Episode 111: Alone in a Crowd: Overcoming Isolation

Dan Keller 0:02

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.

As we discussed in our immediately previous podcast with Dr. Indu Subramanian, social isolation and loneliness can have negative consequences in terms of mental and physical health as motor symptoms progress. Especially in these times of the COVID-19 pandemic, social isolation is a reality for many people with Parkinson's today. Aaron Daly of the University of California, San Francisco, expands on the problem of social isolation, some of the factors that can lead to it, and suggests ways to overcome it.

Aaron Daly 1:21

It's one of the things that we warn people about early on. It is sort of a red flag that if people start to withdraw from their normal activities, that really is a sign that they need to talk to their doctor and see what can be done. We know for a fact that people who have less socialization tend to do worse. They tend to report more symptom severity, and it can exacerbate what is already probably a stressful situation.

Dan Keller 1:52

Why does this isolation occur? I suppose it's multifactorial.

Aaron Daly 1:57

Definitely. You know, one of the things about Parkinson's is that the symptoms can be visible, so people may be embarrassed that they have a tremor. They may feel like they are sitting in a room and people are just staring at them and watching their hand shake, or watching them walk across a room and sort of be shuffling—that sort of thing. So I think that a lot of people tend to feel as though they don't want to go out and be social because they feel that they will be somehow stared at or thought to be infirm in some way.

There also is the aspect that people with Parkinson's tend to have much higher cases of depression and anxiety, and I think one of the major issues with depression and anxiety is that you don't necessarily feel up to being around people. That also can then drive people to isolate.

Dan Keller 2:52

Apathy is a concomitant thing with Parkinson's too.

Aaron Daly 2:56

Exactly. Yeah, the interesting thing is there is an aspect of apathy in Parkinson's disease that's actually wholly separate from depression. It used to be thought that they sort of went together, but what the doctors have seen is that they will treat the depression and the apathy will actually still be there. It's a really hard thing to treat, but it is something that we notice a lot in people with Parkinson's.

Dan Keller 3:22

Are there ways to avoid apathy, or some steps to take to gradually come out of your shell?

Aaron Daly 3:31

It's a hard one to say, you know. You can't force people to be more social; you can only encourage them. Some of the things that can be done include establishing a routine and sticking to that. I think that is really important. It's the kind of thing where, if you force yourself to get up and walk every day, after a few months you won't have to force yourself as much anymore. It'll just start to be part of your day.

The benefits of exercise cannot be overstated for people with Parkinson's, and I think that something like walking is also something you can do with another person. So you can actually have two aspects that are both going to be very beneficial, where you are both being social and interacting with another person, as well as getting exercise.

Something that we really encourage both people with Parkinson's, as well as their spouse or their care partner, to do is to establish some sort of routine where they go for a daily walk. Even if it's just 30 minutes a day, that really can do wonders for both your mental health, as well as just keeping your body as independent and flexible as possible.

Dan Keller 4:40

Are there other things that care partners can do?

Aaron Daly 4:43

You know, it's a tough thing. I actually have done quite a few programs specifically for care partners, and I think that we encourage care partners to be advocates. We encourage them to attend clinic visits with the patient to ask questions. I think that they are in a really great position to answer questions that maybe the person with Parkinson's themselves can't even see is going on, but that someone who lives with the person might see more evidence of.

I think that it is almost more important for the care partners to seek out things like support groups as a way to, one, normalize some of the things that they might be dealing with, but also it's a really great resource for sort of real-world solutions. To be able to sit in a room with people that have all experienced things like you are experiencing, or close to it, and have someone say, "Well, we had that same problem a couple of years ago, and we did X, Y, and Z, and that seemed to actually help things quite a bit." I think too often care partners are in the position where they think that they're sort of the first people or the only people that are dealing with a particular problem, and it leaves them at a bit of a loss. Being able to sit in a room or speak with other people who have had very similar experiences, I think, provides a lot of benefit.

Dan Keller 6:05

Loneliness is an emotion; it's not necessarily just a physical state of being isolated from people. So, can you address what's been called the "alone in a crowd" feeling?

Aaron Daly 6:19

I think one of the best examples I have is a series of journals that was kept by a care partner who took care of her husband for about seven years. She chronicled sort of the day-to-day life and his symptoms and things that would come up, and it slowly turned into almost a therapist for her to be able to speak into these journals. One of the things that always really struck me that she wrote about was that there was a particular day when her husband was feeling very frustrated, and he said that people only see the disease now—they don't see me, they only see Parkinson's. She said, "You know, that must be so frustrating for him, and that's something I really need to keep in mind."

I think that can be part of the big issue with people with Parkinson's being in the middle of a large group but feeling isolated. They feel like everyone just sees Parkinson's, that they no longer see the person behind the disease, and that maybe every conversation is going to be somehow dominated by, "How are you doing?" or "I'm so sorry to hear that you have Parkinson's." It's really important to remember, I think, that these are all people who have had rich, full lives, and now have a disease that is a part of their life, but it isn't their entire life.

Too often, there is this sense of, "I'm sitting in a room and all people can think about is there's the guy with Parkinson's," and I think that can be very isolating. At some point, I'm sure people just get frustrated and say, "Well, why am I putting myself through this when I'm really not getting any benefit out of it, and all I seem to be doing is sitting in a room and having people stare at me?" But I think that isolation in the midst of a crowd is certainly something that a lot of people who maybe tend toward being introverts have felt in their lives as well. It's important to remember that you don't necessarily have to go to every party, and you don't have to be in a gigantic group in order to be social. Having just one or two people that you can interact with can really do wonders.

Dan Keller 8:24

What about populations that may be particularly vulnerable to these feelings, such as in assisted living facilities, or skilled nursing facilities, or even people out in rural areas where there's not a lot of people around for miles?

Aaron Daly 8:39

Rural communities are a big problem. I've been trying to do more outreach work with areas in California where there aren't sort of hubs of support groups or Parkinson's agencies. I think that in the last year with COVID, we have certainly figured out new ways to interact that don't all involve being in a room together. I think Zoom is a great thing, but I think we all have discovered that it is a poor substitute for actual human contact and human interaction. But there are places where you just aren't going to have that as an option, and so being able to do things like play games over Zoom helps. There's a whole series of things that have been developed that allow people to interact while not necessarily being in the room together. Games can be played, and people have book clubs that they do over Zoom.

But I think that there's also such a thing as the old-fashioned telephone, and just being able to talk with somebody—you don't necessarily have to see the person's face to be able to have a social interaction. For people who might be in nursing home facilities, it can be difficult, especially if they aren't necessarily comfortable with technology, or they maybe don't have access to technology. If there are limitations in a nursing home as to the interaction of people with each other, certainly seeking out and striving to find some sort of group of like-minded people who enjoy playing cards or enjoy doing puzzles helps. You don't necessarily have to sit around and talk all the time, either; if you have a task that you are doing that is common amongst everybody, like a puzzle, those sorts of things actually can also provide quite a bit of benefit.

Dan Keller 10:26

Are there any simple and immediate things people can do to overcome loneliness? Just something to get over a barrier to start doing something.

Aaron Daly 10:38

It's hard when you are maybe trying to tell somebody to come out of their shell, or to go against maybe the feelings that they have had that tend toward not being a particularly social person, to suddenly say, "Okay, well you have to be social now because it's for the betterment of your disease progression and it's better for your mental health." Again, I think it can all start with one thing, and that might be just establishing a routine. If you start to do the same thing every day, sooner or later someone might notice that and choose to say hello, and that may spark a conversation which may lead to something else. Again, being able to get out and just exercise—to get out and be in the world every day for at least a little while—is probably the best first start for that, I think.

Dan Keller 11:30

Sometimes the spontaneous interactions are more appropriate than planned interactions. It's like, well, why would I necessarily gravitate toward this group? But sometimes you just run into people by doing things, and you say, "Hey, let's get together again."

Aaron Daly 11:47

Right. And I think that you become more confident as well as each interaction goes. Maybe it, again, starts with one person, and after a month of saying hello to somebody, you stop and you find out more about them. Then another month goes by, and then you feel confident enough to say hello to a different person, and maybe it doesn't take a month for you to then stop and talk to them again. Feeling the confidence of being able to socially interact with people and being able to start conversations really breeds more confidence, which can lead then to new directions.

Dan Keller 12:24

Have we missed anything important or anything interesting to add on the topic?

Aaron Daly 12:29

Most people just need to be encouraged. One of the things I really have seen in my work with support groups in the last year is that there have been a lot of caregivers who have reported that the people with Parkinson's that they live with really kind of "fell off the cliff" as far as activity, as far as socialization, and as far as exercise is concerned. They saw a difference—that people who lost that drive, who lost that regularity of routine, who maybe weren't able to go to Rock Steady Boxing classes anymore where they used to go three times a week, were really showing some negative impact from that.

I think that the hardest thing when you fall off the wagon as far as a routine is sort of to get back up and start doing it again. I'm very encouraged that it looks like we might be coming out of this COVID situation, you know, as vaccines become more available, and that people are going to be able to start getting back into some of those social and exercise routines that they had before. But it is worrisome that people without that routine suddenly were not interested in doing anything; that really is something to keep an eye on.

The more that people can be encouraged—and I think this goes both for care partners as well as people with Parkinson's—trying to maintain some semblance of that routine can really be beneficial as we sort of navigate the shutting down and opening up, and closing down and opening up again as far as the COVID regulations. Just trying to maintain some aspect of a routine throughout all that is going to be helpful.

Dan Keller 14:11

Very good, I appreciate it. Thanks. It's practical advice.

If you want to become more socially active but are anxious about it, Aaron Daly suggests doing one activity a week and trying a new activity every month. Try things that challenge you to become more engaged, but that do not put undue stress on yourself. If even starting something small provokes anxiety, reach out to a therapist. Ways to get socially active include asking a friend or neighbor out for coffee, attending a PD support group, volunteering, or taking up a new physical activity. The bonus there is the exercise that you'll get.

With COVID around, if you don't feel like meeting in a group, Aaron suggests attending virtual support groups, engaging in multiplayer online games, or meeting one-on-one with a friend or walking partner. The point is to do something and then build upon it.

Stay connected and visit parkinson.org/pdhealth to learn more about our PD Health at Home virtual programming, including Mindfulness Mondays, Wellness Wednesdays, and Fitness Fridays. Our Wellness Wednesday social engagement series is hosted the second Wednesday of each month, and provides participants with an opportunity to connect with others through art, poetry, music, and more. Many of the events are interactive, but are not recorded or archived to encourage participation and open dialogue.

Finally, you can browse our list of past podcasts at parkinson.org/podcasts. Ones that may be of particular interest are titled Support Group Benefits and How to Start One, How Mindfulness Techniques Impact the Nervous System, The Benefits of Exercise for People with Parkinson's, and Social Isolation and Loneliness.

If you have questions about this topic or anything else having to do with Parkinson's, our information specialists can provide answers in English or Spanish. You can reach them at 1-800-4PD-INFO. News and updates about future events and resources are available by joining our email list at the bottom of our website's homepage.

If you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. If you enjoyed this podcast, be sure to subscribe and rate and review the series on Apple Podcasts, or wherever you get your podcasts.

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.

Aaron Daley is the center coordinator for the UCSF Parkinson's Disease Clinic and Research Center (PDCRC), a Parkinson's Foundation Center of Excellence. He has a MA in Psychology and has worked in the mental health and medical fields for the past 17 years. His primary duties at the PD Center include: 1.) clinical follow up and resource education for PD clinic patients and their families, 2.) creation and presentation of community outreach programs for PD patients, caregivers, families, and support groups, and 3.) research coordinator for several ongoing PD clinical studies. With community grant support from the Parkinson's Foundation, Aaron has developed programs tailored for PD caregivers on identified topics of concern, and a PD education and outreach series for underserved populations in the Bay Area.