybe that's a good place to start and a lot of our listeners will know Mike.

California Guy: It was really interesting experience back in 2017 I got a letter from Michael Biel I believe he wrote to me through my website and I. He may remember this differently, but I recall that he had heard my name associated with the Alzheimer's poetry project, and he reached out and said look I run a book club for people with aphasia here in Los Angeles. And we've noticed a curious thing we look at all kinds of books, sometimes we read you know novels and sometimes we read you know, you know, a memoir and sometimes we do books of poetry, and whenever we do poetry group discussions become much more animated and engaged. And he said I wonder if it would be possible to lead a poetry writing workshop for people with aphasia I said, well, I you know I don't know how to. You know, work with people with aphasia so I'm just going to teach a workshop for writers and see what happens and if that's good with you will, will you know we'll see if this works, and so I came in and I started with you know lots of very basic prompts. Because I had some experience working with children. I was used to you know it's actually or what I should say I should back up and start with point over I'm fortunate enough that a lot of how I learned to teach started with kids because it affected how I work with adult. When I'm teaching writing workshops with adults, I will quite often bring in props and toys. I'll bring in games and things to sort of simulate creative fun, and so it occurred to me that if I was going to be in a room full of people who were having trouble thinking of words. That it might be smart to bring object, it might be straight, you know, in addition to bringing writing materials and examples of poems that I should bring you know seashells and bones and and uh you know pocket watches campuses you know can be just about us, you know anything I'm going I was bringing in rubber toys, in addition to simple poetry games and toys like magnetic poetry or Taylor molly's wonderful invention metaphor dice. And there's a bunch of these devices out there and I also spent an afternoon just writing random words on index cards. And I just brought in all of this stuff and I started out by talking to the group about what I liked about poetry asked them what they liked about poetry we looked at some different kinds of poetry that was very expansive but also lots of poetry, where the poets communicated in just a few words we looked at haiku poetry we looked at homes by Thomas transformer and we looked at a beautiful poem called silence by Laurence Dunbar Paul Laurence Dunbar I should say which the group really seem to enjoy it was all poem about when you don't need to speak and we looked at a bunch of different kinds and poems that seem to have no order to them and poems were the language was all over the page and we just started there and very slowly got a sense of who, who was comfortable taking a pen in their hands that day, who is comfortable just moving around pieces of paper with words on them desk who wanted to intersperse. You know words and dice and some of the objects together on the table in front of them and make a sentence that would have visual half you know language managing all of you know. And we did you know from session to session started that simply and we started to notice that you know from session to session, the group was becoming a little more fat file a little more comfortable with these materials and the work became more complex. Until You know yeah and I mean I think it's important to emphasize that I'm not talking about touring anything. You know and I'm not talking about poetry as a means to overcoming. A failure or repairing the brain, but what was interesting to me. More than interesting what was actually astonishing with that. There were a couple of students in that class who had given up on holding a pen. Because they had their, the aphasia they had was the result of multiple and severe strokes, which you know resulted in paralysis and you know they've given up on being able to you know steadily hold him suddenly being renewed in their desire to do so and actually managing to get. Like a pen. Steady in their good hands, knowing that if they could just get a few words, so they didn't have to construct a sentence, you know, a one student in particular began isolating nouns it took her while you know she would take the session to do it, she would start isolating the nouns that she wanted us and spacing them out with a live seeds using you know dots and dashes is connective tissue and you know, there was this sort of renewed vigor and You know she gone from you know she started out the first few sentences. Pointing you know to an assistant, you know pointing with an assistant at various things and saying you know put that next to that next to them and now she was taking the pen in our hand and starting to write poems out by hand. And then you know, once you know, and then, once she had the freedom to take you know, as I said, take the things home and work on it for a week. And you know she was there, you know whether index finger and making words on a keypad and doing the same thing, using an ellipse ease or dots and dashes or forward flashes to sort of you know uh, You know, do the work of articles and incidental words and just you know and then information was and then.

California Guy: Oh yeah uh you know she was using dots and dashes and and various forms of you know, sometimes just period do the work of conjunctions and you know articles and connective tissue in her language and created this really vivid work. Michael and I decided that we would do a six-week session, and then we followed that with another eight-week session because the group really seem to enjoy themselves and wanted to do more of this and after the second eight week session, he was like Okay, you know. This is this is tested Now this is working over and over again and that's when I got to meet you because we went out to Asia camp in Wisconsin and tried to do some workshops there with a whole new group of folks and you know what started to happen in a really interesting way yeah.

The Professor: So maybe we can talk a little bit about what's been happening in our group and kind of where it began, and where it's going those sorts of things kind of how we approach things on the on the front end and welcome kinds of supports are provided that sort of stuff.

California Guy: Yeah, this has been a really interesting experience and again it's continued to broaden my understanding of you know what it means to be doing this kind of work. Oh, I'm at risk of a digression, but I think perhaps this is the context that will be helpful. hmm. At the same time I want to get a good handle on how I want to say this.

The Professor: Yeah, that's cool.

California Guy: As I said, poetry, when you study its origins from culture to culture, it really does seem to emerge in a pattern. And that pattern seems to be you know, of course, mostly of all languages, for the most part, begin spoken whether or not a culture will develop a written language it's not always the case, there are you know, there are exceptions around the world in cultures, where you know. A written tradition might not appear, or it might not appear, for a long time. But when the language is up and running, it does seem that, after a period of time people become aware that it falls short of expressing some very necessary things. That they're things that just cannot simply be named and that they need a special way to talk about special thing they need an intimate way to talk about intimate thing. And so you'll see people will start to use, there will be certain subjects for which they use only the most beautiful words in that language are only sacred words or they will as Pessoa says speak against the true nature of speech they'll give them music and unnatural rhythm or musicality they'll they'll give it a meter or they'll put it to music they'll they may even deliberately misuse their language for the purpose of fire communion because what it is that they seem to lack is an emotional vocabulary. And I think that's what that poetry provides is an emotional vocabulary and what I've seen with our particular group is this vocabulary gets bigger and bigger and bigger. And a famous poet said that poetry was a curious sort of language that is changed slightly by everyone who uses that well and. And our group has been sort of a microcosm for this, you know they started out very simply, and it seems to me that the first the first few efforts in poetry that we got on our on our very first session were largely sort of aphoristic that there were, you know that they there wasn't a lot of image, there was mostly there was mostly just sort of poems you know about being the best that you could be or being the happiest that you could be. They were poems that largely tend to be just sort of both writing encouragement and the more that they began to wait in from session to session to you know putting an emphasis on nouns over adjectives putting an emphasis on you know, on sensory details. On giving the language that kind of flow our rhythm and these kinds of things, and the more examples that they saw these the more different kinds of writing from which to draw upon you know presented to them with this is not a poem for you to imitate you're just looking at what the writer does and see if here's that word again if anything they're doing is useful to you and that you know by the third session we were seeing very vivid changes in how they were expressing themselves and it seemed to happen that fast, you know you know they've got a week between each session, you know so by the third session. You know there's you know, two weeks later. Suddenly, there are these very vivid transformation taking place, and not just in you know and with our with our Members that were, as you know, as we mentioned before, at very. You know, with very different kinds of trump you know and dealing with a very different sort of set of I don't I don't know whether to call and characteristics or pair of beiges or symptoms but you know one person in the group who for the most part is okay with sentence construction, but does tend to Max out over a period of time, and another person who you know who you know who needs two or three tries to get at you know at the sentence, they want and then you know, and then you know and get another person with a slightly more extreme case you know where they really can't very easily construct complete sentences at all on the first they really need some time you know to say let the words calm at their own pace, you know, and if they can't get the word say one you know get it, the words around the words they want. With interesting too and it's true at all levels of writing and by all levels, I don't mean all levels of people, you know that are in therapy with that, but I mean this is true of all writers in fact it's true of all our time has always been largely a question of what the artists does in dead of what they don't do well and that's where your true voice is going to become is going to come from and where it's going to be at its most particular and peculiar. You know. Billie Holiday didn't have a singer's voice neither did Janis Joplin it's what they did with what they fat instead of what they didn't do well, that made it interesting you know. You know, and I, and I guarantee you that if we were to talk to the people in our class about their own writing. I'm guessing that most of them were you know, or at least at the beginning, have felt that the very things that made their week writing week is just the things that to you and I make it the most interesting. You know, you know, and you know and for any writer in any class, you know who is looking at the radius around them and going well, I can't do what they do. No, you can't. Going right yeah.

The Professor: Yeah.

California Guy: Or rather don't make that her goal I don't I guess I wouldn't say don't try but don't make that your goal, because I guarantee you. You know weakness right like you. You know you're gonna have to you can't do what somebody else does you're gonna have to do what you do because trust me, none of us can.

The Professor: Yeah, absolutely I love that metaphor of Janis Joplin and Billie Holiday that idea of don't try to do what you can't do what you can it's just such a powerful mindset.

California Guy: When you're looking at supporting broke all over the place, I mean constantly falling off notes and leaving ABS of words, other than whatever what she gave us was so much more powerful you know I mean if she you know I started, and it is true, you know it's not always easy to get yourself in that mindset I get it, I mean I actually heard somebody say something to the effect that, like Thelonious monk was great if you didn't mind all the mistakes. Take you know where you take know your he did. Give me in the emotion, the raw emotion that's coming out on that keyboard. The thing that made my month. You know and made us want to keep going back you know you know those notes, some of them strong and some that are so frail You know, as you know, the way Hendrix would you know would blast through certain chords and combinations of notes and you know and just starting to fall off or get ahead of the bass, the bass, or you know it was just you know amazing you know that's where the artist that's where it gets spectacular.

The Professor: And I do.

California Guy: Yeah, and we've seen that again and again.

The Professor: Yeah absolutely so I mean, so this podcast is about an approach, called the LIFE participation approach for aphasia and I think what we just talked about just really encapsulates that idea of doing what you can do not you know kind of dwelling on what you can't do is just such a great mantra for that that approach, you know one other thing that you do that, I think. Always kind of instills this sense of confidence in this sense of I can take on anything in the world, and I think for anyone who's thinking about a poetry class, this is just so powerful, and I bet you use this expression with your high school kids with anyone. I'm not going to say this right, but you know, sometimes there are words that are in you for 30 years that just needed to come out and this is the moment that they come out on a piece of paper. That idea that you've got things inside of you that want to be shared and that you know, this is just kind of a vehicle for sharing them I just think that. Expresses so much confidence and that they're that they're capable of doing anything, and I think that's powerful.

California Guy: And I really you know for anybody that might be cynically going I was like well yeah but maybe you just had an awesome group. I you know I highly recommend that you just you just give it a shot. You know, and that you just you know you take your you take your expectations off of the end result and just you know going to find some poems that you think are interesting you know and be willing to share them with a group of people and be prepared to not have all the answers, in other words, you know, bringing a poem that you don't completely understand that you can't necessarily explain. You know and sit there with the group and wonder at it together. And because the truth of the matter is if a poet could have explained everything in their home down to the teacups they probably wouldn't have needed to write home. You know, and so you know if you're if you're willing to go into this with them and feel a little out of your depth, you know um. You know and just lead in and look at a handful of poems and just say okay we're gonna. You know what would we like about these poems what are these poems seem to do, how are they shaped you know. Is there anything with the poet does over and over is there, you know, is there something they only do once at the end that's really interesting you know well let's see if we can look up can do that, you know let's see if we can. You know, take that example and sort of run with it, and our own direction and I'll See you in a week you just pile up a few weeks to doing that and guarantee you you're going to see. You know, some changes, and if you if you can't find any problems to use you're not sure where to start writing poems to use in your workouts. Because there's just tons of gorgeous work.

The Professor: yeah, that's terrific so Brendan I was gonna ask you about outcomes, but I have a different idea. If I share screen, will you read because you're a much better reader than I am some of the right out of the horse's mouth, some of the expressions about the poetry group that group members have shared, so this is what they said about. What poetry group means to them, I think you'll be able to see this there. I'll let you read a little bit and.

California Guy: These quotes are examples of the therapeutic power of poetry. It's healing me it's all really helping me now. I'm healing leaps and bounds and other one says it makes me feel like my thoughts are coherent, whereas the rest of the time I don't feel like my thoughts are coherent it helps me bring my thoughts together. Another person says, I didn't know, I was a poet, I also didn't know, I was an international speaker it's pushing me outside of my comfort zone. I guess, I never realized that some of that stuff was in me and maybe I was trying to get it out, but I just didn't quite know how and it's just another avenue for. Another person ads it's helped me to focus my energy more it's helped me to focus my thoughts more because my putting words together oh sorry. I'm going to take that sorry going to take that quote again, it helped me to focus my energy more it's helped me to focus my thoughts more because my thoughts are scattered on a daily basis. Like I have trouble with concentration, I have troubled was putting words together and that kind of stuff So when I sit down and actually, I'm working on a phone it's like words come together miraculously. And I'm like wait a minute, if I could talk like this, all the time I'd be able to really communicate unfortunately life isn't about poetry. But it really has helped me it's given me the boost I need in life to realize that I am capable of something more than what my brain injury is making me capable of, yeah wonderful.

California Guy: Had you shared those important because I don't remember team that?

The Professor: I wanted to throw them on you right now, so you get kind of red face.

California Guy: Fear to make me cry in the middle of a podcast Thank you. Well yeah well that's miraculous and that's what you hope for, I should also say just and maybe I'm only saying it for myself. I do believe that the most successful that any writer can ever hope to be has nothing to do with publishing a book or having your name on a library or getting a Pulitzer it's not the green room, the most successful that I think you can reasonably hope to be is to meet somebody in your lifetime, who you know says. You know you wrote this thing and it stayed with me. You know. And that's it that's the green room that's you know and what's been interesting is that some of the folks in our groups I've started sharing their work outside of our class and are getting a really interesting response. One person and I guess, I can say first name is Katie was just telling me that. A piece that she wrote, is now being read at a funeral because somebody else you know she shared it with somebody else you know and You know, they were like this, this has to be this this get to what I can say. And you know I mean it's you know that's funny that's you know I mean how successful did you want to be. A waiter that's you know that beats the pants off of anything else you know and for somebody who you know already feels that a huge disadvantage to somebody who's already been dealing with. You know, living in recovery after traumatic brain injury to you know, to find that not only did they did they clarify something that they wanted to say, but that it was useful there's that word again for somebody else I mean that's. You know what are we after, not that oh.

The Professor: Absolutely, and I think both of you and I have felt this sense after multiple groups multiple classes, where we just say I just continued to be blown away by what people produce. And how they continue to just knock through that ceiling that glass ceiling that just accomplish things that I just didn't know was in them and they certainly didn't know was in them. For some of them I think what if they had never been a part of that class, and you know to not have known what potential lies underneath you know all of the struggles that they've been through. I think that's the power of something like this is to just see them break through and gain confidence and continue to do things that they didn't think they were capable of doing. yeah yeah. So, I was gonna say it's been a great conversation and just a privilege to be a part of this this work with you anything else you want to say to our listeners and closing?

California Guy: Just this. It has been my experience that writer's block is almost never a shortage of magic, it is almost always a surplus of judging. And if you can just take your expectations off of it, you know don't add it before anything lands on the page just let it happen. You will be amazed before you are halfway through.

The Professor: Absolutely, and I think you've created a space where people can feel like they have no judgment, where they feel like they can share and be successful and fail and screw up and begin each poem with I think I did this wrong. Right.

California Guy: Right and again it's always I mean it's like I said, it's my favorite here like as soon as I heard, like all this is going to be excellent.

The Professor: Absolutely, if all therapy for speech language pathologist with people with aphasia and brain injury was like that. Right, I think I did this wrong I'm going to love it. Boy, we got great outcomes.

California Guy: Yeah absolutely. Well, thank you so much for inviting me to participate yeah.

The Professor: Thank you so much Brendan and see you next Thursday.

California Guy: Next Thursday man.

The Professor: Alright, thanks. Bye-Bye.

Ellen Bernstein-Ellis, co-director of the aphasia treatment program at Cal State East Bay in the department of Speech, Language and Hearing Sciences and the 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 with Angie Cauthorn and Avi Golden. In honor of National Aphasia Awareness month, we'll be featuring these two stroke survivors who are very engaged in aphasia advocacy.

Guest: Avi Golden

Avi Golden was a practicing EMT and former critical care and flight paramedic with Northwell EMS and New York Presbyterian EMS. Avi holds a Bachelor of Science in Biology and has extensive experience as a practicing paramedic, both in the US and with Magen David Adom in Israel. After experiencing a stroke in 2007 with resulting aphasia, Avi now is a volunteer EMS. He actively partners with speech pathologists to educate the medical and lay community and is an active advocate for aphasia awareness.

Guest: Angie Cauthorn

Angelique Cauthorn, better known as "Angie," is the proud wife of Charles Cauthorn. They live in Moorestown, NJ along with their cat Tigger. Prior to her stroke, her jobs included a national top selling manager of Radio Shack, a mortgage banker, and at the time of her stroke in 2017, the finance manager of one of the largest car dealers in the country. Pre-stroke, Angie was on the Board of the Eleone Dance Theatre for 15 years as well as a youth leader and basketball coach. Angie was a panelist at the Aphasia Access 2021 Leadership Summit. She is now an ardent aphasia advocate and is co-founder of the newly formed Aphasia Resource Collaboration Hub (ARCH). ARCH is working to become a clearing house for available aphasia resources and services in South Jersey, Philadelphia, and Delaware areas.

Listener Take-aways

In today's episode you will:

• Learn why it's important to provide aphasia education and communication partner training to EMS students and providers
• Learn the benefits of engaging in disability sports for individuals with aphasia as a means of strengthening social connections and creating opportunities for fun.
• Understand the value of having updated flyers in your waiting room or on your office bulletin board
• Learn about the plans for the Aphasia Resource Collaboration Hub (ARCH) and how the organization hopes to connect stroke survivors, their families, and researchers.

Edited show notes. This transcript reflects the guests' original responses as a way to acknowledge and honor their ability to be highly effective and gifted communicators even when facing word finding challenges due to their aphasia.

Interviewer: Ellen Bernstein-Ellis

Avi, welcome to the podcast. We've had fun just trying to get everything to work today. And you've been laughing a lot already. I know it will be fun to interview you today.

Avi Golden: Thank you very much. And you too as well.

So we'd like to start with an opening question. Is there an aphasia mentor that you want to give a shout out to?

Avi Golden: So for me, again, for me, the speech, a speech pathologist works with me together every day and I love it. I work all the time. I laugh, but very good, but also, I speak with a speech pathologist together talking about aphasia with EMS or police or hospital around the world. And I want to say I forget the name, the guy, the girl, the girl the Karen. Not Karen.

The one that we talked about earlier, Kaitlin Brooks? Is that right?

Avi Golden: Yes. She and I spoke many times, many times, with EMS or hospitals. And Kaitlin is amazing.

You just gave a hats off to speech pathologists in general because you're still working hard on your communication, but you also now have a different role where you're partnering and presenting together all the time, and that's part of what we're going to talk about today. So, thank you.

Avi, you had your stroke in 2007. And it was following surgery for mitral valve prolapse. Maybe we could start with what you were doing before your stroke. Would you like to provide our listeners with a little personal background?

Avi Golden: Sure. 4, 5, 6, 7, 8 years I was a nor-uh, paramedic in Columbia Presbyterian and North Shore and a lot of part time at EMS. And then later I was riding for critical care and flight paramedic as well. And I was going to go to medical school. But first, I had, my father, who is a radio- he was a radiologist and he, he has a, he is, he was going to surgery twice to have a mitral valve prolapse. So I have a hereditary, is hereditary. So I have prolapse. So I say l, you know what, before medical school, I want to go to surgery and then go to medical school. Okay? Unfortunately, in the surgery, I have a stroke resulting in aphasia.

Okay, and Abi, what was your communication? Like right after your stroke?

Avi Golden: Sorry, sorry, I'm not laughing at all. I'm crying no--. It's funny, Is for basically one year, again, everybody is different. That's my number one. But for me, basically, one year, all I could say was "Michael" l, and I have no idea who Michael is. I mean, maybe my roommate, maybe my cousin? I don't know. But so everybody's like, who is Michael? I'd say, "Michael, Michael, Michael" So yeah but...

You're laughing, maybe at the memory of how surprised people were? You're shaking your head. You would come out with "Michael, Michael, Michael" and people would try to make meaning out of that. And you didn't really have meaning for that.

I can already see the teacher in you. Because you're already starting off by saying, "Okay, I'm going to speak for me because everybody's different." You recognize right away that there's not one rule or one description. Yes, you're shaking your head in agreement.

What was the adjustment process like for you? You said that for a long time, you wondered about going back to medical school, but then you told me when we talked last week, that you had three things that you thought about doing. You started to prioritize and adjust to what was going to be next for you. Do you want to share what that was?

Avi Golden: So in my head, swear, I swear, I want to go to medical school. So I am working with a speech pathologist together every day, working to try to speak, not, not normally but is getting better. And reading and writing, listening. And so (??) but also, I am teaching with a speech pathologist together, talking about aphasia with doctors, nurses, EMS, etc. And number three, for me, is disability sports. Before, sports, a lot of sports, like (??) well, I don't like it, but hiking or skydiving, and it's the same thing for disability.

That's gonna be our focus today is to talk a little bit about your EMS training and disability sports. And we'll start with your EMS and aphasia advocacy first. And as we've already figured out, I probably need a whole episode just for you. And I'm going to feel the same way about Angie when we talk.

How did you start as a public speaker and teacher about aphasia? You shared with me that you walked into the National Aphasia Association office (NAA) in New York. Can you tell me about that first encounter?

Avi Golden: So NAA was in New York City. Now it's, unfortunately, Virginia. But I, I was, like, six months after the stroke. So I walk in the office, and I say, "Michael, Mike, Michael." And the guy, the girl, is like, "Thank you. Thank you. I understand, but who are you?" And I say, "I'm Avi Golden, Michael." And then I will walk out because I'm, I'm, is like, angry. But later on, so Elaine Ganzfried, who, who was a President.

Yes, the Executive Director, that's right.

Avi Golden: Yeah. So she come back. like, one or two months later, and she said, "You know, I speak, I am speaking with people with aphasia, about aphasia, with doctors or nurses or PA or EMS. Do you like to come and speak about your story? And I say, "Awesome. Michael, Michael. Yes. Awesome." And that's the first time.

Wow, Avi, you're so comfortable. I've been joking that you've been as cool as a cucumber and I'm nervous. I'm more nervous than you about this interview. And you look just so calm. And you've been patient. I've dropped the microphone a few times, and you've been great.

Avi Golden: But it's twice, not three or four times. So that's good.

Thanks, Avi, you're keeping count. So hopefully, we'll have a fun interview because you are picking up on all the humor. But I was going to ask you if you were a public speaker before your stroke?

Avi Golden: No, not at all. Well, I mean, before the stroke, I was a paramedic.

So you weren't going around giving speeches. Okay, thinking back on that first time you walked into the National Aphasia Association office and said, "Michael, Michael, Michael" as you told me, to now, how many speeches have you given over the past 10 years?

Avi Golden: I will say, I don't know. It's a lot. So I, I speak with EMS, police, firemen, hospital, around the world, because it's Zoom now, but also people with a disability, kids, etc.

So, would you estimate more than 50 speeches in the last 10 years?

Avi Golden: Yeah,

More than 100 maybe?

Avi Golden: I don't know, maybe one week or two weeks, every day, every month, every week, one to--

One to two speeches a week?

Avi Golden: All the time.

That's a lot of speeches over the 10 years. We'll put your contact information in the show notes. And we'll keep you busy. Avi, you've built a beautiful PowerPoint with lots of photos to help share your story. How do you typically prepare for a presentation?

Avi Golden: So before? I mean, after the stroke? So three years, I don't have a PowerPoint, so I speak for like two or three days, uh three or four, two or three minutes. And that's it.

And then, in my head, it says, "You know what? I have a PowerPoint." So, I can have a PowerPoint. And then, number one, you, they have, see, what's going on? And also, I understand. I know that it's more before in my head. I know, but then, I also don't know, later, until later on, and, but the EMS are shut down. Do you understand?

No, I lost that last part.

Avi Golden: I speak with three, three or four minutes, but I don't, I... rarely, I don't know, is, after with the PowerPoint, I have a list of stuff. And I look at the list. And I say, "Oh yeah, I forgot." But then, I remember because, I, yeah...

So it's like not having to have notes or a script because the PowerPoint is leading you through the story. And that serves as a way to help guide you.

Avi Golden: Correct

And also illustrate things if you do have a moment where it's hard for you to come up with that word. Yeah?

Avi Golden: (Laughter) Okay, I know that too.

Thank you. So, you and I talked about wanting to use that PowerPoint for our interview. But since this is a podcast, we don't have visual support. And I really want to thank you for still being willing to have this discussion even though we can't provide that to our audience. But that's how you typically go through your presentations is by using the visual support as a visual script. That's become a really good tool for you.

Do you have advice for anyone who wants to start being an aphasia ambassador and public speaker like you? What would you advise?

Avi Golden: So, number one, I, um, a lot of people who has aphasia, speak with me together with EMT um Speech pathology students or OT students, etc. So, they speak about their stories. So that's number one. They have a PowerPoint. So, it's number two. And number three, please, please come either talk with about one or don't talk, but speak about their, your story. So, number one, please work with a speech pathology because it's amazing. So nice. So brilliant. People, people with speech pathology work with me, Work with them, and it's wonderful. Laughing hysterically but working all the time. But also, people who have a disability please come and speak about their, uh my, uh your story.

You were hoping that I would invite more people onto this panel. I said that we will never be able to tell everybody's story (in 30 minutes). But you so firmly believe in collaborating and the strength in having multiple voices. That seems to be a really impactful approach for you.

Avi Golden: Yeah. Yeah. Absolutely.

And that you like to collaborate with the speech language pathologist.

Avi Golden: People with aphasia as well.

Yes, absolutely. Speech pathologists, people with aphasia, and you form a team, a partnership. And you said you like living in New York because there's so many resources, right? You were listing all the wonderful places you go-- Adler, Teachers College...

Avi Golden: NYU, Mona Greenville is speech pathology, so she, I go twice a week, I go twice a week, but other people is three times a week. So it's Mona and the students. So, it's one, one versus one for one hour, working, and then three or four hours, a group together, and have a good time speaking, reading, listening to jazz, you know, stuff like that. So it's very, very cool.

I noticed that you have quite a presence on social media. And that's part of how I got to meet you and see that you were just all over, going to different places and participating in a lot of different activities.

Given your connection to EMS as a paramedic, let's focus on that for a moment. What do you want to make sure that a new EMS responder understands about aphasia? You go to schools, EMS training programs, and you're trying to help new EMS students or future EMS providers to understand aphasia. What do they need to know?

Avi Golden: So I call or I email all the time, every day, like three or four, three or four different websites or even uh websites or people. And I ask them, I say, "I have, I have a stroke so it's hard to communicate. But before I was a paramedic in New York City, and then unfortunately, I have a stroke and aphasia. I was wondering whether it is okay to speak, or now Zoom about aphasia with EMS or hospitals with a speech pathologist all together." And about half of them don't go or don't call me. That's okay. And half of them say, "Yes, please come and teach them about aphasia."

Is there something particular that you want EMS, the new paramedic to learn? Because you actually pointed out to me how little information is shared with EMS during training by the textbook itself? You said it's like a 1000-page textbook, and what's the problem? (Avi holds up four fingers) That's four, four what? You're holding up your hand, four?

Avi Golden: Four words, four words.

About aphasia?

Avi Golden: Yeah. So before, before, also, I was reading a lot is, you know, 1000 pages, whatever. And I have is, aphasia is small and saying, "They speak not normally." So, it's like, I don't know, whatever. It's, it's so small, who cares? You know, I don't do it. I have to go to hospital, I go to, I am going to ambulance to ride with a heart attack or trauma, whatever. So, no problem.

But then after the stroke, and aphasia, I went to the textbook, the same textbook, and I read aphasia, and it's four words. And I say that (high pitch voice) it's only four words, in my head,

With your fingers you're showing me teeny tiny, just teeny tiny. I will share that our next guest is going to talk about part of her story that was really frustrating to her--something that the EMS responder said to her at her stroke. I don't want to spoil her story now, but it just went to show that that EMS provider must have not been to one of your speeches because he really didn't seem to understand the aphasia.

Have you been asked any surprising questions by any of your EMS audience?

Avi Golden: One or two times? Yeah, I don't remember,

They get interested and they get engaged and you put a real face on what it means to have aphasia and share your experience.

Avi Golden: I mean, thank God for you, or EMS. But for me, I'm still, still, not crying but I'm saying, "I want to go to medical school, I want to go to medical school." but I'm still speaking, so that's, so that's good for me.

You do a lot of your aphasia advocacy with EMS because that is your peer group, that was your passion, and you have a strong connection, and they understand that you know their work really well.

And you also go out to medical schools and to speech pathology schools and occupational schools and help people go beyond that two or three lines in the textbook, right? I think it's incredibly important work. So, thank you for continuing to do that. And if you think about the many hundreds of presentations you've done, it's having an impact.

So I'm going to transition from your life as a public speaker advocate, and ask you to talk a little bit about your involvement with disability sports.

Avi Golden: Awesome. Okay. So again, before I was, it's called, it's called Jewish Outdoor Club. Is a lot of people who hike or also like skydiving or scuba diving or small things. So I hike as well together. And then I have a stroke, and aphasia. So I, so, I went to, oh, so, I was in hospital. And I saw the flyer says disability gliding. I said, "What is that?" So I went to the website, and I see is climbing. I said, "Oh, my God it's disability sport, disability people, disability sport, disability." And I, and I say, "Oh, and it's right down the road." So I am driving, I was driving, and I went to the plane and sailing with a pilot. And it's like, oh, my God, and it's disability. That's crazy.

I love that you brought up that you saw a flyer. Our next speaker, Angie, is also going to share that she saw a flyer and that led her to a really important place. I guess that the lesson is that the resources that we have available in the office or in the waiting room, you never know what people are going to see. And we need to keep those resources fresh and available.

So you started the Facebook page that you manage called NYC Outdoors Disability, and we'll put the link in the show notes. How did you start organizing outings?

Avi Golden: Now for me, but I live in New York City. So, a lot of, a lot of EMS, sports, like for example, Burke Rehab or Helen Hayes Hospital or Leap of Faith is a disability sport. In the summer water sports and winter skis, you know, and stuff like that. And I, I go and having good time with different sports. And then I say, I ... I, I email, I Facebook with a lot of different disability. But I also speak about, please come with a lot of sports.

So, this isn't just for people with aphasia. You're saying it's for people with all different kinds of disabilities. But do they seem to understand aphasia when you come or do you have to teach them sometimes?

Avi Golden: I don't care, you know.

You're not worried about it. You know that you'll deal with it when you're there.

Avi Golden: Exactly. (Laughter)

Okay. All right.

Avi Golden: And I, and I say, you know, before I was a paramedic, but then I have a stroke and aphasia, so it's hard to communicate. Don't worry, it's all good. I understand. So let's go. Okay. And it's like, Alright, let's go and then all right.

So it sounds like your Facebook pages are really a clearinghouse in a way. You're keeping the pulse on what new and exciting activity might be happening. And then you post it on your page to encourage other people just to come try it.

Avi Golden: That's it. That's it right there.

Ah, so you're not sponsoring these trips, but rather you're getting the word out. You're kind of giving people free PR.

Avi Golden: And I'd say just come one time, just one time. Come and just try it. Because first of all, it's free. Disability sport is either cheap or free, I swear, free. And number two, you can try and have a good time. So you know.

So you're just trying to get people to engage in activities that will be fun. And to show them that there are things that maybe they thought they couldn't do because of their stroke, but they can do because there's all sorts of efforts being made to adapt, accommodate, and make it happen.

Avi Golden: Yes. And also, I have a lot of magazine called, is a lot of magazines. And in the magazine, is either magazine about people with disability, or sports. So, you can go to a website and look for disability sports. And you can see a lot of more things to do for either me.

So, you're saying that if you're not in New York, because you're mostly posting the things that are in your area, which makes sense. So you're telling me that if you're not in New York, and someone's listening to this, they should go and Google 'disability sports' in their area, and they're likely to start seeing activities come up.

Avi Golden: Also, unfortunately, it's big cities. But small city, I'm sorry, it's hard. It's hard is walking, uh is driving. But for me, I drove all the time, because I like driving as well, but driving for two or three hours, because it's fun. But that's me.

The thing that strikes me is that you've decided to try to become an educator, because that's meaningful to you. It's challenging for you to practice your communication and you enjoy that. And you enjoy the collaboration and connection with the people you're talking to. It seems like you really enjoy talking to students and to new EMS responders and spreading the word about aphasia.

And then you also find the reward in disability sports because you're just trying to stay active. And we know that the incidence of depression and the sense of isolation is really high in aphasia.

Avi Golden: No, absolutely. Absolutely. And it's so sad. I mean, it's not sad. It's, it's, it's so... I, I say also, also, there, I say, please, I know...I know, it's hard to communicate, and a lot of people, even for me, I, in the beginning, I cried for two weeks, but then I fight because in my head I said, "I want to fight with, I want to go to medical school." That's my head, my story. But other people, says... in my head, their head, let's go fighting, fighting, fighting.

But a lot of people also is depression. And it's so sad. So, I am speaking about depression and say, please come try a lot of things to do-- sports, hiking, working, cooking, whatever you want, but just try, well are more and more

We know that exercise alone can elevate mood. So that's the bonus with activity like exercise-related activity. And number two, we know that having something meaningful to do, a meaningful activity also tends to help with depression. So, you get a twofer here-- disability sports are really amazing.

So I knew this time would fly by I knew this would happen. But I've really enjoyed it. I will ask you one last question. Oh, go ahead. Go ahead.

Avi Golden: The No Barrier Summit. I swear. Sorry.

You want to bring that up? Okay. So, tell us why do you like The No Barrier Summit so much?

What so, so, so three times, every year in the summer, is disability sports, No Barrier Summit is a disability sports or wounded warriors or kids, whatever. So, in the morning, skiing, scubbaing, hiking, whatever you want, it's fine is really good. But in the evening, people who have disability speak about their story. And it's, it is so powerful because everybody is like, Oh my god, really! You hike. You do it, you, you have blinded, you and you do it or, or scuba lessons, or whatever. Everybody is like holy crap. It's amazing.

So you are inspired by what people are able to do. And you think why can't I do it too? Maybe, is that...

Avi Golden: Yeah, and I am, and I am now speaking as well. Speaking and also schools, not school, sports. Also too. Have a good time.

So that's really been motivating for you.

Avi Golden: Yeah, yeah.

I will look for that link and put it in the show notes too.

Avi, what, what would you say are the most valuable lessons that you have learned as an aphasia advocate? Do you have anything final you want to go out with?

Avi Golden: Basically...uh..fight, work, working with aphasia. That's number one. Number two, remembering that, in my head, I want to do it. Whatever you want, Meaning, fight, fight, learn, and then have a good time.

Three lessons: fight, learn and have a good time. Thank you, Avi. I've had a wonderful time with this interview and getting to know you more than just seeing you in different places on Facebook and waving to you at conferences. So this has been a delight. Thank you so so much.

Avi Golden: Not a problem at all, please.

Okay. Hopefully we'll have you back in the future. We just hit the tip of the iceberg today. So, thank you so much,

Avi Golden: Not a problem. My pleasure.

I'm really excited to introduce our next guest, Angelique Cauthorn better known as Angie, she is the proud wife of Charles Cauthorn. And they live in Morristown, New Jersey along with their cat Tigger. And that's a gorgeous cat that you're petting right now I can see on Zoom. Beautiful!

Prior to Angie stroke, her jobs included a national top selling manager of Radio Shack, a mortgage banker, and at the time of her stroke in 2017, the finance manager of one of the largest car dealers in the country, pre stroke, Angie was on the board of the Eleone Dance Theatre for 15 years, as well as youth leader and basketball coach. Angie was a panelist at the aphasia access 2021 Leadership Summit, and she is now an ardent aphasia advocate and his co-founder of the newly formed Aphasia Resource Collaboration Hub (ARCH). ARCH is working to become a clearinghouse for available aphasia resources and services in South Jersey, Philadelphia and the Delaware areas.

Angie, thanks for helping me with the name of that dance company, which I know has a very special place in your heart.

Angie Cauthorn: Yes. It was founded by my brother, Leon Evans, in 1992.

So, thank you for making sure I said that correctly. I am just going to start with my first question for you, which is, how did you end up being a panelist for Aphasia Access at the Leadership Summit? I am so, so grateful that you said yes, when we invited you to come be a guest today. Thank you.

Angie Cauthorn: Thank you so, so much for having me. Thank you for that wonderful introduction. As for the leadership summit, Dr. Gayle DeDe of Temple University called and asked me to be part of the summit. Because of the pandemic, I had done some online work with some very young, talented people. And I was asked to give my, my opinion on some tricks and tips that I had learned, and my general feelings about receiving therapy online. And I was happy to lend myself and my time when I was asked.

You mentioned tips, and you gave us all a tip about passwords when you did your presentation to the Aphasia Access Leadership Summit. Would you share with our listeners today? What was your tip about passwords when you're on Zoom if you're working with people with aphasia?

Angie Cauthorn: Well, what everything is, when you send the link it, you know, you can just click the link, but sometimes it asks you to prepare a password for security reasons. But that, remember you're dealing with people with aphasia and numbers can be very confusing. And they can cause an additional barrier to someone maybe joining your group session or your private session. So just be mindful of the passwords that you use and try to use something that's aphasia friendly.

I think that's a really important tip because you don't want that password to be the first barrier before they even start.

Angie Cauthorn: Before they even start. Then they're coming in with kind of a down feeling. It's just again, showing people what they can't do, rather than how they can participate.

And Angie, we were so glad to hear your message at the Aphasia Access Leadership Summit. I was wondering what did you, as a consumer, get out of being at the summit?

Angie Cauthorn: Well, I was at the summit and I was on a panel with Dr. Charles Ellis, which is the one where I gave the tip and then I did a presentation. But I stayed the whole week. And I was literally inspired by the people, the kindness, the generosity of the speech pathologists. The, it gave me a different idea of health care. Everyone was just, no one was really, there was no, I'm sorry. There were no panels on how they can get more money from Medicaid or Medicare or anything like that. It was all about how they can maximize people's health. And it was an absolutely, I want to say, loving experience. It was how everyone was concerned about how they could help a stranger get through a hard time in their lives. It was very refreshing.

You know, I have to agree with you. I found it really refreshing and inspiring too as I listened to each and every panel, and poster. It was really an inspiring conference for me too.

Angie Cauthorn: So kind, so thoughtful, and just wanting to help. And that's what I really kind of took from it, how everyone was on the same page. It was really inspiring.

Angie, your bio is a small window into what a busy and active and full life you had before your stroke. And you shared with me yesterday in the email that today's actually the fourth anniversary of that stroke.

Angie Cauthorn: Today is the day. Yeah, yeah, it's, um, it's a little different. It's, um, it makes you a little melancholy, I guess, in a way, but also joyful, because you know, you're still here. The alternative is everybody doesn't make it through a stroke. And so, you have to celebrate that. Never mind what you can't do, the fact that you can do anything has to be celebrated. And keeping a positive attitude with it is very hard to do sometimes, but absolutely necessary. So, I am celebrating. But also, taking it all in, taking full account of everything, is always a good thing, as well. But, you know, the, these milestones that you hit um...are...a lot.

They're very meaningful. And I think you're right, we learn in life how to both carry the grief and the joy and make sure that we acknowledge and understand that, that we can do both together.

Angie Cauthorn: Yes, yes. You must. You must.

So you shared that after a long day at work, four years ago, you were winding down, and you noticed you couldn't reach for a glass of water. And your speech sounded a little funny. So, you actually told your husband to call 911. Can you share your experience with the first responder?

Angie Cauthorn: I most certainly can. The young men, two police officers and two paramedics, came in. And the young man didn't seem to have a good understanding of what was going on. He told me, I was having... a panic attack. And as much as I could muster in my little box of words that I was now working with. I said, "Son, I don't, I don't do panic attacks. I don't, I don't even know what that is. I promise you. I don't know what this is, but that's not it. And I need to get to the hospital." And they were almost kind of, what is the word, indifferent on if I, if I needed to go or not. And I was like, "Yeah, please take me now."

I think that that story supports the work that Avi Golden, who was my other guest today, is doing by trying to raise aphasia awareness with EMS schools, EMS students, EMS responders. He wants them to have a better understanding of what aphasia means, how to communicate, and how to be a better partner in these situations. So, we're gonna give him a shout out for continuing to do that work because this is a story that reminds us why it's so important.

Angie Cauthorn: It's so important because if I would have said, oh, maybe I am having a panic attack, and maybe, maybe I would have went to bed. These are sometimes the stories that you hear, if somebody was having a stroke that they went and took a nap.

That is so true. In fact, Angie, I will share that is what my mom did. She took a nap.

Angie Cauthorn: Yeah, because you don't know. Because when you don't lose consciousness. I did make it a point, as soon as things went a little to the left that night, I made it a point to try to acknowledge everything I was feeling. I made it a point to say, "Okay, stop. What can I feel? How does this feel? What's different?" And my hand, that was clo--, my right hand was cold to touch anything else. That was my biggest thing.

Alright, so just paying attention and knowing yourself. You knew that you needed to get to the hospital immediately.

Angie Cauthorn: Yeah.

Then you got to the hospital, and you needed your husband to help advocate for you there.

Angie Cauthorn: Because my language was disintegrating. It was just... not working. And so, I got my husband in the room with me. And I told him, "You have to go tell these doctors that I am... I'm smart."

Smart. You're smart. You want the doctors to know that.

Angie Cauthorn: I want them to know I am smart. I am not on drugs. I don't know what this is. But I have to go to work in the morning, so we have to get this wrapped up. I was supposed to open the dealership that day. And I will mention, as a quick sidebar. I never made it to work. I still haven't been back.

Instead of going to work, you spent three days in the hospital, you told me, then you were discharged home. I'm assuming next came therapy. Share with our listeners, how did you start to realize what you could or couldn't do? What was that process like?

Angie Cauthorn: It was trial and error. You don't know, when it comes down to aphasia, you don't know what you don't know until you're faced with it, until someone ask you. I didn't know I couldn't tie my shoe until I went to go tie my shoes. So, if I'm walking around in sandals for three months, I didn't realize that, oh, this is a problem. Writing my name, or the one I love is saying the alphabet. How often does, when was the last time you actually, Ellen, said the alphabet all the way through?

Well, I'm a speech therapist so I do get to say it, but I know the point you're making. Yes.

Angie Cauthorn: Right, nobody's, you know what I mean? So those things were very... telling to me. And it was just about trying to figure out and trying to navigate... what was missing.

So, you started therapy. I know you were working hard. Can you share how you found your first aphasia group? How did that happen?

Angie Cauthorn: I was in my doctor's office. She had a flyer on the wall. It said... every first and third Tuesday, I think it was, and of course, that's, that's hard to kind of figure out with or without aphasia.

Okay, true, true.

Angie Cauthorn: You know, you're missing a lot. And so, my husband and I, we finally figured it out, which one we were going to go to, and he took off for work and he took me and it, I felt like I had come home. It was like a weight was lifted off of me. Because I found a community that was open, understood. And a place where my aphasia was a non-issue.

So, we're, we're talking about the Adler Aphasia Center, right? I'm gonna give them a shout out.

Angie Cauthorn: And you should.

Why would you then recommend aphasia groups to other stroke survivors? What's your advice there? Sounds like it was a good place of connection for you.

Angie Cauthorn: I would advise it for the friendship, for the validation, to be heard, and to more importantly, be listened to. And I'm not a, the person who is a group therapy Kumbaya person. That's not, that's just not my nature. But I have definitely...but it's been a godsend. It really has been a, such a huge help. And a lot of us are, you know, are more independent and this is, you don't know what you need until you find it in that particular instance. I didn't know that was something I needed or should have been looking forward to until I literally stumbled into it.

You also mentioned to me that you have a special place in your heart for Dr. Gayle DeDe's aphasia choir, and I'm also a very big aphasia choir advocate. What has that been like for you, participating in the choir?

Angie Cauthorn: I'm just going to, first of all, let me just say, the Philadelphia PACT choir is probably the best choir of aphasia of all time. I'm just gonna go ahead, I'm gonna lay it out there. Dr. DeDe knows what I'm talking about.

This is great. I love it. I love it. Well, you haven't heard my choir yet. But that's okay.

Angie Cauthorn: We should have like, a community...like uh..

A sing-off?

Angie Cauthorn: Yeah, a sing-off.

Not that we're competitive, Angie!

Angie Cauthorn: No, no, no, just a friendly, let these cats know from Philly, Gayle DeDe takes it very seriously. No, she's such a genuine, she, first of all, she really does, with kindness and sincerity and a loving disposition, runs a tight ship. She is, she just wants to make sure everyone understands, everyone gets it. We don't move on until everyone is comfortable. We take votes on what we're going to sing to make sure that everyone is comfortable. It's just really, a really, a good time. And she really does an outstanding job of making it somewhere you want to be.

It sounds like Adler Aphasia Center has been a place where you've made connections. The choir has been therapeutic and rewarding for you.

Now, four years later, you've become engaged in a special project, the Aphasia Resource Collaboration Hub, or ARCH for short. What is that budding nonprofit about?

Angie Cauthorn: ARCH is about being the landing pad for people with aphasia, the researchers, the clinicians, all of these different stakeholders to know and be made aware of the information that's available to for people with aphasia to be better. I was a, it kind of started with me having a very car..., I'm sorry..., a very…. conversation with Dr. Martin from Temple University. And she was telling me about all the resources that were available to me in this tri-state area. And it was a lot. And I wanted, we wanted to put a position, put ourselves in a position where there was one place where I could find out about all the research, clinicians can find out about the research, researchers can find people with aphasia, so we can do the research We wanted to find a way to kind of bridge the gaps, to fill in the gaps. So, people, it would be a smooth transition, and a smooth transfer of information. And that's really what ARCH is about.

So like a clearing house a place to help connect people who need the resources and people who want to give them resources.

Angie Cauthorn: Yes, exactly.

It's not as if you just accidentally stumble and happen to see a flyer posted on the wall behind you. You want to make it a much more intentional effort to connect people.

Angie Cauthorn: Right! Because aphasia is so... not well known. And I think that is one of the bigger issues. You know, if people have Parkinson's, you know what to do. You tell them you have aphasia. They want to know if you're contagious.

It's true. We know that only about 10% of the public even know the word aphasia, even though there's over two and a half million people in the United States with aphasia.

Angie Cauthorn: Yeah, right. You shouldn't have to say I have a stroke and I have brain damage. I should be able to say I have aphasia. There should be a level of recognition and that's what we have to be working on constantly.

I started to say, it shouldn't just be flyers on the wall, but flyers on the wall are important because that's how you saw the notice about the aphasia group. So we need that. And we need these clearing houses that will build more bridges. So what's your short term goals for the next six months for this new organization?

Angie Cauthorn: It is to advertise, get some funding lined up. And to advertise, advertise, advertise, and educate. And I say advertise. But I probably mean educate. But we have to tell the public about it. We have to secure... give ourselves the opportunity for people to know what's going on, and the people that have had aphasia, that have kind of fallen out of therapy, because with aphasia, sometimes you don't even realize it until by the time therapy is over, is around, in my opinion, the time that therapy should be starting.

So they need more resources. When they're discharged, they need to continue this process of learning to live well with aphasia, as we say.

Angie Cauthorn: Right. and giving people a flyer when they leave the hospital, it just ends up on the dining table. You have to be able to reach them later. Because they may not be able to process everything that's being, all this paperwork. And there's something about aphasia in there. Okay, again, I can't tie my shoe. I have bigger problems right now. It gets lost.

So, we have to keep coming at it and keep making those connections again and again.

Angie Cauthorn: Yeah, so, so important.

So what message would you like to share with speech language pathologists? What do we need to know when working with our clients? Angie, what's your take home?

Angie Cauthorn: My take home would be to understand that your clients are still mid- avalanche when you see them, when you meet them. They are, you are reaching out your hand, telling them-- just grab my hand. And they hear you, but they can't reach you. And they don't really know what you're saying. You're just a person that they kind of, you're almost in their peripheral vision. Just know that and be patient with them, even when they're not patient with you.

Angie Cauthorn: And I one thing I can say I did get from the Leadership Summit, meeting all these speech pathologists, they are seemingly just innate with the kindness that is required. But just to say, again, be a little more deliberate with your patients. If you can, and just know that these, your patients, are... mid avalanche, and they have no idea how it's going to go down. So, your kindness is so important.

I think that's a good reminder. And would you give a different message to your fellow stroke survivor after discharge from speech therapy? What would you tell that person?

Angie Cauthorn: Be consistent with your therapy, do not deviate from what you were told to do? Go get math books. Work on that on your own time. One thing I did is, I made a playlist of all my favorite songs from my youth, and I would practice those songs.

That's an upbeat way to go at it.

Yeah, yeah, I did that. And I call it, it says "aphasia stuff". That's what I call the playlist. And it might be, you know, just old rap songs from 1984. But those are songs that I knew I knew. I know, I know these songs, okay. And I would work on my verbiage in the mirror and just try to sing the songs.

What I love about that is aphasia is so different for every individual, but you found something that worked for you that was creative. And that, I hope, with all that good music, also made you feel a little bit better too.

Angie Cauthorn: It did, it did. It's so important, so important.

I'm going to wrap-up with a long-term life goal for you, Angie, Something you shared with me-- that you wanted to give a TED talk. I think that's going to happen someday. Because I think if anybody should give a TED talk, it should be you. You have so many insights and such wonderful energy to share. What would be your topic and what might be two or three points you'd want to make in that Ted Talk?

Angie Cauthorn: Well, I think I would call it Lost in Translation, the Battle with Aphasia. I will talk about how it changes us, and all our relationships. I would also talk directly with the people with aphasia. And let them know, listen, it's going to be hard. It's going to be tough. And every, all your friends that you have now will not all make the journey with you. But a few will, and be consistent, be kind to yourself, have a positive attitude, and to call aphasia by its name. That would be, the, what I would, I would talk about if given the opportunity,

I hope you will because that's a message that needs to get out. And that's the perfect message for today's episode, given that we are celebrating June as National Aphasia Awareness Month. So, thank you. Thank you so much for being my guest today. Angie, I could sit here and talk with you for the next hour. And we could, we might just turn off the record and keep talking. So thank you so much.

Let me just wrap this up and say thank you again for sharing your expertise, your insights, your knowledge with us, with our Aphasia Access members. Angie, I appreciate it so much.

References and Resources

Avi Golden

NY Outdoors Disability

https://www.facebook.com/groups/nycourdoorsdisability

Leap of Faith Disability Sports

https://www.lofadaptiveskiers.org/

No Barriers Summit 2020

https://www.nobarriers.live/

No Barriers

https://nobarriersusa.org/experiences/

Angie Cauthorn

Aphasia Resource Community Hub (ARCH)

[email protected]

Philadelphia Aphasia Community at Temple

http://www.saffrancenter.com/p-a-c-t/

Aphasia Rehabilitation Research Lab--Temple University

http://www.saffrancenter.com/about-us/aphasia-rehabilitation-research-lab/

Adler Aphasia Center

https://adleraphasiacenter.org/

During this episode, Dr. Janet Patterson, Chief of Audiology & Speech-Language Pathology Service at the VA Northern California Health Care System, talks with Dr. Michael Biel about theories of motivation and their application and value in aphasia rehabilitation.

Guest Bio:

Michael Biel is an Associate Professor in the Communication Disorders and Sciences department of California State University, Northridge and senior speech-language pathologist at UCLA Medical Center. From 1993 to 2012, Michael was a full-time speech-language pathologist working in the Los Angeles and Pittsburgh VA healthcare systems. Michael is board certified in neurologic communication disorders from the Academy of Neurologic Communication Disorders and Sciences and specializes in working with persons with aphasia.

In today's episode you will hear about:

• Self-Determination Theory, and Flow, and Aphasia rehabilitation
• Psychological nutrients of competency, autonomy, and relatedness, including a short list of actions one can take to satisfy these nutrients
• Intrinsic and extrinsic motivation, and therapeutic engagement as a process.

Interview Transcript

Dr. Janet Patterson: Welcome to Aphasia Access Conversations. Today, I am delighted to be speaking with my dear friend, research partner, and pioneer in the study of engagement, motivation and aphasia. Dr. Michael Biel. Dr. Biel earned his master's degree in Communicative Disorders from California State University Northridge, and clinical doctorate degree in medical speech language pathology from the University of Pittsburgh. Mike dedicates much of his clinical practice and research efforts to understanding the science of motivation, and how to translate well established theories in the psychology literature to clinical practice and research in aphasia rehabilitation. He also has an interest in the role of the arts and humanities in adult neurorehabilitation, and with his wife, Francie Schwarz, started a book club for persons with aphasia. You can hear about that book club in Aphasia Access Podversation # 12, where Francie describes the aphasia book club within the Los Angeles Public Library System.

Before joining the faculty at CSUN, Dr. Biel worked as a speech-language pathologist for the VA Healthcare System, and the UCLA Medical Center. Mike is Board Certified in Neurologic Communication Disorders from the Academy of Neurologic Communication Disorders and Sciences or ANCDS.

Welcome, Mike. I am pleased to have a conversation with you today, and to turn the tables on you so to speak, as you are typically a podcast interviewer with ANCDS. Today you are our aphasia expert on motivation and engagement. Thank you for talking with me today about aphasia, rehabilitation, motivation, and engaging patients, family and clinicians in the treatment enterprise.

Dr. Michael Biel: Great, thank you so much for having me.

Janet: Mike, I would like to start our conversation by asking you about motivation, and how we might think about it as a concept in rehabilitation. People scatter their conversations with the word motivation, attributing all sorts of their actions and reactions to motivation or the lack thereof. Knowing that this is a vast topic, can you help our listeners develop a frame of reference for thinking about how motivation fits into aphasia rehabilitation?

Mike: Well, Janet, you're right. Motivation is a broad term. I think one author said that motivation is the why behind all human behavior. Some years ago, a paper was published, exploring the definition of motivation, and I think the author catalogued something like 200 different definitions. In its simplest form, I think we could say that motivation is the energy that causes us to do something, to act. Typically, whether motivation is effective, the many theories of motivation, are regarding its strength. The stronger the motivation, the more someone's going to pursue their goals and, and persist. Another way to think about motivation, one that I've kind of subscribed to comes from Self-determination Theory, and they focus more on the quality of motivation. They acknowledge that the strength is important, but they argue that more than the strength the quality is important and in its simplest terms, they define motivation as being either intrinsic or extrinsic. Intrinsic motivation is motivation where we're moved to act, because the activity itself is enjoyable, interesting, or satisfying. When people play video games that would probably be an example of intrinsic motivation. I use the example of going dancing, right, we dance because we'd like to dance not because we're expecting some kind of outcome after we're done. And so, if we are expecting an outcome, or if we have a goal in mind, then that would be considered extrinsic motivation. When I teach my students about motivation, they are in some ways, very tied to this notion that intrinsic motivation is good, an extrinsic motivation is bad. Extrinsic motivation is not necessarily bad. Much of adult life is characterized by us having to do things that we don't always enjoy. But if we're working towards a valued goal, and we're doing something because we desire to achieve that goal, then we're in a positive state of motivation, I guess you could say. Self-determination Theory divides extrinsic motivation into controlled and autonomous forms. In controlled forms of motivation, we're acting out of some pressure to act. That can be due to some external threat, such as the client in acute rehab, who's told that if they don't participate, more, there'll be discharged, or even the pressure to secure a reward. And in this case, the care and the positive regard of a health care provider. Even we can put pressure on ourselves, wherein we have this "should" voice in our head. In Self-Determination Theory, this is thought of as some recommendation, or belief or value or goal that's been internalized, but to a shallow degree. In a better way of saying it, the authentic self is not really integrated and identified with this goal, and so it simply remains kind of a "should" voice in our head.

Janet: That's fascinating, all the ways to think about motivation, several different perspectives. As I was listening to you, I was thinking about all of them, or at least, most, I think, have in common, that you're motivated to engage in something behavior, whether it's intrinsically motivated, or extrinsically motivated. But let me ask you a little bit about motivation from the perspective of engagement in the rehab process, because you mentioned that as an example of using motivation to keep people engaged in that process. I looked at the definition of engagement and found these two examples. One is, the fact of being involved with something. And another that adds a psychosocial component specifically says emotional involvement or commitment, which is exactly what I think you were talking about in differentiating the kinds of motivation.

I also found this interesting description of how engagement feels when riding a horse. Now, I am not a horse person. However, this description resonates with me, and I wonder if it does with you as well. I think it has application in how we think about aphasia rehabilitation. Paraphrasing from the site, Happy-HorseTraining.com, and I bet you never thought that aphasia and happy horse training would be in the same sentence, but there they are. "There are different degrees of engagement, and it can come and go when we are writing in itself. It is a particular gymnastic state when the horse brings into action, a specific set of postural muscles, which fundamentally alter the dynamic of how he carries himself. It is only in this state that the horse is able to carry the rider in balance, and without the damaging effects that otherwise a rider inevitably has on the horse. This is why any educated rider who cares about their horse's well-being will make engagement a priority when they ride. Apart from the fact that an unbalanced horse is never a pleasure to ride, nor is it safe. The engagement of the horse gives you the following sensations: you feel the power from the hind legs feeding underneath your seat, instead of pushing out behind, and you feel lifted up by the horse's back underneath the saddle, instead of dropped into a hollow. Above all, engagement is an incredibly good feeling for both the horse and the rider, because we instinctively enjoy the feeling of balance and power. Instead of always focusing on what you are doing when you ride, start to become aware of the moments when it simply feels good. This is the most reliable way of finding the direction towards a correct engagement." Several phrases in this description such as being engaged is a good feeling for both patient and clinicians (those are my words, replacing horse and rider) they resonate with me because I think we instinctively enjoy the feeling of balance and power. What do you think, Mike?

Mike: I completely agree, I think we all have a sense of what that feels like. Some people might call it flow. And in fact, there's a theory of flow and in that theory, they say, essentially, that we get into a flow state, when there is a particular balance between our skills and ability, and the degree of challenge that we're facing such that if the challenge is too great for our skills, then flow is lost. If there isn't enough challenge to capture our attention, then we're not going to have the kind of absorption that we might have in that flow state. I certainly think most of us have had that experience working with a client where, particularly after we get to know them for a while, and we've developed some skill at facilitating their communication abilities, or some aspect of a treatment that we're working on and things are starting to flow. I know that when I was at the VA in Pittsburgh, working in their Intensive Aphasia Treatment Program, one of the things I noticed was that, we worked with people for a whole month, and after about a week or two, I felt as if I was really dialed in. I was like an instrument that was being tuned, so that I could really exquisitely cue my client and facilitate their production. When we think about engagement, people have written about engagement as an experience that is co-constructed, it is a process. People have also talked about it as a state, and flow state would be an example. In going back to Self-Determination Theory, intrinsic motivation would probably be very closely related to this idea of a flow state in the sense that when we're intrinsically motivated, we're drawn to do something because we get some satisfaction out of the very act of doing it. In Self-Determination Theory, the ingredients that contribute to intrinsic motivation are that our sense of competency is being satisfied, we're feeling effective. In fact, one of the details of that competency satisfaction is that there's an optimal challenge, that we're meeting, a challenge that is not too hard, not too easy. The other ingredient that's being addressed is we're it we're doing it truly out of our own choice freely, without a sense of pressure, because we genuinely want to.

Janet: That makes a lot of sense to me as you talk about engagement and motivation, and how we can apply it in the aphasia rehabilitation sessions that we do in in our program planning. I wonder if you had any other additional thoughts you might want to share at the moment about how we can think theoretically, the theories of motivation and how we can apply those to our aphasia rehabilitation practice?

Mike: Sure, you know, when I started off as a therapist, and I was thinking about ways to motivate my clients and to increase their engagement, I think I often thought about the stimulus. I thought about making the activity more interesting to them. I thought about incorporating their hobbies, or something like that. And I think that practices is fairly common. But again, it tends to be focused on the interesting aspects of the stimuli. I think when we look at theories of motivation, we realize that there are deeper needs, that people have needs that are going to provide more of this motivational energy and provide a kind of energy that sustains itself for longer. I think when we focus on some of these more superficial aspects, quite honestly, of therapy, they just don't have the staying power. And at least in Self-Determination Theory, there's a concept of basic psychological needs. In this theory, they've identified three, (1) the need to feel autonomous, to feel that what we're doing is truly of our own choice that we desire to do it, (2) the need to feel competent at doing those things that we want to do, and (3) the need to feel connected to other people, what's called the need for relatedness, to feel that there are people who care about us, there are people we care about, and that this care is unconditional. I think if therapy and rehabilitation is constructed in a way where these needs are satisfied, then we're going to have a lot more fuel for engagement, and particularly when we hit the different challenges that people have to cope with.

Now, the listener may be wondering, well, exactly how did these needs influence motivation, and, to be honest, I probably don't have time to go into that in much detail, but essentially, it contributes to motivation in two ways. Number one is, at least according to Self-Determination Theory, these needs are innate. We tend to be drawn towards activities, goals and contacts, where these needs are being satisfied. These needs fuel a process called internalization, which is the human tendency to kick in the recommendations that belief, the values, the practices of important people around us, and to identify with them and to make them our own beliefs and practices and what not. I think in rehabilitation, we do a fair amount of teaching in one way or another and recommending and espousing certain beliefs and values that we think will serve people in positive ways. In the dynamics of a relationship and satisfying these needs, there is a kind of a security and a trust, and a nurturance that our clients feel and that increases the likelihood that they do take on what we have to offer and make it their own and, develop some ownership over it. Of course, that really is going to form the foundation of a more persistent engagement.

Janet: Mike, in the past year during the pandemic, and its requirement for social isolation, which perhaps may continue for several months into the future, increased mental health challenges, such as depression, have appeared in the general population, and likely also in persons with aphasia. How do you think that fostering engagement in aphasia rehabilitation and in communication interaction can help persons with aphasia cope and indeed thrive during these challenging times?

Mike: Yeah, that's a that's a really interesting question. Staying on this notion of a psychological need. Self-Determination Theory is not the only psychological theory that proposes that humans have psychological needs. What these theories tend to have in common, these needs-based theories, is that it's the satisfaction of these needs that is necessary for us to be psychologically healthy. In fact, in Self-Determination Theory, these needs for autonomy, competence and relatedness are sometimes referred to as psychological nutrients, communicating the idea that just like physical, dietary nutrition, that these elements really do need to be addressed for us to be optimally healthy. I think that as therapists, of course, we have our limits. In my sessions with clients and the dynamics of our interaction, I do the best I can to address and satisfy these needs. That would also include the kind of goals, collaborative goal setting that we might do, and, and I will frankly discuss these needs with clients and family members, too, and people seem to get it. Other examples are, let's take the need for relatedness, which is not just satisfied between individuals, a client-clinician relationship, or a romantic relationship, or a parent child relationship, but it's also satisfied when people have a sense of belongingness to community. I think, right now, I've noticed that a couple of the aphasia groups that I belong to and facilitate seem to be playing a really important role in helping people feel connected to a community. Hopefully that is having a prophylactic effect in terms of helping people stay psychologically well.

Janet: Which again makes sense. But as you are interacting with people, both patients with aphasia and their caregivers, what are some of the indicators you see, that suggest a client is engaged in rehabilitation, or not engaged? How do you measure engagement or feel confident in identifying when a patient is engaged with you in the rehab process?

Mike: There are some measurements of engagement out there. Off the top of my head I don't know how valid they are. There are most definitely a number of measurements of motivation and Self-Determination Theory related measures of intrinsic motivation, of autonomous versus controlled forms of motivation, and need satisfaction. I don't administer those tests myself in my clinical practice, although I sometimes pull one aside to guide the kind of conversation that I might have with a client so that I can kind of get a sense for whether they're really struggling with this need for autonomy. In other words, they're not feeling as if they're having much choice over their life, that they have a sense of doing what is important to them, or steering the conversation towards getting a sense of how competent they feel, doing the things that are important to them, how connected they are to friends and family, etc. In general, I guess I rely more on my interactions with people and my observations. I think in terms of kind of markers of engagement, I think it does look different at different stages of rehabilitation. Early after a stroke, for example, or early in a clinical relationship, our clients often don't understand enough about their disorder, about the process of rehabilitation, to be real engaged the collaborators. At that point engagement is more focused on them being engaged in wanting to learn about aphasia, and the options for rehabilitation and whatnot. In so in the beginning, I'm spending more effort supporting people developing some competencies that will help them become more true collaborators, so that later on engagement is manifest much more in the sense of them participating in decision making and sharing their opinions on different treatment approaches, for example, then sharing their observations of what's going on with them and their progress towards their goals. So, I guess, overall, my experience has been when things are going well, that people start off most definitely curious and engaged in that way. Over time, they develop more ownership over the process and become, if not collaborators, maybe even more than that, for lack of a better word, become their own therapist. Then, of course, there are, I guess you could say, the more traditional observation observations of engagement, adherence to treatment schedules, home practice schedules, following up on recommendations, things of that nature. As a kind of an example, I think of the way one can use a theory of motivation to maybe start to think about some of the patterns of behavior that we see. I'll sometimes see clients who are using an app on their iPad and so I can monitor their practice how often they're practicing, when they're practicing. I might see that they kind of don't practice much until the day before their scheduled session with me. And to me, that's really one example of someone being in a more controlled form of motivation, wherein the reason for them to be motivated is perhaps the desire to maintain my approval of them. When our motives are external to us they don't really exert much influence until they're in proximity. And so, as we get closer to the scheduled appointment, all of a sudden, this external motivator starts to kick in, and they'll do some practice. I might look at that and realize that there's something missing in terms of addressing goals, etc. so that people are more truly, the genuinely autonomously motivated, in which case, the pattern would be more like, not just that people are more persistent on their own, but at times, they're even asking for more.

Janet: That is a good place to leave it because you've been helping me visualize this picture of engagement as a process. Everything's so new in the beginning of a person's journey through aphasia. And as the clinician, you are helping them become more comfortable with that and take more of an active role, if you will, owning the aphasia and what to do about it. Let me ask from your experience and research, what advice or techniques or suggestions can you give to our listeners that they can take and incorporate into their clinical practice? I know you've described a little bit about how you use your observations, but are there some specific pieces of information you can impart to our listeners?

Mike: Sure. I think engagement starts with me. If I am truly engaged, then that tends to facilitate the engagement of my clients. If we think about when someone listens to us, let's say and listens to our story, in a manner in which they genuinely seem to be trying to understand our perspective, that tends to cause us to be a little bit more interested in in it ourselves. I think engagement is contagious. You will read in in qualitative studies, rehab patients particularly in the acute phase, talk about this need to kind of draw on the positive energy of their clinicians to carry them through this difficult time. Now, there are some specific practices that have been described that are focused on satisfying these basic psychological needs, which are kind of the ingredients of motivation, and therefore, engagement. Maybe it would be helpful for me to just go through the list of them, or the short list, so people can kind of get a flavor for what this might look like.

The need for a satisfying people's autonomy is often achieved through first doing what is called perspective taking, listening to people, their concerns, their stories, with the particular intention to try and see the world through their eyes. That kind of listening interest is an acknowledgement of a person's autonomy, and therefore, its autonomy satisfying. Providing choice has been studied quite a bit in terms of satisfying the need for autonomy. I think most of us are familiar with that, because it plays a role in shared decision-making and client-centered goal setting, providing rationales for any of the recommendations we make, rationales that are meaningful, from the client's perspective, that allow people to genuinely self-endorse them and to kind of take ownership of them. That's believed to be autonomy supportive. Finally, establishing an environment that is not pressuring. In other words, that we don't set up contingencies either explicitly or implicitly. What I mean by that, specifically, is that people don't feel that they need to be a certain way, or behave in a certain way, in order to secure our approval, and our energy, and also to some degree, that means paying attention to the language that we use. Those people who are familiar with motivational interviewing will know that, in motivational interviewing, you pay quite close attention to the language your client is using, the language you're using. For example, you may make an extra effort to stay away from controlling language such as "you should", "you must", "you need to", etc. As far as satisfying the need for competency, that starts by providing the kind of structure that makes people feel secure, that makes them feel supported in making progress. It's not chaotic, therapy is not a chaotic experience, it's somewhat predictable. I mentioned previously optimal challenge, such as finding tasks, goals that are optimally challenging. The nature of the feedback that we give can support people's needs to feel competent, in other words, that our feedback is more informational than evaluative. It's informational in the sense that, once we give it people have a sense of how to do better next time. It's useful a feedback. And then of course, monitoring progress is an important component of satisfying people's needs to feel competency within rehabilitation and measuring progress in a way that is meaningful to clients. As far as the need for relatedness. In general, it means that we do not send any overt or covert signals that our positive regard for our clients is in any way dependent on what they say or do. Let them know that our care for them is unconditional, and that our motivation is autonomous. In other words, that they are not an object to us. What I mean by that is, they are not a means to an end for us they are not a productivity requirement, they are not a means of generating income, they are not a means of stroking our egos, that we genuinely empathize with them and want to help. And they that is their experience of us.

Janet: It does sound to me like you've spent a lot of time thinking about motivation and engagement, and also applying it in your everyday work with patients and their family members. Would you describe for us one of the successful experiences you've had and engaging patients and family members in your rehab process?

Mike: Sure. I can honestly say that all of my clients now and in recent memory, or I think, successes. One of the things, as I mentioned before, that I've been experimenting with more is working with caregivers and talking about these basic psychological needs and how we, the people around the person with aphasia, can sometimes out of good intention, thwart those needs, and how they can do some simple things, to help people feel autonomous, to help them feel competent, to help them feel connected to others. I've gotten a lot of good feedback from starting to do that. Another thing I've been experimenting with are very, very short term goals. In goal setting theory, which is referenced now and then in rehab literature, proximal goals, very short term goals are thought to be more motivating than long term goals. My PT colleagues are fortunate in the sense that the kinds of goals their clients are working towards her so much more concrete and tangible. A person could not transfer from their bed to their wheelchair independently. Now, they can. It's easy to observe. Communication improvements are more abstract. To some degree, I think my patients suffer from struggling more to have a tangible, concrete sense that they're making improvements towards their goal. And so I've been working with super short term goals. In other words, goals, like," Okay, what would you like to achieve by next week." What's been really interesting about that process is that when we think about a goal in that short of a term, it tends to focus the mind in ways that longer term goals, one month, two months, three months, just don't. It seems to cause people to really reflect carefully on their strengths, what they can do. Then there's this heightened sense of expectation that people have, because they're going to experience meeting a goal in a very short timeframe. Now, of course if we can link these one week goals up towards some longer term valued goal, all the better. But that's been a very interesting process, and really helpful not just for my clients, but for me as a as a clinician, too.

Janet: I can imagine it has. It must, again, thinking back to the definitions we talked about earlier on engagement, make you feel good, help you and your client feel good that you're in balance with each other. You're working together, little steps, baby steps to achieve some larger goal in future time.

Mike: Yeah, I think setting goals and thinking about goals is, is difficult for all of us. And by really shortening the distance. It makes it easier to conceptualize,

Janet: I can imagine. Well Mike, as we bring this conversation to a close, and quite frankly, I would rather not. I'd rather go on talking to you for hours and hours because I know that you've spent a good deal of time studying this topic, and practicing this topic, and can talk for days with us about motivation and engagement and its value and importance in our rehabilitation activities. But we are limited on time, so as we bring this conversation to a close, are there any last comments on engagement or motivation? Or in particular Self-Determination Theory, that you would like to share with us?

Mike: Yeah, I think there may be two things. First is that we don't motivate people. We support people's motivation. We support people in ways that contributes to their need for motivation to show up. I want to make that statement because I know that earlier in my career, I spent a lot of time trying to persuade people to believe certain things, to do certain things, and whatnot. In a related way, you know, for me, motivation was a thorn in my side, because I often felt that my clients were not as engaged in a persistent way as they needed to be to kind of reap the benefits that treatment had to offer. That wasn't just my perspective, they felt the same way, and they often didn't know why. It was some time before it dawned on me that there was this factor - motivation - that I put a lot of emphasis on, but I essentially knew nothing about it, I followed my intuition. Learning some theories of motivation, not just Self-Determination Theory, although I think that's my favorite one, I think it's the best fit for the people that I see in my practice, but I draw from other theories, too, this has really transformed my practice and made me more comfortable in my skin, as well as I think more effective. I'd suggest that people who are interested in this topic to start to read about it. One thing about motivation is that the factors that influence motivation tend to be universal, so that we can read about motivation in the context of education or even the workplace, and I think with some confidence, translate that into our own practice. So even though their research is really not there, in speech pathology land, there is a lot of useful research that we can draw upon.

Janet: Thank you, that's a good recommendation. I hope that our listeners will take that recommendation, and I hope they will to learn from a project, Mike, that I know you and I with some other people are working on to really examine how people in speech language pathology are reporting motivation when they report their clinical work. We look forward to disseminating that information in a future venue. I want to thank you so much for your time today, Mike, and for chatting with me about motivation and engagement in aphasia rehabilitation.

This is Janet Patterson speaking from the VA in Northern California, and along with Aphasia Access, I would like to thank my guest, Mike Biel for sharing his knowledge, wisdom and experience in studying and practicing principles of motivation, and engagement in aphasia rehabilitation. You can find references and links in the Show Notes from today's podcast interview with Dr. Michael Biel, at Aphasia Access under the Resource Tab on the Homepage. On behalf of Aphasia Access, we thank you for listening to this episode of The Aphasia Access Conversation Podcast project. For more information on Aphasia Access, and to access our growing library of materials, please go to www.aphasiaaccess.org. If you have an idea for a future podcast topic, please email us at [email protected] Thank you again for your ongoing support of Aphasia Access.

Resources

@mebiel https://twitter.com/Mebiel

Self-Determination Theory

http://selfdeterminationtheory.org/

VA Pittsburgh Program for Intensive Residential Aphasia Treatment & Education (PIRATE)

https://www.va.gov/pittsburgh-health-care/programs/pirate/

During this episode, Ellen Bernstein-Ellis, Co-Director of the Aphasia Treatment Program at Cal State East Bay in the Department of Speech, Language and Hearing Sciences, talks with Bob Williams and Tauna Szymanski from CommunicationFIRST.

Guest Bios

Bob Williams, Policy Director of CommunicationFIRST, helped to co-found the organization in 2019, after retiring from a distinguished four-decade career in federal and state government and the nonprofit sector, most recently as Director of the US Independent Living Administration at the US Department of Health and Human Services. He is a nationally recognized leader on policy issues relating to supporting people with the most significant disabilities to live, work, and thrive in their own homes and communities. For over 60 years, Mr. Williams has relied on an array of augmentative and alternative communication (AAC) strategies, including a series of speech generating devices over the past three decades. He lives with his wife in Washington, DC, where they enjoy visits with the grandkids, walking along the riverfront, Netflix binges, and all things Springsteen.

Tauna Szymanski became the Executive Director and Legal Director of CommunicationFIRST in 2019. Previously, she spent twenty years working on climate change law and policy, including 13 years at an international law firm in London and Washington, DC, where she volunteered and represented clients pro bono in disability rights and inclusive education matters. Ms. Szymanski has graduate degrees in law and public policy. She grew up around the world as the child of US Foreign Service Officers and is multiply disabled.

In today's episode you will:

• Learn about CommunicationFIRST's efforts to advocate for policy reform in order to protect and advance the rights of individuals with speech-related disabilities
• Hear the story behind the June 2020 ruling to protect the rights of individuals with communication disability to have access to their communication support partner in the hospital, even during Covid
• Find out the benefits to filling out the Communication Tool Kit before a person with aphasia enters a hospital
• Learn about using the Hospital Visitation checklist offered by CommunicationFIRST
• Find out why we talk about Bruce Springsteen

Edited show notes:

Greetings to our Podcast listeners,

This is Ellen Bernstein-Ellis, your host today, and you're listening to an updated version of episode 68 with CommunicationFIRST. Let me share what happened to the original podcast because there's a valuable lesson in this story. Bob Williams, one of the guests that you'll be meeting shortly, uses an assistive device to speak. He is indeed an eloquent and powerful speaker, as you will soon hear.

Bob spends considerable time preparing for interviews by prerecording content on his device since real time responses can be time consuming. However, as a matter of principle, Bob always opens his presentations by typing in real time in order to educate the public by providing some insight into the fuller experience of being an AAC user. The remainder of his interview responses are played at a more typical speaking rate.

Unfortunately, because I didn't provide explicit instructions to our podcast producer, Bob's response in that section of the podcast was edited from four and a half minutes to 30 seconds to eliminate the audio lag. I failed to catch this unexpected revision in the final copy before it was posted.

I want to thank Bob, and Tauna, our other guest, for bringing this to our attention so we could redo the episode and restore his original response as it was delivered. I sincerely offer my apologies and appreciate their gracious understanding as we worked together to resolve this issue. Thank you too to our podcast producer for quickly responding to our concerns. To our listeners, Bob's first response is a small but important window into the effort it takes to be an AAC user and also how to be a respectful listener and effective communication partner.

I found Bob and Tauna's interview profoundly impactful. They are passionate, expert advocates, as their mission states, in advancing the rights, autonomy, opportunity, and dignity of people with speech-related communication disabilities and conditions. Be sure to check out the CommunicationFIRST website at www.communicationfirst.org

Interviewer: Ellen Bernstein-Ellis Welcome to both of you today. Thank you for being here Bob, do you want to add anything to your impressive bio? What brought you to CommunicationFIRST?

I want to explain to our listeners that for this response, you're going to respond in real time, which means the listener is going to hear some typing as you compose your response. Thank you, Bob.

Bob Williams Thank you. Over 50 years ago, my parents, brothers and sisters, and I started to figure out ways I could express myself and that is why we can have this conversation. CommunicationFIRST is committed to making certain that all children and adults, and older Americans with disabilities that need ACC get that same chance.

Bob, you and I spoke before the interview of how important it was to actually demonstrate to show how laborious and effortful it is for people with communication disabilities to communicate effectively, and to how important is for the partner to be patient and develop good listening skills. And you're actually the one who pointed out the corollary with individuals with aphasia, who may also need the partner to give them more time and have more patience so they can participate fully in the conversation. So thank you for sharing that and making sure that lesson is out there today.

I'd like to share my first lesson about being a good communication partner for someone using AAC, because I set up our tech meeting, and learned the hard way that the password was actually a barrier to you joining our meeting. By the time we figured out the problem, there just wasn't time for you to participate because you had another Zoom meeting you had to attend. And that one was at the White House, so that meeting won out. It left me totally impressed, of course. I decided this was a good lesson to share with our listeners. I've learned a lot in preparing and appreciate this honor of working with you for this interview. Thank you.

Bob, how do you get ready for something like this that involves prepared and live responses?

Bob Williams I prepare most of what I am going to say in advance. Having worked with members of Congress, a cabinet secretary, and others who place a high value in brevity, has really developed my skills. To do this, I cut and paste, and repurpose as much as what I can, but it is time intensive. For the last 30 years, I have composed everything on my computer and transferred it to my speech generating device, which has advantages and downsides. Now, I am starting to experiment with the hybrid approach. You heard what I spelled out on my device. And what you are hearing now is the read aloud feature which is included in Microsoft Word. That voice quality is better and it cuts out the transferring and other hassles. Once I get the routine down, I am confident it will improve things. Responding to things in real time is never easy. It is just something you deal with as best you can.

Bob, before we started recording, you explained that there will be some pauses between our questions because you have to physically reposition the cursor to read your next response. I just want to give the listener a heads up that they may have to wait a moment. Getting back to what you just said, Bob, what are the implications of what you shared for the people we work with who have aphasia?

Bob Williams If there is anything I want you to take away from what I say, it is this, the people you work with are making huge motoric and cognitive effort to express themselves and to be understood, regardless of whether they are using a speech generating device or not. The work they do is often Herculean. But many never realize that and view individuals with aphasia and others with significant expressive disabilities as less than, as having little to no human need, ability, or right to express themselves and to be heard. Because you and I know better, our most fundamental duty is to shatter this narrative. The idea that we can acquiesce and be complicit in letting people live incommunicado must become morally repugnant.

Bob, that gave me the chills. It's so eloquent and so beautiful. Thank you. I think it leads us to the next question. It's about the passion you and Tauna both share for communication access. What are the mission and values of CommunicationFIRST?

Bob Williams We often get asked how we can expect to defend and expand on the civil rights and opportunities of people who seem to have nothing in common, except, of course, that we are voiceless and powerless. I was among those who was asked much the same question about what was then seen as this pipedream called the Americans with Disabilities Act. It is true we are diverse demographically, in terms of the disabilities and conditions we have, when and how we acquired them, how we communicate and a host of factors.

But here is what unites us. Like all people, we have the same intrinsic human need. The same human capacity and the same inalienable human and civil rights to effectively express ourselves and to be understood.

Recognizing these truths about ourselves, that there is strength in our numbers, and recognizing we have rights and must demand them. These are the essential building blocks of CommunicationFIRST and the human and civil rights and liberties movement we are forging.

Thank you, Bob. My next question is for you, Tauna. Who do you serve? And what is your connection to aphasia?

Tauna Szymanski Thank you, Ellen, for the invitation to join your podcast today. This is actually our first podcast, so we're having a lot of fun with this. As Bob suggested, CommunicationFIRST is a very broad and diverse organization in terms of the group of people we seek to represent. So, the one commonality is that we will seek to advance the interests and the rights of anyone who cannot rely on speech to be understood, and that includes people who were born with a speech disability, and those who acquire a condition or disability later in life that makes speech communication difficult, and that includes people with aphasia.

I'd like to hear a little more about the history of CommunicationFIRST.

Tauna Szymanski Sure. Well, as you noted earlier, we were only founded about 18 months ago. We publicly launched in October of 2019. It really came about over the prior few prior few years, as we realized that there were well established organizations. effective organizations, that represented people with the other two types of communication disabilities, vision and hearing disabilities, but strangely, not a single organization that really worked on the third type of communication disability, speech related disabilities. So there were, you know, there are some organizations for professionals and there's organizations that sort of worked on broader issues impacting folks with intellectual and developmental disabilities, some of whom have speech related disabilities, but no one who's really focused on the rights and interests of this large population, which is just equally as large as those other two communication disabilities. It came about because of the realization and the fact that the issues are just as intractable, if not more so, than for the other two populations of people with communication disabilities.

I'm really grateful that you collaboratively started this organization. I didn't realize it was a new one, because you have already accomplished so much, just looking at your website. How are you seeking to achieve your mission?

Bob Williams Well, it begins like everything else involving changing hearts and minds. Creating greater justice must begin in conversations like this one. Most of all, it takes creating the opportunity, spaces, and support for more of us who need AAC to get to know each other. And to recognize that we share not just the same kind of challenges, prejudice, and discrimination in common, but that the civil rights, accommodations, and support also are largely the same. And we share a common responsibility to each other to bring such changes about.

Thank you. You are an eloquent speaker. Can you explain why CommunicationFIRST views this as right as a civil rights challenge?

Bob Williams The National Aphasia Association 2020 survey on public awareness surveyed 1001 persons asking if having a speech disability is a sign that someone has an intellectual disability. Fortunately, 58% of the respondents said they either strongly or somewhat disagreed that is a true statement. But 42% said they either strongly or somewhat agreed with the statement. You and I know there is nothing soft or benign about the bigotry of low expectations. Or of social isolation, institutionalization and a lifetime incommunicado. We all have witnessed its absurd and horrid injustices. It is time to call it what it is. And to end it. This is why we do this work and need allies like all of you to join in.

We have to work together. That is absolutely right. We're always stronger together. What is something big that you've learned during COVID, about healthcare ACC disparities?

Tauna Szymanski I can try to start out with this one. So as I mentioned, we launched only six months before COVID broke out. So, we had to very quickly pivot our plan or rollout for the first year to addressing what we quickly realized would be a very significant issue impacting our population-- one slice of which we knew would be these new no visitor policies in hospital and congregate care settings.

Especially because we know that virtually everyone in our population who has expressive communication disabilities needs some kind of human physical support in order to communicate. After everything shut down, and hospitals started implementing these no visitor policies, we issued toolkits about rights. Then we started getting calls about this issue and, in the course of doing that work, I personally have really come to appreciate and develop a much broader and deeper understanding of what communication really is and how much broader it is than just speech and hearing and vision.

Also how individualized communication and communication supports are. That's something that's actually been a personal blessing to me and in the work as we started with this organization. It's been an unexpected gift, really.

Thank you for sharing that, Tauna. And Bob, do you want to speak to something you've learned during COVID and health and AAC disparities?

Bob Williams We have known about the deep disparities in health, education, and economic well-being that are part of the everyday lives of African Americans and other people of color with and without disabilities long before the pandemic and the vile white supremacy of the last several years. Because of the work of the National Black Association for Speech, Language and Hearing, as well as researchers and practitioners like Dr. Charles Ellis, and others, we are learning more. Not just that black, indigenous people of color and those who are multilingual are more likely to acquire more significant degrees of like aphasia, Parkinson, TBI and early onset disabilities like cerebral palsy, which require them to use an array of communication and other services and supports. But they also face disproportionate barriers and discrimination in accessing the services, AAC, and assistive technology required to each lead a decent life.

Absolutely. And I'm admirer of Dr. Charles Ellis's work as well. So Bob, what needs to happen to get policymakers to understand and address both the systemic barriers as well as effective practices that research is identifying? And how can we help to elevate the need for action.

Bob Williams I mentioned Dr. Ellis, a leading expert on aphasia among black people and the director of the Communication Equity and Outcomes Laboratory at East Carolina University. Over the past several months, I have read his work as well as that of others doing similar research. And I think it's accurate to say we know and are learning more about what inequity in access to AAC and communication supports look like, as well as its devastating effects it has on people. We must now create urgency around what communication equity must look like and what we must do to retain it. In January, we prepared and were joined by 47 other organizations in submitting a Communication Equity Call to Action to provide the Biden administration. In it, we call on them to take concrete actions to create equal access to AAC, regardless of one's race, disability, age, language, or other status. Check it out on our website. And we will be glad to talk to anyone who wants to become more involved in our efforts.

Thank you, thank you, for the work you're doing. That leads to the topic of what introduced me to CommunicationFIRST as an organization this summer in the first place. Could you please tell our listeners how you met Patient GS, that patient who's actually behind the June 2020 ruling to protect the rights of individuals with communication disability to have access to their communication support partner in a hospital setting, even during COVID?

Tauna Szymanski As I mentioned earlier, in March of 2020, we issued a COVID-19 Communication Rights toolkit, which was designed to be a way or resource for folks who were going into the hospital due to COVID, who needed to ensure that they could access the communication support they needed in that environment, even if that communication support needed to be another human being.

So in other words, it was an accommodation request under disability rights laws for someone with a communication disability to be provided a reasonable modification to those no visitor policies and to other non-human communication supports like AAC and other communication accommodations that might be needed. That had come out in late March and I believe it was about two weeks later, I got a cold call on our main line from a woman in Connecticut whose mother had just been taken to the hospital less than 24 hours prior by ambulance. She was a 73 year old woman, GS were like initials to keep her identity confidential, but she's since come public. Her name is Joan Parsons, and she had acquired aphasia, I think 11 or 12 years prior due to an aneurysm and she was going to the hospital for non-COVID-related reasons. Her family, who had always accompanied her in the ambulance on necessary hospital visits and had remained with her in the hospital to ensure that she could communicate and understand, were prevented from doing so.

One thing led to another and we attempted to advocate and ultimately we needed to file an administrative complaint with the Office for Civil Rights at the US Department of Health and Human Services and something we did with Disability Rights Connecticut and a few other disability rights organizations.

Can you can you share a little bit more about what the ruling entailed?

Tauna Szymanski We filed that complaint in early May and very quickly the Office for Civil Rights (OCR) opened up what's called Early Case Resolution procedure, which all the parties have to agree to. The complaint was both against this individual hospital, which was Hartford Hospital in Connecticut, but also against the state of Connecticut for not having a statewide policy that reminded hospitals of this need to include exceptions in these no visitor policies for people with disabilities who needed in person support. It was sort of a two tiered complaint. Over the course of the next month or so, OCR, and Connecticut, and the hospital, and the disability groups, negotiated resolution to those complaints.

Ultimately, the resolution was an agreement for Patient GS, to be ensure that she could have that in person access. She was actually still hospitalized, after getting diagnosed with COVID, and was in the ICU for this entire time, six weeks. She was still in the hospital, I believe, that day we signed it. She ended up being released later, but we had resolved the practical issues earlier so she was able to be supported.

But the broader results of this complaint was that the state of Connecticut issued emergency regulations that essentially were a policy that laid out the law and said, yes, people with disabilities are entitled to have a support person present if needed, despite hospital visitor policies. It laid out a lot of the details about PPE and safety precautions that need to be taken. It wasn't a lawsuit, but rather, it was a decision that was endorsed by the Office for Civil Rights. It became a national precedent and an indication of what the federal government was saying that, yes, this is what needs to happen.

After that, we didn't have a whole lot of issues. We would just point people who were calling with these issues to that resolution. That was the backbone and that came out June 9 of 2020.

That had really widespread impact that summer. I saw the posting, that's how it came to my attention. We were cheering because for us, that's landmark, as protection for the people we work with and care about. They we're telling us stories of being so scared about going to the hospital and not being able to communicate.

Not only did you have that landmark ruling, but you also created this Hospital Visitation Framework document. Could you please speak to what the main criteria are for evaluating if a hospital policy is discriminatory? Let me share with the listeners one quote from the document: "Doctors have an ethical obligation to seek and obtain informed consent from every patient, something that cannot take place, if the patient does not have the tools and supports necessary to become informed, ask questions and make decisions and communicate consent. No visitor policies pose serious barriers to individuals with disabilities who require in person supports." Could you explain a little bit more about the hospital visitation framework?

Tauna Szymanski Sure. Together with the other disability rights organizations that we worked with on this issue, we put together this document, the Hospital Evaluation Framework. It was put together to compile best practices really, to highlight some of the better state policies and hospital policies out there in terms of the detail.

One of the things that I never thought I would, a year and a half ago, be looking at were these nitty gritty sort of details like under what circumstances can a support person eat and use the restroom while in the hospital? This is really what a lot of these negotiations come down to is that kind of detail. States still are all over the map with their policies and some states don't even have policies on this issue. And hospitals are all over the map, especially in states that don't have policies. We thought it made sense. I was on a daily basis getting calls on these issues and coaching folks in various states here are the sorts of things that you need to be thinking about.

As we were negotiating with OCR and Connecticut about elements that are important to put in these policies, this (framework) was the compilation of a lot of these issues. And we wanted to make it helpful for states and hospitals to adopt comprehensive policies that ensure that patients with disabilities would be able to be supported and have equal access. Part of this document reminds folks of this ethical and legal obligation that healthcare providers have to ensure they're seeking and obtaining informed consent from their patients. So if a patient has a communication disability, they're still entitled to be provided with informed consent.

Part of becoming informed is being able to understand what is being presented in terms of treatment options and also being able to ask questions about those options. And then, of course, providing that consent. Much of what we've had to do in terms of advocating on this issue is reminding healthcare providers that you still have to do this, right? Just because that person doesn't have the communication tools right now, you have to provide those (tools) to ensure that they can have that opportunity. And in the case of aphasia, and with Patient GS, a lot of what we were advocating for was reminding (providers) that Patient GS has aphasia and she can understand a lot, but sometimes she needs help with rephrasing. The only person that can really help with that is someone who knows her and knows the background of how she understands and expresses things. And how she can be asked questions in a certain way to ensure that she is answering in a way that is going to lead to an agreement, or decision, or consent.

This Evaluation Framework document methodically goes through some of these elements that we found were really essential to have in some of these no visitor policies. Including, is there a requirement in the state policy for a hospital to follow the policy? Some of them suggested it was optional. Or, what kind of facilities does the Framework cover? Does it just include hospitals? Or, does it also include congregate care type facilities, long term care facilities, skilled nursing, etc.?

Some were very selective about the types of disabilities that they listed and yet you don't need to have a certain type of disability to qualify under the ADA for an accommodation. So it goes through some of that. What we also thought was helpful would be to footnote each of these with real examples from states, including the language that they've used in their policies, to address each of these points. You can see the variation in how some states have done this. That was, hopefully, a helpful resource. We've used it over time as we've worked in new states to encourage better policy adoption.

That's a really big undertaking. And right before we started our interview, you mentioned that there's been some updates as of yesterday. Do you want to share?

Tauna Szymanski Sure. This was specifically about hospitals. The Patient GS situation was really about hospital visitation. And we had been hearing increasingly from folks in nursing homes and institutions, for lack of a better term, and intermediate care facilities, assisted living facilities, skilled nursing facilities, about similar issues about people not being able to go into to visit and then to support. We always start by emphasizing that distinction between a visitor and a disability support person, because in a lot of these facilities, there is actually a legal right to visitation. But more strongly, under disability rights laws, there's this separate and independent right to effective communication and certain disability related support. There was no real guidance about those rights in these other types of settings at the time, and so we, along with several other disability and aging groups, spent a good chunk of last summer pushing CMS, the Centers for Medicare and Medicaid Services, to issue guidance on those rights in those settings.

And finally, in September of last year, we got some guidance about nursing home visitation. Then in January of 2021, we got guidance about visitation on intermediate care facilities, and psychiatric residential treatment facilities. Yesterday, just an hour after we presented about the nursing home and ICF visitation, HHS and CMS actually issued an update on the nursing home guidance on visitation and made it stronger, talking about the role of vaccinations and that sort of thing. So essentially, all of these other guidance documents include that additional language about reminding those who run those facilities that that if a patient with a disability requires an outside support person to access the services and healthcare options that are provided in those settings, they're entitled to do so regardless of those no visitor policies.

Some of the documentation and legal aspects can be overwhelming for families to navigate. That's why you put in place this COVID-19 Communication Rights Toolkit, which is very accessible. I urge all our listeners to share the link with families which we'll have in the show notes Could you explain what it is?

Tauna Szymanski This was put together in March very, very quickly. It tries to simply lay out what those communication rights are in health care settings. Specifically, it includes a section about how you protect those rights and assert them. It includes links to the three different laws, which are the Americans with Disabilities Act, the Section 504 of the Rehabilitation Act, and Section 1557 of the Affordable Care Act. For advocates and lawyers in health care, hospitals, and whatever, they can click on the links to see the actual laws if they want to read them. And then it includes additional resources, like the Evaluation Framework. We included various memos and links to the guidance for state policies that we've compiled on our website. At the very back, there is something that you can actually print out designed to be a form that you present to the hospital when you're being admitted which says: here's my name, here's my emergency contact, here's the support I need to communicate. It could be this person, it could be this AAC device, I need wait time, please be patient, etc. It cites the law and asks people to put this document on my chart and you can keep a (copy of the) document. It's designed to be used before you need to go to the hospital. We've heard that folks are actually doing it that way. Lots of folks have this filled out just in case they have to go to the hospital at some point. We have it translated in both Spanish and Chinese.

Maybe one of the tips for introducing this to a family, if a client has an upcoming surgery, is to refer them to this Communication Rights Toolkit, and encourage them to print out the Communication Rights form, right? Do you have any specific stories you want to share about its use at a hospital that's come back to your organization?

Tauna Szymanski I haven't heard long detailed stories about its use. But I have seen on many occasions, on Facebook, Twitter and in emails, that folks have brought this information to the hospital and have used it successfully. So that's been very gratifying.

I was truly inspired and grateful for the work that your small organization has been able to accomplish during this time when so many families have spoken about feelings of loss and fear about not being able to advocate for their loved one in a situation that is already very, very scary. And it's just been compelling to see the difference that this organization has made.

I want to express my appreciation to Bob and to you, Tauna, for what you've accomplished. Thank you so much. And I hope our listeners will look at the links in the show notes to check out the Communication Toolkit and the Hospital Framework.

Also, in the show notes, Bob, you showed me yesterday that, as of March 3, you posted a video on the history of communication rights. I only had a chance to start watching it and I can hardly wait to finish it. I urge everybody to check out that video. It is going to be an amazing tool for sharing the importance and value of the history of bringing communication rights to people. Thank you for that.

As we wrap this up, when we finally did get to have a tech check after creating a second meeting without the password, we started talking about Springsteen because I saw that noted in your bio, and I couldn't resist. You liking Springsteen makes a lot of sense to me, because at heart, he is really a storyteller. It seems to me, that you too, are very much a storyteller and you understand deeply the value of being able to tell your story. I asked if you had a favorite Springsteen song that you'd like to share?

Bob Williams As I told you before, this is the impossible question to answer. I first heard Bruce in 1972. I believe he was the warm up act for Richie Haven. But I was too focused on the redhead college student with me to give him any notice. Soon after, some friends turned me on to the stuff he did on albums, like Greetings from Asbury Park, and The Wild, the Innocent and the E Street Shuffle. So like every old friend, we have been through and continue to go through a lot together. In trying to make sense of this world, each in our own way, trying not to be blinded by the light. And to find some ways to make things more right.

So you're telling me there is no one song?

Bob Williams No, but here are a few. I love 'Jungleland' for its artistry. As the man wails, it is a ballet being fought out in the alley. Clarence's saxophone solo at the end always takes me places where I crave to be. 'Racing in the Streets' also calls out to me. It reminds me of my dad. His work ethic, his drive. The way he lived his life and expected us to do the same.

But if I really need my fix from the Boss, I listen to the 'Ghost of Tom Joad' and 'Youngstown'. The injustices Bruce challenges in many of his songs are as real, if not deeper, today than ever. But so are the yearnings they inspire. That is the fix I keep going back for. Of course, I can belt out 'Thunder Road' and 'Rosalita', just about anything he sings, with the best of them.

Absolutely ranks you as a top fan. I agree with you deeply. So thank you for sharing that answer.

I want to thank both of you for sharing your expertise today with our Aphasia Access members. I've learned a lot. And I'm hoping that we're able to get the good work that your organization is doing out to a lot more people. So thank you so much.

References and Resources

CommunicationFIRST COVID-19 Guidance

https://communicationfirst.org/covid-19/covid-19-guidance/

https://secureservercdn.net/166.62.108.22/izh.66f.myftpupload.com/wp-content/uploads/2020/10/FINAL-Disability-Org-Guidance-on-COVID-19-Hospital-Visitation-Policies-updated-100720.pdf

Americans with Disabilities Act featuring Bob Williams

https://www.youtube.com/watch?v=fLg533x8vKE&feature=youtu.be

CommunicationFIRST Covid-19 Communication Rights Toolkit

https://communicationfirst.org/covid-19/

During this episode, Dr. Janet Patterson, Chief of the Audiology & Speech-Language Pathology Service at the VA Northern California Health Care System talks with Dr. Rebecca Hunting Pompon, assistant professor in the Department of Communication Sciences and Disorders at the University of Delaware in Newark, Delaware, about depression, the effect it can have on people with aphasia and their care partners, and how speech-language pathologists can recognize and address depression during aphasia rehabilitation.

Guest Bio

Rebecca Hunting Pompon, Ph.D., is an Assistant Professor in Communication Sciences and Disorders at the University of Delaware, and director of the UD Aphasia & Rehabilitation Outcomes Lab. Prior to completing a Ph.D. in Speech and Hearing Sciences at the University of Washington, she earned an M.A. in Counseling at Seattle University and worked clinically in adult mental health. Dr. Hunting Pompon's research focuses on examining psychological and cognitive factors in people with aphasia, and how these and other factors may impact aphasia treatment response. She also trains and advises clinicians on interpersonal communication and counseling skills adaptable for a variety of clinical contexts.

In today's episode you will learn:

1. about the similarities and differences among sadness, grief, and depression, and sobering statistics of their prevalence in persons with aphasia and their care partners,
2. how the behavioral activation model can assist clinicians during planning an aphasia rehabilitation program for an individual with aphasia and his or her care partners,
3. 5 tips to use in starting conversations about depression with persons with aphasia and their care partners, and fostering their engagement in the therapeutic enterprise,
4. the value of community support groups for persons with aphasia.

Janet: Rebecca, I would like to focus our conversation today on your work investigating depression, and other psychosocial factors that patients with aphasia and their care partners may experience. Let me begin our conversation by asking how we define and think about depression, because I think everyone has an idea about what depression is, and how it may manifest itself in an individual's interaction with family and friends, and certainly in the past year, as we've moved through this worldwide pandemic, focus on depression has increased. You have studied depression in persons with aphasia, and how depression affects their care, so first, let me ask, how do you define depression? And then how often does it appear in persons with aphasia?

Rebecca: Depression is a concept that so many of us are familiar with. In one way or another, so many people have experienced depression themselves, or alongside a family member, so I think it's such a common concept. Likewise, many people know that the definition of depression that we use most often is about a mood disorder. Usually, the two fundamental ways we think about depression, clinically, is that it is either low mood, or it can be a loss of interest, or pleasure. So of course, we all experience this from time to time, but depression is really a much more marked, persistent low mood or loss of pleasure, or interest, and it can span across days and daily life and make a tremendous impact. Those two features go with some other features like a change in appetite, fatigue and energy loss. Some people experience a slowing of thought or slowing of physical movement, or experience trouble with concentrating, or trouble with focus. It also could include feeling worthless or excessive amounts of guilt, and it also can be accompanied by recurring thoughts of death, which can be with a plan or more abstractly without a specific plan. Those are the constellation of symptoms that can go with that formal depression diagnosis.

Of course, aphasia, as we all know, comes with some significant changes in functioning after stroke or other types of brain injury. Loss and grief are commonly experienced by many people with aphasia and their families as well. Unfortunately, those losses that are experienced with aphasia can lead to depression in a significant number of people. Let me give you a little bit of context on that. In the general adult population, maybe like 9% of the population or so may experience a mild to major depressive disorder at some point; the number goes up for people that have experienced stroke to about 30% or so. In studies of stroke survivors with aphasia, the number is significantly higher. We recently completed a study with about 120 people with aphasia, and about half of them reported symptoms that were associated with a depressive disorder, mild to major. And I think it's really important to note that this is based on 120 people that were motivated to participate, to volunteer for research. We really believe that actually, depression may be experienced by a quite a greater number of people with aphasia, because we're not capturing those people that are at home, they're not engaged in speech therapy, and we really wonder if rates of depression in aphasia might be quite a bit higher.

Janet: That is a stunning set of statistics when you think about all the people who don't report, can't report, or don't come into the clinic, and their feelings; their ideas are pretty much lost in the world. I appreciate the comment that the people participating in your study are motivated, and they experienced depression. It's out there, and we need to pay attention to it. As a clinician, how might one recognize the presence of depression in a client?

Rebecca: Depression can be really hard to observe at times. A lot of people with depression can mask their depression and seem to be doing fine. I've had this experience working with a number of people who seem to be really thriving after their stroke, but then getting into the details and discussing their life and their reactions, we come to find that they're struggling far more than we perceive that they are. Other times we may get some sense of an experience of depression, maybe we observe a lack of initiative or motivation during treatment or get some sense that our client is just not enjoying his or her activities the way that they used to, or the way that we hear from their loved ones, how they used to participate in their life. What do we do if we're wondering, "Hmm, depression? Is this a factor for this particular person?" It can be helpful to ask about the specific symptoms of depression, sometimes more than asking, "Are you depressed?" I that's true for a couple of reasons. First, some of our clients may associate the label of depression as having a lot of stigma. Stigma around mental health has been with us for a very long time, unfortunately, and it's really a barrier to making sure that we can provide care and address issues like depression in many people, not just people with aphasia. Of course, the other thing about the label of depression is that some people just feel very disconnected from that label. They might hear depression and say, "Well, that's not me, I don't really feel sad." But again, as we talked a little bit ago about those features and symptoms of depression, it's not necessarily just a sadness, it's about mood and so many other things that go with depression. It can be helpful to talk about those specific symptoms instead of just the label itself.

I wanted to throw this in there too, sometimes I've been asked this by a number of clinicians, "How do I tell the difference between depression and grief?" The short answer is that grief doesn't come with feelings of worthlessness or guilt or shame. It's not the turned-inward type of experience, whereas depression can be turned inward. Ultimately speech-language pathologists do not need to feel like they need to be mind-reader's; they do not need to feel like, "I am not a mental health expert, so therefore I cannot ask." We can ask about depression and depressive symptoms. We can ask ourselves, "Does this person's mood appear to influence their everyday life or their recovery?" That might be the thing that will push us forward to ask a little bit more about what their experiences are like. Helpfully, there are a couple of screening tools that are really useful for clinicians, regardless of type of clinician. One is the Patient Health Questionnaire. It's a depression scale, vaguely named. It's also called the PHQ. The PHQ is a nine, or there's also an eight, item version. They're very simple scales. They've been developed for clinical populations, so the phrasing is quite short and straightforward. They use a Likert scale and they're very well validated screening tools that are also free. I believe we're going to have the pdf of the PHQ-9, which is nine items scale, in the Show Notes.

Janet: Right

Rebecca: Great. Another scale that's been developed specifically for aphasia, though, it's really addressing caregivers or other proxy reporters, is the Stroke Aphasic Depression Questionnaire, or the SADQ, and it's available also for free. There are a couple of different versions. Again, that's been created for people with aphasia in mind, specifically their caregivers. So that's really helpful tools. In Short, these are great tools to use, and just give us a little more information as we're having a conversation about depression. They then give us some ideas about what next steps to take, including referrals that we might be thinking about.

Janet: Rebecca, those are excellent ideas. And indeed, those two resources you mentioned will be in our show notes. You speak about depression in patients with aphasia, but I believe that depression also affects the care partners of a person with aphasia. What do you see is the role of a clinician in recognizing depression in a care partner?

Rebecca: This is really, unfortunately, true. Depression is experienced by caregivers, including stroke caregivers and aphasia caregivers, and depression symptoms align, and maybe not surprisingly, with the degree of caregiving effort that's required by the family members. In other words, caregiver depression, can be higher when caregivers are working with a loved one who has more severe functional impairment. Here are even more sobering statistics. There was a study conducted, it's a few years back, about caregiving adults, ages 66 and up, so it's a lot of our clients, family members, and spouses, etc. Those caregivers who reported mental or emotional strain had a 63% increase in mortality risk compared to caregivers who did not report strain. That's a really shocking and sobering to think about. The takeaway here is caregiving burden, as it's often called, that s just a very, very real problem with us. Given that caregivers are such an important part of our client's recovery, their health and well-being are just incredibly important. So how can we support them? They're not our primary concern, because our client is, so what do we do? What do we do for caregivers to support them? Of course, we can ask how they're doing, certainly. Then we can also provide some support resources, support groups, counseling services, and the fact that we are doing much more online now has opened up opportunities for both caregivers and clients to participate in lots of different ways, to connect virtually, and so that's great.

Another really great tool that can be used is called the Caregiver Questionnaire. It's a questionnaire that has 17 items and was developed by the American Medical Association. It just goes through a listing of common caregiver experiences that can really be illuminating for caregivers. I've given this questionnaire to caregivers in different contexts, including in caregiver support groups. What I hear from caregivers, once they go through those 17 questions, is often they're surprised. They're often not thinking a lot about how they're doing themselves, because they're very focused on supporting their loved one. It can be really illuminating for them to answer the questions and realize, "Wow, I am really fatigued I'm really tired. And maybe I need some extra support". What I sometimes recommend to clinicians is having this questionnaire on hand and providing it to caregivers while you're working with the client, and then maybe checking in at the end of the session to say, "You know, how was that for you?" And it's an opportunity, again, to provide some support resources that they can explore on their own. I think it's a really handy way to just shine a light for caregivers, saying, "Hey you're doing a lot, we recognize that and we know you need support, too."

Janet: I think that's very important. It reminds me of the message you see on the airlines, you know, put your own oxygen mask on first, so that you're better able to help the other people. If you're a caregiver, you must take care of yourself, and we must help the caregivers take care of themselves so that they can better care for our patients with aphasia.

Rebecca: Oh, my gosh, so true.

Janet: Depression typically does not appear by itself. You've alluded to that and mentioned that earlier. In your experience and investigation. How does depression interact with coping skills, resilience or motivation? Are there other interactions that we may see in persons with aphasia?

Rebecca: Oh, my gosh, depression, part of the reason that I studied depression, among other things, is that it's a really interesting experience. It's part of a grouping of some biophysiological processes that are so intimately linked together. I hope you don't mind if I geek out a little bit here.

Janet: Geek away

Rebecca: Geek away - All right. We know that when we perceive something stressful, like, let's say we're near a potentially dangerous animal or something like that, it's classic example. It triggers systems in our body that helps us respond, right, we've heard of the fight or flight response, where our adrenaline system jacks up so that we can move quickly, right or get away from the danger, or if we have to, fight it off. Then once the danger is gone, our body goes back to its normal functioning state, the adrenal system stops pumping out adrenaline and our heart rate slows to a normal rate, all that good stuff, right? So of course, our body does pretty much the same thing when we're not in danger, per se, but we are experiencing or we perceive stress; that could be public speaking for some, or a big job interview. Then thinking about people with aphasia, maybe it's really stressful to make that phone call to somebody, even someone they know well. They don't feel confident about their communication ability, and that can be incredibly stressful. Even though it's not danger, it still can kick our body's stress systems into gear, activating that adrenal response, etc. Here's the thing, though, if our body is entering that stress state pretty regularly, it gets regularly flooded with these stress biochemicals that can impact multiple systems. We can handle those biochemicals, we were built to handle those biochemicals. But we weren't really built to handle them all the time, or often over a long period of time. If those biochemicals are circulating in our blood, they can really have a damaging effect on our body, and they have a damaging effect on parts of the brain, that are really important for us as speech language pathologists thinking about treatment, right? So those biochemicals, and cortisol is among them, can diminish functioning of regions of the brain that we need for things like attention and memory, things that are really important for learning, right? What do we do in treatment - we learn. At the same time, these biochemicals can increase parts of the brain, like the amygdala, that are really central for emotion. In other words, if we're experiencing persisting stress over a period of time, we may have impairments in memory and focus to a degree, and we may also experience depression, anxiety, and other mental health challenges. I got really, really interested in stress and depression a few years ago, and as you mentioned at the beginning, we created a scale for chronic stress for people with aphasia. Using that scale we found, just as we would in the general population, that there are very close associations between reports of perceived chronic stress and reports of depressive symptoms. The bottom line is that chronic stress is significantly connected to depression, and it's significantly experienced by our clients with aphasia.

You asked about coping skills and resilience and that's another area that I've been really, really interested in. We know that there's an association between depression and resilience, or how people cope with stress. As resilience goes up, depression tends to go down. But we also have seen that this relationship is more complex than I anticipated. We are currently validating a scale of resilience for aphasia. We really want to understand better how resilience and depression and other mental health challenges fit together, and then how we address them.

Janet: I think that's very important work because we're, when we engage on the therapeutic endeavor, when we begin treatment, it is a partnership. And both the clinician and the patient with aphasia, but also the caregiver, we have to be in there engaged in that process and moving forward to achieve whatever communication goals we have in mind for the patient. If a patient is not engaged because of low coping skills or low resilience, because of depression, that can certainly affect our treatment,

Rebecca: Agreed. It's things that we don't really understand. I mean, we understand to a degree, for sure, but I think with some time and some additional research, we'll be able to understand much more clearly how depression and resilience impact treatment, and also how we can capitalize on resilience and build it. I'm looking forward to uncovering some of these associations and understanding them better.

Janet: Oh, I look forward to reading your work on that. I want to ask you now the next logical and perhaps obvious question, which is how may depression experienced by a person with aphasia adversely affect the treatment, as well as the quality of life in that person, and with the person's caregivers?

Rebecca: We've talked about people who have experienced depression in one way or another, and depression is really mean. It is really a mean, mean process, that can sap our interests in things that we like to do and screw up our sleep and our appetite. It impacts others around us, of course, but yes, absolutely, depression can dampen motivation. That's one of its features, it can dampen motivation to get out of the house, or for our clients with aphasia, it can diminish how much initiative they want to take with activities, especially social interactions that really help with language function and recovery. It may diminish their initiative to seek support or to reach out and start speech therapy. Then, even when a person has decided to actively engage in therapy, depression may also limit how much he or she can take away from that therapy experience to a degree, given that it's harder to attend to things, it's harder to concentrate, it's harder to remember, when you are also struggling with depression. Then it's also that all of those things that contribute to how well we can engage in treatment and adhere to treatment recommendations. We need a level of motivation and initiative and energy to tackle assignments that our therapists might have given us to work on in between our sessions. There are just multiple ways that depression could influence treatment, either through those diminished cognitive processes, or the impact on engagement, and adherence. There are just a lot of questions that we have, still about these impacts on treatment, and how they influence the outcomes of treatment.

Janet: One of the things we've observed in some work we've done recently is that people talk a lot about motivation, or resilience or coping, but people haven't yet figured out what that means or how to identify it. I'm very glad that you're doing some of this work to help us understand how we can best approach the treatment effort and really assure maximum engagement of the patients to achieve the goals that we want to achieve.

Rebecca: It is really interesting. There is some really interesting work going on in some other allied health disciplines that is, I think, helping us to pave the way in thinking about how to ask these questions about engagement. It's for our clients as well. I am excited to move forward on that.

Janet: You're right about that! Speech-language pathologists are by nature, compassionate individuals, and would be responsive to a person with aphasia or a care partner who seems to show depression. What guidance can you offer for clinicians as they plan and implement a rehab program for a person with aphasia, who shows signs of depression?

Rebecca: Oh, first of all, Janet, I agree. Speech-language pathologists are such a big-hearted bunch and that is just a real plus for our clients. There are a number of things that we can do to consider depression and treatment planning. In addition to being aware of the impact of depression, and those engagement and motivation issues, the cognitive issues, and the screening that we already talked about, we of course, can make appropriate referrals. This can be easier for some clinicians and more difficult for others. Some clinicians who work in an environment like an acute care or rehab environment, may have access to a psychologist or social worker, rehab counselor, someone like that who can help step in and provide support or other resources. For other clinicians who work in outpatient settings, the best referral might be to the client's primary care physician. Unfortunately, as we know, there are just not enough mental health professionals with aphasia expertise; we need so many more of those. That's a whole other discussion, isn't it? The primary care physician and support groups can be some of the first people that we refer to, if we are working in an outpatient setting. In addition to those things we can also provide some information and training to family members, and our colleagues and our clinical teams about supportive communication techniques. Interestingly, people with aphasia have talked about how interacting with people that know a little bit about aphasia and know how to support communication really can not only facilitate the conversation, but also help improve their mood, and give them a little boost. They also talk about how important it is to both acknowledge their experiences and perspectives and struggles, and to have at the same time, a positive outlook, to use humor, to celebrate goals. All of those things have been things that people with aphasia have talked about as elements that really help in working with clinicians and others for that matter.

Another thing that has come up, and you and I have talked about this a little bit, is also about the tremendous impact of mental health challenges for people with aphasia. We talked a bit ago about the very high incidence of depression in aphasia. And so, people with aphasia have said in previous work that they really wanted more information about low mood and changes that can come with stroke, around mood and mental health, and wanted an open forum to talk about that, and continue those conversations with caregivers as well. That open discussion about depression, about other kinds of mental health struggles, can really help normalize it, help destigmatize it so that we can address it more readily.

Janet: That makes sense. And you know, one of the key points I heard you just say is that, as a clinician, it's important for us to be aware of the community resources that are around us, whether they're specific individuals like neuropsychologists or mental health workers, or support groups or community groups. Bearing that in mind that we're not alone, as clinicians working with patients with aphasia, we have a whole group of people who can contribute to this rehabilitation effort.

Rebecca: Absolutely. And I was going to add, in addition to the myriad of people that can be around and supporting people with aphasia who are struggling with mood issues and other mental health challenges, support groups are really amazing. I would say if I gave a couple of tips for clinicians, but I had three things that I was thinking of, that we can really encourage for our clients, and one is to really seek out those support groups and other opportunities for connection with each other. I mean, I think we all know that groups can be so amazingly effective at not only providing some opportunities for social connection, but also that emotional support, and kind of perspective-checking opportunities for our clients can realize, "Oh, I'm not alone, others are also struggling in a similar way." I'm the biggest cheerleader for support groups, as I think we all are,

This is one of those broken record things. Exercise is another incredibly, useful tool. We all know, of course, that exercise is good for our health and our cardiovascular functioning, all that good stuff. But it also so helpful in improving mood and cognitive functioning. Getting outside and moving around is just so important. There is just scads of research across many health disciplines that talks about this and reminds us about the importance of exercise.

Here's the other thing that I think is really cool to suggest to clients. And that is, in simple terms, do more of what you like to do. There's been some work around behavioral treatment approaches for stroke survivors, including those with aphasia, using a framework called behavioral activation. Thomas and colleagues in the UK have done a little bit of work around this. The basic notion is that by doing more of what you like to do, provided it's healthy and not detrimental, of course, can really help improve mood. When we do things we enjoy, it releases endorphins, and it gives us some sense of satisfaction and well-being. That's exercise for some people, not for everybody. Other people may find doing creative things, or learning something new, or engaging in something that feels like it's contributing in some way. Those can all be things that can over time, help improve mood and outlook. This can be a little challenging for folks with aphasia; the things that they think about or reach for, or things they enjoy, are maybe no longer available to them because of their language and communication impairment, or other impairments that have come with stroke. So again, the support groups are so helpful. They can be places where people have an opportunity to learn about new activities or connect with opportunities that may fill that hole of things that they like to do, new things that they hadn't discovered before. I always have more plugs for support groups.

Janet: The things that you mentioned, they're simple, they're easy, but they're so powerful. Sometimes we forget that the simple things can often have the biggest change or make the biggest change, or the biggest difference for us. It's a good thing that you have been reminding us of those things today.

Rebecca: Simple things, and sometimes combinations like a couple of simple things together can make a huge impact.

Janet: As important as the treatment techniques are to address specific linguistic and communication goals, an individual's mental health state and their feelings of engagement with the clinician and the process are just as important, as we've mentioned several times today, What advice or suggestions or lessons learned, can you describe for our listeners that will help them become better clinicians, and address the whole person in aphasia therapy, including our role as clinicians in counseling, and I don't mean the professional counseling that is reserved for degreed mental health professionals. I mean the communication counseling and quality of life communication counseling.

Rebecca: Yeah, even though speech-language pathologists are not mental health experts, there really are a number of very simple counseling skills that can help connect with our client s and more fully understand how they're doing, where are their struggles are, how are they doing in terms of mental health. When we understand them more fully, what's important to them, what they're struggling with, then it's easier to build treatment plans that fit them as individuals. So, if I'm putting on my counseling hat, I have a couple of things that I would prioritize, I think I have five, five things that I would prioritize as a speech-language pathologist using some counseling skills.

Janet: I will count them.

Rebecca: The first one is really to consider their stage post event or post stroke. If the stroke or the event is new, we may be working more with the family; they may be in shock, they may be overwhelmed and struggling to take in the information that we and our clinical team are providing to them. Those conversations differ tremendously from the conversations we might have with clients and families that are in the chronic stage, because they have a better sense of aphasia and of what it means for them, what their everyday needs are, etc. I think considering first of all, the stage post stroke or post event is really important.

The second thing I would say is to find empathy and unconditional positive regard. It is good to know that depression is complicated, and it can come with emotions, a lot of different emotions and experiences from anger and frustration and shame, and so sometimes our conversations around depression can be uncomfortable. I would say, approach these conversations in an open and honest way about the client's challenges and maintain that unconditional positive regard even when we're feeling that discomfort ourselves. If they are angry and frustrated, we also may feel angry and frustrated or defensive or something else that doesn't feel very good as clinicians, or for anybody for that matter. Just remembering that unconditional positive regard, that we really all want the same thing. We want improvement. We want improvements in life and to face things like depression and find some answers that will really help push clients forward.

The third thing that I would say is giving clients and family members our full attention and listen really

actively and carefully. Sometimes this can be just an extra 30 seconds, an extra 60 seconds of listening using some reflective techniques that can really provide some critical information about our client, their needs and priorities that we can use in treatment planning. At the same time, this act of listening very deeply, and reflectively can help build our connection with their client and that's going to help promote engagement, adherence, and trust, which is just so essential for the therapeutic alliance.

The fourth thing I would say is communicate multi-modally. I would say this not just for clients, but for family members as well. I myself have been the caregiver in situations where a clinician, never an SLP I will say, has come in and talked to a loved one and it was wasted words and time because nobody could take in that information. It was feeling overwhelmed and that that information might have come in as just some noise; maybe we remember one or two words from it and couldn't take the rest of it away, just given everything else that we were processing in that moment. I always say, never just say something, say it and write it or diagram it. This is just again, so important with clients and families who are stressed, who are depressed or anxious in some way. It is just so hard to remember when we're feeling overwhelmed. We can really support our clients and families by communicating in a multi-modal way. Even almost as important as summarizing what we've said and providing information again, I had a caregiver once say never tell us more than three things at once, because the fourth thing is going to be lost. I took that to heart; I understand that that makes perfect sense. And of course, providing a lot of opportunities for questions is helpful. That number four had a lot of pieces to it.

Here's number five, and this is really obvious, developing mutual goals with our client and revisiting them. Sometimes when our client is struggling with depression, we might find their treatment plan seemed like a great idea, seemed like a great fit for our client, and just falls flat. If our client is really struggling to concentrate or engage in an activity because of depression, it just makes sense to stop and revisit those goals and make sure they really line up with the client's interests and priorities, but also how they're doing and how they're able to engage given everything else that's going on - mental health-wise and otherwise.

Janet: Those are five excellent tips, Rebecca, excellent. And again, they're not difficult things to do, but they're so important, especially if you do all five of them together. I think our listeners are going to be quite pleased to learn about these five ideas that you have.

Depression experienced by persons with aphasia is not new, we've talked about this earlier, certainly as long as there has been aphasia, there have been people with aphasia and depression. But although it's not new, it has not been well recognized or really well studied, as you mentioned earlier on. During the past year, as a result of changes due to the pandemic, such as the stay-at-home orders, limitations on in-person activities, and the increase in virtual care, I believe depression and associated mental health and self-care concerns have increased and have come to the forefront of our thinking. Have you found this to be the case?

Rebecca: It's interesting. We are in the midst of a study right now, that's looking at how our research participants are doing during the pandemic as compared to pre-COVID, pre-pandemic. We're not done, we're midway through, but so far, we're seeing some really interesting challenges that people are reporting with everyday functioning during the pandemic, which it doesn't surprise us, of course, we're all struggling with functioning, I think, during the pandemic. We're not necessarily seeing greater levels of stress for the group we've done so far. Some people are reporting more stress, and some people are reporting less, which is fascinating. I'm going to give you some examples. Some people have said that they're not really that bothered by not being able to leave the house. Then other people are talking about how they're not able to do the things that they've always done, and that's been really difficult and stressful for them. So clearly, there's a lot of variety of experiences that we've heard so far. I'm really looking forward to finishing up that study and just looking at all the data together. Maybe the next time we talk we'll have some better news or a clearer picture about what people's experiences are like.

Janet: I'll look forward to hearing about that.

Rebeca: Separately, a couple of months ago, we chatted with our friends with aphasia and just asked, "Hey, what's been helping you during these lock downs, during this time of isolation?" And here's what they said: they said things like games and puzzles and dominoes were helping; listening to music every day. One person found brain teaser books were helpful and fun right now; several people were cheering for support groups that they were attending online; playing with pets; connecting with family over FaceTime. One person talked about chair yoga. Those are the things that our friends with aphasia are doing that they say are really helping.

I think we're all thinking about self-care right now. It's just so important, of course exercise and getting outside and learning something new. I think we've all heard of countless people that have learned to bake bread this year, me among them. Taking care of things like a new plant, and then just finding ways to connect with each other, though a little bit different than we were doing it before.

Janet: That is so true. I think we've all been finding those new ways and new things and new ways of connecting with people. Rebecca, you've given us much to think about today. Depression may not always be easy to recognize in an individual, and certainly its management is multifaceted. As we draw our conversation to a close, what are some words of wisdom that you have to offer to our listeners who interact with persons with aphasia every day? And who may be wondering, "How do I start a conversation about depression with my clients, or my clients' caregivers?"

Rebecca: I would say first, be yourself, be genuine. When we are able to genuinely connect with our clients and their families, it really does strengthen the trust, and build our relationship for some good clinical work together. Then ask about depressive symptoms, as we've talked about before, and communicating openly about depression; not something that we should, you know, hide away, but actually discuss and regularly check in on, as well as providing some resources and support for what to do when someone's feeling depressed or struggling with mental health. Then listening fully and acknowledging the experiences of our client, the good stuff, the difficult stuff, all of it. They're really the experts on life with aphasia and they are such a critical part of our clinical decision making. Then keeping our eye on the literature as there is more clinical research on depression, and other psychological challenges in aphasia right now than I think ever before, which is incredibly exciting. So just keep an eye on that. And then I think this is a really important one - take care of yourself. Clinicians working with people with communication disorders are also experiencing depression. It can be a lot over time, and no one can be a great clinician if their own health, their own well-being is compromised, so do what you can to take care of yourself. Again, simple things, several simple things we can do to just make sure we're our most healthy and going to be the best supporters for our clients and their families.

Janet: Those are some very, very good suggestions. If I'm right, you have a paper coming out in Perspectives soon, about counseling skills, is that correct?

Rebecca: Yeah, there should be a paper coming out soon about counseling skills, and also about stages using those skills, depending on the stages post event or post stroke, hopefully, that'll be coming out really soon.

Janet: This is Perspectives for the Special Interest Groups within the American Speech-Language-Hearing Association. I have to say, I remember, oh gosh, many, many years ago, I wrote a paper for Perspectives on depression and aphasia, and at that time, there was not very much written about it; people were thinking a little bit more about quality of life. As I reread that paper before talking to you today, I found myself thinking how much more information is available now, how much more in the forefront is the topic of depression, and mental health and psychosocial skills, and how pleased I am that there are so many people who are really recognizing the importance of having these conversations with our clients and caregivers.

Rebecca: I'm so glad that there's more available now, but I have to say thank you, Janet, for blazing that trail those years ago, you have been an inspiration clearly and I'm glad that we are picking up the pace on these important topics.

Janet: And you indeed are. This is Janet Patterson and I'm speaking from the VA in Northern California, and along with Aphasia Access, I would like to thank my guest, Rebecca Hunting Pompon, for sharing her knowledge, wisdom, experience and guidance about this most important topic, the effect depression can have on persons with aphasia, and their care partners.

You can find references and links and the Show Notes from today's podcast interview with Rebecca, at Aphasia Access under the Resources tab on the homepage.

On behalf of Aphasia Access, we 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, please go to www.aphasiaaccess.org. If you have an idea for a future podcast topic, please email us at [email protected]. Thank you again for your ongoing support of Aphasia Access.

Links and social media

Lab website: UDAROLab.com

Facebook: "UD Aphasia & Rehabilitation Outcomes Lab"

AMA Caregiver Self Assessment Questionnaire (free pdfs; 5 languages): https://www.healthinaging.org/tools-and-tips/caregiver-self-assessment-questionnaire

Citations

Modified Perceived Stress Scale: Hunting Pompon, R., Amtmann, D., Bombardier, C., and Kendall, D. (2018). Modification and validation of a measure of chronic stress for people with aphasia. Journal of Speech, Language, and Hearing Research, 61, 2934-2949. doi.org/10.1044/2018_JSLHR-L-18-0173

Patient Health Questionnaire depression scale (PHQ)

PHQ9 Copyright © Pfizer Inc. All rights reserved. Reproduced with permission. PRIME-MD ® is a

trademark of Pfizer Inc. (open access)

Stroke Aphasic Depression Questionnaire (SAD-Q) https://www.nottingham.ac.uk/medicine/about/rehabilitationageing/publishedassessments.aspx

During this episode, Jerry Hoepner, a faculty member in the department of Communication Sciences and Disorders at the University of Wisconsin – Eau Claire, has a conversation with Dr. Gayle DeDe about the upcoming Aphasia Access Leadership Summit.

Take aways:

1. Get to know the back story about Gayle's LPAA mentors.
2. Learn how the planning committee strategically distributed the schedule to reduce Zoom fatigue and to retain as much of the close knit, reunion feel that past Summit attendees love as possible.
3. Hear a sneak peek about the Gathertown app, which will be used in our social get togethers at the summit. Make your own avatar (MYOA).
4. Shout out to members of the planning committee!
5. Multiple opportunities to learn about telepractice.
6. New to this year's summit! Accepted oral talks.
7. Hear about the great lineup of invited speakers. Check out the Aphasia Access Facebook page and Twitter feed!

Interview transcript:

Jerry Hoepner: Hi Gayle, nice to see you today.

Gayle DeDe: Thank you, nice to see you too.

Jerry: Long time, no talk. It's been at least two days. Well, I'm really excited to have a conversation with you about the upcoming Leadership Summit and kind of what we can expect when it comes to the summit. Before we jump into that conversation, can we start out just with a kind of a traditional question of mine just asking about your influences and your mentors in the life participation approach.

Gayle: Sure. It's hard because there's just too many people to name them all. I have been raised academically and clinically by a village. In the traditional sense, so I would say that the first sort of really important mentorship that wasn't exactly about the life participation approach, but is related, I think. It was my undergraduate thesis mentors, so this is going back many, many years when I was in psychology and linguistics and I was very interested in those topics and I was doing a thesis with someone who is in the department of communication sciences and disorders, at my university. And as part of that I was able to go and observe treatment sessions, with one of my mentors, who was a speech pathologist and I had this epiphany, lightbulb moment; that this work that I really enjoyed That was really interesting to me from a theoretical perspective could have an influence on real life people and that that was what I wanted, but it wasn't enough to be purely theoretical that I wanted to be able to take what I was doing and apply it to people.

Jerry: That's a great epiphany and definitely a life participation moment for sure.

Gayle: um and then my PhD mentors are both, you know, strongly rooted in the cycle in mystic domain Gloria Waters and David Kaplan but also were really good about thinking clinically and thinking about relationships between theory and practice, and so I think that also had a really significant impact on me and how I think about clinic in general um and then. Liz Hoover actually hired me for my clinical fellowship is an exciting side note, but she when she came to Boston University. They started the official resource center when I was still in graduate school at BU, and so I was able to run some groups in that context and have my first real experiences with aphasia groups run within a life participation approach. And that was very impactful I ended up sort of stepping back from that to do more psycholinguistically oriented research for several years. At the University of Arizona, while I was there, I got to be pretty good friends with Audrey Holland, who is a professor emeritus at University of Arizona, and she helped me in a million different ways and mentored me in a million different ways. But one of those was when I was trying to think about where I really wanted to go with my career trying to decide if I was in the kind of position I wanted for the long term. She was really encouraging and help me think through what it was, I really wanted and without that I don't know that I would have been able to have been in the mental space to make the move from University of Arizona to Temple where I'm able to be the director of an Aphasia Center. And then the last group, I would mention is just the members of the Aphasia Community at Temple have had an enormous impact on my life as a researcher as a clinician and just as a human.

Jerry: Yeah, what a what a great bridge from that theoretical background too strong applications with Audrey and Liz's guidance. And I 100% agree and I've heard so many aphasiologists talk about this that the people within our groups are our best teachers and really. I just continue to learn every day when I interact with my group members as well, so that's really that's really outstanding and valuable so appreciate that. Um, so thinking about that you know as you talked about what you wanted to do, how has the LPAA framework kind of influenced your research you're teaching your clinical work? I know that's a big question.

Gayle: Indeed, yes, so in making the transition for me part of what I wanted was to be able to do clinic for clinics sake. In the kind of track I was on previously it would have it felt like it would be difficult for me to do clinic outside of a research setting and I wanted to be able to tailor clinic to the people I was working with and you know, with groups, even though you're in a group setting like we add groups, depending on what our group members expressed interest in, so I felt like I could actually do that in the setting I'm in now um and then just More generally, I have found that when I'm thinking about clinic I start at the end. When I'm talking with students, the question is always you know where does this person want to get to themselves and what can we do, based on what we know of the evidence to help them get there, how are we going to implement treatment protocols to get them to where they want to be, or as close to their as where they want to be as we can.

Jerry: Outstanding I believe another very fine aphasiologist once said, begin with the end in mind, Aura Kagan has had that influence on all of us so.

Gayle: Yes indeed, and then from Audrey, I think that trying to focus on what people with aphasia can do not just on what they can't do, focusing on strengths rather than weaknesses.

Jerry: Yeah, what terrific guidance and a terrific way to spring off into our conversation about the aphasia access leadership summit coming up pretty soon in April; nice to see it coming to fruition for sure.

Gayle: Wow, I'm very excited.

Jerry: Gayle, I know you in the planning committee have done a lot of planning to make this virtual event feel like a get together, so it feels as close knit and interactive as possible. So, many past summit attendees see the summit as the kin to a family reunion type of feeling right about the steps the team has taken to retain that feeling.

Gayle: Sure, first of all I want to point out that you are part of this team. You and I are the co-chairs of the summit. So, we have done a lot to try to think about how to keep a more community-based feeling with the summit, so one thing is that we've planned synchronous talks where there's opportunities to ask questions online, but also if people aren't able to attend the synchronous top. They can watch some of the talks after the fact, and then communicate by discussion board so there's still the opportunity to interact and then we've planned purposefully to have some time for unstructured informal conversation so we're using a platform called Gathertown, which essentially is like a little like a big Zoom room, with little separate areas in it and you can enter into the gather town space, then you can see who is around, and you can have a little avatar that you can move to join conversations with people you know and to join different conversations to see your friends and be able to catch up so it's not you know it's better than live cocktail party and that there's not so much background noise. But there's still that feel of you can see someone across the room who you haven't seen for a long time and go say hi to them. So, that's pretty exciting, so we have a BYOB cocktail party scheduled for Thursday night and then we'll also be using Gathertown during the day on Friday and then also at the end of the day, on Saturday so as people are on their way out, they can chat with their friends and make new friends.

Jerry: Terrific so with my little avatar I could walk over to Audrey Holland and have a conversation about her mentoring, have you those kinds of things that'd be fabulous. I like the idea, you know of having walking around in this little blue avatar, right? just like the movie.

Gayle: Just like it.

Jerry: Just kidding. Um, terrific so that sounds like we've put a lot of thought into just achieving that kind of close-knit feel and trying not to get overwhelmed with all of the zoom time and creative ways to make that happen.

Gayle: yeah.

Jerry: Terrific! Hey, you know, before we jump any further how about we just give a big shout out to our planning committee for all of the time that they spent contributing ideas to that you know developing an online conference that really does facilitate that close knit feel and for all their work reviewing a lot of proposals so who should we shout out to.

Gayle: And so, in alphabetical order and we had Jamie Azios, Mary Beth Clark, Will Evans, Katarina Haley, Trish Hambridge, Nidhi Mahendra, Maria Munoz, Catherine Off, Andrea Ruelling, and Debbie Yones were all on our committee and gave really fantastic feedback from lots of different perspectives.

Jerry: Absolutely, maybe a virtual round of applause, here we don't want to anyone's ear drums on the podcast but yeah, thank them so much for the work that contributed for sure.

Alright, so we know that sitting in chairs and staring at a screen all day long can really get to be exhausting. I think we've all pretty much learned that lesson, this year, if nothing else. So, what kinds of things, specifically, have you done to break up the schedule, so that attendees stay connected and kind of reduce that zoom fatigue.

Gayle: Yeah, so we did a couple different things, first of all, we spread out talks across the week, so the way the conference is structured they'll be for a full week. Monday, Tuesday, Wednesday, Thursday there'll be talks from 12:00 pm to 1:15 pm (CST) every day those will be synchronous so attendees can watch them live (Note all times are Central time zone). And if that doesn't work with your schedule, you can watch it later and then like I said communicate with the speakers using discussion boards. For Friday and Saturday, we tried to keep the days relatively short, and we also built in some different like what we call mind and body breaks so, for example, Aimee Dietz's group will be talking about yoga with people who have aphasia with her team and part of that will involve some demonstrations of aphasia friendly yoga So hopefully our attendees can get up and get moving a little.

Jerry: Absolutely and nice to kind of get that midway stretch and still be learning, while we're stretching so that'll be really great.

Gayle: Sure, so, in addition to the body and mind break Will Evans and his group will be talking about aphasia games for health which is a prototype for using games for people with aphasia feature friendly games so that's another way that we're going to be able to have sort of a less research heavy talk where you're still learning but it's you know a little calmer, maybe.

Jerry: Sounds like fun, right?

Gayle: Yes.

Jerry: Well, obviously we wouldn't be having this conversation, the same way we're having it right now, if it weren't for COVID, right? Our world changed with the onset of COVID and there's a rapid shift to the virtual telerehab format. Can you share a little bit about who our invited are and how they're going to address those current issues?

Gayle: Yeah, we have a couple of different ways, so, first of all, on Tuesday we're having a panel on telepractice for people with aphasia and what I'm particularly excited about there is that we have people who have been doing telepractice for quite a long time, like Judy Walker along with people who are relatively new to using telepractice, and then we also have two people with aphasia who will be on the panel as stakeholders to talk about their experiences of telepractice.

Jerry: That's going to be terrific.

Gayle: Yeah, and then another way that we're addressing this is by inviting Jane Marshall who's going to be talking about Eva Park for people who don't know Eva Park is a virtual world that was designed for people with aphasia in order to practice functional communication, you can hold groups there. It's a really interesting space and they've been working on Eva park for a very long time, so they've done a lot of work around how to work with people with aphasia in a virtual space so I'm also really excited to hear about that, and then we also have several poster sessions about the transition to tell a practice, including some about transitioning music groups which I am super excited about.

Jerry: Agreed, sounds terrific well speaking of invited speakers how about a little bit of a at least a taste or an overview of what those invited speakers will discuss.

Gayle: Yeah, so I mentioned a couple of them already and we also have Charles Ellis who's going to be talking about health care outcomes and health care disparities for people with aphasia which I'm really excited about. And then we're also having what we were informally calling the master class on aphasia groups. It's a panel conversation with people who are really just experts in running conversation groups, and they are going to be talking about various aspects of how groups are put together how you run them what kinds of things you're thinking about during group. And we sat in on some of the earliest planning meetings and I learned so much during just the planning meetings I'm ecstatic to hear what they have come up with in the time since so that's really exciting.

Jerry: Agreed, and like you said they're reluctant to call themselves master clinicians but this is a unique opportunity to look over their shoulder. We get to see how they think, and why they do what they do so I agree it's going to be very exciting.

Gayle: Yeah, and just thinking about you know the there's such a range and how we all implement groups it'll be really interesting to hear how different masters clinicians implement different concepts and I'm just I'm very excited. Then another really exciting thing on Saturday is we're going to have Karen Sage talking about therapeutic alliance with people who have aphasia and then, following on the tales of that Katarina Haley will be talking about collaborative goal setting for people with aphasia so really focusing on how we can work together with people who have aphasia to maximize treatment outcomes.

Jerry: Absolutely, that's going to be just a terrific pairing of those two ago so well together outstanding. Right? Well, this is the first year that we will have accepted proposals really exceptional proposals as oral presentations. Can you tell us a little bit about the accepted oral presentations?

Gayle: Sure, so we have three accepted talks I should mention here that we had many, many more submissions for oral talks than we could possibly accommodate so we had to say no to a lot of really fantastic talks.

Jerry: There were several and all of them were really terrific so.

Gayle: Yeah, it was we had to make some painful choices. And so, the three talks that we have were universally acclaimed by the reviewers and also have. A lot of relevance for both research and clinical perspectives so Marion Leaman and Brent Archer are going to be talking about empowering people with aphasia to initiate topics of conversation. There will also be a talk by Jamie Azios, Jamie Lee, and Roberta Elman about running virtual book groups and how to encourage engagement in virtual book groups. And then finally Jackie Hinckley and Janet Patterson are going to be presenting results of a study, where people with aphasia were randomly assigned to receive impairment or activity focused treatments and presenting results, about which type of treatment seem to have the best effects. Well, I'm really excited for all of those talks.

Jerry: Absolutely, that's super exciting. All right, well Okay, you know that's right, we had a lot of proposals, this year, can you talk a little bit about the different formats and how we try to make them as interactive as possible.

Gayle: Yeah, absolutely so I mentioned a little bit already about the invited talks and the accepted talks so that will be one format. And they're also going to be Brag n' Steals as is the tradition for the summit and those will all be synchronous live. And then we're also having just one poster session and we're going to be obviously virtual poster sessions are very different from live poster sessions. So, we are developing a format, where each poster will be in its own Zoom room and attendees can basically drop in on the different Zoom rooms that they're interested in and hear you know talk with. The author or authors about the contents of the poster they can have a run through like you would typically have and then our plan is also to make the poster overall the big poster accessible in a PDF format. For attendees so you can sort of get the big picture, but you can also go into the Zoom room and talk with the authors so we're trying to keep that interactivity that is so great about poster sessions and again like with Gathertown, with the added benefit of less background noise, which is something I always think of as a speech pathologist when I'm in a poster session, then we should loop all of our posters to.

Jerry: agree, no big poster hall with people shouting next you and so no vocal trauma or less trauma. And we're putting together some guidelines that will send out to people who are presenting posters, so that they have a clear idea of what that will look like and how to kind of maximize the way that they deliver that so yeah excellent okay.

So, it's sort of a tradition that Audrey Holland, at the end of the conference wraps things up provide some takeaways and a conclusion at the end of the summit that's still going to happen this year.

Gayle: It is and I'm very excited. Yes, I'm really excited to hear from Audrey I think it's always great to hear what she's taken away from the conference so I'm excited to hear that again.

Jerry: Excellent, and I assume we'll be having awards for the Audrey Holland award and the Innovator award and those types of things that will happen sometime during the conference as well.

Gayle: Yes, that will be happening Friday afternoon at the end of the day, on Friday and I'm actually also really excited to announce that we will be having a new award, which is for outstanding student presentation.

Jerry: Outstanding! I'm really excited about that, you know I love student learning so terrific well that's just sounds like a terrific opportunity to reengage with all of our life participation colleagues and hopefully, retain as much of that close knit reunion feel as we can. Anything else out there that we should know about, as we look forward to the summit?

Gayle: Just that I'm really excited for it, and I hope lots of people will register and will really take advantage of all the different ways to interact.

Jerry: Agreed. So excited for that and I'm sure we'll have a busy few weeks leading up to the summit so I will definitely see you again soon. Okay, well, thank you Gayle for joining us and really appreciate the conversation.

Gayle: Thanks for having me.

Jerry: Absolutely, on behalf of Aphasia Access we want to thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and for access to our growing library of materials go to www.aphasiaaccess.org if you have an idea for a future podcast series or a topic email us at [email protected]. Thanks again for your ongoing support of Aphasia Access.

During this episode, Dr. Janet Patterson, Chief of the Audiology & Speech-Language Pathology Service at the VA Northern California Health Care System talks with Dr. Jerry Hoepner, Professor in the Department of Communication Sciences and Disorders, University of Wisconsin Eau Claire, and Marybeth Clark, M.S., speech-language pathologist at the Mayo Clinic in Eau Claire, about improving the lives of people with aphasia, both indoors and outdoors, through the Chippewa Valley Aphasia Camp. These Show Notes capture the experiences, recollections and wisdom of Marybeth and Jerry at camp.

In today's episode you will

• discover the philosophy of "Challenge by Choice" as a path to personal change and growth
• hear how activities that reveal competencies in persons with aphasia lead to transformations in many people – students, Aphasia Camp staff, individuals in the surrounding community, and of course the persons with aphasia themselves
• hear how the phrase, "We are all in this this together" takes on new meaning in the real life daily activities of Aphasia Camp.

Dr. Janet Patterson. In 1997, with colleagues Tom Hintgen and Tina Radichel, Marybeth founded the Chippewa Valley Aphasia Group. Shortly after that Jerry started volunteering with the group and a beautiful partnership began. One of the outcomes of this partnership is the Chippewa Valley Aphasia Camp, which started in 2004. Tom Sather, Michelle Knudsen, and Carin Keyes are also part of the Chippewa Valley Aphasia Camp.

The Chippewa Valley Aphasia Camp meets at Camp Manitou near New Auburn WI, and is a three-day retreat offering people with aphasia and their family members, activities and resources to increase social interaction and to facilitate communication success in daily life. Faculty and students from the University of Wisconsin at Eau Claire partner with staff from the Mayo Clinic Health System to offer communication activities nestled inside outdoor activities. This community partnership provides support for people with aphasia while providing a firsthand field experience for communication sciences and disorders students.

Janet. Welcome Marybeth and Jerry. The idea of experiencing communication in an outdoor environment is appealing to me, and I hope also to our listeners. I have several questions for you today as we explore your work in aphasia camp. Marybeth, let me start by saying how sorry I am that Aphasia Camp had to be canceled in 2020, and I hope it will be back in business, if not this year, then hopefully next year. Thinking back to 2004, how did the Chippewa Valley Aphasia Camp grow from your work with the aphasia group? What led you and your colleagues to envision a clinic camp program?

Marybeth Clark. Janet, back in 2004, it was our dream to be able to create a peaceful, relaxing retreat for individuals with aphasia and their significant others. Ultimately, we were thinking about providing the optimal aphasia friendly atmosphere. We were very much influenced by the Life Participation Approach to Aphasia. Tom Hintgen and I had traveled up to see the Aphasia Institute, the Pat Arato Aphasia Center, and we were also influenced by Lynn Fox's approach to conversational intervention. Those are the key drivers in our overall thinking of developing this relaxing weekend retreat. We were looking to create a participation-focused weekend experience that fosters socialization, and meaningful, authentic activities, within the backdrop of conversation, and at the same time instilling a sense of confidence within the activity participation, fostering a hopefulness, and promoting a sense of wellbeing. Jerry has heard me say this a number of times, but I was really fortunate when I was a young girl to work at Camp Manitou as a counselor, and then as a program director for seven years. Those experiences at camp were some of the most memorable experiences that I've had over my lifetime and I'm still in contact with those friends and counselors, and people I worked with. We talked about different venues and it all came back to, why not think about the YMCA Camp Manitou? It's a peaceful, relaxing atmosphere that has the opportunities for activity, and relationship building. It's quiet, serene, nestled in the woods, and yet has that rustic environment to it where people share cabins, there's a main lodge, there's a dining hall, etc. So, it just seemed to be the perfect, or at least in my mind, the perfect backdrop to provide this type of a weekend retreat.

Janet. It sounds beautiful. I can visualize it up in the northern woods. Jerry, what attracted you to begin volunteering in the Aphasia Camp, and kept you returning year after year?

Dr. Jerry Hoepner. As you said, in your introduction, Janet, I started volunteering with the Chippewa Valley Aphasia Group shortly after its inception and had the honor and the privilege of being mentored by Marybeth and by Tom Hintgen. They were really well versed in life participation-based aphasia interventions before that was even really a thing. They would bring in speakers, so I got to see John Lyons, I got to do an introduction for John Lyons. I got to see Audrey Holland. You know, when I was just in my formative years, they took us on a trip to Speaking Out the very first Speaking Out in Chicago, and I got to see people like Roberta Elman and Aura Kagan and Ellen Bernstein-Ellis. I was just hooked. Fast forward seven years, and Marybeth and Tom came back from Pat Arato, and Marybeth said, "We're going to do a camp", and I don't think there was ever any question for Tom Sather and I - we were just in. With that great mentorship and the opportunity to work alongside them all those years, it was just an easy decision. I grew up camping and going to camp and fishing all summer long with my dad and my mom, so it just made a perfect fit. What keeps me going, I think, is obviously the campers and the stories that we have about campers, the students and the outcomes that students have there. But what really, really keeps me going is the great colleagues that I've been able to work with over those years. Not only colleagues, but some of my closest friends, Marybeth and Tom and Tom Hintgen when he was still there, and Michelle, and Carin and everyone else at camp, and all of our community volunteers that continue to come year after year, and that includes my dad as one of the fishing experts. So that really explains why I'm a part of this and continue to just love this year after year.

Janet: I know you mentioned earlier, Jerry and Marybeth, that when you are actually in the camp for those three days they are exhausting, intensive and focused to get everything done. I imagine there must be such rewards for you at the end of those days. Listening to you describe why you are involved in the camp and how you got involved, I can understand your feeling of whatever you have to put into it is worth it at the other end, both for yourselves and for the campers. I imagine there are numerous logistical arrangements that have to be planned and managed to launch a venture as successful as your Aphasia Camp, and to keep it running year after year. Would you talk to us about the nuts and bolts of how you plan and implement Aphasia Camp? That is, what happens in advance and behind the scenes to keep the lights on, those nuts and bolt tight, and the s'mores at the ready?

Marybeth. Sure, back in 2004, the initial conversations that took place between myself, Tom Hintgen, Tom Sather, and Jerry involved meeting with the neurology division here at Mayo Clinic Health System, meeting with actually two of the neurologists here, and then describing the retreat weekend that we wanted to put together, talking them through some of the financial resources, and asking their permission to go ahead then to promote a weekend retreat that would be supported by Mayo. In order to make that happen we also needed to develop or find a partner that would be a primary stakeholder with the program moving forward. We decided that the best partnership for the development of camp would be the University of Wisconsin Eau Claire, primarily the Department of Communication Sciences and Disorders.

Some of the financial and people resources that were utilized here at Mayo included nurses from the neurosciences department, occupational therapists, physical therapists, chaplains, massage therapists, and at that time, four speech-language pathologists. We also had to get the permission of the Rehab Services Department in order to help finance the initial weekend of camp, which looking back now was not a difficult thing to do, because of the fact that we had already identified a partnership with the university and we had also had the conversation with the neurology department.

The initial planning that was involved with that first camp involved identifying the key stakeholders that we wanted involved with the camp. It was important for us to identify the key stakeholders that shared our philosophy in developing the camp. The idea that, "We are all in this together", was valued by all of us and we were looking to provide a sense of community, a sense of activity, a sense of relationship, in terms of developing that peaceful, relaxing weekend retreat with individuals with aphasia and their significant others.

The university partnership was actually the best partnership that we could have ever imagined, because of the fact that we had two speech pathologists that were teaching within the Department of Communication Sciences and Disorders. In addition to the fact that we knew that in order to build this relaxing, fun filled weekend for individuals, we would need a community to help us. We would need volunteers that would be trained in communicating with individuals with aphasia. We knew that we needed a lot of volunteers in order to make this happen. And the students at the university who were studying communication disorders, were our best allies in terms of putting this camp together.

In addition to the university development with the students, and the trainings that were involved with the students, we also put together an Aphasia Camp board, including the staff of the camp, the speech pathologists, a massage therapist here from Mayo, who actually was so invested in working with us that she turned out to be a staff person that has worked with us for over 10 years in putting this camp together. We also included individuals with aphasia and significant others to participate on the board. The reason we did that is because we wanted their expertise in developing a list of activities and events that would be most enjoyable to people with aphasia and their significant others. It was important for us to hear their voice and to put their recommendations and their ideas forward with camp.

Another key planning step is the budget or the financial piece. Putting together the staff of these experts, including physical therapists, occupational therapists, nurses, neuro nurses that could spend the entire weekend with us, a massage therapist, and chaplaincy required some additional financial resources. It was so positive for us to hear that back then and even up until most recently, that the Neurology Department or the Neurosciences Department helped us with the financing of some of these positions. The Rehab Services Department provided the occupational therapist, the physical therapist, and the time for speech- language pathologists. To be perfectly honest, we could not have put this camp together without that financial support, both from Mayo and from the University of Wisconsin Eau Claire.

In terms of working on the collaboration of the funding, some of the key items that we needed to look at were: the cost for a keynote speaker; the cost of some of the activities or the main events that we wanted to provide; the student fee, whether we were charging students or paying for the students to stay at camp and participate; the overall camp cost, meaning the rental of the cabins, the rental of the camp property, the rental of all of the buildings; and any resources that we may have used at camp, including boats, or drivers for boats, or kitchen cooks, maintenance team, what have you. Those are just some of the YMCA camp costs that we needed to consider.

And then there were the other resources, including people and activities, including golf experts, community volunteers, or what we call community experts. Those individuals that we've identified that share our philosophy, that are willing to invest time for this weekend, willing to learn a little bit about aphasia and the best techniques for conversation, and those individuals that are wanting to provide an experience that is challenging, yet support the individual at the same time in order to meet their goals or to help them to be successful. Some of those individuals included a golf expert, an artist, a musician, some of the university team from the Drama Department, other individuals were from the Technical Department, Nursing Department, and the Physical Education Department at the university. Also, there were community artists, including some of the musicians, and artists, and chefs within the community that we knew were willing to participate and willing to spend the weekend with us. At the same time, we also knew that we needed to give them some type of an honorarium, pay some mileage. Also, when you're looking at providing a three-day retreat, you also have to consider the fact that there's going to be meals provided throughout that entire time and when you invite the community experts, the community volunteers, we also have to have enough money set aside that's going to pay for their time at camp and for their meals at camp.

Other logistical planning centers around meeting with the YMCA camp director and working through logistics, including the actual lodging, the numbers of cabins that are needed, the number of cabins that could be used by student volunteers, the buildings that may have to be renovated a little in terms of helping us with accessibility, or even the consideration of technology with respect to Wi-Fi. And believe it or not, when you're in a woodsy-type setting, when you're trying to create this rustic, relaxing, beautiful weekend on a lake, it's difficult to have everything work from a technology perspective. There were many phone calls and many meetings just to kind of talk through some of the technology pieces and the Wi-Fi pieces, and if we had an activity that required an abundant resource of electricity, or an abundant number of computers. We had to make sure that we were in the right location in order for all of that to work. We also had to work through other logistics at camp, including some of the grounds areas. This camp was designed for children and so the pathways to and from cabins initially were like dirt pathways, lots of stone on the pathways. The pathways weren't lit very well, we had some areas of access down by the lake, or down near the boat dock in the marina, which were fine for children walking between these locations or accessing the dock or getting down to the marina, but we needed to work through some of the logistics in order to have people in wheelchairs or people who walked with canes to be able to access that area successfully as well. So that was just one of the major logistics that was involved in those initial planning years.

Another piece that has to be considered is the overall scheduling and planning of the activities. Once the aphasia camp board decides on their host of activities and events, we then need to match those activities with the best expert or lead individual for that specific activity, and then develop a schedule for that weekend. It's always been very important for us to have that schedule be balanced with enough rest and activity for the individual with aphasia. This has been something that we've learned over the years and something that we continue to check at all times when we're putting activities together. We want to make sure that there's that time for people just to sit down, relax, take a walk, or maybe just sit by the lake and rest for a little bit. So, we're always looking for that for that even balance. The planning of those activities is something that we take very seriously and involve our camp board members in putting that all together. We also take a serious look at providing activities that could be challenging for individuals, but at the same time, provide that key support that they need in order to be successful. So, we take time to look for resources that would be beneficial for people to be successful, whether it be the adaptive bikes, different types of archery tools, different types of rods for fishing, art equipment that will help someone be able to do some techniques one handed, different types of cooking utensils, or cooking resources that will help individuals be successful, any type of adaptive equipment that we may need for golf in terms of helping people. Those are just a few of the examples that we need to consider when we're putting this entire schedule together.

Through this entire planning process, we have a timeline that's proven to be fairly effective in order to keep us on task and making sure that we're meeting the list of activities, the list of schedules, that financial pieces are set, we've got payments that are ready to be made, etc. So, the timeline helps us to keep things moving along. As it gets closer to camp, we make sure that professionals are those experts or community volunteers are provided with the training, that they need to feel successful at leading these activities at camp. We also look then to have one lead speech pathologist and for our team, it's actually Michelle Knudson, who is incredibly organized. She has the eye for looking at a schedule, looking at a list of campers, looking at addresses, phone numbers, contact information, all their information, and then helping to put that together and organize all the communication that needs to go out to these campers in order to help them prepare for the weekend at camp. That task alone, the communication and all of that preparedness that goes into place for these campers in order to prepare for that weekend at camp, that action is something that takes a great deal of time. We actually do need one individual to manage all of that communication. I think Jerry could talk more about the student aspect in terms of the student trainings, and what we do to help them feel more successful and more prepared for camp as well.

Jerry: Yeah, I'm happy to weigh in on that. I think when we talk a little bit about a day in the life of Aphasia Camp, we'll talk a little bit about that process of involving students. But as you can see, there's a lot of details that go into running a successful camp and I just really want to highlight the importance of all of those partnerships that Marybeth talked about. The partnerships with the university and with all of those community experts, as she said, to really keep camp going. I was thinking as Marybeth was talking at the beginning, I wasn't actually full time at the university until maybe our fourth year at camp, so we didn't have a direct liaison, and we didn't necessarily have funding. So as Marybeth alluded to, in those first four years, students actually paid to go to camp, paid to work their butts off for an entire weekend, which is kind of remarkable if you think about it, that we found enough students that would come in and do that. We'll talk a little bit more later about how we did get funding in those sorts of things, and what opportunities that creates for students in terms of preparation and learning. But a lot of those early days were a little grassroots and you know, us heading over to the university, providing some trainings, and we've gotten pretty efficient and dialed in on how to deliver those trainings in a way that prepares the students to be effective, and so that we can choose students that are a good fit for the camp. Because not everyone is a good fit for that context, but we think we know which ones are.

Janet: As I listen to both of you talk, I started out with a beautiful vision of a bucolic area, and of a lake and trees, and then I began to hear all of things that have to go into creating this bucolic scene, and oh my goodness! You speak of a lot of excitement and cooperation, and positive things – I commend you for the efforts you have made over the years to keep this camp running. You mentioned a few obstacles you faced, such as training students. I am wondering what other obstacles you may have faced in starting the Chippewa Valley Aphasia Camp in 2004 and in keeping it vibrant for over 15 years now? I am thinking of things like permitting issues, or accessibility challenges, or liability constraints? How did you successfully overcome them?

Marybeth: Yeah, there were a number of obstacles. The relationship that Mayo has with the Eau Claire YMCA was also a benefit to us because of the fact that there were some events that Mayo at that time held up at this camp. So that ongoing relationship helped us in terms of working through some of the liability types of things you're mentioning or that permit piece. Mayo put together a waiver form that we used for all of our individuals attending camp. So that was one of the first pieces that needed to happen.

The second thing, or one of the most important things that we had to look at initially was, what was our process going to be if someone were to get injured at camp, or if someone needed medical attention, and that was something that was looked at by the key stakeholders, meaning, the YMCA, camp, Mayo, the university, and the camp board itself. We wanted to be able to have that process in place then in case something would happen to an individual either with aphasia, or just one of the family members. So, one of the things that was important from a Mayo perspective was to have that nurse up at camp the entire time or for that entire weekend. And so right from the beginning of our camp days, we've had a neuro nurse involved with us up at camp. The neurologist, the nurse, and the camp director then helped us work through the process, or that medical process, including that transportation, what happens when something happens at camp, how do you get that individual to the hospital, how do you access that medical team, etc. Those types of things needed to be worked out for that initial camp season. Thankfully, we've actually never had to use that process, but just knowing that we've had that nurse available at camp that we've got that process in place, has actually been really appreciated.

In terms of the camp itself, one of the things that we needed to talk through with our entire camp board is the fact that these cabins have 10 to 12 bunks in them, single bed bunks. They also have no indoor plumbing and no heat. So, thinking about camp on a fall weekend, which usually our camp is the second weekend in September, forced us to also think about the weather and how we were going to keep these people warm, how we were going to make sure that people were comfortable in these cabins with the fact that there was no indoor plumbing. And then also, in addition to that, work through any types of transportation issues that we might have in terms of getting people from their cabins down to the main lodge or assisting people in getting to meals in the dining hall. It was important to us to be able to work through all the accessibility issues so that no matter how much of a physical limitation an individual had, we would be able to provide an opportunity for these people to have a successful relaxing, enjoyable time at camp. And so, we worked with the camp director, and also with the physical therapists and the occupational therapists, and all of the speech pathologists to make sure that we had taken the necessary steps in terms of making the pathways more accessible to individuals. We needed to think about lighting the pathways in the evening, we needed to use those orange cones to make sure people would watch out for any of those roots or rocks or anything that may cause someone to stumble. We needed to work with the camp director in terms of additional docking that would need to be done to help individuals access pontoons or access boats safely. We also needed to talk with them about repairs that needed to happen within the dining hall in terms of making any type of steps that were too high for some individuals to access to make sure that we had some type of a ramp or some means for people to be able to go to those areas without any type of a risk.

We also made a decision early on to rent golf carts, a number of golf carts actually, to be used so that people wouldn't be fatigued, that they'd have easy access to those activities that might be off the grounds, including like an archery range, or to be able to go up to an area that was maybe a quarter mile away, in order to enjoy some biking, or to be able to take a ride on a pontoon, which, from their cabin, maybe was a tenth of a mile. So, it was important for us to be able to provide that means of transportation for them, that ease of access for them.

One of the things that we were surprised at finding out and I guess, from working up there, this wasn't too surprising for me. Our individual campers really didn't mind the fact that we had no indoor plumbing, or the fact that there wasn't heat within the cabins. Everyone who is signed up for camp or everyone that we had talked to about attending camp knew that this was a rustic environment. This wasn't a hotel. This was a place where you're going to have to carry a flashlight when you're out at night, or you may need to go to the other side of a building and into a wash house, if you wanted to use the bathroom. People didn't mind that, though. They were actually looking forward to that peaceful, relaxing weekend.

So yes, to your question, there were obstacles. But actually, with everyone working together, we were able to work through all of the issues without too much difficulty. And to be honest, without a whole lot of expense. The camp director and the Eau Claire YMCA were very, very interested in providing this type of an experience for these individuals, so they were on board to help in any way that they could.

Jerry: Marybeth if I can add, the YMCA over the years has really done a lot to increase accessibility, not just for our camp, but for all of the camps that happened in the summer with children as well. That's something that, you know, it's still a rustic camp, as you said. But that accessibility has really allowed us to do a lot of things with outdoor activities with sailing, and as you said, pontoons and fishing boats and kayaks and all of those sorts of things.

Marybeth: Yeah, exactly. Exactly.

Janet:: It sounds to me like you had this wonderful vision, and there were obstacles, but you must have had fun overcoming some of those obstacles. I can hear it in your voices. I bet it took a lot of s'mores though and a lot of discussion during those numerous meetings.

Jerry: And a lot of coffee.

Janet: A lot of coffee is right! Tell us about a day in the life of the Chippewa Valley Aphasia Camp. What is camp life like for you, for your staff, or your campers, and for the students?

Jerry: Marybeth, maybe I'll start with the students if that's okay.

Marybeth: Yeah, that would be great.

Jerry: Students really begin this process months in advance, and I think Marybeth was alluding to this earlier. So, each spring around late March, early April, we put out a call for student volunteers. And typically, we get about twice the number of applicants as we have spots. So, it's a pretty competitive kind of position. Most of our students are from communication sciences and disorders, but we always have a few spots saved for some other disciplines as well. We have a kinesiology program that has pre occupational therapy, pre physical therapy, so we typically have one or two students there. We get some students from social work. We haven't had students apply from nursing, but that's always an option as well. We've even had students apply from computer science and they're a really great asset, given all of the technology it takes to carry out some of the things that camp. In fact, one of them has been with us, I don't know 10 years plus at this point, and really a part of our staff at this point.

When students make their applications, we read through their essays and we try to get a sense, as I said, of whether they'll be a good fit for camp and some are and some are just not quite the right fit for camp. Those accepted go through an online training module, and then we have three face to face trainings as well. In two of the trainings, they learn a little bit about a day in the life at camp actually. Then we train supported conversation techniques. Those meetings are each two hours long. Then we have a third meeting, another two-hour meeting, just about a week before camp, really focused on logistics, last minute planning and their roles. We talk a little bit about their talents and how they might bring those talents like singing, playing a guitar playing the drums, those sorts of things, at camp, to the campfire, and so forth. We're always looking for a few crafty people to help out with things that we do in terms of prep in the evenings and so forth. Some of them have projects straight up to the time of camp, to prepare things for different sessions, and so forth.

Once they're at camp, they are working hard. From 6:30 or 7:00 o'clock in the morning, they're up helping prepare breakfast and then they have a full day of interacting with those campers as well. Their roles are really to help engage people in meaningful activity, and to kind of transparently, almost like they're not there, provide communication ramps and supports that allow people to communicate within those activities. It's really fun to see a well-trained and a terrific volunteer just kind of seamlessly providing those supports while the person is just engaged in archery, or making a craft, or whatever the activity happens to be. Because of that, both our students and our campers really say that it just feels really natural. Campers often say that they feel like they don't recognize that they have aphasia for a moment or two, which is obviously our big goal for the for the camp.

We don't assign students to specific campers, but we do assign them to sessions, because we want to be able to balance the number of campers with those potential supports. So, students will, just like campers, go from session to session, and engage in the session. We don't want them just standing there but be prepared to kind of step in at any given moment, to provide those supports when they're necessary. We have an expression for campers that everything at camp is "Challenge by Choice". We want people to push themselves, but not to the point where they're uncomfortable. And for the most part, that's true for students too. We tease them that a few students get assigned to the Polar Plunge on Sunday morning, and that's kind of challenge by, you know, force, but they're really good sports, and they're always good at jumping into that ice-cold water mid-September. So that's a pretty typical day for them.

A couple of other things along with interacting with campers and their partners and all of the great conversations that happen within sessions or just sitting at the campfire, each do a rotation of kitchen duty, and they help out with all of the other logistic tasks behind the scene in terms of setting up for sessions and so forth. And again, they do it in a way that is really transparent, and you can't even really recognize sometimes that they're providing those supports.

Every evening after we close down the campfire, and we have these great campfires singing and telling stories and interacting with each other. After that's all done, the students make sure that the campers are returned to their cabins. And then we keep them busy for a little bit longer. So, we have them do individual reflections and video reflections and then we get together in small groups or pods, where we kind of debrief the day, what went well, what could have gone better, what their goals are for that next day. And then at the end of the entire weekend, they stay around to clean up the camp, we do another final debriefing, and then they're still actually not off the hook yet. They help us haul materials back to the university and back to Mayo. And that ends up being late Sunday afternoon by the time that they're returned. We see this real transformation for some of those students and you know just what that experience brings them. And many of the students will volunteer year after year. We have some of those students who have kind of a veteran experience and can be mentors to the newer students as well.

Janet: I think I'd like to be a volunteer at your camp. It sounds fun, even the Polar Plunge.

Marybeth: Yes, I was just going to add that the camp staff then handles some of the logistics early in the morning before the campers rise. Some of that early activity participation includes unloading the canoes from the racks, getting life jackets out, organizing paddles, getting the adaptive gloves ready that need to be used for canoe paddling, or getting those special adaptive pieces that we use on the recumbent bikes so that individuals that have some physical limitations are also able to participate in in biking. We're making sure that we've got the archery equipment where it's supposed to be, that we have the adaptive pieces set up, that we've got the rods with the reels for fishing, and the necessary gloves that need to be used for fishing. We also have some of our students actually take those golf carts around in the morning prior to breakfast, making sure that if people need rides down to the dining hall, early to have that that cup of coffee, or to visit with people, or just to go for a little walk in the morning. We then have students ready to provide that service to our campers.

One of the things that I wanted to mention in terms of training with our students is we continually tell them that the attitude of "Whatever it takes", and "How can I help", is what we're promoting at camp. It's just amazing to see from the start of camp, and watching the students in terms of providing that kindness, that genuine care to foster that sense of enjoyment and that relaxation, for those campers is seen early on, and then just flourishes even more, and it's something that's contagious. We see all of our students doing that throughout the entire weekend. We hear from our campers, we hear from those individuals that they've never experienced anything quite so kind and caring and where they felt like people were always willing to help them.

We also then check in with our community volunteers are those experts coming up for the day to make sure that they've got everything they need, that their activity or their session is organized and ready to go. We have one individual staff person that is basically on standby and just oversees all of the different activities, checking to make sure that if there's something that is needed, from a technology standpoint, or some device that's needed by another camper, or an instructor that may need an additional massage chair, that all of those little things are taken care of by this individual who kind of oversees everything. Then as Jerry mentioned, we just go from activity to activity and check our schedules. We make sure that if campers are interested in switching an activity or they maybe see something else that looks a little bit more pleasing to them than their original activity, then we also help to make that happen so that campers are able to participate in activities that that they're driven to and that they're really motivated to attend.

Janet: It sounds like you and your staff, your students and campers are busy from sunup to sundown, and even past in your campfires. I bet everyone goes to sleep exhausted at night but very happy with their days. I can just see it and sense it in your voices as you are describing the enthusiasm you have for camp. How do you secure funding to support your camp every year?

Marybeth: That goes back again to Mayo, who is the primary funding source, but also to our partnership with the university. The university provides extensive funding in terms of the student's ability to participate at camp because to be perfectly honest, Mayo would not be able to fund the entire camp weekend for individuals without the support of the university providing that financial support for students, and also providing some of the financial support for a keynote speaker we may have, or one of the main events that we may want to provide. We've also been privileged, actually, to receive some donations by individual campers. Over the years, we've received financial donations, in addition to actually receiving a couple of recumbent bikes from campers that have wanted us to provide biking to individuals, and knew that we didn't have all those recumbent bikes that had the bells and whistles that were most appreciated by individuals with some physical limitations. We were so very, very pleased to receive a couple of these recumbent bikes. In addition, I have to say that the speech pathology staff and some of these other key members on our team have donated hours and hours of their time. That's not, you know, a financial piece, but that's definitely another piece of putting this entire camp together, the amount of talent and time, in addition to the money that's needed.

Jerry: I can speak a little bit about some of the specifics at the university as well. So, as I mentioned, for the first few years, I wasn't employed at the university. So, my first year in employment at the university, I applied for what's called a UW Systems Differential Tuition Grant and I somehow was fully funded for five years. Then we had that renewable for a number of additional years. So, we had three years of renewal, and then our state went through some difficult financial times, so we lost that funding. Just as we lost that funding, we had a fairly new dean, who is fabulous, supports all of the work that we do, and she secured funding for long term. Our college actually funds all of the students attending camp, travel time, time for their training, the food for their training, the lodging at camp, the food at camp, and then, as Marybeth said, some additional funds for keynote speakers or other activities at camp. Also funding for staff, for Tom Sather and myself, for all of the development time for camp, and then for our time at Camp as well. We've been really fortunate to be in that position of being well funded between Mayo and the university.

Janet: That's good to know. Marybeth, I am reminded of what you said earlier, that you were all in this together, and it does sound like that through the years you've shown the positive effect you can have on the students and the campers, and that encourages people to give you additional funding. It is great that you have been able to do this and sustain the amount of funding.

Jerry and Marybeth, I imagine that despite your best planning, there have been some hold-your-breath moments with campers in camp life. Will you tell our listeners about some of those moments and how you worked through the challenges they may have posed?

Jerry: Do you want to start, Marybeth?

Marybeth: I'm not sure if you and I have the same thoughts here, but when I thought back on some challenges that we've that we've gone through, two of the things that come to mind quickly is ,we had one camper that that fell in one of our wash houses when they were getting ready in the morning, washing up and using the bathroom. Now, it might not sound like a big thing, but when you are hosting individuals at camp that have had strokes, or individuals that have had strokes and seizures, in addition to maybe a few other medical comorbidities, you are always thinking that if someone may fall, or have a seizure, or have some type of an event when they're out on the lake in a boat, or on a pontoon or sailboat canoe, what have you that you're always concerned as to how you're going to handle that situation. And fortunately, we've had only two situations where, in one case, an individual fell while he was getting ready in the morning while he was in the wash house. Now these wash houses have cement floors, so the individual did fall. He did hit his head, not hard, according to his father, but you know, he did hit his head and that was serious. We contacted the nurse right away, she came, she oversaw the situation, and talked with his father. He was watched carefully and per his and his father's decision, he was feeling fine, he was doing all right, they wanted to stay for the day and just see how things went. That situation turned out fine. He was okay, and we followed up with him the next day after him and his father had left at the end of camp and he was totally fine. But those things can be really scary, especially when you're out in the wilderness, and then you have something happen. And, yes, you've got trained people there, but it's not a hospital and you're not in a hotel where you can access things really quickly, either. So that's just, one of the things that I can recall that was actually challenging. And Jerry, maybe you have other ideas.

Jerry: I was thinking of a couple of stories, I think it might have been our second year at camp, we had a lady there who was actually maybe only six months out of her stroke, something like that. One morning, she just decided to go for a little walk on her own and I remember kind of panicking looking around for her. She was just down the road, you know, a few 100 yards or something like that, didn't think anything of it, but got our blood pressure up a little bit. Probably the next best story is one, I think Marybeth and Tom Sather and I were involved in. We had this really cool ceremony one year where we had floating lanterns with candles in them, and we sent away our troubles and our goals for the next year, those kinds of things. If you've seen the floating candles, it's kind of like that, but you send them out on the lake. So, these candles went out into the lake and it was just beautiful, and we have just the most beautiful pictures of all of these candles floating off into the distance. Then all of the campers left, and it was great. About that time the wind picked up and blew all the candles directly to the shore, along the pine needles and so forth. Tom Sather and I scurried to the boat, and we had our net, and we're scooping up all of the candles and trying to put them all out before they hit the shoreline and started camp on fire, which fortunately we averted. But that was definitely a moment that it went from the most tranquil, beautiful setting to oh my gosh, we're going to burn down the camp. But we did not.

Janet: No contingency plan for that one, just get in the boat and go quickly! I'm sure that there are many more heartwarming stories that you have from Aphasia Camp than hold-your-breath moments. Tell us about some of those heartwarming stories.

Marybeth: Sure, I can start. There's one particular lady who has come to our camp. I think she's come to our camp for 12 years now with her husband. She's a musician who played in a group when she was a young woman, sort of did that on the side sang, played the guitar, and I'm not sure if she did keyboard too. She had a stroke and had a non-fluent type of aphasia. She communicated with few words, but her facial expression and her gestures said it all. We typically invite different types of artists to camp every year, because we really want to provide that type of activity to our individuals. And we know based upon that feedback that we get from the individuals that attend camp, that many of them do appreciate art in the various arts. So, this one particular year, we invited an artist, a very well-known artist, who came and did some pictures of natural still life and a few other things, but primarily this still life was something in his repertoire. This lady attended the class and she was so engaged. and I think many of our listeners would actually say that she looked as if she was in flow, when she was participating in art. To watch people come around behind her or to come up and look at her painting when she was finished, was breathtaking. Because here's this woman who had very, very few words, who had some physical limitations, who was using her non dominant hand, and painted this beautiful, beautiful picture. For her husband to see her painting and to see her participate was simply amazing. He was so taken with her artistic talent. That weekend after they left our camp, I received a call from him, I think it was the Monday following camp. He told he told me that he was so happy to see her participating and painting and enjoying it so much that on their way home from camp, they stopped at an art supply store and he bought her an easel. He bought her all these paints, brushes, different types of paper and boards that she could work from. I don't think I'll ever, ever forget that image of seeing her paint. And then also to hear his comments about how appreciative he was that we could help to reveal those skills.

Janet: Moments like that make it all worth it, don't they? And Jerry, I'm sure you have a heartwarming story as well.

Jerry: I was thinking as Marybeth was talking, I have hundreds of snapshots in my mind. And what Marybeth said about revealing competence and revealing what that person can still do through those activities at camp, a lot of times it's very much like that, where they didn't realize what capabilities they had until they did it again. I'm just going to walk you through a few of them. I happen to run the woodworking class at camp because that's one of my skills. I've seen people who are carpenters and woodworkers doing this for the first time since their stroke years later. I know Tom Sather is one of our resident golfers and we've seen golfers swing their club for the first time since their stroke. Often one of the things that they'll say is something like, "Why haven't I been doing this for the last five years?", "I didn't do it again until I was at camp." A couple of years ago I had a young woman with aphasia, catch a 44-inch muskie on a Sunday morning, just before our closing sessions We did a little scrambling but were able to kind of incorporate that in the slideshow, and just the joy and the pride on her face when that came up on the screen, and everyone just kind of said, "What?" She had this massive fish and was holding it in her arms. We've done that by having campers lead sessions. We have a guy who leads crossbow sessions, and another one who leads cooking classes, and another lady who leads crafting and beading sessions and shows her adaptive equipment that she uses. We have another that makes candles and makes cards. We even had a partner who is a printer, and she printed all of our t-shirts, but kind of personalized t-shirts for all of the campers right at camp. That was pretty cool. So those are the kinds of things that really, really stick out to me. And then I have got to say, our students, just so many fabulous students who have this, the only thing I can say is just this remarkable transformation of understanding what it's like to live with aphasia. And what it takes to support that individual and whether they go on to serve people with aphasia, or children, or whatever it is, they've got that glimmer in their eye that says they care about that human being. And that's really powerful.

Janet: I can imagine. Two words struck me in listening to the two of you talk about these heartwarming stories. One phrase is revealing competencies; that you are uncovering what has been there all along and are helping people understand how to do what they want to do in a different way or a new way. The second word that you said is transform. Students are being transformed; campers are being transformed; even you as the staff are being transformed in your way of thinking. It is your camp activities that are doing that. I think it is a wonderful thing you are doing, and I can certainly see that excitement and the transformation in you as you help the campers reveal their competencies.

For our listeners who are thinking about starting an aphasia camp, well, that is whenever we can, again gather in person, what advice or suggestions or lessons learned, can you share with them?

Marybeth: I think one of the very important things that people will want to consider is to take time to select the key stakeholders that share that similar philosophy. I think identifying those partnerships is critical and crucial to the success of whatever type of retreat or event that you want to provide. Secondly, I think you want to be focused on providing that atmosphere of delight. And always thinking about that, "whatever it takes" approach when developing your schedule of activities or your schedule for the weekend. And thirdly, I also totally believe that it's important to listen and involve the individuals with aphasia, and their significant others in the development and the planning of everything. I think they need to be involved from the get-go. They need to be involved in those early stages, so that we understand, we learn from them, in terms of what's going to help the most, what they're looking for their goals, their ideas, things that they want to be challenged with, what have you. I believe those are the most important things.

Jerry: Agreed. I would say just surround yourself, and Marybeth talked about this too, surround yourself with good colleagues and friends, people that you're going to want to be around for 16 hours a day, 17 18 hours a day while you're at camp, plus all the prep time. We stay up all night long practically. To have good people around you is important. Find a good network of community volunteers. We talk about this ripple effect that it creates; you know, they talk to their friends and we get people involved. We have community volunteers who plan their vacation time around aphasia camp so they can come. Last year during the pandemic I had people call me and say, "I'm so sad that we're not having camp, let me know about 2021, I want to be there." Those people just come back year after year. Recruitment and training of students is important. We specifically seek out students for whom this is going to be a turning point kind of experience. Some of them are ones that may not be as strong academically, but really may excel clinically, or in their interactions. We think for them, it's an opportunity; we still get our pick of a lot of really terrific, strong students, but we always seek out a few students for whom this is just going to change them. Then I would just say, connect with other camps and talk to other people at other camps.

Janet: Thank you both or those wonderful insights. Jerry, you mentioned a ripple effect, in so many ways. You said earlier in our interview today about the changes that happened at the YMCA camp as a result of beginning to host people with aphasia. That is a ripple effect too, of the changes that went out into the community that you have supported, the physical changes that happened to the camp, the changes in thinking people have made by welcoming people who have physical disabilities and communication disabilities. Good job for all of you, for the work you have done and the connections you have made, and the lessons you have shared with all of us.

As we close this conversation, I would like to compliment you on an amazing and vibrant program, and to ask each you to recount one of your favorite camp stories from among the many, many that you may have. How about you going first Marybeth?

Marybeth: Okay, two things, and I'll do this really quickly. I think the expressions on the faces of our camp planning team, when I bring up some of the crazy ideas and crazy experiences that I've gone through in my early days as being a camp counselor or camp program director is exciting for me to see. That whole idea of the of the Polar Plunge, or taking individuals out sailing and actually having people with aphasia being the person that's leading the sailing or in charge of sailing the boats, taking people on long hikes into the woods where it's maybe a half mile and the terrain isn't great. Seeing the expression and then also seeing that next expression, which is "Yeah, right, why can't we do that? Of course, we can do that. We can do anything." I think that's one of the really cool things when I think about camp. The other vision or image that comes to my mind is one where we help people to be able to ride bicycle by riding these recumbent bikes. For some people who've never been on a recumbent bike or have never been on a bike since their stroke, to watch them going down the road whizzing by, pedaling because it works with the type of adaptive equipment we have, is totally amazing. Totally amazing.

Jerry: Yeah, I've got two big things that come to mind. One is just probably my favorite thing at camp, and this is saying a lot given how much I love the interactions with campers, but this is with my friends and colleagues when we're up at 3:30 or 4:00 o'clock in the morning eating Circus Peanuts and drinking coffee and waiting for the hour and a half of sleep that we're going to get before the next day. We goof around, we have fun, and have a lot to do, but that will always be one of my favorites. I think one of the other things is the closing ceremonies that we have where we give camper commissions. Essentially, that's their charge for the next year; "Right. So, here's what we saw you doing at camp. This is the change that we've seen in you and the activities that you undertook and the accomplishments that you made. And this is your charge for next year, what we hope to see from you." I think that's really powerful. I just want to mention one other thing for the listeners. We have a number of publications, including one that came out this past week, and we'll make those available if people are interested as well.

Janet: Thank you both, Marybeth and Jerry, for your inspiring stories, and the practical guidance from your experience at the Chippewa Valley Aphasia Camp. I have said this a couple of times today – I want to be a volunteer there, it sounds like so much fun, even if I would be up until 4:00 in the morning eating Circus Peanuts and Coffee??? Probably not the best diet, but it works at camp, I guess.

Jerry: Sure does!

Janet: I appreciate both of you taking the time to talk with me today. This is Janet Patterson, speaking from the VA in Northern California, and along with Aphasia Access, I would like to thank my guests, Marybeth Clark and Jerry Hoepner for sharing their knowledge, wisdom, experience and stories as leaders, campers and chief s'more makers at the Chippewa Valley Aphasia Camp. You can find references, links, and the Show Notes from today's podcast interview with Marybeth Clark and Jerry Hoepner at Aphasia Access under the resource tab on the homepage.

References and Resources for the Chippewa Valley Aphasia Camp

https://www.uwec.edu/academics/college-education-human-sciences/departments-programs/communication-sciences-disorders/about/community-resources/aphasia-camp/

https://www.uwec.edu/news/academics/hands-on-learning-provides-support-to-aphasia-community-686/

https://www.mayoclinichealthsystem.org/locations/eau-claire/services-and-treatments/neurology/aphasia-camp

Jerry Hoepner, a faculty member in the department of Communication Sciences and Disorders at the University of Wisconsin – Eau Claire. I am privileged to introduce today's guest, Dr. Sarah Northcott. We are fortunate to have a conversation about her work and the application of solutions focused brief therapy and psychological supports to individuals with aphasia.

Dr. Sarah Northcott is a Senior Lecturer in Speech and Language Therapy at both the University of East Anglia, UK, and City, University of London, UK. Her research interests lie in exploring ways to support the emotional and social wellbeing of people living with stroke and aphasia. In 2016 she received the UK Stroke Association Jack and Averil (Mansfield) Bradley Fellowship Award for Stroke Research, which enabled her to lead the SOFIA Trial (Solution Focused brief therapy In post-stroke Aphasia), a feasibility wait-list controlled trial. She also led the qualitative evaluation on the SUPERB Trial, investigating peer befriending for people with aphasia, also funded by the UK Stroke Association.

Take aways:

• Social networks are wonderful for people with aphasia after their stroke, and these social networks often predict outcomes more than the severity of the stroke. (9:30)
• It is crucial that speech language therapists receive training on this topic so they feel comfortable stepping into those moments when there is a need for psychosocial support, or at least recognize when they need extra support in doing so.
• Solution focused brief therapy is designed to help people build change.
• With training, it is important that speech therapists transition out of the "fixer mindset" and the thought that they need to fix everything, in order to successfully provide this psychosocial support.
• Paper and pen, or objects from the individual's environment that they are comfortable using, are the most effective visual communication methods when going into these unpredictable conversations.
• Always make the most of people's strengths and talents and focus on what is already going well.
• The client is the expert in their own life!

Jerry: Greetings from across the pond, Sarah. I'd say good morning, but perhaps good afternoon for you. Really nice talk with you today.

Sarah: It's lovely, thank you very much to be inviting me as part of your podcast series. That was really lovely to be here.

Jerry: Absolutely, our privilege. I'm really excited to dive into this important conversation again, a topic near and dear to my heart as well. And before we get started, can you share just a little bit about your mentors and collaborators and kind of how you found your path, so to speak.

Sarah: So, I first trained as a speech therapist about 20 years ago now, and it was when I was starting to work with adults who had a stroke for the first time, I guess, I started to realize how difficult it was to, how your life can be turned upside down by having the aphasia and how isolated some of the people I was working with were as well. And it was around that time that Katerina Hilari from City University contacted me and asked me if I'd like to do an MSC looking at social support for people with chronic aphasia. And that kind of tied in well with what I was noticing in my clinical work. And I think I was really struck by that project, I found it really exciting to be working on that project. And it also felt important because I could sort of see the clinical relevance from the work I was doing. I guess I'm very grateful to Katerina, because she sort of opened that whole door for me. And it was really Katerina, who encouraged me to do the PhD. the PhD was looking, taking that work forward, looking more generally at social support after a stroke. So, for people with and without aphasia, and what social support really mattered to them, what value it had, what tends to happen to their friendships. And yeah, I feel very lucky that she was had a lot of belief in me and really encouraged me to do that. And after my PhD, she was still there for me. So, I have quite a difficult season, because when you finish your PhD to know quite what to do next. And yeah, she's always been incredibly supportive and has been really there for me sort of had a belief that the work we were doing was important and valuable, and that I had something to contribute. So that was, yes, she's like, I really respect her academic judgments. And she's been a really big part of my life, I guess, the 15 years that we've done some lovely work together. And that's been really rewarding. And I guess more recently with the SOFIA fellowship project I've had, as well as Katerina, three other supervisors, so a mental health nurse, and two psychologists and I think, I there was real value for me and being supervised by people who weren't speech therapists. So, I really learned from those with different perspectives and what they were bringing to it. So, one of them Shirley Thomas, who sort of is leading the column base trial campaign for activation therapy for people with aphasia. So of course, she brought a huge wealth of knowledge about running trials with people with aphasia, which is not the easiest thing to do, assessing him for his knowledge about mental health nursing. And I found that really helpful to get those perspectives and put that into the research. And so, many lovely people to work with. I don't think I've ever felt alone with it. And if anyone out there is a speech therapist or speech therapy student and wondering about research, I would say, it's really important to have a team around you because it's not always the easiest thing. There are not backs when you get rejections and then things don't go to plan. So, have people around you who believe in you, and will support you through that and support you not just for the academic side, but sort of quite holistically as well. So, I think I've been, I've been very lucky with the support I've had around. And I've certainly I've not done any of this work alone, it's always been a very much a team thing. And I'm very grateful for the team I've had around me. So, if anyone of my supervisors have happened to listen to this, a big thank you to all of them.

Jerry: That's really well said in terms of the importance of just having that team that work around you, for sure. And really a powerful story about Katerina reaching out to you, that must have just been really a great moment and ongoing moments to encourage you with your PhD and beyond. So, I agree some definitely lovely work that two of you and others have done together regarding psychosocial effects following aphasia. So, I just love that whole body of work.

Sarah: Yeah, and I feel very grateful to the school that everyone has given me with that. And I would say that again, I guess that's another thing to pull out of that if someone's thinking about whether to go into research, it is so important to do research in an area that you're quite passionate about, and you really believe in because it's tough doing research. So, I think you have to have a real motivation. And I think that's kind of going as well as that as a support team to have a kind of belief in the projects.

Jerry: Absolutely. And it's really evident in the work that you do and the connections that you have to real individuals with aphasia. So, it definitely shows through, and again, those interdisciplinary connections you mentioned, Shirley Thomas, and she's done so much work in this area. And that's been powerful.

Sarah: You know and I think I think it's been really interesting to work with a psychologist coming from a different background and a different perspective on research. And I've definitely learned loads from them, it's been really helpful.

Jerry: But an excellent place to start. Just to kind of roll back the clocks a little bit, I think many of our listeners are familiar with your work on the stroke social network scale, and the social networks and supports for people with chronic aphasia that you've done with Katerina Hilari. So, I think that is a really nice place to start in terms of just thinking of where you've come from. In the 2018 article in the International Journal of Language and Communication Disorders, you identified several barriers to accessing appropriate psychological support for individuals with aphasia. And likewise, in your 2017 article, in that same journal, you found that most speech language pathologists or in the UK, speech language therapists, lack the confidence to implement the appropriate psychological supports for people with aphasia. Of course, that's really been shown by --- and colleagues all around the world, but it's just such a prominent issue. Can you talk a little bit about how all of this kind of led into your current research regarding solution focus brief therapy?

Sarah: Of course, and thank you for reading these papers.

Jerry: Absolutely.

Sarah: So yeah, do you want me to take it back from the beginning for the sort of social support stroke social network scale and then work from there?

Jerry: Sure, that'd be fine. That'd be great.

Sarah: Yes, in my PhD I was looking at social support, and one of the outputs of that was the stroke social network scale. And it is something that Katerina's done recently is set up a repository of different resources from City University, so just if people are interested in some of the work we've done at City to go to the current website. And you'll find it there, you'll find that scale there, you'll find her cycle 39 scale, and we're trying to build up that repository. So, that's just a nice resource for anyone in the world to tap into. And I think, yes, in my PhD reverb, we're looking at what happens over time. And it was one of the themes that came through was that social networks are quite wonderful after a stroke. And they seem to be particularly vulnerable for people with aphasia. And that seems to be a really predictive factor of who's going to maintain a strong social network, a stronger factor, even then stroke severity or disabilities. So, that was a quite striking finding. And I think I felt very privileged in my PhD because part of it was doing questionnaires of people over time, but then also doing qualitative interviews of people around about a year post stroke, so I had a year of my life walking around London doing these interviews of people and listening to people's stories. People are very generous with their times to share how they found the stroke, what was important to them? And yeah, and exploring with them all the value of connection and what that meant to them after the stroke. And also, we could see from the quantitative data that people were losing friends. We didn't mean, there was a chance to explore with people what's happening, what does this mean to you? And it was, you know, so many reasons that people gave of why they were seeing their friends less, you know, they weren't going to same activities that they used to. So, they didn't see those friends in those contexts anymore. They were exhausted, and they didn't have the energy to initiate contact. With a disability, they were housebound, and how you host and your lack of reciprocity there. And of course, the phase, you're in a phase of disrupting the dynamics of friendships, and a big theme that came through as well, there was the close link between this sense of feeling a little bit withdrawn and cutting us off a little bit. So, the link between mood and friendship loss, and it's like a vicious cycle, I guess, of becoming withdrawn, not going out, and then getting low in mood and then becoming even more withdrawn. And I think some of those stories affected me quite a lot. And at the end of my PhD, I was wanting to say, well, what intervention could we have that could break that vicious cycle and make it more of a virtuous cycle? To encourage people to, or what do people need to be able to feel they can start to reengage again and start to live the life they want to live with the stroke and aphasia? So, I think that was the motivation for me at the end of the PhD to think it's quite a big thing to go from observation research into intervention research. I don't think I've quite realized actually how big a thing it was and how much I was undertaking it as a way of learning. But I think that was my motivation to start thinking about interventions. And so, this was five years ago. And at that point, there was very little in terms of the research evidence base for effective psychological therapy for people with aphasia. And Shirley's lovely studies, comm study, I wasn't the basis to her lovely systematic review quite recently. And yes, its basis is still pretty thin and has some really nice research coming through. So, there's all the lovely stuff in Australia and in the world, but it's still, I would say, I was surprised how many psychological stroke research studies were excluding people with aphasia on the grounds of their language disability. So that was quite motivating for me to think, as a speech language therapist, what can be our role? What therapies might work well, so that was nice to start playing. And then as you say, before I went into doing the solution focused brief therapy trial, I did some work, listening to speech therapists. So, we did an online survey, and then we did some focus group analysis and had an experience trusting the psychological well-being of people with aphasia. And, yeah, that was, so it was really striking that speech therapists, they really want to do their best. And they were doing some lovely listening, and they're setting up groups, and they were telling us all the things that they were doing. But there was a sense of, actually, this is not an area where you feel confident. And this is not an area that we feel particularly more trained or supported in. And we have this sort of unease that if we spend a session listening to someone's distress, should we spend that session, doing language goals, you know, was that the right use of our time. And that particularly felt uneasy when they felt that it was all on their shoulders. And if they got out of that debt, they had nowhere to turn to for extra support, when they felt that the management and their team have to be valuing that work, supporting them in that work, where they didn't feel they had the training. They were time pressured, and conversely, in teams where they felt that there was that sense of holistic team culture, and it was valid, it was easier if they had some training. And particularly they had such a support. So, I think what might work particularly nicely was whether there was a mental health professional psychologist within the team, with a kind of opened door policy who they felt they could knock on the door of and ask them for advice as they went along. And if they started to go down to their desk, they could do joint work together or handover. And where they felt they could get informed advice and support with it. That seems quite enabling to speech therapists to feel that this is something that they could address and feel comfortable addressing.

Jerry: Wow, that's terrific. I want to go back to just a couple of things that you said. That idea that social networks predict outcomes more than stroke severity, and then that cycle between changes in mood and withdrawal and how that kind of feeds itself. And I think that last point, when you were talking about Speech Language therapists, that training, right, just not feeling comfortable, but when they get that training, they feel more comfortable and are able to step into those moments when there's a need for that psychosocial support, or at least recognize when they need outside help as well. So.

Sarah: Yes, I think it was quite interesting for people was just saying one of the things that they got from training and experience was, when they complete it, when they were newly qualified, they had the sense that they needed to fix everything, there needed to be solution and quite anxious with situations where they couldn't fix it. And with training they kind of reversed this around to thinking sometimes it's really very good just to be there with someone or just to listen and that's valuable in itself. And they thought they had some skills to sit back on enabling them to do that. So, listening and being there with someone when they're distracted, they felt more comfortable out on their own.

Jerry: Yeah, I agree. And making that shift out of that fixer mindset I think is a really important part of providing that type of support, for sure. Absolutely. So terrific introduction to this. Can you talk a little bit about why speech language therapists should consider the psychosocial impact of living with aphasia and kind of what their roles are in terms of addressing psychological well-being, psychosocial well- being?

Sarah: Sure. So, what came through in the focus group project was the sense that often people with aphasia, that speech therapists are meeting, have sort of been trapped in this world of aphasia, and they got a real value from having a speech therapist facilitate them, explaining what it was like to be them, what it was like to live with the aphasia. And the speech therapists have skills of listening and facilitation, and that's really valuable. So, I would say that for someone with aphasia who has more severe distress, more severe mental health issues, I think speech therapists have a role in facilitating and accessing mental health professionals as well. And what we found in the focus group project was speech therapists we spoke to were concerned that people with more severe aphasia, it was very hard for them to access psychological health and mental health professionals who understandably found it very challenging to adjust their psychological therapies for someone with more severe aphasia. And I think also what we found in the UK, and I don't know if this translates to the US, but in UK near the stroke, so in your acute stage, just post discharge from hospital, psychologists working in those teams more like, sometimes like it was just like in ASD so there was quite spectrum where the speech therapist was very disappointed that those people with aphasia aren't suitable candidates for therapy because of their language disability. But there are also psychologists in this stroke special services who are skilled working with aphasia, we're happy to be joint working with the speech therapists, we're happy to work with the family members around the person with aphasia. But when the people with aphasia went into the mainstream mental health services, then there were more issues around mental health professionals struggling with the aphasia. So, I think in that situation, the speech therapists have a real role in supporting someone with aphasia and accessing those services. So, I can completely see that as a speech therapist listening here thinking like not really wanting to go and get lots of specialist training and delivering pre psychological therapies is not that I see my world what I want to do, but I would say that it is important for speech therapists to not undervalue their own skills of listening and what that can be for someone with aphasia, or underestimate that we can have a sort of bridging role and helping people access psychological services. And another thing I'd add to that is that, you know, really listening to someone who is having a hard time, it's not easy, and I have some sympathy with speech therapists who are starting to learn to project, and starting to feel anxious. And I would say that it's important to feel supported in that work and so there's someone that you can go to, and people talk about peer support a lot and how valuable that was. But to find some way of feeling reassured that you're doing the right thing, sometimes as well, that it is the right thing to sit there with someone who are distressed. I would say, I'm a really big believer on making sure you've got support systems for the therapists as well.

Jerry: Absolutely. Just to touch on a couple of those points. I completely agree that speech language pathologists, speech language therapists, have a real unique skill set that allows us to facilitate, to support that communication and hopefully support expression of, you know, those psychosocial kind of needs and concerns. And I also think that we're really positioned well, to facilitate and support those interactions, as you said, with psychologists, and perhaps, you know, training, collaboration, kind of mutual bidirectional training in terms of giving them the skills to support communication and expression. And certainly vice versa, them kind of sharing their knowledge, those psychosocial and psychological supports as well. So…

Sarah: I think that joint working is a really lovely model and way of thinking about structures, isn't it? I mean, if you haven't got the psychologist to sit next to them, it's much easier. And there were definitely people who spoke about psychologist is in a different team, it's much harder to get a hold of them. And there just work pushes. I mean, not all stroke services in the UK at all have access to a psychologist and some of them are very thinly spread. And speech therapists are very thinly spread as well. So then, yeah, there's logistical difficulties there too.

Jerry: Yeah, absolutely. And we definitely have the same kind of issues in the states as well. In terms of access to those services, just so many means at this point across the entire population, so…

Sarah: Yes, this current situation is particularly extreme as well. Yes.

Jerry: Definitely. Yeah, definitely. Can you talk a little bit about the challenges of making those psychological, psychosocial therapies accessible, when someone has aphasia? Kind of the adaptations and types of communication supports you need to kind of weave in?

Sarah: Yeah, that's a really good question. The psychological therapy is traditionally they're language based on the kind of skills that you will be taught in a counseling training, of open questions and don't always work so well, when someone has aphasia. So, speaking, psychologists have to say, well, you need a little bit more skill, that some of the tools that you have don't work so well. So, I think there's a little bit of thinking there. And, yes, I think it's helpful to talk about my fellowship project. So that's the SOFIA Trial. And that's looking at adapting the solution focused brief therapy, so that it is successful for people with aphasia. With that trial, we had an aphasia advisory groups, and it was a lovely group of people with aphasia to advise us on it, and they were very, they advised us very strongly that we should see if we could make it accessible for people with severe aphasia. And I remember the time being a little anxious about this, but I couldn't really argue them, they had a point and was saying people with severe aphasic probably need psychological support more than anybody else, and so often excluded, even in the face of your trials. So, see what you can do, you're a speech therapist, you've got training in psychological therapies, we'll see what you can do. So, we ran a little pilot with people with very severe aphasia. And it was challenging, it was really challenging. Adapting solution focused brief therapy for people with severe aphasia. So, they had receptive and comprehension difficulties. And at the end of this pilot, we got a big thumbs up, though, they said, "this therapy does work, you shouldn't leave people with severe aphasia." So, we did. So, we did include people with severe disabilities. And in fact, I think it's 43% of our participants at securities union. So, we thought about this a lot, for three years now. I'm very happy to share my thinking with you on how we adapt solution focused brief therapy for people with severe aphasia if you'd like me to keep talking.

Jerry: I would love that. That would be terrific. And before you go on, I just wanted to make a couple of notes. You have a 2016 paper about that trial, excuse me, the pilot of that approach.

Sarah: Yes, I mean, this came as quite a surprise to me as a clinician, all the different stages of intervention. So, we've initially did a very tiny proof of concept study with five people who had mild to moderate aphasia. And I think the aim of that trial was just "does it work at all?" And perhaps a more personal level, "Do I like this therapy approach?" And then the little pilot has talked about the severe things yet that's not been published. That's internal pilot within the SOFIA project. I should really write that up at some point, but that's not been published. So yes, that was current work with people with severe aphasia before we do the trial. So yeah, there's been quite a lot of stages before we went into a feasibility trial. And as something that I'm particularly proud of is that we did include people with severe aphasia. And I can add that one of the things we're looking at is do the other different patterns in results in people with severe aphasia or mild aphasia, and we don't think that there particularly are. We think people with severe aphasia also benefited from the therapy. So we're really pleased. It is a different sort of therapy though I would say. So solution focused brief therapy is as traditionally, really linguistically quite complex. So there's cognitively complex as well, there's a lot of question forms, which are sort of hypothetical, conditional features and the other person's perspective. And if you go on a training course, I think most of the questions will seem like they're not really going to work that well with someone with aphasia. And a lot of the tools seem very based in language and very inaccessible, to be honest. So it was, I think what we did with SOFIA was we stretched back to think what are the core assumptions underpinning this approach? And then can we build up in a way that's more linguistically accessible? So, there was quite a lot of taking out solution focused questions and thinking, how can we make this simpler, and then sort of the other way of building up from assumptions? So that sounds really abstract. So, if I sort of give some examples. So, an assumption might be, a solution focused assumption might be that everybody has strengths and talents and skills, even though they're not yet quite aware of them. There are lots of solution focused tools to help elicit people really start to notice those strengths and skills and talents. And one of the things you might do to start a follow up session is say, you know well what have you been pleased to notice about yourself in the last week, so it starts to help people notice what's going well, what can they be pleased about, and I think what I would quite often do with someone with severe aphasia, as a follow up session I might, is have some way, visual way of representing the time. So, they knew the timeframes or looking at their calendar together. And I'll just say, "What are you proud of?" And we'd write down proud, maybe the gesture, and then we would just list five things they were proud of. And that was conceptually, quite straightforward. And then it was easy in speech therapy skills to facilitate them coming back with them, what they've been proud of. So, and it might take a whole, it was super exciting that, you know, if someone was linguistic, didn't have aphasia, that kind of little bit of conversation might take three minutes, five minutes, but for someone with aphasia, it might take an entire session to think of well what are five things that they've been proud of since I last saw you? And I remember one gentleman, he had very severe aphasia, not very much language at all. And he, he went off and he came back with this little wooden stool that he bought. And he, through gesture, he explained that he used this tool to help with his, and he was gardening with his tomato plants on his tiny little balcony. And it was explained with no language that it was just right, because he stopped getting backache, he didn't have to bend over. And then he explained through gesturing and looking at the stool that it was it was a peaceful story. I mean, it was it was a tiny stool. And he explained that he bought it from the local market. And he explained with his purse that he bartered it down, and it was actually only cost him 10 pounds, which is not very much money. And it was functional, it was light, it was the perfect height to stop getting backaches when he gardened his tomato plants. And it was beautiful. It was a really beautiful item. And if you got anyone else to just come down to the local pawn shop, and bought a little plastic stool, he had the kind of, it was just this lovely story that he did something about him that he'd been able to share with me, this little tiny incident in his life of buying this stool that he'd done over the last week, his gardening. And I think it was giving him that space to expand on these little details of his life that he felt proud of, and it was making a space. So, there wasn't very much language involved in that conversation at all. He didn't, there wasn't very much language in terms of my questions, there wasn't very much language in terms of how he answered them. And it probably took him, I don't know, 15 minutes to explain to me about this stool and what it meant to him. Maybe he didn't have very many chances, the rest of his life to expand on those little details of who he was and why this was important to him. So, sometimes I used to think, gosh, it's quite a watered down version of solution focused brief therapy, I'm doing, but there's some quite sophisticated questions and tools that I'm not able to use. And we would tear it back down to sort of this quite essential things. But somehow, it seemed to be quite empowering to have people feel that someone had noticed them, and that these conversations help people feel that someone had noticed what was special about them. And that helped them perhaps notice for themselves what was special about them. Sorry, that was a quite long winded answer.

Jerry: No, absolutely. I just think that's a fabulous illustration of, you know, the support that speech language therapists can provide in that context to facilitate all of that communication. So, you said this is a guy with very little verbal communication. And yet, that's a really complex story that you were able to elicit and really speaks to why, you know, we're well positioned, so to speak, to provide these kinds of supports as well, I just want to make a couple of notes. Referring back to that 2016 pilot, you have some examples of the language that typical solutions, focused therapy would use, you know, the best analogy I could give was, you know, some of those questions are a paragraph long, so to speak, and you've kind of pared that down to a single, you know, less syntactically complex sentence that allows those types of responses and that certainly all of the communication supports to get there in terms of expression.

Sarah: Yes, so at City University, there's a clinical linguist called Lucy Dipper. I do remember having a lovely session with her. And I said, look, I've got these questions, they don't work at all, and then that was quite nice to tap into kind of a linguist's attitude and she was sort of talking through how we could simplify. So that was, and that's kind of what I like about research, sometimes there's all these different angles. So, there's the kind of interpersonal sort of meeting with participants, but then there's the kind of more intellectual thing of how do we simplify this language when you first meet someone. And you might typically say in the first session, you know, this is really quite posing, I'm with your best friend, what would they say, which would tell you that these sessions have been a useful concept they see and know these questions go on, as you say, for a very long time. And we went through question by question thinking how to make them a bit simpler. So, in that case, the very first session, very sort of an opening out trying to explore what's into someone, what do they want to focus on in the sessions? I might write down, you know, we're having six sessions and write down six, six visits. Say, what, what are you hoping for? And then write down hopes as a gesture. And that's a much simpler way of asking someone than some of the typical solution focused. And then what we did when if that was, that's still a very open question, and quite hard for someone with very severe aphasia to answer so, we then we borrowed, like, highlights from everything we could find. So, we borrowed from talking maps. So, I don't know how much talking maps are used in the US, but this is where you, okay? So, he literally goes like here's a doormat, and you have all these cuts. So, we took the doormat idea, and we borrowed from all the research across the world about what it means to live well with aphasia, we got about 12 constructs, things like family, friends, competence, going out. And we thought we would do a scaling that was the sort of not to 10 at the top. Then we would ask people to place these different constructs on the scaling map so how they felt things were going and mostly people even with very severe aphasia were able to do this relatively okay. And then we were to say, what's important to move up from that? And that was relatively, it was very visual, you know, it was literally taking a card and saying, well, the card that I really want to move is this card. I want this card to move up. And it was a surprise, sometimes you'd expect to be sometimes in terms of a card that was already quite high, that was the thing they wanted. And that was I mean, that was just a real start point for the conversation. And I spent hours creating pictures to support these conversations. And what I actually found was most useful when I went along was just paper and pen, because it's so fluid and flexible. And if you don't know where the conversation is going to go, which you don't really with solution focused brief therapy, so very much following on from what I still recommend what they say. So, you can't really know in advance what the session is going to look like. Paper and pens and objects in the environment and just sort of being creative. So, making sure they have their own paper and pen, so there was a sort of an equality there. I did a lot of drawing and terrible drawing, I did a lot of drawing and sessions, and then making use of whatever they had that they were comfortable using. So especially these days, with smartphones just being amazing, and there was this gentleman who prior to his stroke, he used to go to art galleries, but it was only after a stroke that he learned to paint. And we had some lovely sessions with him putting up various paintings on his phone and showing me. Although there was a lady with severe aphasia, where during the week, she would take photos and things that she wanted to share with me because she was pleased about. So, she would take photos of the various meals she'd cook during the week, and she would show me on her smartphone. So, we kind of, again, that's free speech therapy isn't it, that's what speech therapists do all over the world, you make the most of the skills that the person with aphasia has. And it just goes, I just love it when you get to a stage where you don't actually notice that someone has aphasia anymore, you are just having a conversation, and it just happens to look slightly different from the conversation if they didn't have aphasia. But yeah, and that's a part of solution focusing as well, to make the most of it, to capitalize on people's strengths and what's going on.

Jerry: Absolutely, what a great description. I just want to highlight some of those things that you talked about just a, you know, a toolbox for facilitating or supporting that communication within that solutions focused intervention. So, you talked about the talking maps, just a fabulous tool, and you even mentioned personal modifications in photos that you added, the rating scales, obviously really powerful written choice. You mentioned earlier, writing down those key words, doing some great drawings of your own. Yeah, and then phones are just so powerful, you know, so easy to pull out and just shoot. So that really speaks to how you get at all of that language exchange when you are talking with someone with severe aphasia or with, you know, difficulty expressing.

Sarah: And I guess we kind of, we pulled on the bits of solution focused brief therapy, which are more visual. So, scales are often used in traditional therapy. So, as solution focused therapy would have, say, if someone really established that what they really were hoping to focus on was confidence, then for a scale you might have, ten would be they're feeling really confident, and zero is the opposite. So, solution focused, you would tend to invite someone to place themself on that scale. So, if someone doesn't have aphasia, you tend to do all this scaling work verbally. But I would reach for my scale and I would do all you know, write one to 10 on the scale, and then I would tend to write confidence as a key word at the top of the scale and then they would, after they place themselves on whatever is true. What I quite like about solution focused therapy with rating scales is that use that then as a tool to help elicit what's already working well. So, you would spend quite a lot of time then, "well how come you're a three and not a two?" So what score, and then listing is lovely, because it's quite conceptually easy. And it's a quite a natural way of writing down key words. So, I tend to spend quite a lot of time looking at what's already going well. And then it's very nice and visual to just then have a little area again, one step up to four. So, what does four look like? Again, these are very open questions. And sometimes, you know, you have to really scaffold much more than you would do if someone didn't have aphasia, might try different options with a partner as well. You know you get to know what people want, and what works for them, and some people found these very open questions hard to see how to scaffold it. But I still think that there's something quite nice about these visual scales, what does this look like when you start to scale?

Jerry: Absolutely, really powerful tool. And like you said, those comparisons of, "why weren't you a three? Why are you a four? What would it take to get to a five?" Open ended, but gives them the direction to say what they want to say, rather than us constraining that. So just to kind of follow that track of kind of delivering focused brief therapy, and then maybe some of the challenges that you encountered? Can you share a little about that, your experience?

Sarah: Would it help if I talked a little bit about what is solution focused brief therapy?

Jerry: Yeah, why don't we start there? Yeah.

Sarah: It's just one of many psychological therapies. And I have to say, I think my start point for the project was, was probably just, I want to show that it's possible to adapt psychological therapy, and I want to look at the role of speech and language therapists, and I've happened to do it through solution focused brief therapy. I think solution focused brief therapy aligns quite well with my speech therapists' sort of values of what they want from their work. And it's, in the UK is already quite used by speech therapists. And I think they find it's an approach that they can integrate with other language therapy work, they quite like it. So that was one of my reasons. And also, I had a little bit of training in it before I started my PhD. So, it was sort of on my mind, a therapy approach that I liked. So, to tell you a little bit about it, it originated in America, a family psychological therapies, and it started with Steve De Shazer observing, was one of the originators of the approach, observing family therapy sessions. And he noticed that most of the time these sessions were spent looking at the problem. And just occasionally a bit of therapy time is spent looking at exceptions to the problem. And his observation was that when session time was looking at these exceptions, it seemed to be associated with more progress. And that was kind of the seed of the therapy approach. So, there's a strong part of the therapy approach that says, well, whatever the problem is, there are usually times when the problem is less bad or not even there, and if we look at those times, what's happening then, perhaps that can be the building blocks to help people move forward. So, I would say as an approach, it's less interested in diagnosing problems and looking at problems, and it's more interested in noticing where people want to move towards, where they're wanting to get to. And it's less interested in problem solving and looking at what's going well, what's already going in the right direction that we can capitalize on. And I think, for me, a quite an important part of the approach is this idea that the client is the expert in their own life, not us as therapists, but it's for the client to know what's important to them, what matters to them, where they want to get to. And it's our role to help them work at how they want to move forward. So, that sounds quite straightforward. But actually, it's really quite hard to sort of sit on your hands and not give people advice and not stop to give people advice and tell people what to do. We'll not give people suggestions, but just to, to trust that they will have the resources within them to find their own way forward, so it's our role perhaps to facilitate that happening. And I think there's quite, there's a slight misconception, I think about solution focused brief therapy, that it's a very half glass full approach, and it's not really noticing, not giving space to the problems. And to be fair, sometimes that is how it's applied. And I think I felt really strongly in SOFIA that wasn't what I wanted. From my experience of delivering the approach, I think when someone's had a stroke, and you're a speech therapist, often, sometimes you're the first person ever really had the chance to really talk through what that's like. And I think that type of acknowledgement was always an important part of the approach for me. So, there's a sense of, some people have described those particular solution focused writer who does talks about one particular acknowledgement and one certain possibility, but I've always really liked that as the kind of metaphor for a sense of spending session time really listening to the person and being there with the person and then sort of shifting away when you feel it's right to think about possibility, and helping them to work out how they can live with it. And having belief and hope that it is possible to live with it too. So, there's sort of oscillating between the acknowledgement and possibility and I think that's been, well for me that's an important part of the therapy that we delivered in the trial. This sense of giving people space to talk about what's hard. And I think unless someone's feeling that you're really listening to that, it's quite hard for them, perhaps to want to trust you to make, to talk about how they're going to move forwards.

Jerry: Yeah, terrific. Just to highlight some of those key points, that idea that client is the expert in their life and how they live their life. And we really need to inhibit giving our own solutions because they have the capability of coming up with their own. And I just love those two frames, acknowledgement and possibility. So, yeah, terrific. What kind of challenges have you run into in terms of delivering that?

Sarah: So, there were three therapists delivering the therapy in the project and I was actually just reading through the interviews quite recently with the other two therapists. So yeah, I had lots of different hats on in this project, which is quite interesting. I think what was positive was that they found a very enjoyable therapy approach, delivering a rewarding and I thought it was feasible for speech therapist to deliver it. I think that where it was more challenging was, I think I found couples work more challenging when I was working with the couples. And I think for me myself, because I have had high quality training in solution focused brief therapy and psychological therapy. And I think for me, I really benefited from that additional training. I think it is you know, we're not couples' therapists. I think you can feel uneasy going into a session working with a couple where there is a sort of disharmony. So, I think maybe I sort of extra support for therapists in that situation. I think the therapy approach can work quite well, while I think it is challenging. I think the other thing that's challenging is when there's more severe distress. So, in the fellowship project, people could take part whether or not, whatever their skills and developing skills. So, there was a lot of people actually in the project who had a very high developing skills when we started the project, which is quite interesting because the therapy approach is really designed for people with high, you know it was designed helping to make change in other people who didn't really want to make the change happen to everyone which had its own challenges. But the people who were very distressed, I think there was a sense that they needed some real time support to help them to handle that and feel reassured that if someone was really that concerned about their mental health, that they have somebody to turn to. And I think that's really important that we're speech therapists, were not mental health professionals. And if you're working with someone, you think that, yeah, he's got mental health issues that you're concerned about to know that you've got back up somehow and you've got someone that you, it's just not all on your shoulders. So, I think that was a challenge. As I said, this is a challenge that we hadn't anticipated, that there would be people in the project who were really content in themselves, that they found a way to live with their life and they're taking part in the project because they were curious and wanted to contribute to research. And so, they did the therapy with us. And the therapy is designed to help people build change. And these are people who felt a way to live. They didn't really want to be making change. But there was one lady I worked with, a lovely, lovely, lovely lady and by the end of therapy, her first therapy session said, you know what, you seem to be, you know, you found this lovely way of living. Do you want me to come back to do the other five sessions? And she was very keen that I did. And she'd taken part in the project, it was her right to have these sessions. So, she had all six sessions. And then I guess, well, they were very special sessions. We very much sort of more future focus, looking at how you want to be shifting your life going forward wasn't really that much of a thing for her because she didn't. She was very frail and elderly, but she found a way to live with her things in her life. And so, we did a lot of time noticing everything that she was later a very special person. And I remember those were quite profound sessions really, I felt there was a real connection that she wasn't looking to make change. And whether it's quite hard in terms of the project, talking to people in the project who don't want to make change. This clinical trial is all about making change. But I think sometimes there is a value in conversations which don't necessarily lead to change, but there is something about the connection there that's important.

Jerry: Absolutely. Just kind of affirming the path that you're on. And like you said yourself, that human connection definitely may not measure the same way, but definitely important. When you were talking about that idea of people that have clinician's kind of having that back up, it just kind of reminded me of Ian Kneebone's stepped care model and how that is to know, you know, when you're kind of, when you need to hand it off or at least collaborate with someone else for those higher level needs for sure. Can we talk a little bit about the SOFIA trial and kind of where that played in?

Sarah: Yes, of course. So, the SOFIA trial was the feasibility randomized control trial and so is underpowered to definitively answer, is this therapy approach effective? So, the questions instead that we're asking from is, is this going to be feasible to scale up into a definitive full scale trial. So, we look at can the approach do this okay? Can we retain people within the project, if we do the assessments right, if we've got the training and support for the clinicians right? Is the therapy approach acceptable? Is it acceptable to deliver this as speech therapists? So, these are the sort of questions. And we recruited 32 people, half of them were randomized into the immediate intervention group. And we had to weight this design so half of them receive the intervention at six months. So, this is a group of 32 people. And in the end, two people withdrew. So, we have 30 people stay to the end of the trial and received therapy. And it was mixed methods. So, we interviewed all 30 of them. So it was, it was very interesting. And it's not so much about you know, have do people with aphasia experience receiving a psychological intervention. So that was a really interesting interview to read and it's quite an exciting stage. We've finished the trial and we were very lucky in the sense that we did our final assessment visits before COVID. And it's a bit poignant reading the interviews because it makes you wonder how people are over the last few months. But yes, so we're at the stage where we've pretty much finished all the analysis now. So, we're just about to start submitting. I don't know if you'd like me to share some of the...

Jerry: I was going to say, can we get a little sneak peek maybe before those papers come out?

Sarah: Yeah, that would be my pleasure. So, in terms of feasibility outcomes, since it's a feasibility trial, we were really pleased that the primary comparison point, the six months randomization and at that point we collected outcome measures from 30 to 32 people. So, 97 percent, which has really exceeded our expectations. And in terms of people adhering to therapy, so two people withdrew, and so out of 30 people who received the therapy, 29 of them received all six sessions, and one person received five. And to adhere, researchers said they needed to receive at least two, so all good. We recruited on time and on target. And I think there was, we were lucky, and we had a nice buy in from our sights, and I'm so grateful to our sights. And I think they kind of, the speech therapists I they were just really pleased to have a project that they could refer in people with severe aphasia. So, they were very supportive. And, yes, in terms of sort of any outcome measures, primary outcome measures, it seems to work fine. We have minimal missing data. So, thumbs up in terms of the feasibility outcomes, which is so lovely. In terms of the qualitative data, yeah, overwhelmingly the participants liked it. So, I think we can say it was a highly acceptable therapy. There were some kind of things that came through in terms of what they valued about the therapy; they valued having someone notice their achievements and what was their successes, they valued being able to have someone listen to them talk about their hopes and what they were hoping for, for in the future, they valued being able to share their experiences and their distress and have someone listen to them, and they valued connection and companionship. Some of them said one of the best things in it was having fun, having a laugh with a therapist. And that's something I really liked and that's what I really valued. And it came through as this really big thing, their relationship with the therapist, and how that was important when you're going to be a part of therapy for them. In terms of changes, not everyone was wanting to make change. But people talked about you know we have some nice things in terms of feeling better in themselves, in terms of sort of being more able to talk to family and friends, going out a little more. And then we sort of sectored people into four groups in terms of how they respond to therapy. So, they were one group we said was the changed group. So, these are the group of people who the therapy came at a really good time for them. Just constantly it had come at a time when they were in need of some kind of, not a need, but it really benefited them having this therapy approach. It led to sort of meaningful impact for them in their lives. And that was about a third of the group. And then there were two small groups of about five people in each group. There was one group where they called the complementary group, where they were on an upward trajectory, they were making a lot of progress, And the therapy, the research project therapy, was one small part that and I knew that they probably would make an upward projection anyway, but it was a positive thing and it helped them on their way. But we called it complemental. And then there was another little group of about five people that we called discordance. So, they were people who the therapy was misaligned, they liked the therapy and they like their therapist generally, but the therapy was misaligned of what they were looking for. So, they wanted language therapy. They wanted empowerment work. They wanted someone. We weren't at the end of the day psychologists, we were speech therapists, we could have done many therapies with them and that's what they wanted. We did solution focused brief therapy. So, there was a sort of mismatch and they were a bit you know, they wanted exercise. And it's frustrating to kind of think in clinical services, you could have given them that and done solution focused brief therapy around the edges perhaps, would have perhaps part of it for some of them is coming to terms with what they could and couldn't do with the aphasia and that. And then there was another group. It was about a third of the group who we called the connected group, and they weren't looking to make changes from the therapy. They weren't coming into the project trying to, with the idea, and our whole concept of change to come from us as researchers really. They came out of curiosity of contribution and what they really valued was this connection with the therapist, and we called them the connected group. They really liked therapy, the highly valued it, but it was about the connection of the therapist rather than wanting to shift or make changes. And to be fair, I think we found the ending of therapy the hardest. And it made me feel that there's the duty of some kind of ongoing support, which wasn't part of the trial protocol. But I think for them it was, yeah, if I had to run this trial again and if we had people in that sort of connected group, I would think, what kind of, is this important that a part of this is looking at? So that's qualitative. And in terms of the clinical outcomes, as my statistician keeps telling me, he is very much on feasibility trial and the power, but the primary outcome measure, the primary comparison point, which is six months post randomization, it seems to be going in the right direction. But, as my statistician keeps telling me it is the small groups and we can't ever extrapolate from the statistics, but it does seem to be promising.

Jerry: Well, that sounds great. I was going to ask you a little bit about the implications of these findings to everyday practice. I think you kind of touched on that. Any kind of takeaways or thoughts on that piece?

Sarah: Like I said, it is really encouraging that the speech therapists on the trial found it a positive therapy to deliver. So, it does suggest that speech therapists, who have an interest in this area, if they get training in a kind of brief psychological therapy, it is a possibility. And I would say that sort of the therapists in this trial did have monthly clinical supervision as well as quite a lot of initial training, and they had real time support when they needed it too. So, they had that sense that they felt quite nurtured, I think, within the project. And that was important. I would say the theme of feeling connected just speaks to value that the participants placed in being able to share how they were experiences to suggest that that kind of active listening and being there with someone and sort of listening to how someone is, that's of real value. And if a speech therapist has done that in a session, they should probably come away from that session feeling really proud that they have done something important. And I suppose my other thing is I'm a believer in this joint work between mental health professionals and speech language therapists. And I think going forwards, I know I've personally really valued from it, having mental health professionals in my supervisory team of EBSCO, I urge them for advice and having a kind of clinical support as well. And when you're feeling someone is very, very distressed in recognizing that as a speech therapist, that's fine. And that much of our role is working with mental health professionals.

Jerry: That's terrific. I'm looking forward to reading those papers when they come out.

Sarah: Thank you.

Jerry: I'm on the edge of my seat for sure, it is really important work. In the meantime, is it okay if we share, you have a severe trial resource page, is it okay if we share that link with our listeners?

Sarah: Absolutely. Yeah, thank you.

Jerry: Excellent. Well, I could continue this conversation all day long, so probably better wind it up. I'm wondering, I just want to give a nod to this as a little bonus. Would you be able to share kind of a nutshell little version of your work on befriending in the SUPERB trial?

Sarah: Yes, of course. So, the SUPERB trial has also just come to an end and they're also just writing up papers and yeah. So, that's where people with aphasia, where Mastrov befriended people who have recently come out of hospital with aphasia and the feasibility outcomes, again very, very good and strong in terms of the clinical outcomes. Really encouraging again, the statistician saying we can't over play these. But it is looking very encouraging in terms of the primary outcome measure, which is marriage, and preventing people becoming depressed. So, within SUPERB it was only people who scored as not depressed who were eligible to take part. And in terms of follow up, a 10 month follow up, it does seem that there's a difference between groups in terms of how many people results, in terms of the clinical outcomes and in terms of the qualitative side which is the side I've been most involved in. Encouraging. Yeah, there seems to be something special about an intervention delivered by people with aphasia. And at the end of the day, they can offer something that me as a health professional I can't offer. And yeah, a unique understanding and ability to empathize from having lived with the aphasia, some sort of sense of role modeling as well. This is, it's possible to live with this particular guilt, with the part of the data of experience of the defenders. And I would say that I found it a very challenging intervention to deliver, all of the logistics of organizing appointments and organizing the travel, and it can be quite challenging in terms of if the friend, the person receiving the befriending is upset or changes their mind about wanting intervention. I think that's quite hard, but they found it a very rewarding intervention to deliver and I found it very satisfying that something that was really painful in their life, but being able to use to help other people. And I think that was quite powerful. And I think they felt very pleased to be involved with the trial. And I think what they would highlight is that they were very it was very satisfying experience for them. And they thought it was making a difference, that the supervision and training was really important. And I think the real time support, as well as if they were feeling a bit stuck, that they knew they had someone and they got peer support so they supervision in the group, and I think that was really valuable. I sat in with the person doing the supervision, and I think she was wonderful. So, I think it was a lovely intervention.

Jerry: Wow, that's terrific. Again, waiting for that one, too. Well, this has been a fabulous conversation. So, on behalf of Aphasia Access, we 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 [email protected]. Thanks again for your ongoing support of Aphasia Access.

Resources:

SOFIA trial resource page: https://city.figshare.com/collections/SOlution_Focused_brief_therapy_In_post-stroke_Aphasia_SOFIA_feasibility_trial/4491122

On behalf of Aphasia Access, we 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 [email protected] Thanks again for your ongoing support of Aphasia Access.

Janet Patterson, Ph.D., CCC-SLP, Chief of the Audiology & Speech-Language Pathology Service at VA Northern California, speaks with Jessica Richardson, Ph.D., CCC-SLP, about aphasia, neural recovery, treatment outcome measures, and discourse, all at the center of her study to improve communication and life participation in persons with aphasia. These Show Notes are an abridged version of the conversation with Jessica.

Jessica Richardson, Ph.D., CCC-SLP is an associate professor and speech-language pathologist in the Department of Speech and Hearing Sciences at The University of New Mexico. She is director of the Neuroscience of Rehabilitation Laboratory, the SPACE (Stable and Progressive Aphasia CEnter) within, and the UNM Neurochoir. She is also Outreach Director for the Center for Brain Recovery and Repair at The University of New Mexico Health Sciences Center. Her research focus is on improving assessment and treatment for adults with communication disorders following acquired brain injury (e.g., post-stroke aphasia, post-TBI cognitive-communication disorder) or due to progressive disease (e.g., primary progressive aphasia) in order to improve participation in everyday life activities. Her lab also studies the impact of brain stimulation on brain structure and function, as well as on behavioral outcomes, in these populations. She uses structural and functional neuroimaging (e.g., EEG, MRI) alongside narrative assessment (and other behavioral measures) to identify diagnostic biomarkers and/or to characterize recovery, disease trajectory, and response to treatment. Dr. Richardson is a 2020 Tavistock Distinguished Aphasia Scholar, USA. In the comments and highlights Below you will read about Jessica's work and the influence the Tavistock award has had on her career.

Janet: How has being named a Tavistock Distinguished Scholar USA for 2020 influenced your continued work in aphasia clinical research?

Jessica: This award has reenergized my work. As we go along in our careers it can become easy to lose track of our mission and, as I did, begin to ask why I am following this path. The Tavistock award has a focus on helping people change the lives of people with aphasia, and

receiving this award reminded me of my mission and why I am here doing what I do every day, especially in 2020 which we all recognize posed an extra challenge to life. In addition, the Tavistock award supports networking with people around the country and the world to talk about ideas and building a bright future.

Janet: Much of your work in aphasia has focused on measuring discourse production in persons with aphasia, in particular, conveying main concept information. How do you see production of main concepts in a discourse event as important in supporting successful communication between persons with aphasia and their communication partners?

Jessica: As you know, there are hundreds of discourse analysis measures out there. I began examining discourse using Brookshire & Nicholas' CIUs – a measure that has power and limits and that clinicians both love and do not love. Brookshire & Nicholas also wrote about using Main Concepts as a measure of discourse and after reading about it, I was hooked! However, I could not find any tools using Main Concepts and so decided to do something about that.

Communication requires that we give and receive information and the idea of Main Concepts focusses on packaging the gist of the information so partners will understand each other. If the packaging is faulty then the communication can be poor or can fail. Measuring and targeting how people package the gist of what they want to say is useful for our patients. Main Concept Analysis in assessment of person with aphasia is a psychometrically sound procedure, and clinically useful, but it only takes us so far because information has to also be organized. My team and I are expanding Main Concept Analysis by looking at story grammar and sequencing, using Main Concept Sequencing and Story Grammar Analysis because we know the packaging of the message is as important as the content.

Janet: Clinicians working in a busy practice may find it challenging to add discourse measurement and treatment to their treatment plans for persons with aphasia, especially if the measures require a bit of time to administer or score. What advice or suggestions can you give to our listeners about how they can efficiently include discourse measures in assessment and treatment?

Jessica: Another measure I have worked on is the Core Lexicon. Here is my message to clinicians: Dear Clinicians: Many researchers are dedicated to working on development of clinically useful discourse measurement. I am proud of recent work we published on utility Main Concept Measurement because it is clinically useful and does not require phonetic transcription. Our checklists and scoring methods are readily available to you. Other resources on discourse analysis available to you are a recent issue of Seminars in Speech and Language; a link in Aphasia Bank; FOCUS: Aphasia (Fostering Quality of Spoken Discourse in Aphasia). If you have questions about a measure and how to use it, do not be shy about reaching out to the authors.

Janet: Another area of clinical interest to you has been using transcranial direct current stimulation, or tDCS, as a treatment technique. Here's a multiple part question for you about tDCS: how does tDCS work; how do you use tDCS in aphasia therapy; and how can it enhance communication skills in a person with aphasia?

Jessica: There are long answers to your questions that we could spend hours discussing. Let me give a short answer here. tDCS can modulate your brain; it is called neural stimulation but it is best to think of it as neuromodulation. tDCS does not make neurons fire or stop them from firing but modulates the 'soup' within which these neurons are firing. Electrodes are placed on your scalp and electrical current passes through your scalp and through your brain, and influences electrical communication that is already happening between your neurons. In aphasia therapy we pair tDCS with behavioral therapy with the goal of modulating electrical communication between neurons that is already happening during treatment tasks in hopes that you can encourage more involvement of desired brain areas and downplay involvement of less desired brain areas. So far, the most positive effects have been seen with naming treatment. We are in the early stages of pairing tDCS with discourse treatment and have promising results. The work I am doing now combines two areas of research that I love: brain stimulation and discourse, and I am happy to have received a grant to further my work in these areas.

Janet: tDCS works together with behavioral treatment. How do you see tDCS fitting into contemporary aphasia treatment to support functional communication and life participation for persons with aphasia?

Jessica: I think this technique shows promise and will help reveal untapped recovery potential. For so long we focused on the brain lesion: the site, the size, what it can tell us about what a person can and cannot do. However, the lesion is not a modifiable factor, and the focus should be on things that are modifiable. For example, we have not focused on or had the tools to examine the rest of the brain. What does the health of the rest of the brain tell us about what a person can or cannot do, and how much a person might improve? There are many observations about the rest of the brain that are important and perhaps tell us that these areas are not as intact as we thought. They may have low blood flow or be less connected, and these states may be modifiable. This suggests that we should use every tool available to us to aid recovery, including behavioral treatments, neuromodulation, and variable treatment dosage Using all the techniques available to us will help us push the recovery curve higher and longer, including focus on connected speech, which in turn, helps improve life participation.

Janet: That is, as I see it, the heart of LPAA: where does the person with aphasia want to go and what are the pathways that can be used to get there? Certainly, using every tool available to us is important in planning treatment.

Jessica: Yes indeed. A new avenue of investigation for us is remotely supervised tDCS. This project will help us understand both tDCS and remotely supervised behavioral and neuromodulation treatment delivered in the home.

Janet: The pandemic of 2020 has taught us many things, including the value of virtual treatment for individuals, including those who have aphasia. Your work in remotely administered tDCS fits nicely with this changing view of treatment delivery.

Your work in aphasia also encompasses several person-centered efforts. Tell us about some of your translational research and clinical projects such as recognizing the efforts of caregivers, examining fidelity in assessment and treatment, creating an aphasia choir, and investigating treatment dosage. Let's start with your interest in supporting caregivers, what have you discovered?

Jessica: First I would say caregivers are grateful to be asked about themselves. They are used to answering questions about their family member and appreciate the focus turned on them. Second, they are tired and want to rest. Third, they are in need of information about how to provide care for someone else, and how to do self-care. We discovered other interesting themes such as depression, quality of life, and fatigue. Addressing these issues is important to life participation because as we all know, life participation is not just about the person with aphasia, it is about the unit in which the person with aphasia lives.

Janet: You make excellent points, Jessica. Several years ago my colleagues published a paper asking caregivers what information they had and said they wanted. The data suggested there is a gap between what information we think is being given to caregivers, we as speech-language pathologists and other medical professionals, and what caregivers think they are being given. It is a gap that should be filled.

Another area of interest to you is assessment and treatment fidelity. When treatments are modified, sometimes without a clear foundation, it becomes difficult to track if the treatment is being delivered in the same way and that a clinician is being internally consistent. Fidelity in both assessment and treatment is important in assuring the best possible outcome for a patient.

What would you like our listeners to know about your work in fidelity?

Jessica: This line of research came about in an interesting way for me, from thinking about it for a grant proposal, leading a roundtable discussion, and now investigating more closely. One thing I would like listeners to know is that it is important when reading a report of clinical treatment research to read carefully to determine that the treatment was carried out with a high degree of fidelity. If it was, then the stud is more likely to be replicated and the results are more believable. Researchers should think about fidelity as they design an assessment or treatment study; adhere to principles of fidelity during the project; and report their fideladventureity results. Clinicians should know that the manuals and operational steps available are important for interpretation. The example I sometimes give is that if one wants to use the results of an assessment procedure, for example to compare to the population listed in the assessment manual, then the assessment should be given exactly as described in the manual. If one has to off script, which certainly happens in a clinical environment, one must make note of those changes and consider that when interpreting the assessment results. The other note I want to make for clinicians is that if one finds oneself frequently making a change to an assessment or treatment protocol to accommodate a patient or situation, then the field needs to know. This is practice-based evidence (PBE), helping authors and researchers know how protocols should be updated or changed so that other people can implement it with greater effectiveness. Fidelity supports hearing more form clinicians through the PBE side instead of just the EBP side (Evidence-based practice).

Janet: You are absolutely right, Jessica. Now let me ask you about your aphasia choir. Twelve years ago, I saw one of the first aphasia choirs begin at our site at California State University, East Bay. It was quite an adventure watching the unique choir members with aphasia navigate aphasia and music to become a unified choir. Two years ago, I gleefully (pun intended) watched your NeuroChoir post their first video – what a joy it was. To watch – all of you on the screen and singing away – impressive! Tell me about how your choir evolved and also how it continues to meet, especially in the midst of this pandemic?

Jessica: I love our choir. There are so many aphasia choirs and it is great to hear that you were there for one of the first ones. Our choir began in 2016. I have a musical background which made me less fearful to begin and lead a choir than I might have been. We needed something more in our community or people with aphasia and I wanted to help provide that. We welcome people with any type of brain injury, not just aphasia, and although our membership waxes and wanes, we do have a core group of individuals who attend. During the pandemic choir has been a challenge. Singing together in a virtual environment does not work so well because of the audio and visual delay, and logistical issues such as people talking over each other. During our choir time we play musical games and other activities; everyone but the singer is muted; and we certainly long for the days we can meet in person again. Choir is different now, but there is still joy.

Janet: In your video, I can see that in your faces and hear it in your voices. Talking with you today is a smorgasbord of mutually interesting topics and a fun discussion of translational research and clinical ideas, and how our worlds have intersected over the years. Moving to another topic of interest to both of us is treatment dosage – how to figure out how to deliver treatment in just the right amount so the result achieved is a positive outcome. That is, not giving too much treatment – more than is needed, or too little to effect an outcome. This is a tricky question with no easy answer. What insights have you learned in your work?

Jessica: This topic kind of hurts my heart, Janet, because we need more. More research into treatment, more treatment hours in a day, more treatment days in a week, better treatment schedules, remote treatment so patients can work at home, more inclusive founding mechanisms, more conversational partners and settings – we just need more. If one looks at the literature on animal learning, which I realize does not always directly apply to humans, we are nowhere near the number of repetitions or hours spent in treatment to produce those amazing results that have hacked into the neuroplastic principles. If we are really wanting to apply neuroplastic principles to research and clinical practice, which we should do, we have to find ways to facilitate this idea of more. At this point I look on this with sadness as there are so many obstacles to doing the "more" part of this. It will be critical in the coming years to get creative as a community to advocate for research into treatment dosage.

Janet: I think you right about that. Add into your thinking that individuals are so variable that a dosage one might think appropriate for one person might not be so for another person. I can see how it hurts your heart and there is certainly a long way for us to go to figure out answers, however it is a worthwhile endeavor.

Jessica, as you can tell form our conversation today, it has been so much fun to talk to you about our interests and your work. I am impressed with your work and dedication to serving people with aphasia. As we come to a close, what success stories or advice or lessons learned would you like share with clinicians working with people with aphasia using an LPAA model, across your clinical career, y our research career, or just across life in general.

Jessica: That is a good one to end on. I would say first, there are lots of tools out there through Aphasia Access and other resources, so many that it may become overwhelming or difficult to navigate. When that happens, reach out – to people, organizations, and any source. The other issue is barriers to using the LPAA model. Sometimes one is in a place where there are barriers to implementing your ideas – I have certainly been there. Sometimes you have to move the barriers and sometimes move yourself to a place where those barriers don't exist; moving professionally or ideologically. Sometimes however, one o the barriers might be yourself – are you getting in the way of implementing your ideas. I say that from experience as I had to get out of my own way to make progress. The last thing is to plead with clinicians to keep using your voice to advocate for people with aphasia. There are researchers who are clinically minded and they are wanting to listen to you and learn from you – your voice, your experience, your front line work with persons with aphasia, your barriers, and your victories in LPAA. Your voice and your viewpoint are valuable and influential, so please keep raising your voice because it has and will continue to influence the questions being asked in a positive way.

Janet: Thank you Jessica. That was a terrific response and an uplifting way to end our conversation today. It is clear that you have vision for how you would like to address the questions we have been discussing. I feel the enthusiasm coming across the airwaves and I hope our listeners will feel that as well and reach out to you if they have questions or comments. Thank you for your thoughtful responses to my sometimes-perplexing questions.

This is Janet Patterson, speaking from the VA in Northern California, and along with Aphasia Access, I would like to thank my valuable guest, Jessica Richardson, for sharing her knowledge, wisdom and experience as a clinician, researcher, and advocate for people with aphasia.

You can find references, links and the Show Notes from today's podcast interview with Dr. Jessica Richardson at Aphasia Access under the resource tab on the home page.

On behalf of Aphasia Access, we 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 please go to www.aphasiaaccess.org. If you have an idea for a future podcast topic email us at [email protected]. Thank you again for your ongoing support of Aphasia Access.

Links

Publications:

https://www.ncbi.nlm.nih.gov/myncbi/12WPcJZAUeOAR/bibliography/public/

Websites:

https://shs.unm.edu/people/faculty/jessica-richardson.html

http://www.jdrichslp.com/

YouTube:

https://www.youtube.com/channel/UCTQah61XG76Pt3PIKJvyB0A/playlists