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Finding the person in front of aphasia: A conversation with Lauren Bislick
Manage episode 429205969 series 1285244
Welcome to this Aphasia Access Aphasia Conversations Podcast, a series of conversations about aphasia, the LPAA model, and aphasia programs that follow this model. My name is Janet Patterson. I am a Research Speech-Language Pathologist at the VA Northern California Healthcare System in Martinez, California, and a member of the Aphasia Access Conversations Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their efforts in engaging with persons with aphasia and their families through a variety of educational materials and resources. I am the host for our episode that will feature Lauren Bislick, in which you will hear about friendship, yoga, mental imagery and aphasia. These Show Notes accompany the conversation with Lauren but are not a verbatim transcript.
In today’s episode you will hear about:
the value of friendship in our lives and Mission SPEAK,
ideas for creating an accessible yoga program for person with aphasia, and
the value of mental imagery.
Dr. Janet Patterson: Welcome to this edition of Aphasia Access Conversations, a series of conversations about the LPAA model and aphasia programs that follow this model. My name is Janet Patterson, and I'm a research speech language pathologist at the VA Northern California Healthcare System in Martinez, California. Today I am delighted to be speaking with Dr. Lauren Bislick, a newly minted Associate Professor at the University of Central Florida, in the School of Communication Sciences and Disorders. Lauren is also the director of the UCF Aphasia House, and the director of the Aphasia and Related Conditions Research Lab. Across her work efforts, Lauren investigates the diagnosis and treatment of acquired apraxia of speech and aphasia, the value of mindful body practices such as yoga, friendship development, and interprofessional education and practice.
In 2023, Lauren was named a Distinguished Scholar USA by the Tavistock Trust for Aphasia UK. The Tavistock Trust aims to help improve the quality of life for those with aphasia, their families and care partners by addressing research capacity related to quality-of-life issues in aphasia. Congratulations on receiving this honor, Lauren. Aphasia Access collaborates with the Tavistock Trust for Aphasia in selecting the awardees and is pleased to have the opportunity to discuss their work and the influence of the Tavistock award.
Welcome Lauren, to Aphasia Access Conversations.
Dr. Lauren Bislick: Thank you, Janet, and thank you Aphasia Access for having me. Also thank you to the Tavistock Trust for the review team for nominating me and for selecting me. I'm truly very honored to be a recipient of this award.
Janet: It's a well-deserved award. Lauren, as we said, you were named a Tavistock Trust, Distinguished Scholar USA for 2023. You join a talented and dedicated group of individuals in this award. How does receiving the Tavistock award influence your clinical and research efforts in aphasia?
Lauren: First, I'll say again, I was truly honored to receive this award and was definitely surprised. The nomination announcement occurred at the Clinical Aphasiology Conference, and they didn't give us a heads up that the announcement was coming through, so I was very surprised. I think in terms of how this has influenced my clinical and research efforts as an academic, and as a clinician. I think a lot of people can relate to that feeling of imposter syndrome, and so receiving this award has helped me push that feeling to the side a little bit in some aspects of my work and of what I do. It's also allowed me to feel very proud about what I've been able to do. but more so through my collaborations and my students and the community that we have at UCF. It's allowed me to grow connection. Since receiving this award, people have reached out to me to talk about collaboration or wanting my help in terms of more of a consultant role. It's allowed myself and my lab to reach a larger group of people and has definitely supported that emphasis on quality-of-life work, which is not necessarily the training that I focused on when I was in my doctoral program. That’s been something that I've come into in my time as an assistant faculty member or a junior researcher. It feels very good to be acknowledged for that and for these lines of work being supported.
Janet: And well deserved, for certain. Lauren, I would like to begin by asking you about your recent work investigating the role of friendship for persons with aphasia. I believe in the power of friendship and community during joyful times, and also during sad times in one's life. One of the unfortunate consequences of aphasia can be the loss or diminishing of friendships, or the communication skills important to developing and sustaining friendship and community. How did you become interested in this aspect of aphasia? And what conclusions have you drawn from your research?
Lauren: Thank you for this question. One of the things that I talk about frequently in both my aphasia course and the motor speech disorders for our graduate students, is how individuals with acquired communication disorders, whether it be linguistic, or motor based, is that their social circles get smaller, and we know that's a problem in life. Friendship is an essential component of quality of life, and as you said, whether celebrating the good things or you're going through a hard time you need those friends. This is an important area that I believe gets overlooked although now we have a couple of different groups looking at friendship and aphasia, which is wonderful. I actually have to thank Dr. Elizabeth Brookshire Madden for pulling me into this work. She is at Florida State University, and I like to call us aphasia sisters. We went through the same doctoral program, and she was one year behind me. We became very close during that time, both as friends, but also in the work that we do. [Aphasia Access note: Elizabeth Madden was selected as a Tavistock Distinguished Scholar USA in 2024.]
One of the other faculty members at Florida State University, Michelle Therrien, does work on friendship, but in the pediatric world. This grew out of conversations between Liz and Michelle, where they started talking about how we can look at friendship and aphasia. Clearly, we all believe it's an issue, but it hasn’t been well investigated. That was shortly before the team Project Bridge Conference, which is really what helped initiate this kind of area of research for our group. Liz and I met at the 2018 Project Bridge conference and started facilitating a friendship group; she took the lead in this area. I got pulled to the yoga group, which we'll talk about later. Liz talked with a number of care partners of individuals with aphasia, and started discussing their social groups, and then friendship. Leaving that conference, she had some really great ideas about where to go next and what was needed in the area of friendship. From there grew her team of myself, Michelle Therrien, Sarah Wallace, at the University of Pittsburgh and Rachel Albritton, who's also at FSU.
In our first study, we did a survey with SLPs trying to ask if SLPs see friendship as being an issue? You know, is this us projecting, or is this something that clinical speech-language pathologists are seeing as an issue? If so, are we addressing it in the field? What that initial study showed us was that, yes, SLPs report that their clients are experiencing loss or difficulty with friendships. They also reported that there are barriers, there aren't assessments that ask about friendships, and there aren't interventions. So, while they see this as an important thing, and something that SLPs believe that this was within our scope of practice, they need a little more guidance as to how to support people with aphasia in terms of maintaining friendships, and then also developing friendships.
Following that study, we then spoke to people with aphasia and also spoke to caregivers of people with aphasia to get their perspectives and their lived experiences. What happens to friendship, immediately after a stroke? In that acute phase? What happens to friendship during that chronic phase? And then where are they now? What we found through these conversations is that many individuals reported that their friendships had changed after they acquired aphasia, both in the acute phase and the chronic stages. The same could be said for caregivers as they are navigating this world as caregivers. They are experiencing changes in their friendships. With aphasia being a chronic condition, this is something that people are living with for the rest of their lives. Friends can kind of be there in the beginning, and that acute care phase where they send messages or come by to say hello and show their support. As they realize that the communication impairment isn't going away, they don't know what to do and may get a little uncomfortable, feeling bad that they don't understand their friend with aphasia, or they don't know how to support them in their communication, or this problem isn't disappearing. This is me projecting, but I believe that's what's happening and what we're seeing is that people with aphasia, and their caregivers are reporting this loss. They also are reporting gaining new friends as they become ingrained in social groups. They meet other people with aphasia or care partners of other individuals with aphasia and develop friendships that way. They are also reporting smaller social groups, smaller groups of friends from their pre-aphasia life, dwindling for a lot of people. We think from our research what we're finding is that we really need interventions that target friendship maintenance and development. Some of that may be as simple as providing education, inviting friends into the therapy room. We do this with care partners, we can also offer this to friends to see how we are interacting with your loved one with aphasia. We can provide key tools to support communication; I really think a big piece of it is education. We’ve got to find the best way to navigate this in the clinical world. I think that's the next step not only for our group, but for the other groups that are looking at Friendship.
Janet: Lauren, you make some very good points in those comments. I wonder, do you have some brief thoughts or very specific ideas about how as clinicians, we can act in ways to optimize the friendship activities of our clients, or their care partners, recognizing though, that everyone has different styles and needs for friendship? It's like you say, we should not be projecting our desires and our styles and our needs onto our patients, but rather listen to them and figure out what their needs and desires are?
Lauren: Number one, right there, is listening to our clients, listening to their loved ones, what do they need? As I mentioned before, I think education is a really big piece of this. That may mean just having some materials as a speech-language pathologist that you can send home with family members that they can give to friends, right, so not just materials for that care partner, or the person with aphasia, but materials for friends. Here's something that will educate you a little bit on what aphasia is, there are some ways that you can successfully communicate with your friend with aphasia, here's what to expect. I think some of it is people just don't understand. They don't live in our world clinically, working with people with aphasia, working with people with communication disorders. For some, it's that they've never been exposed to, and so there's a discomfort with the unknown. I think education is huge. Also inviting friends. If you're going to have a counseling session with a care partner, and a person with aphasia, and their loved one, would they like friends to be at that table? Ask them. They may not, they may want it just for them and to be quiet and personal, but they may have some really close friends that they know they're going to lean on and want to be there. Opening the opportunity to invite other individuals and also inviting friends to support groups. Bringing friends to support groups, I think, would also be a space where friends then can observe interactions among people with aphasia, as well as their loved ones, and can have an opportunity to interact with other people with aphasia. So those are a few things that I think we can do right now. There are through many of the different resources like ARC [Aphasia Recovery Connection], for example, there are opportunities for education, communication partner training, and those are things that we can also plug friends into
Janet: Those are some very good ideas, Lauren, very good ideas. You have also worked to address the isolation felt by people with aphasia, and severe acquired communication impairment through your lab’s Mission SPEAK program. Can you tell us more about this program, please?
Lauren: Absolutely. Mission SPEAK stands for Mission to Promote Socialization, Participation, Engagement, Advocacy and Kindness, for people with severe acquired communication disorders. This grew out of a lack of participation among some of our community members who had more severe communication impairments. They felt that they were just unable to be successful in a group setting, and tried some of the aphasia support groups, but didn't feel like they were being heard, or that they had equal opportunity, or were just frustrated by it. It didn't feel right for them. And so, I started thinking about, well, how can we provide an opportunity for individuals who feel this way, or maybe they're just more introverted which could be another piece to why they don't want that large group. How can we provide opportunities where they're still getting to practice communication in a safe space, develop friendships, and just be able to interact to combat those feelings of isolation that people with aphasia and other acquired communication disorders report. Mission SPEAK is a program where the students in my lab, both undergraduate and graduate students, some are CSD, some pre-med, some in their med programs, where they have the opportunity to meet with an individual with aphasia or another acquired communication disorder on a weekly basis to have a conversation. It’s all via Zoom. These meetings can take any shape that the person with aphasia or the communication impairment and the student want to go with it. We have some individuals that meet to actually practice what they're learning in therapy and so the clinician has connected with my students to say ‘Hey, can you go over this homework with them or allow them opportunities to practice’ and sometimes the clinician will hop on to Zoom as well. We also have opportunities such as one of my students and one of our friends with aphasia are reading a book together and so they do shared reading. In another pair we have a young man who really just needs interaction, so he meets with two different students, and they just have conversations over shared interests. Sometimes his mom is there to help support communication. We see as time goes on that as the individuals are getting more comfortable with each other, and the students are getting more comfortable, there are emerging areas where there are overlapping interests, or maybe the student is learning from the person with aphasia say, about sports, for example. We have one group where our friend with aphasia is a huge sports fanatic. He was meeting with two young women in our undergraduate program who knew very little about some of these sports and so he's taught them. It's really fun. Again, they meet at least once a week. We have one individual that at one point was meeting with three separate students three times a week. The friendships that form from these smaller groups are something special. For some of these folks it's intergenerational, for others they are peers. What you see is that the students don't want to give up this opportunity. I have some students who have been meeting with their friend with aphasia for over two years now. They've gone from their undergraduate programs through their graduate programs, and they've just developed a friendship and don't want to let go of it, which I think is phenomenal. This is something that I would like to see open up as chapters across different universities. Students want these interactions so badly and there are so many people with acquired communication disorders that need an outlet, and that would benefit from this safe space to work on their skills to just have fun. It really can be whatever they want it to be.
Janet: What a great idea. You've got my brain spinning. And I've been making notes about some clients I've been thinking about who would benefit from exactly what you're saying, just the opportunity to have an interaction and conversation. Wonderful.
Lauren, another avenue that you've been interested in is the practice of mindfulness, especially yoga practice. How do you see yoga practice supporting the LPAA philosophy of living well, with aphasia?
Lauren: Love this question. I have to backpedal just a little bit to answer it to say, I was never a yogi until I started my doctoral program. If you know me, I'm 5’11”. I'm tall and I grew up playing all the tall-person sports and pretty much was of the mindset that if you're not huffing and puffing and soaked in sweat, then it wasn't exercise or it wasn't beneficial. Well, I was wrong. In my doctoral program, I was dealing with imposter syndrome. I'm also a first-generation college student. Being at that level, and with all the different hurdles that a doctoral program offers, I was really feeling that imposter syndrome and anxiety that surrounds it. Somebody suggested starting yoga, and it's what got me out of bed in the morning, and really grounded me to face my day and feel as confident as I could in my skin during that time. After doing it for a few years, I just had this aha moment of, wow, I would love to bring this to the aphasia community. It's helped me with my anxieties and my areas of self-doubt and has just allowed me to also be present. I can only imagine for some folks with aphasia the anxiety that they may have surrounding communication, or just feeling okay with where they are in this part of their journey and that acceptance piece. Then I pushed it off. I said, well, I can't do that now I have to wait until I get tenure, I've got to focus on this very systematic treatment development program. I can't do more things.
Then in 2019 when I was an assistant professor, just my first year at UCF, I went to Project Bridge again thank you, Jackie Hinkley. While I was there, there was a small group that consisted of Dr. Amy Dietz and her friend with aphasia, Terry, who were at a table, and they were promoting yoga for aphasia. I was walking around, and I saw that table and I thought it was amazing. I went over there to have a conversation with them. Amy Dietz had just finished a small pilot project looking at methodology of how we make yoga accessible. And so I talked with Amy and I talked with her friend with aphasia, Terry, about their experience, and then more people started coming to that table; Susan Duncan, who is aphasiologist and a speech-language pathologist and a yoga practitioner, and then also a person with aphasia, Chase Rushlow and his mom, Deanna Rushlow. All the whole rest of that conference, we hung together, and started planning out the trajectory of how to bring accessible yoga to people with aphasia and to the aphasia community. Chase had experienced yoga, post stroke, and as a person living with aphasia with his mom, they shared their story about how it brought them together, and how it grounded him, how he found Zen. It was so fruitful being able to have these conversations with people with aphasia, and also their care partners, and them telling us what yoga has done for them. Not only did we all have our own experiences with yoga from myself, Amy and Susan, but then we also were getting this feedback from the rights holders, right from our patient stakeholders. And so this group moved forward.
Sorry, I had to backpedal there a little bit. Since that time, I'm so proud of what we have done as a team and what has unfolded. I was very fortunate to meet a yoga therapist named Karen Cornelius here in the Orlando area and together, we've been able to build an accessible adapted virtual yoga program for people with aphasia. It started as kind of this feasibility study with our own aphasia community group here in Orlando, getting feedback from them, figuring out how to make the language accessible, what visuals are helpful? What do people with aphasia want from a yoga practice, were there things that they liked, or things that they didn't like. We've had this really long but very informative process of delivering yoga from a yoga therapy perspective, caring experience, and then figuring out what to spend more time on and how to present things verbally and visually. Now I feel like we have this ongoing, strong, adapted yoga community that we're able to offer. We offer it every Friday at 11am. And we have participants from all over the US. We still have a strong group from Florida, from the Orlando area, but we've got people that participate from California, we've got folks from in the middle of the state, we've got people from Kentucky, we've got people from Pittsburgh, we have people from up north. And we also have a participant from Bermuda. It's amazing to see all of these individuals who would have never met each other otherwise come together so that they can have a yoga practice. For some of these folks, they participated in yoga before their stroke, and then had a really hard time getting back into it afterwards because of the language impairment, the language barrier really. Yoga is a very language heavy practice. The modifications that we've made have been really helpful in making it accessible. But then we've also brought in others that never looked at yoga before and experienced it for the first time and have heard their report that they reap the benefits of it. What we're seeing in both our qualitative research, and also in our quantitative research is that people are reporting reduced stress after participating in at least eight weeks of yoga, better sleep quality, and increased resilience. Some have discussed better pain management, so they feel like their pain, although it's not gone away, that they are able to go about their daily life without pain taking as much in terms of resources from them as it did prior. The biggest thing to I mean that sticks out is people are talking about self-acceptance. Yoga has helped them accept where they are right now in their journey. The last thing I'll say along these lines is there is something so powerful about having individuals come together in this group and there's conversation that happens at the beginning and at the end, just like you would if you walked into a yoga studio. I think it's that they're all working on a common goal, in this hour, and very little of what's being done is focused on communication, the effort is taken away. They're really just sharing a space with each other, enjoying that space, doing something that's making them feel good. And they're not having to think about their impairment. There's something really special with this group.
This work has now been funded by Orlando Health, which is our one of our big hospitals in the area. We're working with an interprofessional team and actually bringing yoga therapy into the inpatient rehabilitation program. This has been really neat, because Karen, the yoga therapist, and I are working with an interdisciplinary team of speech-language pathologists, physical therapists, occupational therapists, and recreational therapists. We'll have a group of individuals and all of these different professionals in the same room, and we're getting feedback from the professionals about what they like, what's facilitating this program for them, and what are the barriers. At the end, they will be the ones running this program, and they are very committed to keeping it up and running. We're also of course, getting the feedback from the people with aphasia and other brain injury survivors in this group, as well as their caregivers that are coming in and participating. I think now I can say I've done a good chunk of research in my life, and this area is the most fun and the least amount of work. Everything has happened organically. There has not been a moment where it feels like this really is work, or I don't want to do this. It's all just unfolded so beautifully. I feel so fortunate to be a part of this, I'm so thankful that Project Bridge pushed me into this, in a sense, when I thought I had to put it off for years and years to come. It's been a lot of fun. For our listeners, we have an ongoing yoga program on Friday mornings at 11 am EST, that is run by a yoga therapist who is amazing, and well versed in aphasia. I welcome people to join us.
Janet: I am moved by your story, Lauren, both your individual journey through your doctoral program and finding yoga to help your own self, and then taking that into the aphasia community. Several times you've used the phrase, ‘your journey through life’ or ‘your journey of life’. And isn't that true? We're all on a journey, and it changes year to year, or decade to decade, if you will. It's exciting to know that you're finding a way to connect people with aphasia to a larger community that focuses on yoga, for example, rather than focusing on the impairment that they have living with their aphasia. Thank you for that. It sounds like it's a great success, and I hope it will continue to be so good for you.
Lauren: Thank you.
Janet: Lauren, another area of investigation, you're examining the benefit of motor imagery and home practice, for enhancing treatment outcomes in persons with apraxia of speech. This is a little bit different from yoga and mindfulness. But yet at the same time, it's about what people can do in their own selves, I think to improve their communications and improve their interactions with others. Will you describe this work and your current findings, please?
Lauren: Absolutely. And you really did hit the nail on the head because it does overlap a lot. It's different in that we are working on the impairment here, but the motor imagery piece grew out of what I was seeing with yoga. Many of our participants have hemiparesis, for example, or they might have apraxia of speech or more severe aphasia. When they are unable to produce a certain movement, or unable to say a certain mantra, we tell them just to visualize. If you can't move that arm that is fine, or if you can't move it to the extent that you want to that is okay, just imagine that arm moving. Just imagine or hear yourself saying this affirmation.
Based on what we were doing with the yoga I started digging a little deeper into the research on motor imagery and mental imagery, and that's where this idea arose. Surprisingly, there hasn't been a whole lot of work using motor imagery for rehabilitation of apraxia of speech. There's been a little bit of work in the area of stuttering, and motor imagery is used significantly in sports medicine, athletic training for professional sports, and musical training, and also rehabilitation of limb and gait, but really very little about speech. And so, I found a hole. My thought was maybe this motor imagery piece is a start, it's something that people can do at home without much support, and maybe it will impact their performance, either that day or in a therapy session a few days later. I wrote a grant and it was funded through the National Institutes of Health. The grant focused on looking at the impact that motor imagery has when combined with behavioral speech treatment. My thought moving forward was that I got my Ph.D. not only because I wanted to know more and wanted to create treatment programs, but I wanted to prove to insurance that healing the brain post stroke, or rehabilitation of speech and language post stroke, is not the same as healing a broken bone. It takes a lot more time. It's ongoing. In my time, I have not seen a change in insurance. In fact, I think it's gotten worse. So my thought into this is we've got to give clinicians and people with communication impairments the opportunity to work more from home. What can they do on their own to bolster the impact of those few treatment settings that they actually are getting, if they are treatment seeking individuals. The idea is, the hope is, that through motor imagery, what we're doing is priming the neural network. Patients can go home with targeted stimuli that they're working on, for example, and just imagine themselves saying it accurately, thinking about how the articulators are moving, visualizing themselves being successful. Hopefully, we're priming those networks. Then when they go into that treatment session, those networks are primed and perhaps we see a boost in performance. The hope, the long-term goal, of this is to build a home practice program that can be accessible to people in the comfort of their homes, easily and free of charge. The speech-language pathologist can also interface with the program to put stimuli into it, for example, so that it can support what they're working on in therapy. We're still in the early phases, but we just completed our first qualitative interview after somebody has completed the whole program, and they really liked it. I thought people were going to be bored with motor imagery because we're not yet allowing them to say anything. In the motor imagery piece, we really want to focus on what does imagery add, but they really enjoyed it. Our first participant, what he said was that at first he didn't like it, he thought it was weird. After we went through practice for a few weeks, he would come into the therapy session and we would do a probe and afterwards if I commented that he did really well on that today, or in the treatment session itself, or if I was seeing a lot of success with certain targets, he would say ‘the homework, the homework’. My thought was that he felt like the homework is helping. He was encouraging and felt like it was helping. We've only run a few people through, so right now, it's preliminary findings, but what I'm seeing is a benefit when they are going home and having this opportunity to practice. Even though it's not verbal practice, it's motor imagery, I'm seeing a change when they come into the session. The study itself is funded for three years, and we have the opportunity to provide free therapy for 18 individuals with co-occurring apraxia of speech and aphasia. I'm excited to see what that group data look like, but right now, and with just the conversations that we're having with the folks that are coming through, I feel very optimistic about this program. It will definitely need to grow, I don't want it to be only motor imagery forever. It's a good first step.
Janet: That is very exciting to hear. I look forward to reading the results as you have more and more individuals with apraxia of speech move through your program.
Lauren, as we draw this interview to a close, I wonder if you have some lessons learned that you would share with our listeners, as well as some Monday morning practices, that is actions that we can take on Monday morning to improve our interactions with persons with the aphasia or apraxia of speech.
Lauren: So I think first, and this is reflecting on what I do, I know many individuals out there, whether you are clinically working with the population, or you're doing research, you're in an area where you are giving. We are giving to support a community. The same thing that I tell our caregivers is to do something for you first, that will allow you to continue to give to others. What is something can you identify, something every day. When there's a little bit of something that you can do for yourself that just fuels you to be the best clinician, the best researcher, the best partner, parent, the many hats that people wear, to your community. That may look different for everyone. For some people, maybe it is meditation, for others maybe it's yoga, maybe it's running, maybe it's baking, everybody has their thing, but identify that certain something that gives you the energy and maybe the groundedness to serve your community.
One thing we've touched on, and if you're listening to this podcast, you know this, but listen to our friends with aphasia. Their perspectives give us so much more than we could ever pretend to know. I've learned so much from my friends with aphasia, even moving forward and in my research - thinking that I know what people want, talk to them, and then the realization this actually isn't an issue, this other thing is. Seek better understanding, otherwise, we're going up the wrong ladder and putting our efforts in the wrong area.
Building community through shared interests, that's what I'm trying to do a bit, and also incorporate student involvement; use your resources. With Mission SPEAK we really are trying to build community through shared interests. It's really neat to see how this unfolds. Even when you have a person with a communication impairment or a person with aphasia, who is maybe 30 years older than the student that they're meeting with, there are shared interests. And it's so neat, what they learn from each other and how this partnership grows, and this friendship grows. Then you also have peers, folks who have acquired communication impairments that are close in age with our students, and that takes on a life of its own as well. Try to match people up based on shared interests, or at least having someone that is really eager to learn. Also being open. Building community through shared interests supports what we've done with yoga. Here are folks that are finding peace and community and enjoying this activity together. It could be anything doesn't have to be yoga.
One other is interdisciplinary practices. When we're thinking about our friends with aphasia, not just thinking about the aphasia or stroke, when we're working with our more acute care friends, or those that are still on that rehabilitation trajectory. Stroke Survivors are dealing with more than aphasia, and I think sometimes we can lose sight of that. Making sure that there is an interdisciplinary team or you're offering interdisciplinary supports, asking what else do they need. I find that I've learned so much from my colleagues in physical therapy and occupational therapy. I work closely with an assistive technology professional who has just unlocked for me the world of supports that are out there that help people live well with aphasia, and also with hemiparesis. Supports such as for cooking with hemiparesis, supports for a computer adapted need, supports many things, such as positioning, seating, getting out there and playing sports, again, in an adaptive community. There are so many things that have happened, I think, over the last decade to make things more accessible for people post stroke. Educate yourself on what's out there.
Janet: Those are great ideas. Thank you so very much. And thank you, Lauren, again for taking the time to speak with me today about the Tavistock Distinguished Scholar Award, and about your work in aphasia.
Lauren: Thank you very much for having me.
Janet: You are so welcome.
I would also like to thank our listeners for supporting Aphasia Access Conversations by listening to our podcasts. For references and resources mentioned in today's show, please see our show notes. They are available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, please email us at info@aphasiaaccess.org. For Aphasia Access Conversations, I am Janet Patterson, and thank you again for your ongoing support of Aphasia Access.
Lauren, thank you for being with me today and congratulations on being named a Tavistock Distinguished Scholar on behalf of Aphasia Access and the Tavistock Trust. I look forward to learning about your future accomplishments, and seeing how you help people with aphasia and apraxia of speech on their journey of life.
References
Madden, E. B., Therrien, M., Bislick, L., Wallace, S. E., Goff-Albritton, R., Vilfort-Garces, A., Constantino, C. & Graven, L. (2023). Caregiving and friendship: Perspectives from care partners of people with aphasia. Topics in Language Disorders, 43(1), 57-75. https://doi.org/10.1097/TLD.0000000000000301
Therrien, M.C., Madden, E.B., Bislick, L. & Wallace, S.E. (2021). Aphasia and friendship: The role and perspectives of Speech-Language Pathologists. American Journal of Speech-Language Pathology, 30(5), 2228-2240. https://doi.org/10.1044/2021_AJSLP-20-00370
Resources
Aphasia Recovery Connection (ARC) https://aphasiarecoveryconnection.org
Aphasia and Related Conditions Research Lab and Mission SPEAK https://healthprofessions.ucf.edu/communication-sciences-disorders/aphasia-and-related-conditions-research-lab/
Project Bridge Project Bridge - Research Community in Communication Disorders
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Manage episode 429205969 series 1285244
Welcome to this Aphasia Access Aphasia Conversations Podcast, a series of conversations about aphasia, the LPAA model, and aphasia programs that follow this model. My name is Janet Patterson. I am a Research Speech-Language Pathologist at the VA Northern California Healthcare System in Martinez, California, and a member of the Aphasia Access Conversations Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their efforts in engaging with persons with aphasia and their families through a variety of educational materials and resources. I am the host for our episode that will feature Lauren Bislick, in which you will hear about friendship, yoga, mental imagery and aphasia. These Show Notes accompany the conversation with Lauren but are not a verbatim transcript.
In today’s episode you will hear about:
the value of friendship in our lives and Mission SPEAK,
ideas for creating an accessible yoga program for person with aphasia, and
the value of mental imagery.
Dr. Janet Patterson: Welcome to this edition of Aphasia Access Conversations, a series of conversations about the LPAA model and aphasia programs that follow this model. My name is Janet Patterson, and I'm a research speech language pathologist at the VA Northern California Healthcare System in Martinez, California. Today I am delighted to be speaking with Dr. Lauren Bislick, a newly minted Associate Professor at the University of Central Florida, in the School of Communication Sciences and Disorders. Lauren is also the director of the UCF Aphasia House, and the director of the Aphasia and Related Conditions Research Lab. Across her work efforts, Lauren investigates the diagnosis and treatment of acquired apraxia of speech and aphasia, the value of mindful body practices such as yoga, friendship development, and interprofessional education and practice.
In 2023, Lauren was named a Distinguished Scholar USA by the Tavistock Trust for Aphasia UK. The Tavistock Trust aims to help improve the quality of life for those with aphasia, their families and care partners by addressing research capacity related to quality-of-life issues in aphasia. Congratulations on receiving this honor, Lauren. Aphasia Access collaborates with the Tavistock Trust for Aphasia in selecting the awardees and is pleased to have the opportunity to discuss their work and the influence of the Tavistock award.
Welcome Lauren, to Aphasia Access Conversations.
Dr. Lauren Bislick: Thank you, Janet, and thank you Aphasia Access for having me. Also thank you to the Tavistock Trust for the review team for nominating me and for selecting me. I'm truly very honored to be a recipient of this award.
Janet: It's a well-deserved award. Lauren, as we said, you were named a Tavistock Trust, Distinguished Scholar USA for 2023. You join a talented and dedicated group of individuals in this award. How does receiving the Tavistock award influence your clinical and research efforts in aphasia?
Lauren: First, I'll say again, I was truly honored to receive this award and was definitely surprised. The nomination announcement occurred at the Clinical Aphasiology Conference, and they didn't give us a heads up that the announcement was coming through, so I was very surprised. I think in terms of how this has influenced my clinical and research efforts as an academic, and as a clinician. I think a lot of people can relate to that feeling of imposter syndrome, and so receiving this award has helped me push that feeling to the side a little bit in some aspects of my work and of what I do. It's also allowed me to feel very proud about what I've been able to do. but more so through my collaborations and my students and the community that we have at UCF. It's allowed me to grow connection. Since receiving this award, people have reached out to me to talk about collaboration or wanting my help in terms of more of a consultant role. It's allowed myself and my lab to reach a larger group of people and has definitely supported that emphasis on quality-of-life work, which is not necessarily the training that I focused on when I was in my doctoral program. That’s been something that I've come into in my time as an assistant faculty member or a junior researcher. It feels very good to be acknowledged for that and for these lines of work being supported.
Janet: And well deserved, for certain. Lauren, I would like to begin by asking you about your recent work investigating the role of friendship for persons with aphasia. I believe in the power of friendship and community during joyful times, and also during sad times in one's life. One of the unfortunate consequences of aphasia can be the loss or diminishing of friendships, or the communication skills important to developing and sustaining friendship and community. How did you become interested in this aspect of aphasia? And what conclusions have you drawn from your research?
Lauren: Thank you for this question. One of the things that I talk about frequently in both my aphasia course and the motor speech disorders for our graduate students, is how individuals with acquired communication disorders, whether it be linguistic, or motor based, is that their social circles get smaller, and we know that's a problem in life. Friendship is an essential component of quality of life, and as you said, whether celebrating the good things or you're going through a hard time you need those friends. This is an important area that I believe gets overlooked although now we have a couple of different groups looking at friendship and aphasia, which is wonderful. I actually have to thank Dr. Elizabeth Brookshire Madden for pulling me into this work. She is at Florida State University, and I like to call us aphasia sisters. We went through the same doctoral program, and she was one year behind me. We became very close during that time, both as friends, but also in the work that we do. [Aphasia Access note: Elizabeth Madden was selected as a Tavistock Distinguished Scholar USA in 2024.]
One of the other faculty members at Florida State University, Michelle Therrien, does work on friendship, but in the pediatric world. This grew out of conversations between Liz and Michelle, where they started talking about how we can look at friendship and aphasia. Clearly, we all believe it's an issue, but it hasn’t been well investigated. That was shortly before the team Project Bridge Conference, which is really what helped initiate this kind of area of research for our group. Liz and I met at the 2018 Project Bridge conference and started facilitating a friendship group; she took the lead in this area. I got pulled to the yoga group, which we'll talk about later. Liz talked with a number of care partners of individuals with aphasia, and started discussing their social groups, and then friendship. Leaving that conference, she had some really great ideas about where to go next and what was needed in the area of friendship. From there grew her team of myself, Michelle Therrien, Sarah Wallace, at the University of Pittsburgh and Rachel Albritton, who's also at FSU.
In our first study, we did a survey with SLPs trying to ask if SLPs see friendship as being an issue? You know, is this us projecting, or is this something that clinical speech-language pathologists are seeing as an issue? If so, are we addressing it in the field? What that initial study showed us was that, yes, SLPs report that their clients are experiencing loss or difficulty with friendships. They also reported that there are barriers, there aren't assessments that ask about friendships, and there aren't interventions. So, while they see this as an important thing, and something that SLPs believe that this was within our scope of practice, they need a little more guidance as to how to support people with aphasia in terms of maintaining friendships, and then also developing friendships.
Following that study, we then spoke to people with aphasia and also spoke to caregivers of people with aphasia to get their perspectives and their lived experiences. What happens to friendship, immediately after a stroke? In that acute phase? What happens to friendship during that chronic phase? And then where are they now? What we found through these conversations is that many individuals reported that their friendships had changed after they acquired aphasia, both in the acute phase and the chronic stages. The same could be said for caregivers as they are navigating this world as caregivers. They are experiencing changes in their friendships. With aphasia being a chronic condition, this is something that people are living with for the rest of their lives. Friends can kind of be there in the beginning, and that acute care phase where they send messages or come by to say hello and show their support. As they realize that the communication impairment isn't going away, they don't know what to do and may get a little uncomfortable, feeling bad that they don't understand their friend with aphasia, or they don't know how to support them in their communication, or this problem isn't disappearing. This is me projecting, but I believe that's what's happening and what we're seeing is that people with aphasia, and their caregivers are reporting this loss. They also are reporting gaining new friends as they become ingrained in social groups. They meet other people with aphasia or care partners of other individuals with aphasia and develop friendships that way. They are also reporting smaller social groups, smaller groups of friends from their pre-aphasia life, dwindling for a lot of people. We think from our research what we're finding is that we really need interventions that target friendship maintenance and development. Some of that may be as simple as providing education, inviting friends into the therapy room. We do this with care partners, we can also offer this to friends to see how we are interacting with your loved one with aphasia. We can provide key tools to support communication; I really think a big piece of it is education. We’ve got to find the best way to navigate this in the clinical world. I think that's the next step not only for our group, but for the other groups that are looking at Friendship.
Janet: Lauren, you make some very good points in those comments. I wonder, do you have some brief thoughts or very specific ideas about how as clinicians, we can act in ways to optimize the friendship activities of our clients, or their care partners, recognizing though, that everyone has different styles and needs for friendship? It's like you say, we should not be projecting our desires and our styles and our needs onto our patients, but rather listen to them and figure out what their needs and desires are?
Lauren: Number one, right there, is listening to our clients, listening to their loved ones, what do they need? As I mentioned before, I think education is a really big piece of this. That may mean just having some materials as a speech-language pathologist that you can send home with family members that they can give to friends, right, so not just materials for that care partner, or the person with aphasia, but materials for friends. Here's something that will educate you a little bit on what aphasia is, there are some ways that you can successfully communicate with your friend with aphasia, here's what to expect. I think some of it is people just don't understand. They don't live in our world clinically, working with people with aphasia, working with people with communication disorders. For some, it's that they've never been exposed to, and so there's a discomfort with the unknown. I think education is huge. Also inviting friends. If you're going to have a counseling session with a care partner, and a person with aphasia, and their loved one, would they like friends to be at that table? Ask them. They may not, they may want it just for them and to be quiet and personal, but they may have some really close friends that they know they're going to lean on and want to be there. Opening the opportunity to invite other individuals and also inviting friends to support groups. Bringing friends to support groups, I think, would also be a space where friends then can observe interactions among people with aphasia, as well as their loved ones, and can have an opportunity to interact with other people with aphasia. So those are a few things that I think we can do right now. There are through many of the different resources like ARC [Aphasia Recovery Connection], for example, there are opportunities for education, communication partner training, and those are things that we can also plug friends into
Janet: Those are some very good ideas, Lauren, very good ideas. You have also worked to address the isolation felt by people with aphasia, and severe acquired communication impairment through your lab’s Mission SPEAK program. Can you tell us more about this program, please?
Lauren: Absolutely. Mission SPEAK stands for Mission to Promote Socialization, Participation, Engagement, Advocacy and Kindness, for people with severe acquired communication disorders. This grew out of a lack of participation among some of our community members who had more severe communication impairments. They felt that they were just unable to be successful in a group setting, and tried some of the aphasia support groups, but didn't feel like they were being heard, or that they had equal opportunity, or were just frustrated by it. It didn't feel right for them. And so, I started thinking about, well, how can we provide an opportunity for individuals who feel this way, or maybe they're just more introverted which could be another piece to why they don't want that large group. How can we provide opportunities where they're still getting to practice communication in a safe space, develop friendships, and just be able to interact to combat those feelings of isolation that people with aphasia and other acquired communication disorders report. Mission SPEAK is a program where the students in my lab, both undergraduate and graduate students, some are CSD, some pre-med, some in their med programs, where they have the opportunity to meet with an individual with aphasia or another acquired communication disorder on a weekly basis to have a conversation. It’s all via Zoom. These meetings can take any shape that the person with aphasia or the communication impairment and the student want to go with it. We have some individuals that meet to actually practice what they're learning in therapy and so the clinician has connected with my students to say ‘Hey, can you go over this homework with them or allow them opportunities to practice’ and sometimes the clinician will hop on to Zoom as well. We also have opportunities such as one of my students and one of our friends with aphasia are reading a book together and so they do shared reading. In another pair we have a young man who really just needs interaction, so he meets with two different students, and they just have conversations over shared interests. Sometimes his mom is there to help support communication. We see as time goes on that as the individuals are getting more comfortable with each other, and the students are getting more comfortable, there are emerging areas where there are overlapping interests, or maybe the student is learning from the person with aphasia say, about sports, for example. We have one group where our friend with aphasia is a huge sports fanatic. He was meeting with two young women in our undergraduate program who knew very little about some of these sports and so he's taught them. It's really fun. Again, they meet at least once a week. We have one individual that at one point was meeting with three separate students three times a week. The friendships that form from these smaller groups are something special. For some of these folks it's intergenerational, for others they are peers. What you see is that the students don't want to give up this opportunity. I have some students who have been meeting with their friend with aphasia for over two years now. They've gone from their undergraduate programs through their graduate programs, and they've just developed a friendship and don't want to let go of it, which I think is phenomenal. This is something that I would like to see open up as chapters across different universities. Students want these interactions so badly and there are so many people with acquired communication disorders that need an outlet, and that would benefit from this safe space to work on their skills to just have fun. It really can be whatever they want it to be.
Janet: What a great idea. You've got my brain spinning. And I've been making notes about some clients I've been thinking about who would benefit from exactly what you're saying, just the opportunity to have an interaction and conversation. Wonderful.
Lauren, another avenue that you've been interested in is the practice of mindfulness, especially yoga practice. How do you see yoga practice supporting the LPAA philosophy of living well, with aphasia?
Lauren: Love this question. I have to backpedal just a little bit to answer it to say, I was never a yogi until I started my doctoral program. If you know me, I'm 5’11”. I'm tall and I grew up playing all the tall-person sports and pretty much was of the mindset that if you're not huffing and puffing and soaked in sweat, then it wasn't exercise or it wasn't beneficial. Well, I was wrong. In my doctoral program, I was dealing with imposter syndrome. I'm also a first-generation college student. Being at that level, and with all the different hurdles that a doctoral program offers, I was really feeling that imposter syndrome and anxiety that surrounds it. Somebody suggested starting yoga, and it's what got me out of bed in the morning, and really grounded me to face my day and feel as confident as I could in my skin during that time. After doing it for a few years, I just had this aha moment of, wow, I would love to bring this to the aphasia community. It's helped me with my anxieties and my areas of self-doubt and has just allowed me to also be present. I can only imagine for some folks with aphasia the anxiety that they may have surrounding communication, or just feeling okay with where they are in this part of their journey and that acceptance piece. Then I pushed it off. I said, well, I can't do that now I have to wait until I get tenure, I've got to focus on this very systematic treatment development program. I can't do more things.
Then in 2019 when I was an assistant professor, just my first year at UCF, I went to Project Bridge again thank you, Jackie Hinkley. While I was there, there was a small group that consisted of Dr. Amy Dietz and her friend with aphasia, Terry, who were at a table, and they were promoting yoga for aphasia. I was walking around, and I saw that table and I thought it was amazing. I went over there to have a conversation with them. Amy Dietz had just finished a small pilot project looking at methodology of how we make yoga accessible. And so I talked with Amy and I talked with her friend with aphasia, Terry, about their experience, and then more people started coming to that table; Susan Duncan, who is aphasiologist and a speech-language pathologist and a yoga practitioner, and then also a person with aphasia, Chase Rushlow and his mom, Deanna Rushlow. All the whole rest of that conference, we hung together, and started planning out the trajectory of how to bring accessible yoga to people with aphasia and to the aphasia community. Chase had experienced yoga, post stroke, and as a person living with aphasia with his mom, they shared their story about how it brought them together, and how it grounded him, how he found Zen. It was so fruitful being able to have these conversations with people with aphasia, and also their care partners, and them telling us what yoga has done for them. Not only did we all have our own experiences with yoga from myself, Amy and Susan, but then we also were getting this feedback from the rights holders, right from our patient stakeholders. And so this group moved forward.
Sorry, I had to backpedal there a little bit. Since that time, I'm so proud of what we have done as a team and what has unfolded. I was very fortunate to meet a yoga therapist named Karen Cornelius here in the Orlando area and together, we've been able to build an accessible adapted virtual yoga program for people with aphasia. It started as kind of this feasibility study with our own aphasia community group here in Orlando, getting feedback from them, figuring out how to make the language accessible, what visuals are helpful? What do people with aphasia want from a yoga practice, were there things that they liked, or things that they didn't like. We've had this really long but very informative process of delivering yoga from a yoga therapy perspective, caring experience, and then figuring out what to spend more time on and how to present things verbally and visually. Now I feel like we have this ongoing, strong, adapted yoga community that we're able to offer. We offer it every Friday at 11am. And we have participants from all over the US. We still have a strong group from Florida, from the Orlando area, but we've got people that participate from California, we've got folks from in the middle of the state, we've got people from Kentucky, we've got people from Pittsburgh, we have people from up north. And we also have a participant from Bermuda. It's amazing to see all of these individuals who would have never met each other otherwise come together so that they can have a yoga practice. For some of these folks, they participated in yoga before their stroke, and then had a really hard time getting back into it afterwards because of the language impairment, the language barrier really. Yoga is a very language heavy practice. The modifications that we've made have been really helpful in making it accessible. But then we've also brought in others that never looked at yoga before and experienced it for the first time and have heard their report that they reap the benefits of it. What we're seeing in both our qualitative research, and also in our quantitative research is that people are reporting reduced stress after participating in at least eight weeks of yoga, better sleep quality, and increased resilience. Some have discussed better pain management, so they feel like their pain, although it's not gone away, that they are able to go about their daily life without pain taking as much in terms of resources from them as it did prior. The biggest thing to I mean that sticks out is people are talking about self-acceptance. Yoga has helped them accept where they are right now in their journey. The last thing I'll say along these lines is there is something so powerful about having individuals come together in this group and there's conversation that happens at the beginning and at the end, just like you would if you walked into a yoga studio. I think it's that they're all working on a common goal, in this hour, and very little of what's being done is focused on communication, the effort is taken away. They're really just sharing a space with each other, enjoying that space, doing something that's making them feel good. And they're not having to think about their impairment. There's something really special with this group.
This work has now been funded by Orlando Health, which is our one of our big hospitals in the area. We're working with an interprofessional team and actually bringing yoga therapy into the inpatient rehabilitation program. This has been really neat, because Karen, the yoga therapist, and I are working with an interdisciplinary team of speech-language pathologists, physical therapists, occupational therapists, and recreational therapists. We'll have a group of individuals and all of these different professionals in the same room, and we're getting feedback from the professionals about what they like, what's facilitating this program for them, and what are the barriers. At the end, they will be the ones running this program, and they are very committed to keeping it up and running. We're also of course, getting the feedback from the people with aphasia and other brain injury survivors in this group, as well as their caregivers that are coming in and participating. I think now I can say I've done a good chunk of research in my life, and this area is the most fun and the least amount of work. Everything has happened organically. There has not been a moment where it feels like this really is work, or I don't want to do this. It's all just unfolded so beautifully. I feel so fortunate to be a part of this, I'm so thankful that Project Bridge pushed me into this, in a sense, when I thought I had to put it off for years and years to come. It's been a lot of fun. For our listeners, we have an ongoing yoga program on Friday mornings at 11 am EST, that is run by a yoga therapist who is amazing, and well versed in aphasia. I welcome people to join us.
Janet: I am moved by your story, Lauren, both your individual journey through your doctoral program and finding yoga to help your own self, and then taking that into the aphasia community. Several times you've used the phrase, ‘your journey through life’ or ‘your journey of life’. And isn't that true? We're all on a journey, and it changes year to year, or decade to decade, if you will. It's exciting to know that you're finding a way to connect people with aphasia to a larger community that focuses on yoga, for example, rather than focusing on the impairment that they have living with their aphasia. Thank you for that. It sounds like it's a great success, and I hope it will continue to be so good for you.
Lauren: Thank you.
Janet: Lauren, another area of investigation, you're examining the benefit of motor imagery and home practice, for enhancing treatment outcomes in persons with apraxia of speech. This is a little bit different from yoga and mindfulness. But yet at the same time, it's about what people can do in their own selves, I think to improve their communications and improve their interactions with others. Will you describe this work and your current findings, please?
Lauren: Absolutely. And you really did hit the nail on the head because it does overlap a lot. It's different in that we are working on the impairment here, but the motor imagery piece grew out of what I was seeing with yoga. Many of our participants have hemiparesis, for example, or they might have apraxia of speech or more severe aphasia. When they are unable to produce a certain movement, or unable to say a certain mantra, we tell them just to visualize. If you can't move that arm that is fine, or if you can't move it to the extent that you want to that is okay, just imagine that arm moving. Just imagine or hear yourself saying this affirmation.
Based on what we were doing with the yoga I started digging a little deeper into the research on motor imagery and mental imagery, and that's where this idea arose. Surprisingly, there hasn't been a whole lot of work using motor imagery for rehabilitation of apraxia of speech. There's been a little bit of work in the area of stuttering, and motor imagery is used significantly in sports medicine, athletic training for professional sports, and musical training, and also rehabilitation of limb and gait, but really very little about speech. And so, I found a hole. My thought was maybe this motor imagery piece is a start, it's something that people can do at home without much support, and maybe it will impact their performance, either that day or in a therapy session a few days later. I wrote a grant and it was funded through the National Institutes of Health. The grant focused on looking at the impact that motor imagery has when combined with behavioral speech treatment. My thought moving forward was that I got my Ph.D. not only because I wanted to know more and wanted to create treatment programs, but I wanted to prove to insurance that healing the brain post stroke, or rehabilitation of speech and language post stroke, is not the same as healing a broken bone. It takes a lot more time. It's ongoing. In my time, I have not seen a change in insurance. In fact, I think it's gotten worse. So my thought into this is we've got to give clinicians and people with communication impairments the opportunity to work more from home. What can they do on their own to bolster the impact of those few treatment settings that they actually are getting, if they are treatment seeking individuals. The idea is, the hope is, that through motor imagery, what we're doing is priming the neural network. Patients can go home with targeted stimuli that they're working on, for example, and just imagine themselves saying it accurately, thinking about how the articulators are moving, visualizing themselves being successful. Hopefully, we're priming those networks. Then when they go into that treatment session, those networks are primed and perhaps we see a boost in performance. The hope, the long-term goal, of this is to build a home practice program that can be accessible to people in the comfort of their homes, easily and free of charge. The speech-language pathologist can also interface with the program to put stimuli into it, for example, so that it can support what they're working on in therapy. We're still in the early phases, but we just completed our first qualitative interview after somebody has completed the whole program, and they really liked it. I thought people were going to be bored with motor imagery because we're not yet allowing them to say anything. In the motor imagery piece, we really want to focus on what does imagery add, but they really enjoyed it. Our first participant, what he said was that at first he didn't like it, he thought it was weird. After we went through practice for a few weeks, he would come into the therapy session and we would do a probe and afterwards if I commented that he did really well on that today, or in the treatment session itself, or if I was seeing a lot of success with certain targets, he would say ‘the homework, the homework’. My thought was that he felt like the homework is helping. He was encouraging and felt like it was helping. We've only run a few people through, so right now, it's preliminary findings, but what I'm seeing is a benefit when they are going home and having this opportunity to practice. Even though it's not verbal practice, it's motor imagery, I'm seeing a change when they come into the session. The study itself is funded for three years, and we have the opportunity to provide free therapy for 18 individuals with co-occurring apraxia of speech and aphasia. I'm excited to see what that group data look like, but right now, and with just the conversations that we're having with the folks that are coming through, I feel very optimistic about this program. It will definitely need to grow, I don't want it to be only motor imagery forever. It's a good first step.
Janet: That is very exciting to hear. I look forward to reading the results as you have more and more individuals with apraxia of speech move through your program.
Lauren, as we draw this interview to a close, I wonder if you have some lessons learned that you would share with our listeners, as well as some Monday morning practices, that is actions that we can take on Monday morning to improve our interactions with persons with the aphasia or apraxia of speech.
Lauren: So I think first, and this is reflecting on what I do, I know many individuals out there, whether you are clinically working with the population, or you're doing research, you're in an area where you are giving. We are giving to support a community. The same thing that I tell our caregivers is to do something for you first, that will allow you to continue to give to others. What is something can you identify, something every day. When there's a little bit of something that you can do for yourself that just fuels you to be the best clinician, the best researcher, the best partner, parent, the many hats that people wear, to your community. That may look different for everyone. For some people, maybe it is meditation, for others maybe it's yoga, maybe it's running, maybe it's baking, everybody has their thing, but identify that certain something that gives you the energy and maybe the groundedness to serve your community.
One thing we've touched on, and if you're listening to this podcast, you know this, but listen to our friends with aphasia. Their perspectives give us so much more than we could ever pretend to know. I've learned so much from my friends with aphasia, even moving forward and in my research - thinking that I know what people want, talk to them, and then the realization this actually isn't an issue, this other thing is. Seek better understanding, otherwise, we're going up the wrong ladder and putting our efforts in the wrong area.
Building community through shared interests, that's what I'm trying to do a bit, and also incorporate student involvement; use your resources. With Mission SPEAK we really are trying to build community through shared interests. It's really neat to see how this unfolds. Even when you have a person with a communication impairment or a person with aphasia, who is maybe 30 years older than the student that they're meeting with, there are shared interests. And it's so neat, what they learn from each other and how this partnership grows, and this friendship grows. Then you also have peers, folks who have acquired communication impairments that are close in age with our students, and that takes on a life of its own as well. Try to match people up based on shared interests, or at least having someone that is really eager to learn. Also being open. Building community through shared interests supports what we've done with yoga. Here are folks that are finding peace and community and enjoying this activity together. It could be anything doesn't have to be yoga.
One other is interdisciplinary practices. When we're thinking about our friends with aphasia, not just thinking about the aphasia or stroke, when we're working with our more acute care friends, or those that are still on that rehabilitation trajectory. Stroke Survivors are dealing with more than aphasia, and I think sometimes we can lose sight of that. Making sure that there is an interdisciplinary team or you're offering interdisciplinary supports, asking what else do they need. I find that I've learned so much from my colleagues in physical therapy and occupational therapy. I work closely with an assistive technology professional who has just unlocked for me the world of supports that are out there that help people live well with aphasia, and also with hemiparesis. Supports such as for cooking with hemiparesis, supports for a computer adapted need, supports many things, such as positioning, seating, getting out there and playing sports, again, in an adaptive community. There are so many things that have happened, I think, over the last decade to make things more accessible for people post stroke. Educate yourself on what's out there.
Janet: Those are great ideas. Thank you so very much. And thank you, Lauren, again for taking the time to speak with me today about the Tavistock Distinguished Scholar Award, and about your work in aphasia.
Lauren: Thank you very much for having me.
Janet: You are so welcome.
I would also like to thank our listeners for supporting Aphasia Access Conversations by listening to our podcasts. For references and resources mentioned in today's show, please see our show notes. They are available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, please email us at info@aphasiaaccess.org. For Aphasia Access Conversations, I am Janet Patterson, and thank you again for your ongoing support of Aphasia Access.
Lauren, thank you for being with me today and congratulations on being named a Tavistock Distinguished Scholar on behalf of Aphasia Access and the Tavistock Trust. I look forward to learning about your future accomplishments, and seeing how you help people with aphasia and apraxia of speech on their journey of life.
References
Madden, E. B., Therrien, M., Bislick, L., Wallace, S. E., Goff-Albritton, R., Vilfort-Garces, A., Constantino, C. & Graven, L. (2023). Caregiving and friendship: Perspectives from care partners of people with aphasia. Topics in Language Disorders, 43(1), 57-75. https://doi.org/10.1097/TLD.0000000000000301
Therrien, M.C., Madden, E.B., Bislick, L. & Wallace, S.E. (2021). Aphasia and friendship: The role and perspectives of Speech-Language Pathologists. American Journal of Speech-Language Pathology, 30(5), 2228-2240. https://doi.org/10.1044/2021_AJSLP-20-00370
Resources
Aphasia Recovery Connection (ARC) https://aphasiarecoveryconnection.org
Aphasia and Related Conditions Research Lab and Mission SPEAK https://healthprofessions.ucf.edu/communication-sciences-disorders/aphasia-and-related-conditions-research-lab/
Project Bridge Project Bridge - Research Community in Communication Disorders
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