Dan Keller 0:09
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 first addressed as a movement disorder, which it is, but our understanding of the condition and its treatment should not end there. Like any other chronic and progressive disease, it casts an extra burden on people with the disease and their care partners in terms of mood and coping. I asked Jessica Shurer, a licensed clinical social worker at the University of North Carolina in Chapel Hill, to describe the kinds of situations she sees, how people deal with them, and how health professionals can help. What do you find in terms of mood and coping?
Jessica Shurer 1:29
I think it can differ for everybody. Everyone is their unique person with Parkinson's. The way that I view it is we as a society, but also in the field of neurology, we call it a movement disorder, or we focus a lot on the motor symptoms when it comes to treatment and medications and exercise. But it affects more than the people living with it physically. It affects them emotionally, from a psychosocial standpoint, from a coping standpoint, because their roles, their relationships, their sense of self. So not only are there non-motor symptoms such as depression, anxiety, and apathy that can occur in addition to sleep changes and cognitive changes, but you're also coping with a chronic and progressive disorder. And so the information that you have about that disease, the attitude that you have, the support system that you have, it all kind of intermingles with the physiological aspect and can affect you from an emotional standpoint. And that changes over time.
Dan Keller 2:38
Are there different coping strategies or different concerns at different stages? I would think when someone is first diagnosed, their sense of self changes, they had plans, they've viewed their future one way. Now it's a different way. But as time goes on, how do you follow them, or how closely do you stay in touch?
Jessica Shurer 2:59
So there's a couple things there. Again, it's so different for every person. I think it depends on your attitude in general, but also your stage in life. So if you're a 40-year-old diagnosed with Parkinson's, and you're working with younger kids, you're going to view that very differently from a 70-year-old who is retired. And I think when someone is first diagnosed, they can react all different ways. I've seen anywhere from, "This is the most awful thing that could ever happen. Why me? I was always such a healthy person who was focused on exercise. I did everything right. Why did this happen to me?" to "Wow, this could be so much worse. I don't have a brain tumor. I don't have ALS. I was afraid of having Alzheimer's disease. This is sort of a relief," and everything in between. And then as you get into the disease, say a couple of years, they tend to wrap their heads around it: "Okay, this is something I can live with. I found the right doctor. I'm on the right medications. I learned that exercise helps." And then as the disease progresses, their attitude changes a little bit more. And again, not for everybody—sort of a generalization—but when the symptoms get a little bit worse, or medications aren't working as well, and the reality of the progressive nature of it kicks in, that can once again be very emotionally challenging for somebody. So I think it's really important to stay in close contact with someone when they're diagnosed, a few months out—I mean really along the whole continuum, progression of this disease—because it's constantly changing over time.
Dan Keller 4:39
How do you help them or other medical professionals help them learn coping strategies and resources?
Jessica Shurer 4:48
I think it's a really good reason to have a clinical social worker on every team. That's biased of me, though. I think that having a multidisciplinary approach to Parkinson's—more than just a doctor, or a doctor being able to say mood changes are part of the disease, or how have you been coping with it, or let me refer you to a therapist or a physical therapist, or whatever you might need at that time—some kind of health professional checking in with them outside of just the symptoms, just the medications, and saying, "How are you doing with this?" Figuring out what their strengths are, what their support system might be. There's a multitude of coping skills that people can have. We kind of boil it down to real simple things, like having a very flexible mindset, being able to adapt to the changes rather than fight them, purposely building the support system, proactively learning about Parkinson's, tapping into resources in their community if there are resources offered, such as Parkinson's-specific exercise or support groups, or reading Parkinson's resources so they understand the disease and not have misconceptions. But sometimes people try to find those things on their own. I think it's really supportive when healthcare professionals—their team—is able to point them in that direction. I have a lot of people come through me saying—not even necessarily from my clinic, but from anywhere—"I saw my doctor. They told me I had Parkinson's. They handed me a pamphlet and said, 'I'll see you in six months or in a year.'" And you're hit with this thing, and you're like, "What do I do with this label now?" So it needs to be more than that. It needs to be: here's information. What questions do you have? How are you feeling about this?
Dan Keller 6:41
Some people are out far from resources, not convenient to get to all the time. Is there anything they can do online or virtual? I mean, put together Skype meetings, support groups, things like that?
Jessica Shurer 6:57
People have to get really creative. I work and I live in North Carolina. It's an extremely rural state. Where I am in the Triangle in central North Carolina, we are very fortunate to have two centers of excellence and a multitude of support groups and exercise programs and funding for our departments on aging. When you get anywhere outside of these major cities, there's almost nothing. And so it takes a lot of creativity from the patients and the families, but also working with your healthcare team—again, hopefully a clinical social worker who's sort of skilled at tapping into resources. So if people do have internet access and ability to use the computer—and not everybody does—trying to find resources online, such as online support groups or forums. Of course, the Parkinson Foundation has our helpline that you can call if you don't want to go online and look at parkinson.org and you can talk to, usually, a social worker over the phone. But also like senior centers—I tend to recommend those because they'll have exercise equipment or they might have funding for in-home aides, even if it's only two hours a week. If there's no Parkinson's support group in your area, there might be a chronic illness or a caregiver support group in your area, where some of it might be relatable. You kind of have to cobble together those sometimes, or think outside the box.
Dan Keller 8:26
You brought up a caregiver support group. So do they have coping problems and coping strategies also, not only the patient?
Jessica Shurer 8:34
Yes, and they might be very different. I know some people call them caregivers. In the Parkinson's world, we tend to say care partner. And I'm sort of a believer that it should be a partnership between two or more people throughout the course of the disease. But with care partners or caregivers, they might not be on the same page as someone with Parkinson's. We kind of assume, especially with couples, that you're always on the same page. If you view Parkinson's one way, then your partner does too. But someone might think this is the worst thing in the world. I'm so overwhelmed, I can't do it. And their partner's like, this is not that big of a deal. We can figure this out together. One person might say, I want to be very involved in Parkinson's and go to all the support groups and learn all I can. And their partner might say, I don't want to think about it. I'm just going to live my life and pretend that Parkinson's isn't part of it. So care partners can experience their own coping challenges of all of a sudden having a role as a Parkinson's care partner or a Parkinson's caregiver. We tend to label them with that before they're even ready. They come to clinic, they might not view themselves as a caregiver, and a doctor might turn to them and say, "So you're the caregiver. Let me ask you a question." They're like, "Whoa. I never said I was a caregiver. I'm not giving any care right now." So it's their own roles and relationships and lifestyle. And you mentioned earlier the sense of future that people tend to think of care partners have that too. I viewed my retirement one way, or we had all these plans. Now what? Do I need to start thinking about nursing homes? I get those questions a lot, even when someone's very newly diagnosed: do I need to start thinking about nursing homes and my finances and Medicare and Medicaid, and who's going to take care of me? So I think care partners taking time to look at their own self-care through the process of experiencing Parkinson's is just as important as care for the person with Parkinson's, and they can't really be done in silos either. They need to be looked at as a patient and care partner, even if someone doesn't relate to those labels individually, but also together as a unit. Sometimes they need to check in with each other, and I'm always talking about the importance of effective, honest, open communication between a person with PD and their care partner, because they need to be on the same page through this experience.
Dan Keller 11:05
Very good. I appreciate it. Thanks. To find out more about mood changes in PD and coping with them, search mood on our website at parkinson.org. You'll find a variety of free mind guides to Parkinson's disease publications addressing mood, cognition, sleep, and psychosis. And you may wish to listen to episodes 36 and 37 of this podcast series on mood and depression, as well as watch our most recent expert briefing on mental health and PD with Dr. Laura Marsh. And as always, 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. Till 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.
