Episode #110: Putting family at the center of care from parents with aphasia to PPA: In conversation with Lauren Schwabish

Welcome to the Aphasia Access Conversations Podcast. I'm Jerry Hoepner. I'm a professor at the University of Wisconsin – Eau Claire and co-facilitator of the Chippewa Valley Aphasia Camp, Blugold Brain Injury Group, Mayo Brain Injury Group, and Thursday Night Poets. 

I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.

I'm today's host for an episode that will feature Lauren Schwabish. In this episode, we'll be discussing Lauren’s work on groups for parents with Aphasia and person-centered approaches to primary progressive aphasia interventions.

Biosketch:

Lauren Schwabish M.S., CCC-SLP is the owner of Neuro Speech Services, a private practice based in Northern Virginia, specializing in person-centered assessment and treatment of cognitive-communicative disorders related to stroke, brain injury, mild cognitive impairment, ADHD, and other neurologic and neurodegenerative conditions. Lauren received her Bachelor of Science degree with Honors in Communicative Disorders from the University of Wisconsin-Madison and holds a master’s degree in Communication Sciences from Hunter College of the City University of New York. She is licensed in the Commonwealth of Virginia and state of Maryland and is a certified member of the American Speech Language Hearing Association. She has over 23 years of experience working in hospitals and acute rehabilitation centers and is passionate about providing meaningful and accessible health education about the brain to patients, families, and health care professionals. Lauren is committed to empowering communities with evidence-based information and best practices in brain health behaviors.

 

Take aways:

1. LPAA is vital to understanding what the client wants and needs from you as a clinician
2. Parents with aphasia encounter many of the same challenges that all parents experience as they’re raising small children but this is further complicated by aphasia
3. While work and other community obligations may go on hold after aphasia, parenting doesn’t go on hold
4. People with aphasia who are in the process of raising children benefit from peers who understand what they’re going through
5. People with PPA are still connected to their family and kids and need support in navigating everyday conversations that are necessary to parenting and participating in their children’s lives
6. Group therapy provides a safe and supportive environment for people with PPA to find supports or relate to others that have similar experiences as them
7. Learn how to be “a purveyor of hope” for individuals with PPA and their families

Interview Transcript:

Jerry Hoepner: Well, welcome, Lauren. I'm really excited to have this conversation with you today. And I thought maybe it would be a good thing. If we kind of begin by introducing our readers to your experience as a speech language pathologist, and kind of what led you along this life path of participation approaches to Aphasia and that person centered approach which is really central to what it sounds like you do in your in your workplace setting.

Lauren Schwabish: Yes, thank you so much for having me. I'm a big fan of aphasia access and the podcast is on my it's on my feed routinely. So it's really an honor to be here. I am like I said, a speech language pathologist for 23 years. I started out in I worked in New York City in a really big city hospital. There was, you know 2 campuses, a thousand beds each. It was literally everything under the sun, and I think that was my first experience. In really getting to the heart of what a what drives a person, what a person is all about because I was so different from the population. I came from a different place. I had a different educational trajectory. You know, this was a city hospital that had, mostly an underserved population, and it was in New York City. So it was tremendously, culturally diverse and one of the things I recognized instantly was that the way I would sort of drive compassionate and effective care was to really understand who I was working with and so I think from the from the jump, you know, just really having the humility to say, I need to sit and listen and understand this individual so that I can support their recovery from you know stroke, trauma you know, sort of acute illness. That was something that really just ended up making sense. So that was sort of my foundation. And then I moved into acute rehab into a hospital in Northern Virginia, where I am now and really just found, even though I was in a sort of a very medical setting, that connecting with the individual was absolutely the most important thing, and it was how I really felt that I could you know, show others how to do effective therapy. So I didn't know that it was life participation approach, but it was just really about understanding what the person needed to communicate about and in the hospital it's a different setting than in the community where I am now in private practice. But 21 years later, when I started my own private practice, that's when I really found LPAA as a principal, and could start to put some of the theory behind what I'd been doing all along.

Jerry Hoepner: Nice, you know. It's funny. I was just having a conversation before we started this conversation, with Tami Howe, who is going to be doing a future conversation about the role of environment and accessibility in communication with individuals, with aphasia. And one of the things that we kept coming back to is exactly what you said, just getting just spending time listening and getting to know who that individual is as a starting point for really recognizing authentically what that person's wants, needs beliefs, values-  all of those things are and I think that's just a wonderful starting point for thinking about life participation, because it's easy to jump straight into the therapy or the assessment pieces. But what we need most is just to put our listening ears on, and really find out who that individual is and what makes them tick. So wonderful place to start.

Lauren Schwabish: Yeah, and I would say that sometimes, especially when you know thinking about that acute rehab or acute care setting when someone's, you know, potentially very limited in their life participation, what they can do getting to understand like you said their beliefs. You know. What were they doing before they got to where you are? What can they teach you about? It’s really honoring their strengths and sort of who they are prior to this acute illness. And so you can see them as that individual and they oftentimes can tell you more about that than you could. They may be able to from the from the, you know, sort of compromise place that they're in and it just feels right, you know, that's the one thing I tell. You know, when I was in the hospital, and I was working with therapists were so concerned about productivity and so concerned about billing. And just oh, my gosh! I don't think I have time to do this, and for me it's like you have nothing but time to honor this aspect of it, because once you figure out what makes this person tick, what excites them? What kind of music they wanna listen to what they don't like, you know, that's the foundation. And it shouldn't be something that's an afterthought to the skilled, clinical, hard skills that you have. It's really the first step, and it just when it works, it works well. So I think people just have to know that they have to have the permission, right from their environment, from their you know department, their supervisors, their peers, that this is actually very much the most essential ingredient to being an effective therapist.

Jerry Hoepner: Yeah, and what a refreshing way to start. I'd like to say that all therapists in the acute care context and that's the context where I worked for many years. But I'd like to say that they all get that but you're right. People get caught up in the fact that we only have a few days with these people, and we have a little bit of time, and we don't necessarily have time to devote to finding out who that individual is but what you're saying is that's central to being successful in helping them move forward with anything. So I really appreciate that as a grounding starting point and it really makes sense why, we're going to have a conversation today about what we're going to have a conversation about. I know Lauren, we talked about a couple of different topics. One being your passion for working with parents, and the topic of parenting with aphasia and that might seem like a leap to talk about that, and person centered approaches to primary progressive aphasia but when we think about that grounding principle of meaning, the person where they're at finding out what they value, I think it's going to be easy for our listeners to tie those pieces together.

Lauren Schwabish: Definitely cause it's ultimately about a family, right? And it's not just a person with aphasia, but the person with aphasia exists in some sort of family unit, whether it's a partner, a friend, neighbors, kids, grandkids. And so, yeah, one of the things I have been privileged to be in is those 2 spaces? So I think I think, yeah, we can tie them together. And also just to hear that what this looks like with kind of 2 different sort of different populations, you know, thinking about parents with aphasia where the prognosis is typically so favorable, right? It's just lots and lots of improvement. They're typically younger, you know, we're seeing gains and everyone feels fairly optimistic, and that person with Ppa is going in a different direction. Right? But person-centered approaches are vital for each.

Jerry Hoepner: Yeah, that I totally agree. Family is what ties these topics together, and I'm sure we can think of a whole bunch of other related little niches of therapy that are tied together by family as well. So I'm excited to jump into this conversation. And I'm gonna begin with talking a little bit about the topic of parenting with aphasia, just a really interesting and important topic. So why is it so important to have communication groups or parents with aphasia?

Lauren Schwabish: I why, I would say I'm a parent, so I can, I could speak with experience, that parenting itself is a 24/7 situation. And so when you have a parent who's been very suddenly affected by aphasia it is the one task, you know, work goes on hold. And sometimes, you know, operations in the community go on hold because the person's recuperating. But parenting really doesn't ever stop you know, children with, you know, whose parents have had a stroke or brain injury. You know they're up in the hospital. They're part of the therapy process hopefully, and they're in the community, or they're back at home with that individual and so I do think it's really important to give people who are raising children, and I will say, you know, we have lots of people who have raised their children. They're still a parent with aphasia. But this is sort of specifying that these are people who are in the active process of raising younger children and those are the people that are in the communication group that I run through the National Phase Association. When I speak to those parents they really are. They are seeking a safe and compassionate environment to discuss how to raise kids right? And that can range from talking about, how do you discipline a kid when you have aphasia, how do you talk to the teachers that a parent teacher conference? You know, how do you engage? How do you re engage your parenting skills when they've been sort of taken over by family members necessarily. But how do you sort of reenter that role again? And I don't know that for the parents that come to my group. They don't have that in their own parenting community, right? So, the friends that they had who were parents prior to their aphasia. They're not necessarily the same fit as other parents who have aphasia. So, I think that the group environment that we've cultivated is that safe space to talk about, you know, and highs and lows of parenting. Let's face it. Parenting is really hard. So sometimes it's, you know. Everyone just wants a place to kind of vent and again when you're venting with aphasia, it's not always smooth, but it feels really good, just like parents who don't have aphasia.

Jerry Hoepner: Yeah, what a what a terrific summary. And in response to that question, I I'm just gonna go back to the one of your earlier statements, because I think this is so true. When we think about someone in the rehabilitation process work stops and the community services, and all of those kinds of things stop, or at least they change significantly. But parenting doesn't stop as a fellow parent I can. I can guarantee I've got kids who are in college and just outside of college, and parenting still doesn't stop, but to be in the thick of raising small children. That that's definitely a a unique challenge so speaking of that, what are the unique challenges and needs of a person with aphasia who's also raising a child.

Lauren Schwabish: Yeah, you know, when I think about the things that the parents in my group have raised, it's really I mean, it runs the gamut you know some of it is how do you read a book to your child when you cannot read how do you, you know, manage things like. There's one gentleman who's awesome. He had a stroke when his youngest daughter was out, and I think she was like a newborn, or she was essentially an infant. And you know, how do you navigate watching them start out? He was joking kind of at the same level language wise and then she's just accelerating. And you know, how do you navigate that? So, as the child's language is growing? How do you facilitate your own child's language development. We've had one of our survivors is she's made tremendous progress. Many years since she had her stroke. She had a situation where her daughter within high school, and there was a child who committed suicide, and she said, I don't know how to talk about this with my child, but I know I need to right, and that kind of stopped me and my tracks as a parent of high schoolers to think. Gosh! This isn't so much about the aphasia. But how carefully we have to word a conversation like that. Right? So it's really having those serious high stakes conversations. And then some of it's, you know, not as heavy, not as hard. It's kind of how do you, How do you reintegrate yourself with, you know, kids at the playground. How does your kid explain aphasia to their friend who's coming over for a play date, you know. How do you ween a baby, you know, sort of like all different things. So this is where it's sort of like, is it a group for people with aphasia. Is it a parenting group? Well, it's kind of everything, because sometimes we just wanna kind of talk about stuff. And it's you know, last month we talked about, you know, if I gave you a plane ticket and you could go on vacation, you know, where would you go? And would you bring your kids or not? Which was fun. Some people were like, of course, it bring my kids, and some people are like, Heck! No, I'm leaving them at home. I'm going on vacation by myself. So it's really fun. It kind of is the group itself. We really start out with 2 principles, which is what is I have these little smiley face cards, you know what's making you happy and what's kind of a struggle, or, you know, making you feel sort of mad. And that's just a really nice place to launch from.

Jerry Hoepner: Yeah, wow, terrific. And one of the things I kept thinking when you described the loss of kind of kinship or a connection between themselves and other parents who don't have aphasia, who are a parenting, I'm wondering about the relationships between the different parents with aphasia and each other from a peer standpoint. And what that looks like.

Lauren Schwabish: Yeah, one of the women. She's in North Carolina, and she found the group after it had been running for a couple of months, and she says every time she's like, I'm just so glad you guys are out here because I did not know that there were other people like me. So, some of it is just seeing that there's young people who also have aphasia, who are also raising kids. So, some of it's just that environment. One of the things that I think was the most incredible was there's a speech pathologist who's in Texas who runs or she's in a program that think it's sort of an inpatient rehab a residential program. It sounds incredible. She had 3 or 4 young parents with aphasia who had recently come there, and she logged on from that facility and those folks were able to see survivors from, you know, one year, 2 years, 5 years, 7 years. And so, some of it is be able to show people who are just learning, you know, just getting a couple of words. You know, may be able to say the name of their child. Maybe you know one or 2 word phrases to see and experience what recovery looks like. And that was amazing. And one of the women who is in the program has since discharged home. And now she logs on, and it's fun to see her recovering quickly. But I just think that sense of like, and you know we hear it all the time like you just have to keep going. It is a marathon, it is. It is arduous right? And so for them to have that support and the spectrum of recovery. I think that's one of the things that is the most meaningful. Because, you know, it's of course, post direct depression, anxiety, especially for a younger survivor who's not only lost you know their language abilities, but probably it's also facing the fact that they can't return to work. That was one of our topics a couple of months ago. It was someone who was like, yeah, I hope I can get back to work and then come to find out the whole group shared, you know what they used to do for work, and a large majority of them. In fact, I think all of them, you know, in addition to parenting being tough, is they've lost their careers. Which is also a challenging topic. But, at the other hand, some of those long-term survivors say, but you know what? Instead of working, I'm able of, you know, volunteer at my kids school. I'm cheering on the sidelines. I'm attending that concert, and she said, I don't know that I would have had that if I was working. So, you know, I think the silver lining aspect is great, too.

 

Jerry Hoepner: Yeah, absolutely. I think it's so critical. I mean, even outside of the the topic of parenting with aphasia, to have to see people who are at different points along the recovery. And maybe this will come up when we talk about primary, progressive aphasia, too. But, for example, one of the things that we see at aphasia camp is often that people will identify with someone who's a little bit further along in the journey, and they might take sort of a mentorship kind of a role just to be able to say, this is what's coming. And you know, things get better and a little bit easier to handle. It's so positive from that standpoint. But I've seen the reverse true as well to be able to say. You know, this is a person who's longer, or, you know, further along on their primary progressive aphasia journey, and to be able to just know. Okay, so this is coming and I can kind of ground myself and prepare myself for these things. I think there's something really valuable about being able to see that continuum like you described. So

Lauren Schwabish: agreed. And just that sense, you're not alone. You're not the only one who has this experience.

Jerry Hoepner: I'm interested. So I mentioned that sometimes there's these pairings of people along the continuum. Do you see those relationships growing? And do people connect with each other outside of group or have particularly close connections with someone within the group.

Lauren Schwabish: Yeah, well, I think the group is pretty new. So, we're sort of cultivating that I would say, one of the things, though, is, there's one woman shared that now that her kids this was back in, I think August, her kids had gone back to school, and she was like, I don't know what to do with my time. And another survivor basically sent me a list of ideas. She's like a support group Guru. She attends some in the Uk, some here. She really knew of a ton of resources, and she sent those to me to pass on to this other individual. So that's probably a great example of, you know, one person wanting to really cheer on the other one. There's that same woman who offered the resources is lives in the Chicago land area, and we had a one person who moved to that area was really fun. She ended up giving us a tour of her house on our in our group, which is really great. But that was a connection we made where we said, Hey, you know what? What are you know, the the strokes, survivor communities like in that area in Chicago. So that was really neat, too. So I think you know anytime I feel as a facilitator when I have a chance to match someone to either to peer to peer, or just for resources. In general. You know, one woman is like, I really wanna read. She has a 14-year-old, and she's just like there's a lot of reading that goes on with like middle school and high school and so we were just sort of like troubleshooting together, you know, on the side, just hey, you know, here's an audio book that we might want to try or here's something you could pair with an audio book. So, you know, it's it's just we have a space to share how you're feeling resources, I think, become evident when you're in that supportive environment.

Jerry Hoepner: Yeah, absolutely. I think those are perfect great examples of that connection between people and that resource and mentorship that they can provide to one another one another. I was kind of internally laughing when you you mentioned the middle schooler with reading, because I was thinking about when your children reach high school and college, and they begin to pass you up in terms of knowledge and intelligence. That's a hard time for any parent. Definitely for someone with aphasia or we're even talking about how to handle like cell phones and social media and technology. And like you think of how fast pace. That is, I can barely keep up. How does someone who has, you know, issues, maybe even with like sensory overload you know where there's video games going on and when you're really at that point, and you have to say something how do you find the words, you know? And so actually, one of our, you know, again, longer term survivors like, you know what? I just text my kids. And we have a couple of emojis where they know what I'm saying, you know. So I think it's really neat. And that way, too. It's just sharing those examples of like modern day parenting. And what does it look like when you have aphasia? Yeah, that's fantastic. One of the things I was going to ask you about is the kinds of topics that come up. But you've shared a few social media and how to support someone with reading and all of those topics. But what other kinds of topics typically come up in these groups.

 

Lauren Schwabish: I think for the parenting group, it's really about, how do you keep your language skills going? Because I think a lot of these folks are, you know, not necessarily continuing to receive skilled interventions from speech pathologists. And so some of it is. Just try to like, how do I use my environment? Or how do I have strategies to sort of resume participation? There was one woman early on in the group, so it was a smaller group and she was going to meetings with her High School senior about college and graduation. And so we were sort of just coming up with, like, what are some words that you'd wanna have ready, you know, application. And you know, tuition. And so even just kind of brainstorming a way to support her participation in that. So that was something that came up. A lot of it is sort of what are your kids excited about? And I think that that's one of the things I always close that group with is gratitude. Just because it's such a wonderful it's brain, healthy activity. And almost universally the parents are talking about their kids. They're grateful for their kids. They're grateful that they got to you know that their kid was well behaved at school, or they're grateful that they got to go on vacation, or they're grateful that they want to swim meet. So sometimes it's also a chance to brag, you know, to really shine a light on the things that your kid is doing. You know, that's a fun thing to be able to do. And again, in a fast-paced environment, you know, when they're with their neighbors, or they're with the kids at, you know, other parents at school things just go quickly. And so when it's a time to just slow down, and we'll just sort of popcorn it around the Zoom group. Where everyone has a chance to just share something that their kid is up to and that's been really neat to one of our members is from Canada in BC, and so we didn't really know, you know, geographically where he was. So I was. You know we were looking at the map, and we were figuring out where everyone else is from, too. So sometimes it is just it's about that community and some hot topics that are coming up. Weather was one of them where everyone was talking about you know the wildfires where he was, or how do you, parents when it's so hot out. You know, it's really typical struggles. It's just, in a way, it's probably not that different from a normal parenting conversation. We just use language support and give people tools. They need to be successful contributors to that conversation.

Jerry Hoepner: That's a pretty strong litmus test for being meaningful and person centered to be able to say, it's just the stuff that every parent talks about. Now, this is just a community that scaffolds that for people with aphasia, so that they are a part of those conversations and can be a part of those conversations I love that that's fantastic. Yeah, really wonderful. Well, knowing what you know now, and other, what other resources would you like to see available? To this community of individuals with aphasia from a parenting standpoint? Your wish list.

Lauren Schwabish: We talk about this, my wish list. So one of the things that I'm I'm trying to, you know. It's hard because we only meet once a month. I wish we could meet, you know, more routinely, but is, of course, when you have kids it's really hard to plan, you know and get together. But we've talked about this over. Several different meetings is, what would we like to have available? I think certainly books or resources videos that are for parenting, about parenting that are aphasia friendly. So like, how do you, parent? You know a toddler? I know, I read books when I was raising my kids. You know, I read books currently about like teenagers and mental health. You know what resources are available that are aphasia friendly. And where can we find those books and do those books exist? And can we write those books? So some of it is just typical parenting advice but made aphasia friendly. That's something I would love to see. And we have a couple of different books that people have recommended, and I think we said we could link those in the show notes so people could try to. You know, find those. But of course, this is probably one of those moments where someone will get inspired and create them, you know, create that resource in the future. I would like to have some tip sheets again, based on what my parents in with aphasia, have recommended about how to engage in conversation in the community when it comes to parenting. So, for example, how do you talk to the pediatrician during a checkup? Right? How do you make sure that your voice is heard, that you can fulfill that role of parents versus someone who's just sitting in the room when there's you know, someone else speaking? How do you talk to a teacher at a parent-teacher conference? So some of it I think it'd be again scripts or recommendations or advocacy. I have a like we've all seen them sort of. I have aphasia, you know, cards, and we I've shared that with that group just to try to say, like part of your job is to be a presence in the school community, right? So like, how do you do that? So even like a guide? Again aphasia, friendly, something that would allow them to participate in these pretty routine parenting situations. And then I think, what I'd really love, and I don't know, you know. I hope someone out there is thinking about. This, too, is to think about how to record stories or videos with just those words of support. So that if you're out there and you have a young parent with aphasia on your unit in a hospital where you could go to Youtube, or you could go somewhere and say, Hey, you know what? Here's words of wisdom from people who've been where you are. If I could record a snippet of the conversations that we have, or the words of wisdom that one parent passes on to another. It would be so. I think, reassuring in a really scary time I think it would be inspiring. You know nothing that's too heavy a lift that doesn't need to be, you know, a feature like film, but just something that would be a collection of stories that someone could watch and just gain a little bit of sense of, okay, you know I'm not alone and people have done this before me, and they got better. And I can, too.

Jerry Hoepner: Yeah, that seems to be a recurring theme that I'm not alone, and I can connect with people that really get this. Yeah. II love your wish list, and I hope that some of our listeners are inspired to create those resources. And you know, as we were talking, II just couldn't help myself. I jumped on to Google Scholar, and I wanted to see what was out there for research in this area. There's not a lot, and I know that Molly Manning has written a little bit about this, and I think Brooke Ryan has done a little bit of work recently, but there's not a ton out there. So for all of you academics out there, too. Like what a terrific topic! For someone to research into, to learn more about this. So I'd love to get those testimonials and words of parents out there as well. So feel like we're just scratching the surface of this, and a lot of work needs to be done. But what a great kind of call to action! That the need for groups for parents with aphasia. So I really love, love that conversation, and thank you. Anything else that we're missing, or we should add, before we move on. Regarding.

Lauren Schwabish: No, it's like, I said, running, the group has been wonderful. And I just think, if you even have 2 people, you know, it doesn't take like we have people from all over the country that come to the National Phase Association meeting once a month, you know, the second Wednesday of the month. But it doesn't take too much to operate it, you know, Zoom Link. And so I think even Matching, or you know, Peer matching someone else just to recognize that this is a very this is a population that's gonna live with aphasia for a long time, and you know they're the needs are high. And so even if you can think about a peer mentor, or some kind of connect in your greater community. You know, this is really a population that's thirsty for it, and they want it, and they will. They will pursue it on their own. Once you sort link them up together, and then hopefully, the rest of us can come up with some great resources to fulfill that. You know that that connection.

Jerry Hoepner: Yeah, excellent. And certainly, if there are people listening, thinking, what should I do? I want to do something related to parents. Wow! What an opportunity to step into! There's plenty of plenty of room for that support to go around. So really inspiring. Lauren, if it's okay, I'm gonna shift gears and talk about a very different conversation. But one that, we said, is definitely linked through that kind of family. Principle, family centered principle. And that's the conversation about person centered care for individuals with primary, progressive aphasia. Can you begin by just sharing a little bit about your perspective? What drives you, your underlying theories for this approach?

Lauren Schwabish: Yes, and I will say, for my, you know, 23 years of experience. I am very new in the Ppa space, mostly because I was working in the hospital system, and that's not where these individuals are found, you know. So for me. Once I started my practice, and someone said, Do you treat primary, progressive aphasia. The answer was, of course, yes, but then it was very much a well, how right? How do I do this? And so diving into you know, all sorts of education. Looking at, you know, resources that are available. I’ve really appreciated some of the work on the raise framework in terms of really not thinking so much about all of the testing, but really thinking about what does this individual need to do? And how can I identify as much personally meaningful stimuli as possible, because that's the only thing we should be focusing on, right? So I think to that end also, it really clarifies what my approaches and forces me to be as efficient as possible, and then really be flexible. There's one gentleman in particular I'm thinking about where, you know, we've started out, and he didn't really require too much in the way of language support. So it was more like, what do you want to talk about and maintaining, you know, a multimodal language, practice opportunities. And then, as things have gone on and change, we've really run the gamut from like starting, you know, starting with an iPad, and you know, a higher tech, aac option, and then kind of seeing that that's not really going very well, or it is a little too challenging for this particular family, and then very quickly pivoting to something that's more accessible. So yeah, it's to me. It is it is a family centered situation, and you know it's interesting.I have a wonderful aphasia center near me, and I love them, and I refer everyone to them. But they are very much clear that Ppa and sort of that aphasia community center feeling doesn't really work well in their experience. And so I brought this, you know, again to the aphasia access community to, you know, at the Leadership Summit, and said, You know, how does this work? And it's just really complicated. And what you'd said earlier about, you know a family being able to look ahead and say, okay, this is what I want. I have found in the Ppa clients that I've had. They actually avoid that because I think they don't want to see it. It's too much, they've said, you know. And so I tried to be a little bit of a matchmaker. I had 2 gentlemen, both with primary, progressive aphasia, you know, scientists very loving wives, you know, really like they were so ideally suited to connect and it was almost like they didn't want to see this other individual, even though it would have been wonderful for them to connect there. I just found and this is probably happened in, you know, 75% of the cases I've had so far, they are reluctant to see someone else with. Ppa.

 

Jerry Hoepner: yeah, interesting and I think that's one of those challenging things where we have to like your principle of matchmaking, and where we have to think about how we get there, right? Because there’s always things that we don't want to talk about, or we want to avoid to some extent. But there's always a a bit of us who knows there's a need for that, too, and finding ways to make that threshold of building those bonds and those relationships is definitely a part of that even if it doesn't start out with. Hey, talk about what primary progressive aphasia looks like further down the road, but just to be able to build some of those peer connections?

Lauren Schwabish: and not know that, or know that you're not alone. I think that that idea that we talked about with families as well. So yeah. And what I found probably is a more successful avenue is really sustaining those family connections. So that's where I found that sometimes the community of course I want them to be able to see someone who's, you know, just as bright, who also has aphasia where things are changing. But what I found greater success in is looking to the sort of family as a community and saying, What can we really do in this contact, so that you can continue to, you know, ask your grandkids about, you know how school is going, or give advice to your you know newlywed son about you know life nowadays, you know. So, some of it is really trying to figure out how can I use those family connections? And then to me and anyone who knows Ppa knows it's so much about counseling. So really, being a provider of I would say hope and I think that that's one of the things that really is important is to say we can still have participation, meaningful life activities, even though things are getting to look a little different. And so the one family I'm thinking about. They have this beautiful vacation house on the bay in Ver. In Virginia, and you know they love to go on vacations like this is a family that lives a great life and they really feel that they have to kind of reel it in, because, oh, my gosh! You know Dad has aphasia, and you know what if? What if? What if? And my perspective is? No, we need to make sure he's still going on vacation. And here's a communication tool, so that you know we can do that safely. Or here's how we're gonna navigate his communication in that situation so that he can participate. And that's probably been a great source of creativity. And also kind of success. Is the family as community?

Jerry Hoepner: Yeah, absolutely involving those family members and allowing them to make those connections, as it, you know, as if they're comfortable. And that principle of hope cannot be overstated right? Just how important that is to keep people engaged, because as soon as you start thinking about the downside that's when you want to just withdraw and kind of close in on yourself. But that hope is the light that people need to see in that moment. So completely agree. From your perspective, why is this person centered approach so crucial for a person with primary, progressive aphasia and their family.

Lauren Schwabish: I think, as we see sort of the deterioration that comes. you know there's so many there's so much value. And really looking at who you're you know who you are. Who is this individual? And so, being able to remain connected to things. They are passionate about friendships they've had forever. You know things that really get them excited. I have a gentleman who is like a he was a food researcher, a food scientist, and he actually absolutely loved being in this professor role. And you know, all of a sudden. He's his family is, you know, very attentive, and they're, you know, bustling around and doing all these things for him, and he just lights up when he gets an opportunity to explain a scientific concept or look at a scientific journal, or attend a conference like we encouraged him to go, and he attended a conference, and we practice the names of the researchers he was going to meet. And you know questions he might be able to ask and I think so much of it is. You know we're looking at someone who's essentially fading away, and that's so scary. And so if I can say, who are you? You know what's important about you? What should I know? What should your family maintain? And then we build a communication support system around that I think it allows them to continue to see the individual, even though there's a neurodegenerative process. And so things like I had one client who wrote his own obituary, and in doing that he gathered all of his. You know he was he had a lengthy Cv. He had done all this wonderful work, and so it was a chance for him, and it was of his own request he wanted to do this and I just said, Let's go because it was a chance for him to relive his professional connections. It was a chance for him. Talk about you know, areas of study where he had contributed. So to me, it's really about preserving the identity and recognizing and being able to have a again a tangible communication book, memory book, whatever they want to call it. Practice words. You know, stimuli photos. Anything that really says this is who I am And so that remains a touchstone where families can say, you know, even if the level of support changes over time, we still can have that person and be that person.

Jerry Hoepner: Yeah, II think that's just another one of those grounding principles. I I'm not making fun of you. When I say this, you've said who I am or who you are multiple times. And and that focus on identity is so crucial. And I think another piece I've been really into reading work on personhood, and that idea that yep, this person is fading. Their cognitive and language abilities are changing but they're still intelligent human being inside. There's still someone who deserves your time and attention, and still has many of the thoughts and kind of knowledge of their life. I think really important for families, and anyone who interacts with them to just recognize that personhood and and that identity of who they are.

Lauren Schwabish: it's also so easy to see what's going wrong or what could go wrong, that I think, also maintaining someone's competency and finding ways to reveal competency to families is so important. So like my one of my clients is much better at writing than he is at initiating verbal language, and so for him we haven't texting people right? And they are sort of like rolling their eyes like he's got his phone out again. And I'm like, yeah, cause that's how he's gonna communicate with you. And he will text me pictures and videos from family gatherings. And you know, it's really become a tool that shows his competence. And so you know, that's another opportunity. And why skilled intervention is so important even in the scheme of neurodegenerative disease is because there's always something that we can do to show that person and show what they're able to do. We just have to think of the way to do it.

Jerry Hoepner: Yeah, absolutely. I love that. You came to Aura Kagan's principles of acknowledging and revealing competence in a time when someone is like you said, fading and and losing some abilities even more important that we hold onto those principles. So I'm really interested. What does that look like in a session? What do your sessions? How do they look?

Lauren Schwabish: Yeah, it's every session looks a little bit different. Some of it is. I just want them to introduce themselves to me. And that's usually what I'll say is, you know I'm new to you. What can you show me? What can you tell me? And what can I look around in your environment. And I'm so fortunate in the private practice I've constructed is I'm a mobile therapist. And so I get to go to people's homes. And you know, even just being in that space can tell you so much and so you know, trying to really invite opportunities. Knowing how to ask the right questions. You know a lot of those carefully constructed open ended questions and then trying strategies here and there to see what really helps support someone's language. So I have one gentleman who he's he loves cricket and you know there's really no cricket on when I'm at his house but he and I have discovered over working together that having written notes as I'm listening to him, and I'm capturing, you know, content words and keywords he's able to say I write them down, and then he and I kind of have them on the table in front of us And so with cricket, He wanted to tell me. I said, I've you know I've played it like long ago. I really don't ever get to see it. What can you tell me? What can you show me? And then giving him a a vehicle to do? That drawing was a perfect way for him to show. You know, and this is a gentleman who's no longer writing. He's actually not really using any texting, or, you know, ipad, he has all of these devices. Unfortunately, not a lot of them are. Does he really feel comfortable if he could engage with them? But again, it's about what he would like to do. But a pen and paper was so effective and so with that, as he's drawing the sort of circles, and and you know the the lie out of the pitch of cricket. He's suddenly writing numbers, you know, and then he's able to point to those numbers and express those to me. So that's one version. One of the things that I talked about at the aphasia access summit and was really fun is looking at photos on the phone. So another gentleman the one with the big family, and he's always taking pictures. And so what we had discovered was this captioning strategy where I could just swipe up with him, and because his writing is a strength, he's then able to put in the names or events of family members into the photos. And that's been really fun. So that we're really trying to find that strategy where he can continue to use the stronger modality in the context of ample stimuli, because this guy takes pictures of everything. And then, as he's sort of declined a lot of it is trying to meet the needs of the family, so making sure that they know what communication supports are. Some of it's just thinking about safety, too. You know, making sure that right off the bat, this person has some sort of identifier on them. For stuff that's starting to get lost. How do we use technology, you know. Air tags and tiles and all those cool things. How do we maintain his independence and community? And that's been tricky lately is, you know, providing education resources related to driving. And how do we know when it's time to stop driving? You know these are sort of things where I have become just a trusted advisor to the family. And so, if I have a resource, I think that's important that we recognize our roles look so different in these sessions. And that's okay, because what we're doing is we're providing again, person center care trying to highlight what their priorities are and support the family. So that they can make that happen too.

Jerry Hoepner: Absolutely. Since the aphasia access summit that swiping up for the captions is something that I do quite a bit lot of my people. So I really appreciate that. I'm glad you brought that up again. Yeah, I feel like this has really brought us full circle, and with that emphasis on the family and the person as the core. Really. I mean family identity, and what that individual wants and needs to do what drives them. Seems to be at the core of these approaches, and that definitely aligns with what aphasia access and the life participation approach is trying to accomplish. So thank you for your insights and and creative ideas about this anything that we missed in terms of the discussion about primary, progressive aphasia or parenting.

Lauren Schwabish: I will just say that as someone who's sort of like done this by my gut instinct. It's so wonderful when I can go to the research. Not so much for the parenting is like you said, there's you know I it's not a ton of ample of evidence body of evidence yet, but it is so reassuring to have access to meaningful research that really supports You know just an Lpa approach it as a clinician like boots on the ground. I've really valued that I've loved podcasts and resources. I've had access to in terms of counseling. I think validating that counseling is important. I'm grateful to the fact that you know we even payers like Medicare. You know that there's a space now for the role of a skilled speech pathologist to follow along and to perform therapy over the course of a neuro, degenerative condition. You know, I feel like sometimes I've heard. Oh, you know, I think I'm guilty of this when I was working in the hospital setting, and someone would come in with some sort of acute process but then there would be dementia. I really feel like I was like well, they can't learn, or you know they I was so dismissive of someone's capacity. And I have changed completely in terms of being able to say, you know what there's individuals I work with, whether it's Ppa or another dementia process. Just to be able to say there's always value in finding a communication system or communication tool to really allow that person to connect with whomever they want to and so I think the fact is that I'm in a community that, you know is is interested in that. I have a practice that is, you know, working well because of that I'm able to get paid by payers because of that. So I really think it’s important for people to recognize that. We can fulfill such a valuable role and there's actually wonderful resources out there that will justify this approach.

Jerry Hoepner: Totally agree. Yeah, there's always value in fostering participation. Whether that's going to help someone recover, or whether that's gonna help them. You know, in their in their decline gracefully, and to remain engaged as long as they can so totally agree. Well, thank you, Lauren, this has been a fantastic conversation. I know our listeners are gonna value your clinical insights. So thank you. And it's been really nice talking with you.

Lauren Schwabish: Oh, it's been a joy. Thank you so much.

 

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