Season 1, Episode 5: No Easy Game: An Intensive Comprehensive Aphasia Program’s First Five Years

Transcript of Episode 5

Jane (00:00) All right, ready?

[Jane and Dana singing Happy Birthday in Italian and everyone cheers]

Shonali (00:20) Do you actually speak Italian?

Dana: Yeah

Shonali: Fluent?

Dana: Umm, not really fluent but kind of fluent.

Jane: [laughing] He doesn't speak English fluently

Dana (00:38) Yeah, so it's... May 1st, 1920… Oh no 29… 20… 7… 16. 16.

Jane (01:00) You wanna start that sentence again? OK, start the sentence again on May 1st, 2016…

Dana (01:10) On May 1st, 2016 I had a stroke. We went to the hospital. And we went to Spaulding. And [pauses] I can't speak. And um, but, I I feel like I can speak, but looking at the doctors and I feel that. I don't know. It's all right. So in the fall, I went home at Newton. And in the fall, I [pauses] Spaulding Ships Cap. Yeah, and um… I did speak a little bit, yeah, so. Um. I think um six weeks, six weeks of intensive therapy and. And I get better. I get better and. So it’s three years later, also kits cap and um, better and better and um, today, better and better, I think.

Shonali (04:05) Welcome to Finding Strength. The Spaulding Rehabilitation Podcast, where we'll try to connect the dots between rehabilitation, research and the people who are most impacted. This production is a collaboration between the model systems and the Rehabilitation Outcomes Center at Spaulding. I'm your host, Shonali Gaudino. I'm an occupational therapist, and I've been working at Spaulding for over a decade. I'm now the administrative director of the Rehabilitation Outcomes Center and I am on a mission to build bridges amongst our community of clinicians, researchers and people with lived rehab experience. As we released this episode, we're entering June. You may know that June is Pride Month, a particularly celebrated month in my family (Happy Pride Month to my sister Julie) but it's also aphasia awareness month. So for today's episode, we're going to talk about aphasia rehabilitation, and in particular a model called ICAP, or intensive comprehensive aphasia programs. Aphasia, as a little baseline introduction, can be one of the most academically fascinating and functionally devastating results of brain damage. It's a disorder that affects the capacity for language. This could manifest as difficulty with speech, writing and expressive language. It could be difficulty with how our brains understand language or some combination of both, resulting in a messy global dysfunction. Spaulding has partnered with our neighbors at the MGH Institute of Health Professions to develop one of these ICAP programs, something they lovingly refer to as ‘Ship’s Cap’ for Spaulding Institute of Health Professions Comprehensive Aphasia program, nautically themed to match the beautiful setting in Boston's Charlestown Navy Yard. The six-week program has been offered to people with aphasia every fall since 2015. Participants are paired with a speech pathology student and occupational therapy student who are then supervised by licensed clinicians, creating a vibrant learning atmosphere for everyone involved. We will hear today from several folks involved in that program, including Dana and his wife Jane. The voices you heard at the top of the episode. Dana was a lawyer in May 2016, working more hours than he wanted to when he had a stroke.

Jane (06:26) It was day 11 at Beth Israel and I was sitting at the bottom of Dana's bed and he hadn't said anything. Out of nowhere, Dana said, “No easy game.” And I I remember being so blown away by those 3 words, and he didn't speak again for a really, really long time, but that set the tone. You know, we've always been a good team and we met when we were in our 30s, later 30s and we had kids when you’re really not supposed to be having kids. We've just always been a really good team and I I think that that also was, you know, to our benefit that we both were in this together very much and we were very. Tightly united with the two of us and as a family.

Shonali (07:30) Do you miss law?

Dana (07:33) Um, not really

[Laughter]

Jane (07:35) But it was... We had… two weeks before he had a stroke, we looked at each other and said, how are we gonna get off this treadmill? Yeah, he was so stressed. He was so unhappy and it was… he was ripe for this. Yeah, I was not surprised when it happened.

Shonali (07:52) It was life intervening, maybe?

Jane: It absolutely was.

Dana: Right.

Shonali (07:55) It's now been seven years since Dana's initial stroke. After the hospital, he did his inpatient rehabilitation at Spaulding. One of the people who cared for Dana while he was there was Doctor Randie Black-Schaffer. Doctor Black Schaffer is Division Chief of the Stroke and Neuro Rehabilitation Service and has been working in stroke rehab for 23 years.

Randie (08:23) Aphasia affects approximately 30% of people have strokes and that there are 800,000 strokes a year in the United States. In aphasia you get damage to the either the left frontal region or the left parietal region, and sometimes to both because they're both connected by a structure called the arcuate fasciculus. When the damage is primarily to the frontal area, you tend to get a non-fluent, primarily expressive aphasia where you have difficulty thinking of and articulating the words that you want to say. You may understand what you want to say just fine, but you can't figure out how to say it and get it out. If you have involvement of the left temporal region, that tends to produce a receptive aphasia, which means you don't understand what people are trying to say to you. And you may be able to speak quite fluently in response, but what you say may make no sense, may be tangential, may be strange combinations of words. When people have just a temporal aphasia, they tend to have what's called motor apraxia, which is an inability to follow commands. And it's not totally clear to what extent that's simply that they don't understand what the person's asking them to do, or to what extent there is truly an impediment in the motor performance of the desired command. I think the the good news is that both of those can improve dramatically in the first three to six months after a stroke, which is when most people have most of their rehab. And even after that period of time, if people keep practicing and keep working on it, they can continue to have significant improvement.

Shonali (10:04) Sounds like most of the recovery happens in three to six months after injury, but that's also happens to coincide with when people are getting the most intensive treatment?

Randie (10:14) Right, exactly. Yeah. I think the presumption is that as has been clearly demonstrated for motor improvement, that if you continue to practice repetitive practice of specific skills that they will gradually get better over time and this is true of language skills as well as of motor skills. Most people don't continue to practice several hours a day - one year, two years, three years, four years out from the stroke. But if everybody did, we might see better long term long term results than we currently do at the Stroke Wellness Institute, which we started here at Spaulding seven years ago now. We work on programs for long term survivors of stroke - people for whom insurance will no longer pay for therapies or activities. But we have designed a number of activities to try to give people opportunities for motor practice, language practice, socialization, connection… a variety of different things that people need long term.

Shonali (11:12) After his stay at Spaulding, Dana went first to a skilled nursing facility and then returned home. Once at home, he joined what was just the second cohort of the Ship's Cap program and loved it so much that he came back a few years later for round two.

Jane (11:33) It it has certainly been a journey and when Dana says better and better, those were some of the first words that he said, particularly with our kids, and that really has become the slogan around our house. And… I never saw fear in Dana's eyes and you really didn't speak for a very long time. I would say. Dana, probably… he didn't speak for really a full year and there were words here and there. I think one of the biggest myths about a stroke is that, within the first year or year and a half, you will have reached the end of your potential. You will not grow beyond that and that is so false and misleading and it it. There's just no hope! But we never bought into that myth. I believe a lot of the hope that we got was from Spaulding Hospital and from the Ships ICAP program.

Shonali (13:00) Lynne Brady Wagner is Spaulding’s Chief Learning, Diversity, Equity, Inclusion and Accessibility Officer. She's a speech language pathologist by background and has been with Spaulding for over 26 years. She was Spaulding's stroke program director for eighteen of those years and was part of the team that conceptualized and established the Ship's Cap program.

Lynne (13:24) In the mid 2000s. The the there was increasing interest in academic programs and clinical programs in trying to implement intensive, comprehensive aphasia programs, the American Speech and Hearing Association developed some standards and guidelines, which we knew from the evidence that intensive, task-specific practice leads to more improvement. Our partners in Mass General Brigham, the MGH Institute of Health Professions, have always been close collaborators with us on on many different programs on clinical training for students. We have many staff members here who are adjunct faculty or lab instructors at the IHP and they have, you know, some of the most prominent researchers in aphasia in the country, Dr. Marjorie Nicholas being one of them. So but, but back when we started this program, we were thinking about how could we possibly do this? The intensity of the program requires a lot of resources and the payment structure is unfortunately a limitation. Many programs were private pay and were quite expensive because the resources were expensive. At the time that we had developed this program I was serving as the stroke program Director for our inpatient stroke rehabilitation program and Denise Ambrosi was the Director of Speech Language Pathology at Spaulding Rehabilitation Hospital. And Doctor Nicholas and a couple of our staff members, Marianne Savastano, being one of them. Carla Hendricks being one of them sat down to really sort of think about, how could we possibly create the intensity that we knew would be required for a impactful, effective program. And to do it in a way that that wouldn't be a burden on people with aphasia for paying or as minimal as possible. And could also allow us to continue the work that we needed to to do with our own resources to see patients in the hospital and be an opportunity for students to learn in this very intensive mentored environment. And I think what really makes our program different is having the interprofessional model. So our program meets the minimum criteria of language intensive treatment. But also incorporates the life participation approach to aphasia and doing it in a way that looks at a lot of different life activities that people engage in. Cooking, caring for your family, lots of different kinds of activities of daily living. Really applying the recovery of language into many different contexts of communication, and group activities in you know community functional activities and with adaptive sports and and being able to do all of those things together all the while having guide, a therapist, a graduate therapist with the intense supervision of a licensed speech language pathologist to to practice intensive verbal communication. And you know, other types of communication to increase not only the person's ability to speak, but also to communicate effectively overall.

Shonali (17:19) Lynne mentioned the structure of the program is interprofessional. It includes speech, language pathologists, but also occupational therapists, music therapists, nurses, therapeutic recreation, adaptive sports, aquatic therapy, physical therapists, and physician assistants.

Jane (17:40) The first time I understood the the power of music was Dana had been at Spaulding for two days. They asked him to sing happy birthday and he couldn't speak. And so I got him going on and once we got the tune, you kept, you sang happy birthday and then, I asked Dana to sing happy birthday in Italian, which is what we always do at birthdays. And he sang happy birthday in Italian to the surprise of the neurologist in the room. So that was. But then we had music therapy and Dana and I are both huge music lovers. I sing and he sings off key and and I sing on beat.

Dana: Come on! [laughing]

Jane: He sings off beat, you know it’s a yin and yang. We would just sing. We would, I would bring my phone and we sang every Tom Petty song, every Bonnie Raitt song, every Rolling Stones, Beatles, you know, any songs we would just sing. And that, I think, helped his speech tremendously. Because it it. I mean, it had you had words coming out of your mouth and we weren't hearing any words at all. It was so amazing to hear your voice. And you know, I I will say that from a kind of a team perspective, we are a family of team players and that is another reason why I feel like I recognize it in your program. But to have that kind of team at home, has been… it it it was huge and and I I give Burke and Isabella a lot of credit. They were very young and they were on a wonderful trajectory at that point and I feel like they have completely hit it out of the park. So our daughter Isabella, is a freshman in college. And she went to the University of Vermont thinking she was going to study environmental science, and then she took a psychology class. She's always been athletic, which may seem like a disconnect, but. She pulled a lot of pieces together. And part of the pieces was Dana's stroke and his recovery, and she is now looking to pursue a career in sports psychology. So she and when she had to write an essay about why she wanted to switch schools and she said, what she has learned in her two classes in psychology. And what she has learned over the past seven years with Dana has helped her to really understand the importance of positive thinking.

Shonali (20:47) In this next section, you'll first meet Esther Ayuk, a speech therapist who manages the Ship's Cap program. And then you'll hear Dr. Marjorie Nicholas, the person that Lynne mentioned as being a prominent researcher in aphasia.

Esther (21:07) It is an interprofessional program in that everything that we do really is integrated and collaborative and thinking about how can we make sure that we're not just targeting the person's language impairment, but also the fact that you are a complex person. And in that there is, you know, the person's feelings and identities and attitudes about living with aphasia, thinking about how can we make sure that in what we're doing to assess our clients, but also in creating goals that are meaningful to them.

Jane: (21:41) One thing that struck me and was was really impactful for not only for Dana, but for our kids to see was your cooking program and that seems so out of the category of speech therapy.

Marjorie (22:00) And that's really the C part of ICAP, the comprehensive part and the cooking class really was part of what was run by our OT faculty and our OT students. And of course, our speech students also benefited from learning all this about occupational therapy and how they might go about it. As Esther said, our, each person's unique treatment plan was created from their life participation goals, and so we assessed that. OT and the speech students together assess what their five top activity goals were, and then we developed the treatment plan around those things. So it wasn't like we're going to fix your naming. Or we're going to fix your writing or your reading. Instead, it's we're going to help you do a whole range of things that are gonna get you back to climbing a mountain in Africa. Cause that was your life goal. Yeah, and the whole program is designed around that. And I know you'd appreciate that Shonali, as an ex-OT.

Shonali: You’re never an EX-OT

Jane: Right!? My mom was an OT.

Shonali (23:15) The Ship's Cap program pulls together disciplines from across the health professions space. In looking at the program structure, I of course can especially see the role of occupational therapy, one of the occupational therapists on the Ship’s Cap team is Dr. Mary Hildebrand, and she explains part of the OT assessment.

Mary (22:38) The occupational therapy students would administer the activity card sort and it's it's this huge test that's pictures, like 80, 90 pictures of different activities and it's used to determine you know, what do you what did you do before the stroke? What do you want to do since your stroke? What do you want to do more of? And it encompasses activities like work or cooking or shopping and leisure activities, both things that are very physical, like swimming or running, and those that are like playing cards or playing games with children, that kind of thing. And then another big category is socializing. So the OT students you know go through this activity card sort, which is an OT assessment. And then we determine, kind of weed it down to 5 to 10 goals that they want to really get back to doing. They need to do or they have to do, or they just want to do and. And then we have them rate what you know how well they think they're doing on it and then how happy they are with how they're doing. And those are the things that we kind of base our our intervention on.

Shonali (25:03) When building the program, Lynne, Dr. Nicholas, Dr. Hildebrand and the whole team wanted to ensure that they had good data to evaluate whether the program was working and the activity card sort is just one example. The full list of standardized measures also includes the Western Aphasia Battery, assessment of language related functional activities, Communicative effectiveness index, cognitive linguistic quick test, stroke impact scale, Canadian occupational performance measure, medical outcomes study, social support scale, aphasia communication outcome measure, communication confidence rating scale for aphasia, visual analog mood scale, and they also developed participant and care partner satisfaction questionnaires. Dr. Nicholas was the first author of a paper published in 2021 by the ship's cap team on the outcomes from the first five years of the program.

Marjorie (26:05) The 11 measures are really based on the ICF, the International Classification of Functioning Model that has four domains, and so we picked assessment tools from each of those four domains. One of them is impairment, one of them is participation, one of them is the environment and one of them is the person. And so you get this full range of. Fully understanding what's going on with the person using that kind of a model, you know, one of our collaborators was Lisa Connor, who was the chair of the OT department at MGH IHP and so she had been using that kind of a model with her stroke recovery study and we just sort of used that as well with the Ships Cap Program. We waited over those five years so that we would have enough people in the data set that to give us something meaningful rather than just 8 people. The numbers showed that there were significant changes in a number of our assessment tools, including the Western Aphasia Battery, which was our main language assessment tool, and there were changes also in peoples self-confidence about their communication skills. And when we looked, when we sort of dived a little deeper, we realized that most of the significant changes were caused by a subgroup of people who really changed whereas a lot of people didn't necessarily change. Maybe half of the the subjects, but they still had very high satisfaction ratings and very high. They felt felt that they got something powerful out of it, so that that's another reason to include both what we call performance-based measures, which is, how do you score on this test of naming, versus, how do you think this might have changed you? What are your opinions about it and so? And those are like more person-centered measures and our our whole battery of tools includes both those. Yeah. And so I think it's important to get that well-rounded assessment view.

Shonali (28:15) So as Dana completed these assessments he identified goals for himself, but as Dr. Nicholas mentions, some of the most meaningful benefits realized were not necessarily in language improvements, but in social and emotional realms.

Marjorie (28:35) You know you're with these eight participants each time, every day for the whole day. You really get close. You know, the students, our students, getting experience with aphasia, that that is just priceless for them. They will never forget this. They'll never forget the person they directly worked with, but they also don't forget any of the other people. These will be their their stories will stay with them forever and and that social connection we know from years of research in in aphasia is so important.

Jane (29:09) What Dana and I were talking about on the way in today, the people that he met here, that his colleagues. Are still he's. Still, friends with some of them and. Just to give you a sense of how far their friendship has come, they went out for a bike ride on Wednesday or Tuesday?

Dana: No no, um, Monday

Jane: Ok, they went out for a bike ride on Monday.

Dana (29:37) On Monday we went to Hopton, Ben [Hopkinton] and back.

Esther: No, you did not.

Dana: Yeah yeah, because the marathon, right? So um, I think, 46 miles back and forth. Yeah. Yeah. Stops for lunch.

Esther (30:04) When we had initially started in 2019, you opted to do, there's a like about a mile, half a mile walk from the MGH Institute of Health Professions, the IHP, down to Spaulding. And at the time you were pretty active and mobile but had expressed that walking was still a lot more effortful and a bit slower than you would have liked it to be.

Dana: Right.

Esther: From the six weeks start to finish, your efficiency, making that mile walk had improved so much that that was just one, for me, was like a, yes, unintended outcome of just even participating in the intensive format where you get that opportunity to practice every day so. I'm really curious about the benefits of the program from a life participation perspective, but also unintended social benefits and other life activities too.

Shonali: And now you're biking… 46 miles…

Dana: Yeah. Yeah, yeah, yeah, yes.

Esther: Now you're biking to Hopkinton and back

[Laughter]

Marjorie (30:59) Can I ask you about your recumbent bike? Because you mentioned the right side is not as back to normal. Did you need to do anything special to that bike to make it… able for you to go… Right… 46 miles in it?

Dana (31:20) Right… the right side is the stopping and starting, um...

Jane: What side is that?

Dana: The right side… the left side, the left side.

Jane (31:29) So there is there is a an extension on the right from the right pedal that goes up to his calf that just stabilizes his, keeps his knee in line so it doesn't impact his hip.

Dana: Right, exactly. Yeah, yeah.

Jane: When Dana arrived at BI at Beth Israel, he was unable to stand. He was there was virtually no muscle movement on the right side of his body and the the the physical therapist at Spaulding had him strapped into recumbent they had him in a chair which leaned back, and it it replicated A recumbent bike, and they had him in a chair which leaned back, and it it replicated a a recumbent bike.

Dana: Right, exactly, yeah.

Jane (32:18) And then when he was at the ICAP program they were doing the adaptive sports aspect of it, and that was what that was really how we were introduced to the recumbent bike.

Dana: Right.

Jane: We sent a picture of that to one of our closest neighbors and they bought him one of the recumbent bikes, and they're expensive, but they it's. So you've been biking ever since you were at Spaulding. Dana was in a wheelchair when he came home and now he's biking 40 plus miles and he can take the dog for a walk around the park

Dana: Once a day. Twice a day.

Jane: Twice a day. Yeah, he's in charge now.

[Laughter]

Dana (33:00) Next week I have Toastmasters. Yeah, and I. I write a story of… anything, yeah. And I next the following week, I read the story, and um, On Wednesday, I had I. Had no… I will have um, Community connections and the afternoon I have um, Music appreciation. Yeah, yeah.

Jane: At?

Dana: At Spaulding… no, at BU, BU. And um on Wednesday, on Tuesday, I have ET, O. Every week and two times a week I have. I yell it. A speech therapist? Yeah.

Shonali (34:34) Can I ask is that… still, like, an outpatient like coverage thing?

Dana: No, no, no.

Shonali: Yeah, that's private pay that you guys are continuing this therapy.

Dana (34:47) Right, exactly. So it's it's better and it's going to be better. On Wednesday on Tuesday. TOTOT with Danielle every week and two tons a week I have…

Jane: So, the BU Aphasia Center, through their school of communications,

Dana: Yeah, yeah, exactly yeah.

Jane: They they provide all sorts of programs and classes, so he's, you're in continuing ed.

Dana: Ha, in continuing ed. Exactly, yeah.

Jane (35:28) He has he has a law degree and now he has. He's getting his speech degree.

Dana: [Laughing] Exactly, yeah.

Jane (35:35) To give a perspective, from seven years ago to this year... Dana was unable to follow more than two step directions. We went from literally, no abilities, to this February 14th, when I came home. And Dana had with his OT, created a strategic plan.

Dana: [Laughing] strategic plan?

Jane: In in that, so Dana had OT at 8:30 in the morning and at 9:30 his OT dropped him at Whole Foods, which is about a mile or so from our house. And he bought all the ingredients needed for this fabulous meal, he had, which meant he needed to go and pick out all the ingredients, which meant he needed to initiate a conversation with the butcher. The meat, the meat person at Whole Foods. To describe what he was making, how many people he was feeding, what he was cooking it in, which was a crock pot, and then he gathered all of it, he paid with his ATM card, which, even a couple of years ago was hard because there's a lot of steps behind that. He then bought two dozen roses. So figured out that he couldn’t walk home with. So he navigated getting an Uber, which again two years ago, even a year ago was not easy because there's a lot of processes involved in that. And he came home and he made the most delicious meal, and I walked in after a long day of work and the house smelled so amazing. There were flowers everywhere, there was crackers and cheese by the fireplace. In the living room there was a bottle of wine. It it was, it was the most amazing gift I've ever received and. And and, but these are skills that he learned at the Ships ICAP program, it's every like every part of that day…

Dana: Yeah, yeah, yeah.

Jane: is is really the culmination of the last seven years of really, really hard work really hard work. And I can say that from year six to year seven there have been significant changes still in Dana's progress, in his, in his physical strength. In his mental strength in his ability to jump into a conversation, he will initiate a conversation now. He will be able to jump into the middle of a conversation where as you couldn't before and you know, Dana is going to work. He goes over to the T and he navigates, which he couldn't do again like two years ago. I was like... ‘Find my friend!’… You know, he'll take the T in and you know get right off at BU, but he's going to work. He's got a mission. He's, you know, he's going to classes. He has work, he has to do. He has deliverables. He has to present.

Dana: [Laughing] Deliverables

Jane: Well, you do!

Marjorie: Yeah, there's accountability in your day-to-day!

Dana: Yeah, exactly

Jane: Exactly, it’s to have that accountability. It's a purpose. And that is really, really important. So he goes, before COVID, he was going in three days a week, you know, but that, that that purpose is really, really important to wake up every day and know that you've got something to do. But that's I will say about the the the BU program is… If we didn't have the resources… and again we were so fortunate to have this group of neighbors and former high school and college friends put together a fund. So we have been able to fund his ongoing private speech and his ongoing private OT, but the the BU aphasia program has been amazing because of all the different classes that they offer on an ongoing basis. Yeah, it's great.

Marjorie (40:09) Yeah, but you're also bringing up, especially with your generous neighbors and everything, how, rehab works best when it takes a village, and it's not just the and.

Dana: Right, exactly. Takes a village, yeah.

Marjorie: And you have to think about that poor person who really doesn't have that family, doesn't have that support system around them.

Jane: Right.

Shonali (40:28) Sensitivity to cost was front and center when they initially developed the Ship's Cap Program. Lynne Brady Wagner takes us back.

Lynne (40:39) Marjorie Nicholas and I are both colleagues and friends with Leora Cherney, who is at the speech language pathologist who started the aphasia center at what was it originally The Rehabilitation Institute of Chicago, is now the Shirley Ryan Ability Lab, and this is a program that is, you know, a stellar example in the nation of how to integrate intensive aphasia treatment and to study it to make sure that the dosing is right. You know that the resources are right, even though we know that our program is incredibly well received that people are making significant gains that they feel are important personally. That we want to be as efficient as possible with people's time and people's resources. Our program is also a private pay program because it is outside of, sort of the, again, the typical structures of of insurance reimbursement, third party reimbursement. We do have scholarships available. We're very fortunate to to be able to offer that, but we still we want to make sure that we're doing this in a way that's providing the best quality, the best intensity and managing people's time. You know, life, life activities and their treasure in a way that's that's responsible.

Marjorie (42:12) But you know, as hard as as you're… as things have been post stroke and so forth, you, your story is like so many I've heard that there are often good things that come out of this

Dana: Right

Marjorie: and peoples lives are sometimes changed for the better. And they they may not realize that until six 7-8 years have gone by. But, and that's one thing that I've also learned as a therapist who's worked with a lot of stroke patients who have aphasia, it's really made me think differently about all kinds of disabilities and how they can really sometimes change our lives for the better.

[All agreeing]

Esther: These unintended outcomes.

Jane (42:55) There have definitely been Silver Linings. There definitely have been.

Shonali (42:58) What do you feel like in the next 1-2 years are personal goals for yourself?

Dana: Um, driving

[Laughter]

Dana: And I read a lot of books, a lot of books. Reading is a good thing. Yeah

Jane: Well, you were an avid reader before the stroke.

Dana: Right, right. So.

Jane: But you couldn't really read well for a long time. For a couple…

Dana: Well, a year maybe…

Jane: …at least.

Dana: Two years maybe.

Jane (43:35) But now he he he is a voracious reader.

Dana: Yeah, yeah, yeah.

Shonali: Same speed as before? We think?

Dana: Yeah, yeah, I think so.

Jane: Now? Tt took time, but I think so, yeah.

Marjorie (43:49) What kind of things do you like to read?

Dana: Um, history. A lot of history, and a lot of books about Africa and and… History, I think.

Shonali: So when you write, because you have to write for this toastmasters thing… are you typing?

Dana: Right. It's typing. Yeah, yeah.

Shonali: Is, does language come through typing the same way as it comes through like verbally like it's the same? Or is it easier or harder?

Dana (44:23) A a little bit harder, but it's it's. Good. It's good. Yeah.

Jane (44:35) So when when Dana had his stroke, he could not communicate in any way, and I think that that is something that people don't understand is that he couldn't speak, but he also couldn't write. And he couldn't type so. On more than one occasion we got the question. Well, what if he just got, you know, what if he just got a computer and and spoke into the computer, typed in the computer? Like no, there's no output going on here.

Marjorie (45:07) And that's because aphasia, is a language problem.

Jane and Dana: Right, yeah, yeah, yeah. It’s a communication thing.

Marjorie: It's not just a speech problem. And writing is a language thing. Reading involves language, writing involves language, so anything that needs your brain to retrieve language is going to be affected by aphasia, right?

Jane: And that I think is a huge misperception that it's just all… the entire output process doesn't work right. And that has been. We have his writing from the ICAP program, from both of them. I wish I had brought. I wish I had pulled. Out the notebooks because yeah, because they're so great, they're really, really great. But to look at what he is writing now for Toastmasters versus what…

Dana: Right.

Jane (45:57) There was just. It was. Maybe a paragraph, maybe 2, and I was helping you an enormous amount and you were unable to…

Dana: Come on!

Jane: Well, honey, give me a little credit here. But there. But also he now he'll get on and research the web. If he is looking up something about Kilimanjaro or or travel. He'll get on and research that and then write about what he has researched. And that… he he was unable to do that for quite a few years. And learning how to use the computer again and where the keys were...

Esther (46:38) And adapting, probably for... Are you typing with one hand, Dana?

Dana: Umm, typing with one hand… at the computer?

Esther: On the computer

Dana: Typing with one hand, I think so.

Jane: Yeah, you only use your left hand to type.

Dana: Ohh yeah yeah yeah.

Jane: But you he's also his writing is really has improved tremendously. And he was a righty.

Esther: Writing with the left hand now too?

Dana: Right, exactly, yeah.

Jane: Yeah, everything got shifted.

Marjorie (47:05) Hearing all of your remarkable stories over these past years. This makes me think that we need to have a big reunion party. All the people that have participated.

Dana: OK, sure. When?

Marjorie: And so that we can share all these things with everybody, yeah.

Dana: When, when? When though?

Marjorie: Well, Esther has a plan.

[Laughter]

Esther (47:25) I’m actively planning in my mind, because I. You know I it's it's. I think it's so interesting to me that you still have these goals that you set for yourself. Like you mentioned beforehand, Kilimanjaro's in four years…

Dana: Yeah.

Esther (47:38) What kind of, keeps you going, Dana? Because it seems like on the outside looking in, you've checked off a lot of boxes, but what keeps you going to try and do new things and challenge yourself in this way?

Dana: Um, um, I'm happy. I think.

Esther: I feel that.

Dana: Exactly, and uh, it's a good thing.

Shonali (48:19) If you've enjoyed this podcast, please know that liking, subscribing and sharing is essential to sustaining our work. We release episodes the first Monday of each month, so stay tuned for more stories. The Finding Strength production is a collaboration between the Rehabilitation Outcomes Center at Spaulding and our Model Systems: the Spaulding-Harvard Traumatic Brain Injury Model System, the Boston-Harvard Burn Injury Model System, and the Spaulding New England Regional Spinal Cord Injury Model System Center, all funded by the National Institute on Disability Independent Living and Rehabilitation Research. The material presented here is for general informational purposes only.

Marjorie (49:25) [Laughter] I was joking because it really, none of us knew how to play the harmonica. But we had a lot of fun trying.

Jane: But that was an amazing, that was amazing to me that that was something that helped them with their breathing and too, and with their speech. And I thought that that was a fascinating exercise.

Esther: Yeah, I still have my harmonica from that year, actually.

Jane: We have two of them! One from each year.

Dana: Yeah, two of them, yeah.

Marjorie: We scheduled it at 4:00 o'clock on Friday as like a fun thing at the very end of this intensive week of four days of all day therapy. So it was a way to sort of blow it off. Literally.

Shonali (50:52) My… that's funny that you say that, my father plays the harmonica. Actually plays, like, pretty well and he…

Marjorie: Well, you know, we're going to have to bring your father in!

Esther: You have to bring him in!!

Shonali: He lives in Brookline, and he has a YouTube channel with like thousands of views. Like like 10s of thousands of views where he..

Esther: Is showing how to do it?

Shonali: Well he he like karaoke’s harmonica over like old Bollywood videos, old movies.

Dana: Really?

Shonali: Anyway, if you need a harmonica player, you let me know!

Esther: Yeah, we'll think about that.

Shonali: I think he would love that. Or, I would love it for him.