Celebrating the Parkinson's community

John Dean: Yes. Thank you. Thank you, Michele, and happy world Parkinson's Day to you. I'm very glad to be here.

Dr. Michele Matarazzo: So let's start by painting a broader picture. When we talk about Parkinson's care, how many different [00:01:00] health professionals are actually involved beyond just the neurologist?

John Dean: Yeah, I mean, it, definitely takes a team to really do this if you can, if you're lucky enough to have access to one. I have looked back to that Lancet article from a couple years ago. I think we all use that graphic quite frequently. That has, the sun in the middle is the person living with Parkinson's and their care partner, maybe their family and nearby them are the specialists.

The neurologist and a nurse practitioner and maybe their primary care physician in their nursing. That's the kind of nucleus of it. And you get around there and you have a core team of allied health professionals and perhaps the dieticians in there. And maybe a psychiatrist is in there if you're working with medications that are addressing some of the neuropsychological complications.

And then you have this outer ring where it can literally just be anyone under the sun. You could have. A gastroenterologist, you could have an a neuro-ophthalmologist, you could have someone working on sexual health. So really, because Parkinson's, [00:02:00] it affects so many areas of life, you can find a member of the team with expertise in that area.

But I think the core team is really the doctor and the advanced practice provider or the nurse. Alongside the person living with Parkinson's and their family, their care partners, and then a rehab team that has physical, occupational, and speech therapy, as well as anyone else that might be in that circle. 

Dr. Michele Matarazzo: Great. Now you have a lot of experience helping people with Parkinson's disease. In your experience, why is that so important to have a multidisciplinary approach to treat people with Parkinson's?

John Dean: On the one hand I think that there are a lot of factors that. Maybe a single clinician could cover a lot of ground, but you're going to need interventions that are gonna focus on specialized expertise. I'm a speech language pathologist. We'll be working on cognition. We'll be working on voice.

We'll be working on communication. We'll be [00:03:00] working on swallowing. Those are all areas that I can address, and an occupational therapist can get some of that. But then they have a whole area of expertise within activities of daily living and fine motor control and transfers. And then all of a sudden that ties into the expertise of a physiotherapist with gait and balance and fall risk.

And then all of us are working along the same continuum of making sure that there's functional components that we are addressing. And so again, it's possible to just have a single clinician try to work all that, but you really miss the breadth of what's being affected by Parkinson's.

Dr. Michele Matarazzo: Yes. And also you, you were mentioning every patient has a different set of experiences, manifestations, issues, side effects. Every patient is different, so every patient need a personalized sets of people who can actually help him or her in the journey of Parkinson's disease, or living with the disease.

In, in your experience, do you have a, specific example that you want to share with our [00:04:00] audience on how a collaboration with other health professionals might help someone with Parkinson's?

John Dean: A lot of my experience comes from working in a skill nursing environment with a lot of rehab, what we call subacute rehabilitation. So if you go into a hospital, you're doing acute care. And then if you need to continue to do acute rehabilitation, you'll need to be able to do it for three hours a day on a schedule.

That's LTAC, long-term acute care. And then they get to our level where they need more time and they need more flexibility. And we know that Parkinson's has a lot of ups and downs. With medications and motor and non-motor symptoms, and so we can give them that flexibility and within the context of that environment, I think really the cross pollination of the rehab disciplines, the nursing and some of the other providers, like I said I work in those environments.

We rely on the dietician. A lot. I work on the swallowing, but we're working on making sure they're getting the calories. And so that cross [00:05:00] pollination's valuable. And to give a really specific example is I'm working on voice, but I'm also working a lot on cognition about sequencing and the executive function.

And so I might take a set of guidelines from the occupational therapist, they'll come up with a little sequence for how someone's gonna get out of a chair. They'll say, back with a feet and edge of the seat, and then lean forward, and I'll use that as cognitive loading, we'll use them.

We'll have them walk through it verbally, or maybe I'll change the sequence or I'll meet, leave an item out and I can use that therapeutically in my session. And it also helps them reinforce it. So when they go to their session with the OT they've overlearned it a little bit, and then the OT in turn can use those same tools and make sure my, my patient is using a nice, clear, loud voice and avoiding the kind of voicing prompts that induce strain, like shout and yell and fight.

And all this stuff. No. We want to use good breath support and full posture and making sure we're using a nice long vowels to get the loud voice that we want. And so by being aware of what my [00:06:00] colleagues are using with my people in their sessions, I can pull from that, reinforce it, make it clinically relevant for me, but also make it usable in real time with my patients.

So they're using it when they're actually out in the community and using those techniques to stay safe and to be able to walk around. 

Dr. Michele Matarazzo: Great. So actually, as you're picturing it, we are actually learning from each other along the way. And the other professionals not only help the patient, but help you help the patient in a different way, right? So we can address problem in a more comprehensive manner, right?

John Dean: Absolutely, and I use a lot of dual task activities in my sessions and obviously I work closely with physiotherapists and they do quite a bit of that work in OTs and others in psychology, and that dual tasking is allows me to replicate daily activities, but it also lets me make the activities interesting and demanding.

And so what I'm doing with my edge of the dual tasking, which is probably seated, and using the clear voice, my [00:07:00] PT and my OT colleagues can take in and use in the clinic while they're doing more physically demanding things. Letting them replicate the kind of lot activities of daily living the way they would, you're gonna be on the phone emptying the dishwasher, and you're gonna be moving around, or you're gonna be walking across space and someone's gonna ask you, pick me up a glass of water while you're in the kitchen.

The things that we do day in and day out. I can take those activities and I can practice them in my way, in my clinic, and then when they go to the clinic with PT, they can take those and extend them and use it with their approach. It becomes very relevant and really a applicable to daily life.

Dr. Michele Matarazzo: Fantastic. Now I wanted to talk a little bit about some specific professionals involved, and you already mentioned some of those, but maybe not everybody here knows what a speech language pathologist does. What is the role of speech language pathologist in the care of people with Parkinson's?

John Dean: Typically speaking, a speech language pathologist is probably the American term. You sometimes you hear [00:08:00] speech and language therapist in different organizations, or speech language therapist. Speech therapist is really the general term that I cover. All of us, wherever you are. And it belies the fact that although we're working quite a bit on communication, voice and articulation and the cognitive components of communication, the language. We're having a conversation and I'm keeping track of what you're asking me, and maybe I'm referencing that Lancet article from four years ago with Dr. Bloem and Dr. Okun and Dr. Klein. And so there are all these components of cognition in there.

So that's the communication side of things. And at the same time, I also work quite a bit on swallowing dysfunction. So dysphagia is disordered swallowing. It's anything that interrupts the food going from the lips all the way into the stomach. And so I can address that by strengthening musculature, by adapting foods or even posture or possibly by doing compensatory things that might allow me to make it safer.

And both of those kind of tie in. And [00:09:00] dovetail an occupational therapist, does quite a lot with swallowing as well, so I might work with my colleagues in that respect.

Dr. Michele Matarazzo: Yeah. Talking about that I know, you work closely with physiotherapist and occupational therapist. What are some key contribution they make to the care of people with Parkinson's?

John Dean: I think that physiotherapists are quite dominant in our workforce. I think that they're often the go-to resource for a lot of interventions because their work has a direct impact on fall risk, which is a big deal. Like my profession has a big impact on swallowing, dysfunction, and pneumonia risk.

But I'd say falls are probably the most important thing that we want to prevent. And so they can be working on gait, they can be working on transfers, they can be working on issues that are specific to Parkinson's, such as freezing a gait, which can lead to a very severe fall risk. And then they can also do the kind of generalized conditioning and strengthening that will allow people to stay healthier.

We know that. Exercise is a huge factor in living well with [00:10:00] Parkinson's. It has influence on progression. It has influence on non-motor symptoms. It has influence on just general quality of life, and so they can help someone exercise more safely and direct those exercises specifically towards their deficits.

Dr. Michele Matarazzo: Great. We could talk about many other professionals that are part of this multidisciplinary team. But I wanted to change a bit the scenario, and I wanted to go into the patient's home and daily environment. Another vital part of the Parkinson's community is made up of family, spouses, friends of people with Parkinson's.

How do you see their role in day-to-day care of our patients?

John Dean: A couple years ago, I think the social prescription became a very important component of rehab and intervention for Parkinson's, and I think that we found that those people who don't have the proper supports, and that can be family, that can be friends, that can be just the people in their community. I think we can see the real impact that has on [00:11:00] their quality of life and over time their morbidity and mortality. And I think that's a big factor of why those family members are so important. Often, if it's your spouse, you become the primary care provider. And maybe it starts off with you're helping your loved one come to terms with what's going on with this diagnosis and addressing the things that are coming down the pike a little bit. Hopefully you're doing a little bit of future care planning. You're doing some of the neuro palliative care approaches that are advocated by Doctors Miyazaki and Dr. Kluger and others.

But then at some point they're actually going to be the person that's really providing the assistance. And it's very important for my rehab team to make sure one, that they know how to best do that so they don't hurt themselves and they avoid difficulties, but also that they know how to get the care and the help they need.

So they might need someone to come in, they might need someone to actually be, have some respite time and be in a facility for a little while. Or maybe if it's a very serious issue, they might need to be in the facility over time. And we help them educate. We help them [00:12:00] set up their house. We help them make sure they have the best quality of life, but we're also helping them make sure they take care of themselves.

Dr. Michele Matarazzo: Yeah, I think that part is very important because we all agree that their role is crucial in helping patients throughout the journey and that their role, as you were mentioning, changes throughout this journey. And they're not ready for that. They didn't study what is Parkinson's disease?

How does it change, how will it affect the person their with? And sometimes I actually find myself asking. What can we as professionals do to better support them? They carry this emotional, physical burden. What do you think we can do as professional to help them better to prepare them better to explain things in a way that they will also understand how they can help their loved ones but without being too pessimistic, about the future. Get ready. Things might not go very well but in a supportive way.[00:13:00] 

John Dean: Yeah I think whenever you're facing this disorder, especially in the early days when we're still trying to navigate whether this is really Parkinson's or one of the atypicals or something else like that, you always want to give them the best set of tools that you can for that time and maybe know a little bit about what's coming in the near future, and this is why I think it's really important for people living with Parkinson's and their care partners to work with people who have a lot of experience because you get to rely on my, having seen, a couple thousand people with Parkinson's by this point, and I can help you thin slice.

I can also help you set more realistic goals for oh, I know you want to stay here and you want to keep this level of independence, but if you wanna do that, here are the things you need. Or consider a different way of looking at move to an environment that has one floor so you're not navigating all this up and down or whatever.

And so that gives them a little bit of permission so that when they don't get into a situation where they have to fight and give everything they have before there's trouble. You can give 'em that [00:14:00] kind of a opportunity to understand this is real, this is realistic, and at this point, maybe there's a better way to do this that will keep you both healthy longer and having the best quality of life.

Dr. Michele Matarazzo: Great. Okay. So we have discussed many different individuals involved in this community, but beyond individuals. There are also some organizations. I think you mentioned that a little bit earlier or you were referring to them, like local and national associations of people with Parkinson's or even international foundations, there are some of them that are quite active.

They all work to support people with Parkinson's. How do you see their role in this ecosystem of care?

John Dean: You know, it's very interesting because I think that it's, I won't say it's unique to Parkinson's, but when you look at some of the other disorders that are in the neurodegenerative diseases spaces like Alzheimer's. Or neuromuscular diseases like ALS There are a couple of entities, but by and large, it's one entity and the rest of them are falling in line.

And in Parkinson's, [00:15:00] there's a number of entities all over. I mean, in Spain there are dozens of organizations, and I think what that says to me is one, that people with Parkinson's, once they get diagnosed, they want to help.

They make these little entities and they work to help their community, and that speaks to who those people are. And that's why I love working with them. But it also tells me that those places are able to provide very specific resources. I worked in Colorado, I worked for the Davis Phinney Foundation for Parkinson's, but before that I've worked with a lot of the nonprofits there. And what was interesting was those people are very active people from Colorado, they'll eat their Wheaties they'll eat their broccoli, they'll do all the work you give them.

And I'm now in Portugal and it's very different. It must be much more social and engaging. And I think what I love about that is each of these organizations based where they are able to provide really good culturally appropriate, boots on the ground directed towards the people that they're serving.

And that's what I like about it. And that's, I think their role is. We know you, we know your community. [00:16:00] We know the resources in your community, and that's why you come to the Parkinson's Association of the Rockies or the Davis Phinney Foundation. If you're focused on living well today or whatever, you're whatever makes you motivated as someone living with Parkinson's.

Dr. Michele Matarazzo: And I think every day are more and more knowledgeable. They don't only provide care for people who are having troubles with the disease, which obviously is a big part of it, right? But they're also there just to provide a community to people who need to talk with other people who are living the same problems and facing the same even psychological problem and issues of accepting the disease.

Also, I think. At least this is my experience. These associations on a local level, they are more and more present throughout the journey of the disease from the beginning and not just providing help to people who are facing the most extreme faces of what means having Parkinson's disease.

And I think that's [00:17:00] extremely important because it's. Again, when you're not ready for that diagnosis. And having someone who you can talk to apart from the doctors, the nurse, the physiotherapist, those professionals. Someone you can talk more face-to-face and on an, a much more horizontal level can be very supportive.

John Dean: I think that's a very good insight because they're able to provide a different kind of support than we are, and we are very knowledgeable and we're very passionate, or we wouldn't be here. But I think the organizations provide a resource for this peer to peer. And I don't know if when you sit in on a support group, the interactions between the members is a really big part of their understanding of the disease, and it helps them understand like I.

What's happening to me? How does it relate to what's happening to the others around me? We do an awful lot of exercise classes. We do a lot of online classes. And it's funny in the time the 10 minutes before class starts, there's always a lot of back and forth and they're talking with each [00:18:00] other and they have very interesting questions in responses for each other.

And I stay out of it. I'm just listing because. It's their time to talk and understand. And I think those nonprofits that you're talking about are providing that bedrock framework for them to have those interactions. It goes back to the social prescription that we're talking about before.

They're a very key part of that social prescription.

Dr. Michele Matarazzo: Perfect. Now, as we are approaching the end of this episode, if there is one message you'd like to share with the Parkinson's community today, professionals, patients, care partners, what would that be?

John Dean: Well, staying with the topic that we're talking about today, the topic at hand, I think it really is important for you to find people with expertise in treating Parkinson's or whatever diagnosis you might have if you have been diagnosed with a Parkinsonism.

I think you wanna work with a lot of people who are dealing with what you've been dealing with and know where to refer you to in your neighborhood for resources so that you can get that. And I think it's really important too, [00:19:00] because as you mentioned earlier, it's very different for each person.

I can get two people look exactly the same educational level, same diagnosis, and their progression will be widely different. So you want someone who's seen a lot of that so that they can help you understand what's going on and not be like, oh, you're a this and you all look like that and that'll never work here.

It behooves you to find the right experts, and I think that's where the International Parkinson's and Movement Disorder Society really comes into play. 'cause we focus so much on educating our members and bringing 'em all together.

Dr. Michele Matarazzo: Thank you so much, John, for sharing your insights, your passion and for being with me today.

John Dean: I appreciate the opportunity. It's wonderful talking to you today Michele and happy World Parkinson's Day to everyone out there.

Dr. Michele Matarazzo: And as we mark word Parkinson's day, let's remember that behind every person living with Parkinson's there is a whole network of people offering support, care, and strength. Happy World Parkinson's Day, everybody. [00:20:00]