Season 2, Episode 4: Systems Science and the Complex Healthcare Journey of People with Aphasia

Transcript of Season 2, Episode 4

00:00:05 Paul Guidoboni
From the ambulance to the bed, there was a blurb until I saw Yasmen to the left. I knew you were here. Thomas was right there at the end of the bed. And then I said to myself and Thomas was, Thomas was crying, and I said to myself, I didn't die today. That's the first thing I said to my bride. I didn't die today.

00:00:29 Eli Pier
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 outcome center at Spaulding. I'm your host, Eli Pier. Today, we follow an extraordinary journey. Paul, a long-time wealth management advisor and Boston native was in the middle of an ordinary day when a stroke changed everything. He and his wife Yasmen suddenly found themselves navigating one of the most complex paths in healthcare: acute treatment, rehabilitation and the long road back to communication and independence. Today we're also joined by Carla Tierney-Hendricks, a speech language pathologist and a post-doctoral researcher in rehabilitation sciences at the MGH Institute of Health Professionals. Carla focuses her research on implementation, science, health service delivery and decision making in aphasia care. Later in the episode, Carla and our host Shonali Gaudino will help us understand the complicated phases of care. Especially when a patient first arrives, how do we make sure they're seen, understood and guided through an overwhelming moment, especially when communication is impaired. But first we'll hear from Paul, his wife and care partner, Yasmen and Olivia, a speech language pathologist at Spaulding Rehabilitation who helped Paul and Yasmen navigate their complex new reality. Paul and Yasmen's life together began in Boston, but their paths nearly crossed long before. Both attended the University of Maine, unknowingly orbiting the same social circles before meeting years later on a blind date arranged by mutual friends. They married in 2000, had their son Thomas, and built a life grounded in family, community and shared resilience. Paul spent his entire career in wealth management outside of work. Paul's passions include golf, especially playing with his son and cheering on the New England Patriots. Yasmen, a residential realtor on Cape Cod, brings creativity to everything she does, from baking and interior design to supporting Paul's recovery every step of the way. The day of Paul's stroke, August 1st, 2023 started like any other day. But by evening everything had changed.

00:03:00 Paul Guidoboni
Yeah. So my stroke was in August, August, August 1st of last year and it just, it hit. And yes, Yasmen upstairs and thank God.

00:03:12 Yasmen Guidoboni
On the 1st floor, where my home office is.

00:03:13 Paul Guidoboni
Just. Yeah, and thank God to this day. Thank God.

00:03:19 Yasmen Guidoboni
Really, he all he could, he said two things to me, all the way in the car to where we engaged the ambulance and they were, I don't know, I don't know and I'm sorry, I'm sorry and I was like, OK, you know, stop saying you're sorry. That was the first.

00:03:31 Paul Guidoboni
Yeah, so it's.

00:03:38 Yasmen Guidoboni
Thought that was the first time I thought this might be a stroke. But prior to that, the the things that had occurred before, I never would have connected them as being, you know we're we're taught all the things right and now they have the. Is it the fast rule, right? Like there was nothing wrong with his face, you know? It just wasn't like, you know, you look, you're looking for what you're told to look for, right? So there was no weakness on one side of his body. He could get up and walk because obviously he walked upstairs, came clear across the first floor to where I was, sat down. And it was really after that, I think as soon as you when you realized that you couldn't talk and and he was kind of shaky. And I was just like, OK, come. On let's go. I'm going to put you in the car, and by the time we got to the ambulance, that's when you really you needed more.

00:04:42 Paul Guidoboni
Right physically. But I couldn't comprehend. If I'm saying the right comprehend, I I couldn't. I I couldn't do anything.

00:04:49 Yasmen Guidoboni
You could. I think it's more you couldn't. You couldn't express what was going on to any to anybody.

00:04:53 Paul Guidoboni
Zero. Like what are they saying to me?

00:04:57 Eli Pier
Paul was rushed from their home on Cape Cod to the hospital. Yasmen had to make fast decisions, including whether to approve a powerful stroke drug, TPA.

00:05:06 Yasmen Guidoboni
The day of the stroke was bad, the neurologists called me before Paul was already at the hospital. I hadn't gotten there yet because it was 5:00 in the afternoon in the summertime. The traffic is pretty. I mean you only have Route 6 really on the Cape and it's it's kind of a log jam. So they said, you know, they were nice. They said you could leave your car here and hop in the ambulance with us, but we really don't advise it. You should get yourself there. Take your time. It's going to take a long time for us to get there and then get Paul processed and into a room and it will just be painful for you to sit in the waiting area. You'll, you know, they were nice. They're like you'll just be going out of your mind. So I went to a friend's, was there for a little bit. And then got in the car and proceeded to the hospital. I was probably about 10 minutes away still when the neurologist called me to talk to me about the TPA, the stroke drug, and whether or not I would agree to let them administer it to Paul. And you know, that's kind of a hard thing. I really didn't know much about the stroke, drug and and on one hand, it sounds like the right thing to do. On the other hand, it sounds like there's some side effects, and one of those side effects is it can exacerbate brain bleeds. But the doctor was great, and when I asked him if it was his spouse, what would he do right away? He was like I’d give her the drug, and I was like, OK, give him the drug.

00:06:47 Carla Tierney-Hendricks
Yeah, I mean, it's a fast-paced environment. Oftentimes you're dealing with medical acuity like you said, where someone's condition can change on a dime, right? Like you might be stable one minute and then their condition can quickly change for the better for the worse, and you have to respond to that, and you're often meeting so many different people, you.

00:07:03 Yasmen Guidoboni
Exactly.

00:07:10 Carla Tierney-Hendricks
There's so many specialties in acute care and my impression when I because I worked in rehab, mostly in transition to working in acute care after being a rehab provider for so long. And I felt like he felt so siloed to me because everybody had a specialty. And then, you know, coming in with their expertise but making sure all that care was coordinated, always felt like a lot of work on my part as a therapist to make sure. I was talking to the neurology team that I was talking to case management, that I talked to the nurse that I talked to the family to.

00:07:35 Yasmen Guidoboni
Exactly.

00:07:43 Carla Tierney-Hendricks
Make sure that the loop was closed and all that information transfer. I had a patient tell me one time the acute care hospital saved their life. But Spaulding gave them, Spaulding helped them live again kind of thing, and it's and I think that can be true.

00:08:01 Yasmen Guidoboni
It's a great statement. True, right? In the acute care, you're really managing the immediate need and sometimes thinking about, well, what's next is not always on the radar, maybe rightfully so, because you're really trying to manage the acuity of the situation. Exactly.

00:08:23 Shonali Gaudino
So Carla started as a therapist. And now is a PhD researcher. So what made you make that transition?

00:08:33 Carla Tierney-Hendricks
So I worked in clinical practice for nine years before going back for my PhD. I've always been interested in research, so I've always dabbled in research as a clinician, really got to the point in my clinical research career that it was hard to balance because there isn't time built in our day as clinicians and Olivia probably knows, to really engage in research. And I also felt like I could benefit from more training, too. And what are the methodologies that I should be using to explore these ideas? But so I had the interest in research. Plus I had the experience as a clinician that, I really felt the urge that things needed to change and what I was seeing in clinical practice that, especially in a when I worked in acute care, I've worked across the continuum, so just seeing patients for snippets and episodes of time but not really seeing well what happens as they move along that pathway. Especially because as you know, stroke survivors, you go through many different pathways of care in your recovery. You know, in the acute phase, you're really managing those medical issues and moving on to thinking about your recovering rehab and then reintegrating into the community. So there's all these points of recovery along that trajectory. And I was only seeing bits of that. And never knowing what happened to people after they left, you know my care or like my view. And so I became very interested in understanding trajectories for people, thinking about are we implementing best practices from what we know from the research sometimes.

00:09:57 Yasmen Guidoboni
Hmm.

00:10:14 Carla Tierney-Hendricks
Research doesn't always fit with the needs of the context that we're working in, so it really became a desire or passion to facilitate change in a way that was rigorous and had methodology.

00:10:31 Shonali Gaudino
Which is leads to the type of science that you're you're studying now, which I want to get to in a second. Olivia, you're also nodding your head on. What is this experience?

00:10:41 Eli Pier
After Paul's stroke in August 2023, he was transferred to Spaulding Rehabilitation in Charlestown, where he began his recovery. One of the constants in his journey has been his speech language pathologist, Olivia.

00:10:53 Olivia Gampel
So I've been working at Spaulding in an outpatient capacity for the past three years. The reason why I love outpatient so much is because, you know, as Carla mentioned, when when you're in an acute care environment, right, it's exceptionally fast-paced, everyone has their specific role. You communicate as you're able to, and the patient moves along that continuum of care. When you're in an outpatient rehab environment, I now have the time to develop a personal connection and relationship with my, with my patient or client, right? And we can use that to develop our treatment plan, right? And really focus on. OK. I have the time now. To figure out. What do you want out of this? Right. How does your communication difficulties impact the rest of your life, and how can I, being I always call myself a professional problem solver? How can I help you solve those problems?

00:11:49 Yasmen Guidoboni
And you're very good at it.

00:11:54 Olivia Gampel
Thank you but, yeah. So, so that's that's what brought me here. And I just, yeah, very grateful to be working with with the two of you.

00:12:02 Eli Pier
After his stroke. Paul experienced aphasia, a language disorder caused by damage to the parts of the brain that control speech and understanding of language. People with aphasia may have difficulty speaking, reading, writing and understanding others. These issues can be addressed in therapy.

00:12:23 Olivia Gampel
I've been working with Paul since I actually made a note of this August 29th of 2023, and we've been seeing, you know, and working with each other. Three times a week just about since then very consistently.

00:12:38 Shonali Gaudino
That's a much longer time period than I would have thought often.

00:12:41 Olivia Gampel
Absolutely, you know. It. Course of care is dependent on many many factors. One of those is patient engagement and I must say that Paul is probably one of the most engaged patients I've had the pleasure of working with exceptionally diligent with his home exercise program. And I think that's why in part you've made the gains that you have. Right. So really a model example. Thank you.

00:13:07 Yasmen Guidoboni
Paul is always anything that's been important to Paul ever in all the time I've known him, he's been very motivated towards or with, and this is no different. Like no exception here. Paul wants to go back to exactly the way things were. We're not sure that that will ever happen, right? Or be completely true, right? But you I don't know. Every day you say I just want to get better. Yeah. I want to get better, right.

00:13:36 Paul Guidoboni
Yeah. Yeah, I think that's. Yeah. Yeah.

00:13:38 Yasmen Guidoboni
So that's really the goal.

00:13:41 Paul Guidoboni
And then step back one thing about the bond that you have, the bond that I have with Olivia, right. It's an and obviously huge and other people as well that in the hospital. I mean, I actually see them. I I a lot of them.

00:13:57 Yasmen Guidoboni
More than your family?

00:14:06 Paul Guidoboni
I know their names already and I they they, I see them, and it's it's again before my stroke you never really, you know, thought about this, but the the bond that I have, obviously with Olivia, other people, it's just amazing.

00:14:14 Shonali Gaudino
Carla, tell us about the type of research that you do. Maybe define implementation science or health system science like that?

00:14:24 Carla Tierney-Hendricks
Sure Yeah. So as I entered. The PhD program I became interested in this field called implementation Science. And how that's formally defined is it's the study of strategies or methods to get best practices or research evidence into routine clinical care. So there's a statistic out there that it takes 17 years for 14% of research to actually get into routine clinical care, and that's unacceptable because we're putting a lot of research dollars and developing treatment protocols, measures, different innovations that can improve patient outcomes, but it's not actually getting to the patients that we.

00:15:05 Yasmen Guidoboni
Yeah.

00:15:05 Carla Tierney-Hendricks
Serve and there are many reasons for that. It some of it could be that you know those innovations don't fit well into the clinical context or that they were developed without feedback from key partners like clinicians, people with lived experience, so they're not really meeting the needs. And so the idea is implementation science helps us to look at these innovations, figure out how might we structure processes to help get them into practice. Can we adapt them and then retest them in a way that's more feasible to be used in routine care. So it's a little bit different than traditional research paradigm because we're really interested in the system as well as the intervention itself. I like to be able to still wear my clinical hat and have that perspective as well as thinking about it from a research lens and really how do we blend those 2 worlds better.

00:16:06 Paul Guidoboni
Yeah.

00:16:08 Carla Tierney-Hendricks
So one of my dissertation projects was around engagement. So how you participate or motivation in your therapy? And so prior research on engagement and rehabilitation had really focused on the client coming to the relationship with the therapist, with the willingness and motivation, right, and the capacity to engage. But to me, that didn't feel right. Right? Because especially when we're dealing with individuals that may have deficits that impact their ability in the area of capacity or communication to participate and then additional work had also been done, looking at the therapeutic relationship between the clinician and the patient, you were talking about that a little bit, Paul, about the connection that you have with Olivia.

00:17:04 Paul Guidoboni
Yep.

00:17:05 Carla Tierney-Hendricks
So I wanted to take that work a step further and particularly for individuals with aphasia, who already potentially have barriers in developing those interpersonal relationships with their healthcare providers. How do those individuals experience engagement and what interactions within the rehab contacts really contribute to those feelings of being engaged in their care.

00:17:27 Paul Guidoboni
Hmm.

00:17:30 Carla Tierney-Hendricks
So this was a solely qualitative study where I interviewed individuals while they were in patient here at Spaulding on how they experienced engagement in their care. And from that study I was able to develop this somewhat conceptual model or principles of practice. I like to call them of how do we support engagement with our clients and what we really learn from that work too is that engagement is dynamic, right? It's it's not a static trait. Where someone's engaged or not and that it evolves over time and that it's really a collaborative process between the client and the providers. You know, you know Olivia might do some things to support your engagement in your care, but then you also are invested, which in turn leads to her investment in your your care. So it really is a dynamic process. And so the model also, like, so there are these six principles of practice, but they also align with these idea of kind of three primary dimensions, where there's this cognitive dimension to engagement. So being able to have that capacity, like knowing your progress, knowing about aphasia and your recovery. And then there is this affective dimension. So that's that kind of interpersonal relationship that you were talking about, that connection that you have with Olivia. And then there's the behavioral dimension, which is really the part that we tend to focus on. I think what we've measured engagement in the past is does the patient perceive? Are they doing the therapy?

00:19:12 Paul Guidoboni
So. So the the last is the

00:19:15 Yasmen Guidoboni
Behavioral part

00:19:15 Paul Guidoboni
The last. Yeah, the last thing is that you can't, in other words, is the client doing their homework, right. Is that kind of what you're saying? Yeah. Then right.

00:19:20 Carla Tierney-Hendricks
Right, yeah. But there are all these other pieces that also feed into that that are really important, right. That therapeutic alliance, which is the affective piece, but also you. That's the best we have.

00:19:27 Paul Guidoboni
Yeah.

00:19:30 Yasmen Guidoboni
Yeah.

00:19:35 Carla Tierney-Hendricks
You know, as providers we need to help educate so that you feel like you can then reciprocate that that knowledge back.

00:19:43 Paul Guidoboni
Yeah. Just a quick question is it's kind of the same thing when I go say for instance, I see Karen. Which is the stroke club once the in other words, if the client does not want to do it, then what can you do? How do you get? How?

00:19:52 Yasmen Guidoboni
Oh yeah. Ohh.

00:19:58 Paul Guidoboni
Do you get them to do that?

00:19:59 Carla Tierney-Hendricks
Right.

00:20:00 Paul Guidoboni
But you may not, right?

00:20:02 Yasmen Guidoboni
Well, first of all, they need to know about it, right? Which starts with the who's going to. You know, show show you or educate you and so that you know that something like that is even available.

00:20:17 Paul Guidoboni
Yeah.

00:20:18 Yasmen Guidoboni
Then that's the reciprocity thing. I think, right that you're talking about, right. That goes back and forth.

00:20:23 Olivia Gampel
And and I think too, Paul. You might recall when I first met the two of you and we spent a lot of time talking about what is aphasia, right? What is this word that we're throwing around or, you know, yes, me. And, you know, we talked about what are some communication strategies like you can use.

00:20:33 Paul Guidoboni
Yes.

00:20:45 Olivia Gampel
To support Paul and then later, even when Thomas came to visit on his break right, tell us like sorry not to, but so. So, Paul, remember when when Thomas came to visit?

00:20:50 Yasmen Guidoboni
Exactly. 00:20:51 Yep.

00:20:55 Shonali Gaudino
Better you guys start.

00:21:02 Paul Guidoboni
Now so Thomas. He came which which he wanted to go. Yeah, it was just Thomas.

00:21:10 Yasmen Guidoboni
And I came because he was interested, right?

00:21:15 Paul Guidoboni
Olivia and Thomas grasped or helped with Olivier just about my, my my situation, my my stroke, and Thomas had all sort of questions to to Olivia. That was actually really good because I left we back to when we to the other home, Thomas said. He started to go on the not the app, but his own and he went there and he said, he said he he started helping with sentences. When you were starting around that time we're trying to do sentences and Thomas said to me at home and Thomas was like my he was my.

00:22:00 Yasmen Guidoboni
Working with you on tactis

00:22:02 Paul Guidoboni
Yes, but he, but he was all Thomas was doing. It wasn't one of the apps that not one of the apps that Olivia gave me, but Thomas did something in his own, in other words. And he said Thomas brought it himself. And he said OK, OK, Dad, would you help me with sentences. So he, you know, which a lot of kids probably wouldn't, but Thomas just kind of get grasped it.

00:22:30 Olivia Gampel
So I think what really sticks out to me is being a co-creator, which is that bidirectional knowledge exchange. And I think about that in the context of your work, Paul. And you know, you being a wealth management advisor and have been for 34 years, right? How that is ingrained in you as a part of you and a huge value to you as your knowledge of the this and so thinking about OK, well, how can we utilize this in terms of therapeutic activity and so together like I you know, I wish I knew more about the financial realm than I currently do, thankfully thanks to you, Paul. I've learned a lot really true knowledge sharing there. But you know, we had to have these discussions about, OK, well, what exactly do you do and how can we take steps toward whether or not you're going to back to work tomorrow in two months, in six months, in a year or in two years? Whatever it is, whatever you decide to do. Right. This is a big value to you, and so how can we work together and develop treatments that are functional and meaningful and that you are you have a drive to actually do and then implement. So that's something that sticks out to me in particular.

00:23:54 Shonali Gaudino
Do you feel like that there are moments that? You remember you might have to think about it where you like? When did you really feel alone?

00:24:01 Paul Guidoboni
Both of us or yeah.

00:24:03 Shonali Gaudino
You know one of you, you probably have different moments, maybe.

00:24:05 Paul Guidoboni
Well, I obviously wouldn't know. Well, I guess I guess for me when I was in Spaulding when I got transferred to Spaulding and just thinking it by. And. Night. That's when you get to.

00:24:22 Yasmen Guidoboni
The beginning right at the very.

00:24:23 Paul Guidoboni
Yeah. I don't want to say the word, not not hopeless.

00:24:25 Yasmen Guidoboni
Beginning.

00:24:29 Paul Guidoboni
Although that's kind of but like, especially when you're just at the end and everybody's gone. Yeah, yeah.

00:24:37 Shonali Gaudino
Yeah, you're laying there and you had.

00:24:39 Paul Guidoboni
Oh, you're you're. You're just trying to. All this is going through your mind. Yeah. You know what's happened? What's happened to me? What did I do? What did I do to myself? You know, now I'm. I got. I got my kid. I just mean it's like it's these whole things. And you're sitting there at at it's it's. It's scary, somebody that. He's never, you know, just wake up that day and August 1st and boom then, it's just your whole life has just turned.

00:25:09 Shonali Gaudino
Yeah, it's funny. You're saying that you felt most alone, when you were actually physically alone it really like that's the time.

00:25:15 Yasmen Guidoboni
I think that. You know, I think it's really hard for us. Together, right, all together as a family unit to feel like we felt very alone once we were at Spaulding. You know, if if, if every place that provided this type of care actually provided in this way then everybody would be better off, right? The world would be a better, a better place. So I think we were like, we're the lucky ones. I feel like. You know what I mean? Obviously, we're here to talk about Paul's had a stroke, but I can certainly think of other times in our lives when we've been faced with, you know, some kinds of medical challenges where we felt like who? You. Was in charge. Here, right? Like I don't know anything or I don't know really where to look. Is supposed to call and and. Does anybody really care? Right? I think it's hard. It would be very hard to say that we felt like you you felt ao alone, and that nobody cared while you were here at Spaulding. Because I think at Spaulding, for the most part, I I think. Your feelings of oh, I feel alone and I'm kind of stuck now. What's going to go on? We're we're more the kind that probably would have been anywhere. But fortunately here you didn't stay. You didn't stay feeling that way, right? Because you quickly were engaged in all of these things. Like you did not need physical therapy for very long, but they had you up and doing it right. Occupational therapy. You know, I think I think they. Offered it to you for longer than I thought, that they wouldn't. But looking back now, I think it was a very valuable, very was very important for you to for you to have that.

00:27:19 Paul Guidoboni
I think that I don't know. Maybe go back. Just gonna go back and just.

00:27:21 Yasmen Guidoboni
Right.

00:27:25 Paul Guidoboni
Have to say this right, you know, pride in my stroke, I think Thomas is. Thomas, that was in May or June before my stroke, yeah.

00:27:36 Yasmen Guidoboni
Ohh you felt a little or or.

00:27:39 Paul Guidoboni
Yeah. Yeah. Yeah, so. Yeah, that that was hard when Thomas had a diagnosis his.

00:27:54 Yasmen Guidoboni
I think what you're trying to say is that you know.

00:27:58 Paul Guidoboni
Yeah, that was just, yeah, just well.

00:28:02 Yasmen Guidoboni
Our son had a had a cancer diagnosis in May and there's not a lot of space between May and August, when Paul had the stroke. And if if stroke really is the factor that we seem to believe it is now and it when it comes to stroke, I think those months not only were, they piled a lot of stress on to Paul on top of the daily work, stress and all of that because it was really almost two weeks to the day from when Thomas had his first cat scan after the surgery and everything. And they said, OK, it looks like he's all clear and can go off to college. That was when Paul had the stroke.

00:28:41 Paul Guidoboni
You know, just for a variety of things, again actually obviously with my stroke here, like I said earlier about sitting in the bed and Spaulding, you're. Hopeless. You just there's nothing you can do. And then obviously you can't even. You can't even do any words. It's like nothing, zero. So. And also I remember again speaking, excuse me, sitting and Spaulding myself, and again Thomas was going well that that week or two he was going to going to Texas. And then I thought about myself and Spaulding myself, saying Thomas's.

00:29:20 Paul Guidoboni
When he got his diagnosis that just that. Yeah, it just it was just very, very difficult, yeah.

00:29:27 Shonali Gaudino
I think maybe started actually with cancer, the concept of survivorship program, which is so obvious to people who have gone through a cancer diagnosis that it follows you for the rest of your life, right? And that there are things certainly like emotionally and health wise, but also even like physically. Sometimes. Like that will continue to be a part of your life always. So this survivorship model is this idea that like, it's always going to be with you. So let's have programs that will always be with you. Let's have systems that will always support you and ways to be able to connect you back in. And cancer has done that so much better than all of these other conditions like stroke. Which you know I have no doubt that you're going to continue to get better and that you're like. But there will be a piece of it that will always be with you, yeah.

00:30:18 Carla Tierney-Hendricks
Right thinking about, since we're talking about healthcare, we'll kind of use that as our frame of reference. But thinking about not only changing the individual and not really having the full responsibility of change beyond the individual in terms of like I expect Olivia that she's going to be implementing best practices all the time in her clinical care, which I'm sure she does.

00:30:40 Olivia Gampel
Of course, yeah.

00:30:42 Carla Tierney-Hendricks
But how do we create processes in our organizations? That support that. Best practice so that we could collectively all work to evidence based practice. And optimizing outcomes and care for the people we serve, right? So it's this idea of not only changing the individuals, but also changing processes in the system. So like when we think about healthcare, right, we have policy. We have these broader systems that kind of dictate somewhat how we deliver care. Then we have the organization and different organizations and hospital systems might have different missions and priorities and resources. And then we have the individuals, right, we have the therapists and providers we have, the people that we serve, recipients and and so we all need to be at the table when we're thinking about developing interventions that optimize care, so we need to think about all these levels. That's really what kind of system science is about. Recently, actually our national organizations of the American Speech Language Hearing Association just approved new billing codes for caregiver training when the the patient themselves is not present. So Olivia could provide training to you, yes. Does mean if Paul wasn't in the room and that has not been the case in the past before the patient had to be present as?

00:32:19 Yasmen Guidoboni
Well.

00:32:20 Carla Tierney-Hendricks
So thinking about that kind of code and billing is definitely a more holistic mindset because it's really geared towards the care partner. Who is a critical piece to the recovery?

00:32:32 Yasmen Guidoboni
That sounds like a huge success. That one thing alone I can imagine what it took to get that agreed to. I will say one thing that and I don't know because I because we're you're talking about coding. I I think another thing too is the movement of medical records between.

00:32:40 Olivia Gampel
Right.

00:32:52 Yasmen Guidoboni
Places. I think the one time that I really felt like, OK, we're over here. Now, what are we going to do? Some clots were discovered in Paul's right leg and while he was he's still an inpatient at Spaulding and it wasn't. It was pretty quickly, like within his first week and a half or so being here because he was having ultrasounds done periodically, and when the doctor discovered that there was an issue, they quickly put the two of us in an ambulance and sent us over to Mass General to in order to have it looked at in more depth and so at that point Paul still really wasn't communicating really well, I still didn't really want to leave him alone for very long. You know, I had gotten to the point where it was fine to leave him alone at Spaulding because I was very comfortable and confident with everybody. But we end up over there and we end up in the emergency room with, you know, you know how it messed general's emergency room is. I thought you've got to be kidding me. They sent us over here to sit in the with the general population in the emergency room and I'm thinking, who knows what anybody sitting here with us has? Great. All I knew was everybody was wearing masks again. And I was just like, all I could think of was, is how long are we going to sit here? Because I don't need him to get anything else, right? I don't, I I don't need him to get the flu or COVID or anything right now on top of what he's dealing with. And it turned out that. We sat where we were sitting for probably close to an hour when I was like something must be something's wrong. They put us in the wrong place. They that's not where they were supposed to to put us. They were supposed to put us in and also another waiting area, but a waiting area with other people with like issues waiting for like testing. And I think that's probably the most upset I was in the whole.

00:35:11 Paul Guidoboni
Oh no.

00:35:11 Yasmen Guidoboni
Thing somebody finally. Figured out somebody was looking for us and I happened to hear from like way across the room amongst all these people. I thought I heard somebody say guidaboni and it's not that common last name. And I said to Paul just a minute. I'll be right back. And I went over and the woman at the desk said. Oh, I'm so glad you heard that. That was the doctor that just came in because they're in a private room waiting to talk to you when they don't know where you are. So you know that that to me was a bad. That was like a, you know, that was a disconnect. Thomas and I had awakened at before 4:00 AM that day. Because that's when he left to go to school, he decided. You know, he made the decision. He was, we convinced him. You should go. You need to go. He can't, you know, stay back because of this and. I went into the day feeling great. I can go over to Spaulding. Everything's going to be fine. I got a call from Spaulding saying the doctor's waiting to talk to you, basically to tell us about the clots and we needed to go to MGH and you know, again everything ultimately worked out, but that was not the day that in my mind I that's not how I thought the day was going to unfold.

00:36:45 Carla Tierney-Hendricks
And as yeah, as we mentioned was that I trusted them when you were talking about doctors and how.

00:36:45 Paul Guidoboni
Yeah.

00:36:52 Carla Tierney-Hendricks
Important it is to build that trust, and in the paper I kind of use this metaphor of a journey, and your therapist is really this trusted guide leading you on this journey and a big piece of that is knowing you.

00:37:07 Yasmen Guidoboni
Exactly.

00:37:09 Carla Tierney-Hendricks
Have a friend.

00:37:11 Carla Tierney-Hendricks
This connection. Somebody that's really looking out for you and really acting in your best interest.

00:37:18 Yasmen Guidoboni
Since I think very early on, but so continuing. They you're very you are very interested in, you know, if you go back to your if you go back to your finance job that's great and and all good and everything but. You want to volunteer in any capacity that you can to help anybody else that is trying to work through having had having had a stroke and.

00:37:46 Paul Guidoboni
Yeah.

00:37:48 Yasmen Guidoboni
I think this is fabulous because in Paul's prior work life, not a lot of free time for, like soccer made me think of it. I think about the times when you were able to coach, you know, Thomas at soccer or basketball or, you know.

00:37:49 Paul Guidoboni
Yeah, yeah, absolutely. Yeah, yeah.

00:38:07 Yasmen Guidoboni
I think most always golf because that's always been his, his his big thing. But to find time to do that was.

00:38:08 Paul Guidoboni
Whenever I can. Yeah. I'll say that, yeah, one of my.

00:38:16 Yasmen Guidoboni
A trick right for for Paul and for our family. I like the idea of you working less professionally and having more of an interest in wanting to just do something that's helpful, helpful to others but meaningful to you.

00:38:27 Paul Guidoboni
Yeah.

00:38:33 Olivia Gampel
Paul, you should also mention one of your like core phrases which I love right you you did this kind right? What it you got to?

00:38:40 Paul Guidoboni
Keep keep it going.

00:38:42 Yasmen Guidoboni
Going, yeah.

00:38:46 Eli Pier
One of the biggest takeaways of our episode today is the importance of a holistic view, not just of the patient, but of the system around them. It's important to recognize that families like Yasmen and Paul don't just need therapy, they need coordination, continuity, and a care team that sees the full picture. As Paul and Yasmen rediscover what works for them and navigating insurance constraints, adapting to new communication tools, and embracing the support of their clinicians, we as a healthcare system have a chance to learn and improve.

In the meantime, Paul Yasmen and Olivia continue to work together, tracking progress, refining goals and showing us what recovery looks like when determination meets collaboration, Paul's motto says it best. Just keep going.

Thank you for listening to this podcast. If you've enjoyed this podcast, please know that liking, subscribing and sharing is essential to sustaining our work. We release episodes regularly, so stay tuned for more stories. The finding strength production is a collaboration between the Rehabilitation outcome Center at Spaulding and our Model Systems. The Spaulding Harvard Traumatic Brain Injury Model System, the Boston Harbor 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.