Dan Keller 00:08
Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller. At the Parkinson's Foundation, we want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research, the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow. Parkinson's disease is a complex condition with symptoms and needs that go beyond addressing just movement difficulties. And while it's advisable for people with PD to have a competent movement disorders neurologist to manage their medical treatments, it's really best to have a team of healthcare professionals who can address those additional needs as they arise and to coordinate care as the disease progresses. I spoke with Lisa Mann, the nurse and education director for the Oregon Health and Science University Parkinson's Center, and she told me who should be on the core team and how to bring other therapists and affiliated professionals into the fold as needed. She began by explaining why a team approach achieves the best outcomes.
Dan Keller 01:33
Why is it important to have a team, as opposed to a physician or a physician's office?
Lisa Mann 01:40
Well, I think with Parkinson's disease, it's really unique as a chronic illness in that there's so much more to it than just having a diagnosis and having kind of standard medical management of either pharmaceuticals or surgical interventions. It has not only the motor or movement symptoms that are involved with it, but it also has a whole host of non-motor symptoms. And because it's a progressive disease, and it's going to change over time, and disability is going to become more and more of an issue, it really takes looking at how that individual's disease is developing and what's best going to help them. And a lot of the healthcare providers that we consider important for a team really have a lot to contribute to care in Parkinson's as it progresses. So who should be on a team? What does it consist of? Initially, I think it's important, of course, to have your movement disorder specialist and preferably a nurse who's well-versed in Parkinson's disease, but the team should also include rehab therapists such as a physical, occupational, and speech therapist who have been trained in treating Parkinson's disease as well. And then the team can become anything else that might be needed. For sure, during the course of the disease, a social worker is very important. But we also encourage people to have other team members that they look to. It could be their exercise trainer. It could be someone within their community that they want to train up in Parkinson's disease to understand it a little better and help them out. But initially, I think the core is the rehabilitation therapist, the nurse, and the social worker.
Dan Keller 03:34
Who coordinates all this?
Lisa Mann 03:37
Generally, it's the nurse who is tasked with coordinating it in conjunction with the specialist.
Dan Keller 03:45
Does this exist mainly in centers of excellence, or can people find this in the community?
Lisa Mann 03:51
That's one of the challenges. For the most part, we do see well-developed teams in centers of excellence. That's part of being a center of excellence for the Parkinson's Foundation. However, one of our goals is to train other rehab therapists so that they understand it. So at OHSU Parkinson's Center, we have an initiative where we go out and train other teams throughout the state of Oregon, so that when we refer people to rehab therapists in their community, they have someone knowledgeable to treat them.
Dan Keller 04:24
How do you engage this team? Or when do you see everyone all the time, or is it pick and choose as needed?
Lisa Mann 04:33
I think it can be something that really needs to be, again, tailored for the individual with Parkinson's disease. Initially, I think it's important at diagnosis, or within a year or two, to see the whole team—basically the physical, occupational, and speech therapist. Not only can they do measurements and establish what a baseline is for the individual, but they can also help educate them in what may be coming and start to do therapies that could help prevent issues from developing sooner than they might.
Dan Keller 05:08
Is there evidence? Can you measure that when people engage a team or a team exists, outcomes are better longer term than if it didn't happen?
Lisa Mann 05:19
That's one of the areas of research that is just starting to develop in Parkinson's disease. We're starting in the last years to see a lot more research by the individual therapies to show what they're doing is effective for people with Parkinson's. But a whole team being evaluated can be challenging, and there are initiatives, particularly by Dr. Bloem in the Netherlands, to look at that. And it's just starting to be studied, and it's a little bit mixed because it's hard to study, because there are so many different variables in it.
Dan Keller 05:58
What's the advice to a newly diagnosed patient? How do you get a team together or find one already in existence?
Lisa Mann 06:06
Usually, when I have the opportunity to speak with people who have been recently diagnosed, I do talk about the importance of what different team members can bring to their care, how they can help with their education, and how they can help them throughout the course of the disease. And then they can look to either a center of excellence in their community, or, again, I try to have a resource for them where we can guide them to the people within their communities that can be helpful.
Dan Keller 06:37
Do people find it more helpful or somewhat overwhelming that they're faced with all these people who are going to help them, but that's appointment after appointment?
Lisa Mann 06:46
That's a great question, because we do hear that. And so one of the challenges, I think, is we really have to be patient-focused. We have to make sure that the patient and the caregiver are getting the care they need at the time that they need it. And so part of the job of the nurse and each team member is to make sure that the individual is not becoming overwhelmed, or their care partner isn't becoming more burdened by appointments, but that we tailor it and time it in such a way that it's beneficial for them. So we have to focus on really what are their issues of quality of life, and how do we meet that with the team? And sometimes, where there can be a lot of help from a particular team member, they may take a back seat just because we don't want to overwhelm the patient.
Dan Keller 07:37
Where does the care partner fit in? I mean, are they just bringing the patient to these visits, or are they actually part of the team or being helped by the team?
Lisa Mann 07:46
Whenever I give talks to patients and caregivers, I always say the first member of the team is the patient and the caregiver, and the caregiver has such an important role. Early on in the disease, they may not even understand exactly how important they will be in that partnership as the disease progresses, but I think it's important for them to attend these appointments even in the earliest phases so they learn more about Parkinson's as well. And then as the disease progresses, they become integral in being trained in helping the Parkinson's patient by the rehab therapists.
Dan Keller 08:25
It sounds like you're trying to prepare them for no surprises, that they're ready to handle what comes along.
Lisa Mann 08:30
Exactly. I think we really want to prepare for the worst but expect the best.
Dan Keller 08:38
What else is important to add?
Lisa Mann 08:41
I just think that, again, it's important for people to understand that there are healthcare providers in so many areas that have expertise that can help them during their progression of Parkinson's disease and their journey with that disease, whatever it may mean for them. Everybody's going to be different. And so a team can be different, and it can also include many different experts in other areas to handle non-motor symptoms, whether they be, you know, depression, so you might want to see a psychologist, or urinary issues and see a urologist. There's just a lot of support out there that hopefully we can bring to the patient when they need it.
Dan Keller 09:24
It sounds like there's a core team, but then now you've just referred to or alluded to this sort of peripheral team—urologist, psychologist, someone's exercise trainer. Are they coordinated with this, or do you deal with them, or is that just up to the patient?
Lisa Mann 09:42
So really, we try to help guide them again to people who have experience with Parkinson's. I think that any healthcare provider can be beneficial, but if they don't understand Parkinson's and its unique aspects, they can sometimes not be as effective as they could be if they have that training.
Dan Keller 10:03
Very good. Thank you.
Dan Keller 10:13
If you would like to find a Parkinson's Foundation Center of Excellence near you, or access other resources for coordinating care across the spectrum of PD needs, you can call our toll-free helpline to speak with our PD Information Specialists. They can answer questions and provide information about this topic or anything else having to do with Parkinson's. You can reach them toll-free at 1-800-4PD-INFO. If you have any questions about the topics discussed today, or if you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every other week. Until then, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO—that's 1-800-473-4636. Thank you for listening.
