Episode #78: A Llama, a Resistance Band, and Neil Diamond Walk Into a Bar - An Interprofessional Exercise Program for Individuals with Aphasia: A Conversation with Michelle Gravier, Albert Mendoza, and Jennifer Sherwood

Ellen Bernstein-Ellis, Program Specialist with the Aphasia Treatment Program at Cal State East Bay speaks with Michelle Gravier, Jennifer Sherwood, and Albert Mendoza to highlight their research exploring the impact of an online exercise program on the fitness, well-being, and cognitive-communication skills of adults with aphasia as part of the Aphasia Treatment Program at CSUEB. This show addresses several gap areas addressed in the Aphasia Access White Paper authored by Nina Simmons Mackie, including: 

• Lack of holistic approach to community reintegration, 
• Insufficient attention to life participation across the continuum for care, and 
• Inadequate communication access

GUESTS:

 

Michelle Gravier is an assistant professor at Cal State East Bay. In addition to teaching coursework in adult communication disorders and supervising in the Rees Speech, Language, and Hearing Clinic and the Aphasia Treatment Program, Michelle directs the Neurocognitive Research on Rehabilitation of Language Lab (NRRL). Among other research goals, the NRRL seeks to develop and refine interdisciplinary group-based interventions for PWA and explore how these interventions affect language, cognition, mood, and engagement/participation in PWA

 

Dr. Albert Mendoza and Dr. Jennifer Sherwood are faculty in the Kinesiology Department at Cal State East Bay and both work in the Physical Activity and Health Lab, known as PAHL. The research goals of the PAHL include advancing knowledge pertaining to physical activity and sedentary behavior assessment using data collected from wearable sensors, such as the identification of target behaviors that reduce disease risk and improve quality of life in minority, healthy, and clinical populations. Dr. Albert Mendoza is an assistant professor who teaches coursework in exercise physiology and clinical exercise physiology. Dr. Jennifer Sherwood is an associate professor who teaches coursework in exercise nutrition, exercise prescription and exercise in gerentology. Jennifer also works with the Muscle Power in Older Adults Lab and is past president of the Western Society for Kinesiology and Wellness.

 

 

Listener Take-aways:

In today’s episode you will:

• Learn about some of the associated benefits of physical activity for individuals post stroke
• Find out about some of the limitations of exercise intervention research in terms of including individuals with aphasia
• Hear a description of both physical activity and cognitive-communication outcomes measures for the LLAMA study
• Reflect on how SLPs can offer training and support to Kinesiologists in becoming skilled communication partners.

Transcript edited for conciseness:

Ellen Bernstein-Ellis/Interviewer

I am welcoming you all to this episode. Thank you for being here. Michelle. Albert, Jennifer, thank you.

 

Albert Mendoza  04:04

Thank you for having us.

 

Jennifer Sherwood  04:04

Thank you for having us.

 

Interviewer  04:05

Absolutely. I'm going to just kick off with a question that I'm going to pass to you, Michelle. Would you care to share an aphasia access favorite resource or moment to start us off today?

 

Michelle Gravier  04:24

I would love to, thank you, Ellen. I appreciate so much what Aphasia Access provides for all of us. But I just would like to highlight the Brag and Steal sessions. So we actually had the opportunity as a group to present at the Brag and Steal a while ago to present this project that we'll be talking about today. And as you'll hear, it's one of our goals to help people start an exercise group in their aphasia program. It was really amazing to be able to share some of the lessons that we've learned along the way. We were able to implement some of the other ideas that people shared in the Brag and Steal in our own Aphasia Treatment Program.

 

Interviewer  05:07

Absolutely great ideas and great information. And most of all, just a great community culture of sharing with each other and supporting folks who are really interested in Life Participation approaches. 

Before we dive in further, I like to share why I find this topic of exercise so meaningful. My first couple summers of college, I worked as an adaptive PE aide at De Anza Community College in Silicon Valley. And it was just a great opportunity to learn about making physical activity more accessible to a wide range of community members with disabilities. Now, one class member was an elderly woman who had had a stroke. When she came in with her husband, we would help her from her wheelchair to the mats for exercise, but she would often sob through her session. This was just long before I understood the concept of lability or aphasia, and we just did not have any training on how to be a skilled conversation partner. And without any idea of how to support her communication, her ability to participate in the class was negatively impacted. I just remember feeling that the loss of the ability to communicate was just deeply devastating. 

 

Well, fortunately, I found the speech pathology major at UC Santa Barbara. Now fast forward from the late 1970s when I was an undergraduate to 2014 when I was sitting in the ASHA session developed by Anne Oehring, Leora Cherney and a Kinesiology colleague from what was then the Rehab Institute of Chicago, now the Shirley Ryan Ability Lab. They presented their collaborative group treatment model that offered discussions about health-related topics followed by a period of active exercise. Their interprofessional aphasia friendly approach to exercise participation made me think back on that adaptive PE experience. And in the last few years, Aura Kagan has provided multiple reminders that we should be considering the impact of exercise on wellness and recovery in our aphasia communities. So, all of that brings us to today's podcast and getting to explore and share this exercise program. Albert, why don't you get us started by explaining why we have a “llama” in the title of this episode and how the project got started?

 

Albert Mendoza  07:33

I don't mind at all and thank you for asking. So, it found its way in the title by the way, what is the title again? It's “A llama, a resistance band, and Neil Diamond walk into a bar.”

 

Interviewer  07:43

(Laughter) That's one of our choices.

 

Albert Mendoza  07:45

Okay, let's roll with that. A llama entered because that is the acronym for our program. The LLAMA stands for Life-Long Activity through Movement for Aphasia--LLAMA. That's why it's in the title. Also, there's a resistance band, which is one of the pieces of equipment that we provided to our participants that we actually integrate into the exercises. And Neil Diamond, one of the favorites. Whenever Jennifer plays Neil Diamond while we're doing the exercises, you just see the participants’ faces light up as well as ours. We both dig on Neil Diamond as well. So it works out. That's a story. I'm sticking to it, Ellen.

 

Interviewer  08:33

Well, that explains why we have a llama. And could you tell us a little bit about how the project and collaboration actually got started? You were there.

 

Albert Mendoza  08:44

There’s a group on campus, CSR, Center for Student Research. And briefly, it's a program that connects undergraduate and graduate students with faculty who do research and gives them an opportunity to be exposed to research and develop stronger connection with faculty and some skills for their next steps. I was at a (CSR) mixer and we all had name tags on and they had asked some of the students who were there to go around and engage in conversation at different tables. I was standing at a table with two other people. A woman came over and I recognized her right away because her hair was bright blue or pink, I think. I said, “Wait I've seen you before” and I told her that I teach a class in the music building which happened to be right across the hall from the aphasia, I always called it the headquarters but I know there's a--  for the ATP program. And I said, “What was it that you do there?” Because when I would finish lecturing, there'd be a group of people who would come in and they moved everything around. They put up music stands and then there were a lot of people with assisted walking devices in the hallway.

 

Interviewer  09:58

It sounds like you were leading right into our Aphasia Tones rehearsal.

 

Albert Mendoza  10:01

That's exactly what it was. So she would talk to me about Aphasia Tones. I thought it was awesome. I just stuck around a few times to watch the Aphasia Tones from the door. But before that, after she told me what they did and told me about the Aphasia Treatment Program, I asked her if there was an exercise component and if she thought that people would be interested in something like that, and she said, “No.” And we have another program in our department that was started by Jennifer, who's here with us today. It's called Get Fit, Stay Fit. And the person who was in charge of Get Fit, Stay Fit, at the time, his name's Andrew Denys, a grad student in our department, happened to walk into the room. I said, “I want to connect you with Andrew. He's the person to talk to, and then we can see about collaborating, getting some students that can come over to work with your students.” And so that's really what started it off. 

 

And I'll tell you when I was really sold, Ellen, was when at the end of the semester, there's a concert that Aphasia Tones puts on, and I went to that concert, and it just blew me away. I was standing in the back and watching everybody sing. And there's a song that was actually written by somebody, I forgot the name of the song, but---

 

 

Interviewer  11:17

“I’m Here”, yeah, it was a collaborative songwriting effort.

 

Albert Mendoza  11:22

I thought, this is why all of us here are doing things like this, to see the impact that you could have, or that you can offer a way in which you can positively impact people's lives. I was like, we have to figure this out, I mean, there's some way that we can be instrumental here. So that's what started off the relationship between Jennifer, myself and your whole crew.

 

Interviewer  11:51

We also can give a shout out to that graduate student whose name is also Jennifer, Jennifer Cleary, who helped to do the coordination and get it off the ground for the program. And yes, you asked if there was interest. We didn't have an exercise component, but I had been asked multiple times by my members, “Could we do something active?” 

 

Albert Mendoza  12:14

I guess my question is what took you so long to get to the Kin department, and we were like, 40 meters from your building? (Laughter)

 

Interviewer  12:21

Well, 40 meters is a long, long distance for people who have mobility issues. So that was part of the problem. But I am so glad that that this collaboration started. It is awesome. Albert, thank you for sharing the origins because I love that it was a bottoms up kind of start where ATP members were asking for it. We just somehow had to get the stakeholders together to communicate and share, and you guys just embraced it and made it happen. 

 

So now I'm going to back up. Jennifer, maybe I can hand this next question off to you. 

 

We started as a face-to-face exercise class. But this is a podcast about an online program, a research project, but we originally started with eight people in a room. People could come once a week, we only had space for eight people on one day, eight people another day. Today's focus will be on this online project. Jennifer, what does research tell us about physical activity levels post stroke, what does that look like?

 

Jennifer Sherwood  13:23

Most adults post-stroke lead a sedentary lifestyle, and they spend 81% of their waking time in sedentary behaviors. They experience reduced cardiovascular fitness, mobility, and they have limited muscle control. And they also have an increased risk of falling. For adults with aphasia, some of our work shows that they take fewer steps and are more sedentary compared to the similarly aged stroke survivors without aphasia

.

 

Interviewer  13:55

I've read that increased sedentary behavior, which I'm really feeling during COVID with all of this time online, increases health risk. Increased secondary behavior is not necessarily a good thing at all. 

 

Michelle, you and I had the opportunity to attend the C Star lecture presented by Dr. Jean Neal Strunjas on “Aging Gracefully, with Exercise and Social Engagement” back in February of this year. And we were impressed. She shared her bingo-cize program developed to engage seniors in the skilled nursing setting, to hopefully get them more active and involved. We'll put the C-star link to that lecture in the show notes. She also provided a review of the evidence for the positive impact of exercise in seniors with and without dementia on cognition and quality of life. It was really quite remarkable and motivating to see that data. I wanted to go out for a walk as soon as that webinar was over, because the data was just so impressive. 

 

Jennifer, let me go back to you for a moment. What is the research suggesting about the benefits of exercise for individuals post stroke?

 

Jennifer Sherwood  15:06

In post stroke adults, regular physical activity is associated with reduced physical disability. It may be associated with reduced falls. It's linked to better attention and processing speed, but evidence is equivocal on the effects on working memory. Evidence also suggests that aerobic exercise training in post-stroke adults is associated with better cardiovascular fitness, cognitive abilities, walking speed, endurance, balance and quality of life. And strength training is associated with better physical function, mobility, psychosocial aspects and quality of life. While flexibility and stretching exercises are associated with increased joint range of motion, reduced muscle spasticity, and increased motor function.

 

Interviewer  15:55

It's always really an impressive list. We know that exercise is good for us. I appreciate you just kind of laying that out.

 

Michelle, you and I also got to attend a session at the 2021 Clinical Aphasiology Conference featuring a preview of the scoping review, led by Chaleece Sandberg and her colleagues in the ANCDs writing group, examining the research on the impact of aerobic exercise on cognitive-communication status in individuals with aphasia. This endeavor was motivated, at least in part, by the Harnish et al. 2018 article, which considered aerobic exercise as an adjuvant therapy for aphasia. We’re going to put these citations in our show notes but be on the lookout for a future publication of this scoping review. One takeaway was that we need more research on aphasia and exercise. And they also mentioned some common factors in studies that seem to show positive impact. Michelle, do you want to highlight anything?

 

Michelle Gravier  16:57

Thank you, Ellen. So, I think as you mentioned, the main takeaway is that we do need more research on including people with aphasia. One of the main takeaways that they provided, in addition to mentioning that we do need more research, is that there’s not a lot of information in the articles that are out there about stroke and exercise that specify how many people with aphasia were actually included in these studies.

 

Interviewer  17:23

Yeah, or not included.

 

Michelle Gravier  17:24

Yeah, of course, or not included.  But the some of the factors that they identified that might be associated more with positive outcomes included higher frequency programs, longer duration programs, greater exercise intensity, and also the inclusion of different kinds of exercise. So that just goes back to what Jennifer was saying, supporting the role of not just aerobic exercise, but also strength training, for example, in imparting these benefits.

 

Interviewer  17:57

So you actually just alluded to this and I'm going to ask Jennifer about the research in terms of exercise and stroke. How does it typically include or designate if there are individuals with aphasia as participants, what have you found?

 

Jennifer Sherwood  18:12

So there's a couple of limitations—especially the data with post stroke adults is limited. It's limited because studies don't recruit nonambulatory stroke survivors. And exercise interventions that involve stroke survivors are often limited by what health insurance will pay. And typically, this limits studies to the first three to six months post stroke, leaving chronic stroke survivors and their families to navigate their lives with new and evolving physical challenges.

 

In addition, it's also difficult to recruit chronic stroke survivors because stroke isolates people, and so they're less likely to engage in exercise and be in places where they might be recruited to participate in an exercise study. Adults with aphasia who are 25 to 40%. of post-stroke adults are typically not included in studies, especially exercise studies. And the reason being that the studies don't recruit adults with communication difficulties. Adults with aphasia have difficulty following directions and have difficulty reporting their experiences. Therefore, if the study requires participants to report language related outcomes, researchers exclude adults with aphasia, and adults with aphasia also have difficulty understanding informed consent documents. And these documents must be thoughtfully prepared to be understandable and enable adults with aphasia to consent. And another barrier, the final barrier, is that research related tools to work with adults with aphasia are limited. There's no toolkit, and there are few standardized study assessments available for researchers interested in the experiences of adults with aphasia.

 

Interviewer  19:53

Right, you know, in terms of those limitations and barriers that have caused people to exclude individuals with aphasia as participants, I just want to acknowledge some of the work by Pearl and Cruz in their 2017 article, Daleman’s 2009 article, and even Luck and Rose’s 2007 article. It all talks about the methods and ways to make sure that we can be more inclusive. And the reasons to include these individuals in our research are just so vital and important. I hope the listeners will take a look at those articles in the show note citations, because I think that's a really good place to start. 

 

So you mentioned some of the barriers, Jennifer to participating in exercise post stroke, do you see there are additional barriers for individuals with aphasia, just being in a post stroke exercise class,

 

Jennifer Sherwood  20:47

In addition to potential physical ability, or the variable amount of physical ability, there's often, and this is for post stroke as well, that that physicians neglect to recommend exercise, despite the potential benefits. Engaging post-stroke adults in exercise is more difficult because there's not knowledgeable people with the skills to adapt the exercise for their physical and communication abilities. And the programs need to be flexible to accommodate and adapt to frequent health related interruptions and changing physical abilities. And so there's a paucity of these programs in the community.

 

Interviewer  21:30

That was my next question. What do we know about the availability of adapted community-based exercise classes? Are they widely available? It sounds like not so much.

 

Jennifer Sherwood  21:41

Now, if you think about most community centers—so the hospital rehabilitation is usually limited by it by insurance. There's maybe like 10 visits or something and that's happening in the first six months post stroke. Then people are left to go to their community centers and community centers are busy, people are impatient. People don't have the training to work with adults with physical disabilities and different communication abilities. I can imagine, and research suggests, that people with aphasia are not going to those locations to exercise.

 

 

Interviewer  22:23

I am excited to start talking about the current research focus and status of the LLAMA project at Cal State East Bay. I'd like to share this collaboration because it is a coming together of the speech pathology program and the kinesiology program to create this project. Albert, do you want to talk about the purpose and where we're at with this project?

 

Albert Mendoza  22:49

Sure. Thank you for asking. The purpose of LLAMA is to assess the feasibility retention and compliance to a physical activity intervention delivered online and individualized in real time to post-stroke adults with chronic aphasia. We have a secondary aim to investigate the preliminary effects of the intervention on sedentary behaviors, physical activity, and function.

 

Interviewer  23:16

All right, so a lot of different goals. How about describing your participants?

 

Albert Mendoza  23:22

I mean, just describing the aims of this, it just sounds like a lifelong study.

 

Interviewer  23:28

Yeah, that's right. It's big.

 

Albert Mendoza  23:32

So our participants, this is great, because we have a wide range of ages, a range of time post-stroke with our average time from post-stroke being about 10 years. There's a range of aphasia severity from mild to severe. Also, different types of a aphasia, we have a range of six different types of aphasia. And paralysis or paresis, just under 80% of our population have upper and lower right paresis, and many of them have assisted walking devices or wheelchairs. And several of them have been with us for three continuous semesters--they've engaged with the program. So that's pretty exciting. 

 

Interviewer  24:25

It's really exciting because our members vote with their feet. They don't like something, then they don't come back. They take a different group, different class, so…

 

Albert Mendoza  24:32

They don't like something, they let you know. And then they don’t come

 

Interviewer  24:37

True. They are very empowered to tell us what they like and don't like. Absolutely. 

 

Let's talk about outcome measures. Because I think that's always a tricky part of any study. And this is where interprofessional collaboration, I think really shines. So let's describe our main measures as they cross several domains and why don't we start with the physical activity ones

 

Albert Mendoza  24:59 

For physical activity, like what Jennifer was discussing earlier, we're taking the approach of examining both physical activity behaviors as well as sedentary behavior. So sedentary behaviors, in general are defined as behaviors that require energy expenditure just above resting, just barely above resting, in a seated or reclined position. And then physical activities are above resting, those activities that they're engaging in. For physical activities, we're examining steps as an outcome, stepping time, stepping bouts, in times of like, less than a minute, between a minute and five minutes. Standing time-- 

 

Interviewer  25:39

Wait, wait tell us again with a stepping bout is, we’re speech pathologists!

 

Albert Mendoza  25:44

Anytime I say bout it means that you're going from one behavior to another behavior. So it's like a transition. So right now, some of us are sitting, some of us are standing--a stepping bout would mean you get up, you go to the kitchen to grab yourself a glass of Chardonnay or Pinot Grigio. And then you walk back, right, that's a stepping bout. So you went from a sitting behavior or sitting posture, to a walking behavior, and then back to a sitting behavior. So that would be a bout within there. And then when it comes to the sedentary behaviors, we're examining sitting time, so how many minutes a day they're sitting, as well as sitting bouts. So again, that would be a sitting behavior, and then it would transition to a different behavior than back to sitting. We're looking at sitting bouts greater than 30 minutes throughout the day.

 

Interviewer  26:37

I have just greatly, greatly been impressed and amazed by what it's taken to get those physical measures. And we'll talk about that a little bit more because that's involved some wearable devices. And I'm excited for you to explain that to the audience. today.

 

Albert Mendoza  26:53

We will and you know, I'm sorry, I just wanted to add that these behaviors, sedentary behaviors and physical activity, they're not mutually exclusive. So a person who has an office job or who's a grad student feverishly writing their dissertation but who runs for 45 minutes later in the day, they have both behaviors. That's the reason why we're examining both behaviors. So I'm sorry, go ahead. 

 

 

Interviewer  27:23

No, thank you. Thank you. I'm going to ask Michelle to describe some of the cognitive-communication and psychosocial measures that have been engaged for this for this study. 

 

Michelle Gravier  27:35

Thank you, Ellen. We are interested in looking at different outcome measures. For our language outcome measure, we are using the Quick Aphasia Battery. And we selected that measure to see if participating in the group had any outcome or any effect on individual language performance. For our cognitive outcome measure, we selected the Test of Nonverbal Intelligence. We selected that measure because we were interested to see if it affected nonverbal intelligence, so controlling for individual's language ability. And we also were interested in looking at self-perceived barriers to physical activity. Jennifer mentioned some of the barriers that people had to participating in exercise and we wanted to see if participating in the group affected or reduced any of those barriers. We used the Barriers to Physical Activity After Stroke, known as the BOMPAS, and it includes 15 questions across four domains, including locomotor problems, fatigue, and mood, motivation, and information and comorbidities. And finally, we wanted to look at quality of life. And so for that, we use the Burden of Stroke Scale. And this scale asks questions in different domains related to how difficult individuals feel that these different activities are, including mobility, self-care, swallowing, communications, social relationships, energy and sleep positive and negative mood. And it also asks questions about the impact of those difficulties on individuals lives.

 

Interviewer  29:23

Thank you. I know that our students have really enjoyed learning to give those measures and have an opportunity to learn about the online administration of those measures, because they are all online. Right? All of the assessments?

 

Michelle Gravier  29:38

That's correct. Yeah. So, as you mentioned, even though the group started in person, the research study actually started once we moved online due to COVID. That’s why we have interest in really looking to see how we were able to provide an online program.

 

Interviewer  30:01

Hats off to you because the study was supposed to be in person and you guys just pivoted and made it happen online, which has been impressive. 

 

I think some of the next few questions are going to focus around adaptability and accessibility. I'm going to go back to the physical measures for a moment. Albert, there was a lot of effort that went into adapting some of the instructions for the participants for the wearable, health monitors like the Fitbit, and the activPAL. Could you explain some of the things that were done in order to make these things, clear instructions, clear and doable for our participants? 

 

Albert Mendoza  30:43

This had interprofessional collaboration written all over it. There's absolutely no way we would have been successful at getting these devices to participants and wearing them or anything if we didn't have the relationship that we do, Kinesiology with the SLP group. 

 

So briefly, these devices that they wore, one was a research grade device, it's a thigh worn monitor; the other is a is a consumer grade monitor, it's a Fitbit that you wear on the wrist. And for both of those, actually Sarah Millar who's a former SLP grad student of yours, made these videos of how to wear the devices, how to charge the devices, proper care, and then we made those available to the members themselves. 

 

We also demonstrated ourselves, so myself, Jennifer, Michelle, after we initialized the devices together, we waterproofed the thigh monitor and tegaderm is used, and we draw a little picture on it so we know which way is up. We take these baggies out to the person's houses. We hand deliver and we demonstrate as well, like this is how you want to wear it, you leave the thigh monitor on as long as you can, only take it off at times when it be submerged in water. 

 

The wrist device, we had only requested that they wear the Fitbit during the exercise sessions, so twice weekly, so that we can get a measure of heart rate. But it turns out, most wore the wrist monitor all the time, to bed and everything. The actiPAL, they wore pretty much 1,440 minutes a day, so that's 24 hours a day that they've had the device. So that's quite something, I mean compliance to wearing those devices. We realize that it is a burden. So we're really thankful that all the members just took to it. 

 

And it was because of the way that we were able to communicate with them with the help of the Speech, Language and Hearing Sciences department to help guide us with how to add more pictures, how to slow our speech down, how to be more descriptive. I was just mentioning that Jennifer and I have made this video, recently. We have new Fitbits. The members need to download the app and sync the device. Jennifer, I noticed just the way that she spoke in the video, she was very clear with her hand motions and very purposeful with the movements-- nothing too fast. It’s really at a cadence that, to me, it reminds me of our sessions--the way that we interact with the members. 

 

I think the fact that it's us doing it, myself, Michelle and Jennifer, that also resonates with the members. We're not strangers to them. I hope their impression is that we do genuinely care about them. And that we're offering the best possible mechanism of physical activity that they can engage in, in their best interests and as safely as possible. So those are some of the things that we did.

 

Oh, also, Jennifer started drafting an email that we would send ahead of time. I forgot whose recommendation this was, but I think it came from, I was gonna say the other side, but that's speech language, you know, your whole posse, but there's an email that goes out. Now a student sends an email out to the group the night before. It has nice big font, and (says) we're meeting tomorrow, this is the Zoom link, it's the same zoom link all the time, the same password, but, we send it out. And then also there's some pictures of some of the equipment that we use,

 

Interviewer  34:16

Like bring your resistance band and there’s a picture of a resistance band. I was so impressed.

 

Albert Mendoza  34:20

Yeah, and the ball. Also, Jennifer puts a link to the song that we're going to do. Those are all, and probably a few more things that I’m missing, are how we were able to get devices out.

 

Interviewer  34:40

Let’s just jump into the class. Jennifer, would you please describe, I don't know if the word typical is right, but typical class. I think it’s anything but typical. 

 

And Albert, you've just said you hope that the members know that you are genuinely involved and engaged and supportive. I think that message is loud and clear. If there was a measure of that, it would be off the scale, because you guys are awesome with the members.

 

Albert Mendoza  35:05

So thanks, we need to capture that measure. 

 

Interviewer  35:07

Okay, we need to work on that. Absolutely. So Jennifer, what does a typical class look like?

 

Jennifer Sherwood  35:15

So, in a typical class, everyone logs into zoom. Then we greet them as they come in, we check in with them, we get beginning heart rates, if needed. We then open up a video and we share the video. It’s an exercise team member and she's doing the movements. And so it's a split screen. There’s one side where she's using all of her limbs. And then the other side of the screen is where she's helping her “getting stronger arm”. So there's always two adaptations and they're noted with a blue circle and a yellow star. We start the videos so that people can clearly see what she's doing. And then we play music, Neil Diamond, Rod Stewart, the Commodores. Then we, we are all on Zoom together, can all see each other. And we note movements. We remind people that these movements are like activities of daily living, like maybe picking up their remote. We give them continuous feedback on their form and on their engagement. We acknowledge them, we challenge them, we remind them to work within a pain free range of motion, to stabilize themselves when they're standing from a chair, to continuously breathe. We run through a series of strength training exercises, their activities of daily living, but we use resistance bands to add extra resistance. We sometimes do them slower, so they're more strength building; sometimes we do them faster. And then at the end, there's a dance, and that is a little more aerobic. We watch a video of Sherry Zack Morris from Yoga Vista, and she has great videos. Then we end with taking heart rates, if needed. Then we say goodbye, keep up the good work, and remind them we'll see them in a couple of days.

 

Interviewer  37:25

It is such an incredibly positive and motivating supportive atmosphere. I hadn't watched for a for a while yet this semester and I got to watch this week. I started to try to do some type of count. I started to count moments or instances of positive feedback and banter, just trying to capture somehow, describe somehow, just how engaging this class is. You and Albert really are connecting frequently with the members. I think you actually try to track to make sure that everybody has had at least one, but usually it's multiple individual callouts in the session, which I think is really nice. People feel very listened to and present to the activity. 

 

You started to describe some of these, but is there anything else you want to add to how we've made the classes more communicatively accessible? Albert noted the aphasia friendly emails, did we cover everything?

 

Jennifer Sherwood  38:43

During the classes, we have the video and the movements are very clear. The movement is named, so it's textually represented below the video. And then we also have a picture of the name of the exercise below the video. We're able to adapt the exercises and the cues to the pace that's appropriate for the individuals in the class at in real time. And so we can make sure that we're using easily understandable words, short feedback. We're speaking more slowly and we're articulating clearly.

 

Interviewer  39:30

Thank you. Well, I really appreciate how much effort and thought has gone into these adaptations. Michelle, can you share your observations about how individuals with more severe aphasia do in these classes. What have you noticed?

 

Michelle Gravier  39:48

Well, for all the reasons that Albert and Jennifer just articulated, it's really accessible to members with all ability levels, so even our members with more severe aphasia are able to really participate, and they see everybody else doing the exercises. Even those who don't feel comfortable or confident enough, maybe, to participate in some of the communication-based groups that we offer an ATP, really thrive in the exercise group. And you can tell, just as he mentioned, Albert and Jennifer are always giving feedback and support to numbers. Some of the members who, even at the beginning of the program maybe seemed a little bit more reluctant or not as engaged, it's really been amazing over the semesters to see them open up and really grow so much. So now, some of the members with more severe aphasia are actually some who are probably among the more engaged members.

 

Interviewer  41:01

We've talked a couple times about how we started out as in-person, and now we're online. Some of our programs are completely online, some are offering both in-person and online groups. I'd like to ask you to reflect on some of the pros and cons of this online versus in-person format. Online has been particularly wonderful because we've been able to include our doggie mascots, which are yours, Jennifer. They are the most wonderful dogs who seem to love to come keep you company while you're exercising, especially if you’re making a video. So that's one positive, we get to have doggy mascots. Michelle, your cats show up now and then. Let's talk about the online aspects. Jennifer, are there things that you have observed or concluded?

 

Jennifer Sherwood  42:02

As you mentioned, at the beginning, when we were face to face, we were limited to eight participants. Now we can take as many participants as want to log-in on Zoom. The other thing is that people are on Zoom so they don't have to go to a place. They can exercise within their own home. They can exercise in a place where they're comfortable, their caregivers are there. They don't have travel time, it's easy for them to exercise. I was looking back at when we were face to face, and one of the things we were trying to do was develop pictures of exercises. I thought it was really interesting that now we have these beautiful videos illustrating the movements and that the members seem to really engage with.

 

Interviewer  42:59

That has been kind of a silver lining, the ability to use the screen and show videos which is harder to do in the class setting that we had. 

 

We've mentioned several times this whole concept of making this aphasia friendly and more accessible. But I'd like to ask Jennifer and Albert as Kinesiology faculty, what has been helpful in learning to communicate with individuals with aphasia? 

 

Jennifer Sherwood  43:33

As kinesiologists we enjoy physical activity. We know all of the benefits of physical activity. And there's no way that we could have communicated with this population for whom there's so many benefits of physical activity; there's no way that we could have communicated with this population without working with our speech and language therapists. 

 

Albert Mendoza  44:05

I'm glad you brought that up. Because I was thinking about that the other day, that we have all this knowledge, all this evidence and guidelines etc. But it is not meaningful, especially to our group with aphasia, if there's not a way for us to translate that to that group, to that community, to those family members, those caregivers. So it's absolutely true. That is one thing that it allows us to do, right?

 

Interviewer  44:32

I think the beauty is, we appreciate your acknowledgement of learning the communication skills, communication partner skills, but there is no way I would even try to think about leading exercise class, like I see you two do and how you shape and model behavior. I am so grateful for your expertise and for you bringing it to us and to our members. 

 

Albert Mendoza  44:56

Thanks and I think that's one of the cons. Jennifer was talking about the benefits of being online, there are many, but one of the cons is that we're not able to be with them, kind of anatomically next to them where we could help with--when we're online Jennifer and I can say, “You want your elbow to be fixed”, “You want to extend your arm here”, “Your shoulders back, chest back”. But when you're with them, you can, you can give more specific corrections. It's a little difficult because we don't always get a whole body view of the members since many of them are in a seated position because they need to be. But that's one of the cons of just not being able to be there with them. But, just short of that, we're able to watch them the best we can. 

 

We give them not just encouragement, but also to make it a little more challenging--actually, Jennifer just recently started counting down like the last five reps of whatever we're doing, which has been awesome because she's always very purposeful. We talk a lot about moving within your pain-free range of motion, but also, slow and steady, slow and easy, no jerky motions. Jennifer will slow it down. We know that in our fields when you slow these movements down, they become more intense. But they’re very purposeful movements. They don't have to be these large movements, but they have a large impact. I really appreciate the fact she's doing that because we get everybody counting together. That's something that I really do enjoy about the online, that we were able to be more specific and purposeful with some of the movements that we're asking them to engage in, that we engage in with them as well as Michelle.

 

Interviewer  46:46

There's a lot to learn. There are pros and cons for both formats. I'm going to go back to this accessibility issue and thinking about the students that you've been involving, in your labs and in this collaboration. How do the Kinesiology students learn about communication accessibility and being skilled communication partners? And do you see that this experience is helpful to their education and maybe translates into future job skills? What's been the approach to help train these students?

 

Jennifer Sherwood  47:19

Well, the first thing that had to happen, it was a key piece, is that they speech, language and hearing professionals, faculty and students, trained faculty and students from the Kinesiology department to use supportive communication and adapt the exercise delivery. We're modeling this as faculty, and as students, we're modeling this collaboration, this respect for another discipline, and willingness to learn from other professionals, and being able to practice within our scope of practice. We are not language professionals. And I appreciate that you acknowledged that you guys are not exercise professionals. I think it's really important for students to see how integrated we can work together. I feel like it's been incredibly educational and it's just been a really good environment. We teach students to collaborate. We're challenging them to extend their discipline, specific knowledge and skills, to plan and deliver and assess this physical activity interventions for adults with aphasia.

 

Interviewer  48:43

Albert, you've mentioned to me a couple of times that concept of translatable skills. Do you want to elaborate on that? I think about the trainers at my father-in-law's senior residence who come to the gym, and some of them are graduates of your kinesiology department, and they're really popular at this gym, of course--they are trained by you guys. I'm just thinking about the students who will come out now and have all this knowledge about aphasia and communication that will hopefully be helpful in these environments that they're going into.

 

Albert Mendoza  49:20

Building upon what Jennifer was saying, the ability to take what they're learning in the classroom and apply that in some meaningful way to a group of people, community, like this is important. Those are life skills, being able to communicate, but also being humble along the lines of what Jennifer was saying-- that knowing what's not in your wheelhouse and what is and just asking for help and asking for input and thoughts. 

 

We ask this of our students, and we should be doing it ourselves. And if we're not, shame on us. We should model that behavior. It's been such a great experience. I've heard from students who've worked in the program that they see the relationship that we have, myself, Jennifer, and Michelle and the other students, and you as well, Ellen. And that makes a difference. It makes all the difference because it's more of the action versus just telling them what you should be doing. But they just see, we do it, and they get it, and if those that don't get it, it's ruthlessly exposed. It's something that they're able to take to their next step, right? And we talk about that often, like, setting themselves up with this experience and developing the skills so that they have more possibilities and options when they're when they're done. 

 

And we have a student who has worked with us, and this person is still with us, they're going to be applying to PT schools. I was reading through her materials. She talks about the group of people she'd like to work with. I know that what she's applying with the aphasia group are the exact kind of skills that she'll need to be successful with this other group of people. She's talking about water therapies and things like this, but the way that she speaks and interacts with a patient, it reminds me how Jennifer interacts with them. It's like very aphasia-friendly.

 

You get it, I remember one day, we had a conversation, I said, “Oh, I'm gonna run into this person's house. I'm gonna have a quick talk with him, I’m gonna go”. And you're like, “There are no quick conversations with anyone with aphasia.” There's a lot to that statement. So that to me is another skill. And in this age, when we have less and less reason to communicate with people, especially face to face or eye to eye, it's kind of a lost art. So I'm glad that our students have an opportunity to grow in that way.

 

Interviewer  52:08

Yes, me too. It's been really rewarding to watch them and to get to be part of watching our SLP students lead the training for the Kinesiology students and faculty. We've talked about accessibility, I feel really good about sharing that, but I want to give you an opportunity to share any initial results. Michelle, are you going to start that part?

 

Michelle Gravier  52:33

When I was introducing the outcome measures, like I mentioned, we were using the Quick Aphasia Battery in the past tense. So I guess that gave a little bit away. But what we're finding is that the we didn't see initially any effect of participating in the program on language ability, as measured by the Quick Aphasia Battery. And so we just wanted to see if maybe that was just because we weren't using a measure that was quite sensitive enough. So we're actually adjusting some of our outcome measures that we're using this semester. For the cognitive outcome measure, The Test of Nonverbal Intelligence, our findings are similar in the sense that we didn't see any effect of participating on that measure. Similarly, we were thinking that maybe the outcome measure wasn't measuring quite the things that we might expect would be impacted by participating in an exercise group. The Test of Nonverbal Intelligence really focuses more on abstract reasoning and problem solving. Maybe there are some other domains of cognition, like attention, for example, that would be more likely to show some effects of exercise. But what we did find was that our members reported at the end of the semester that they on the BOSS, our quality of life measure, that they had fewer difficulties across all of those domains, but more specifically, that there were significant differences on the positive mood outcome. So suggesting, hopefully, that participating in the exercise group actually resulted in people having positive psychosocial outcomes.

 

 

 

Interviewer  54:23

It's really important to recovery. We know how frequently depression is an issue for people with aphasia, at such a higher rate than stroke survivors without aphasia, so I think any improvement in positive mood is really significant. Having access to classes and treatments that allow them to participate in things that might have an impact on mood is really vital. Albert, do you want to summarize some of the physical activity outcomes.

 

Albert Mendoza  54:57

Sure, so for physical activity outcomes, what we found were that steps and standing time increased in our group, and it happened to decrease in the control group. Our group took about on average about 1300 steps a day, which, in general 2000 steps a day is about a mile. So it gives you an idea of how much our participants step. But what was most promising was standing time, and they increased their standing time from pre to post over an hour, like 62 minutes daily, compared to the controls that actually decreased in standing time, almost 90 minutes from pre to post. So that was that was promising. And with sedentary time that both groups decreased in sitting time, not by much, but there was a little bit of a decrease. So that's, that's promising, it wasn't an increase. 

 

Interviewer  55:45

And you're still collecting data. This is still a project and process, so there'll be more to come. 

 

I'm going to ask if you have any recommendations for listeners, who might want to start an exercise class or do some research?

 

Albert Mendoza  56:04

I think I've mentioned this once before, but make friends with the Speech Language Pathology Department, if you're in the Department of Kinesiology, that'd be my first thing. The other thing is, you need to be invested. If you're not invested in the program, like if you're not really there for them, they're gonna sniff it out and you're gonna be in trouble. I think it's gonna make your life a lot more difficult. I'm sure you know as the educators, clinicians and researchers you are, but it's just been the vibe that I've gotten from being involved with a group. So that would be first recommendation, to really talk, go out and walk across the campus, go talk to another group of people, introduce yourself, buy them a cup of coffee, and have a conversation. I mean, that's really how it starts. It’s building a relationship like any other. We need each other. There's no one can do it on their own.

 

Interviewer  56:59

I would really love to see more classes, opportunities, and more collaborations develop. 

 

Albert Mendoza  57:07

That's in the pike, that's on deck, Ellen.

Interviewer  57:15

That would be exciting. 

 

So I'm going to direct one last question to each of you. What message do you want to leave the listeners with in terms of the value of interprofessional practice on this project, and/or anything else that you want to have the opportunity to say that you haven't had a chance to say. This is your moment. So, who's going to go first? 

 

Jennifer Sherwood  57:42

I'll start. So, I just think there's no way that we could have started or would still be doing this program and expanding this program without the help of the speech language professionals. There’s just no way and the things that that we've learned and that our students have learned, and the skills that we've gained, and the friends that we've made, are just, I mean, I feel really blessed and fortunate.

 

Interviewer  58:17

So do we. Thank you. Thank you, Jennifer.

 

Michelle Gravier  58:19

I'll go next. And just to add to that, I think everything that everybody has mentioned has been sort of alluding to this, but it's just really been an iterative process as well. I think that in addition to learning how to work as an interdisciplinary team and learning from each other, so they like more about exercise recommendations, and I think just learning from the members about what their needs are and how to adapt the program to make it work.

 

Albert Mendoza  58:57

I'm glad you said that Michelle, because I was just thinking that we've talked before about all the interviews and all the processes that your group goes through to collect data on all the members. I mean, very informative, very thorough. We've had conversations and Jennifer too, about like, maybe we could ask this question to find out, because we really wanted to know what's their take on what we're doing? How could it be better for them? So constantly reevaluating, but you check in with the members to find out what their needs are so that we can do our best to meet them from our direction, to meet them there. 

 

I'm glad that Michelle had mentioned that because that's something that I thought about also. I had a cup of tea the other day and I like reading the little, I don't know what you call those in the back of the-

 

Interviewer  59:49

The piece of paper? Yeah, yeah, I don't know what that is called either.

 

Albert Mendoza  59:53

I read it to my students because I just got a kick out of it and it was a “Aspire to inspire before you expire.” I would say thinking about this project and what we're doing, like, I really hope that what we're doing is really inspiring to others to take action--to get involved somehow in their community or their families, to give, to share the knowledge, to share your experience, to give others an opportunity to improve their quality of life for the short time that we all have here. So, this is just one way that we're able to give back and say thank you to the members in the aphasia group, and hopefully, you know, this is just the start of something great. Isn't that a Neil Diamond song? I'm sure he has a lyric in this.

 

Interviewer  1:00:52

It's that time to start…. (sings)

 

Albert Mendoza  1:00:53

My aphasia! (sings)

 

Interviewer  1:00:57

Yes. Yeah.

 

Albert Mendoza  1:00:58

Ultimately, that would be my message, my closing thoughts about the whole thing because when we go drop devices off, it's kind of a double edged sword, because we do have to travel around and it's a little bit burdensome on the members, but having conversations with them with their---I had one person's wife tell me at the door-- they all want to say hello, right? So I just wait there, and I'm sure Jennifer and Michelle do the same. And while this person comes to the door, his wife said, “Hey, you know what? He actually walked upstairs to get into the bed, a couple days ago” or something like that. 

 

To any of us, to me especially, that's not something that we really think about, right? Unless you've had the luxury of staying in a hospital, like myself and others, where you really forget that those are luxuries. Those aren't things that are just given, walking or being ambulatory, that's a gift. And when she told me that, it really resonated with me. I got in the car, and was driving back home, and I was like, that is so huge, what we're doing. She attributed it to, in part for him engaging in this program, because it somehow has resonated with him. And like, it just lit this fire. 

 

I had another one, Jennifer had mentioned this earlier about people who were post stroke and when they're you six months to a year and then in essence, support fizzles out, right? It's nonexistent, right, for a lot of people when it comes to therapies like physical therapies. A member told me that her daughter has never been so physically active than when she's with our group. And she had physical therapists, according to the mom. To me, that was another win. So, little stories like that, anecdotal stories that coming from the caregivers and the family members. That just makes it all worthwhile. Like it's a good shot in the arm. It reminds me of really why we do this.

 

Interviewer  1:03:03

Well, I think those are all inspirational and motivating reflections. And I really, really appreciate the three of you making the time and sharing this project for this podcast interview today. Thank you so much, Michelle, and Jennifer and Albert. It is a joy to watch. You all collaborate and be in those classes and dance and move and do all the different things you make us do. It's really just wonderful. So thank you.

 

Albert Mendoza  1:03:35

It looked like you were just doing the robot. Is that what that was?

 

Interviewer  1:03:40

No, that was the YMCA thing... I was putting together all of the dances into one gesture. 

So anyway, I just want to thank you again for being our guests today for this podcast. And for more information on Aphasia Access, and to access our growing library of materials, go to www.aphasia access.org. And if you have an idea for a future podcast series topic, email us at info@aphasiaaccess.org. And just thanks again for your ongoing support of Aphasia Access.

 

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Dalemans, R., Wade, D. T., Van den Heuvel, W. J., & De Witte, L. P. (2009). Facilitating the participation of people with aphasia in research: a description of strategies. Clinical Rehabilitation, 23(10), 948-959.

Gravier, M., Mendoza, A., Sherwood, J. Feasibility and Effectiveness of an Online Exercise Group to Promote Physical Activity in Chronic Aphasia Presented at Western Society for Kinesiology and Wellness Virtual Conference,  October 8th, 2021 https://osf.io/a85m4/

Harnish, S. M., Rodriguez, A. D., Blackett, D. S., Gregory, C., Seeds, L., Boatright, J. H., & Crosson, B. (2018). Aerobic exercise as an adjuvant to aphasia therapy: Theory, preliminary findings, and future directions. Clinical therapeutics, 40(1), 35-48.

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Neils-Strunjas, J., Crandall, K. J., Ding, X., Gabbard, A., Rassi, S., & Otto, S. (2020). Facilitators and barriers to attendance in a nursing home exercise program. Journal of the American Medical Directors Association.

Nicholson, S., Sniehotta, F. F., Van Wijck, F., Greig, C. A., Johnston, M., McMurdo, M. E., ... & Mead, G. E. (2013). A systematic review of perceived barriers and motivators to physical activity after stroke. International Journal of Stroke, 8(5), 357-364.

Pearl, G., & Cruice, M. (2017). Facilitating the involvement of people with aphasia in stroke research by developing communicatively accessible research resources. Topics in Language Disorders, 37(1), 67-84.

Sandberg, C., Madden, E. B., Mozeiko, J., Murray, L.L., &  Mayer, J.F. (May, 2021). Therapeutic effects ofexercise in stroke and aphasia recovery. [Conference Presentation]. Clinical Aphasiology Conference, online.

Sherry Zak Morris, Yoga Vista https://yogavista.tv/instructor/sherry-zak-morris/

Wallace, S. E., Donoso Brown, E. V., Saylor, A., Lapp, E., & Eskander, J. (2020). Designing Occupational Therapy Home Programs for People With Aphasia: Aphasia-Friendly Modifications. Perspectives of the ASHA Special Interest Groups, 5(2), 425-434.