Nancy Nealon 00:00:00
Hello and welcome to Veterans and Parkinson's: Exercise, Nutrition and Wellness. I'm Nancy Nealon, Senior Community Program Manager for the Parkinson's Foundation New York/New Jersey Chapter. On behalf of all of us at the Parkinson's Foundation, welcome to everyone attending today. That includes more than 300 individuals who registered for the webinar and a special edition for today, webinar watch parties. I would like to give a big shoutout and hello to our first watch party.

This is a special gathering for veterans and their care partners to watch this webinar together. Hello to Gloria and everyone watching at the Friedberg JCC in Oceanside, New York. Also, a big hello to Paula and everyone who has gathered at the Utica Center for Development Veterans Outreach Center in Utica, New York. Last but not least, all those who have gathered at the Western New York Health Care in Buffalo, New York. Thank you to everyone who has made these watch parties possible.

Our program today will consist of two presentations from Parkinson's experts from the VA health system, as well as answering your questions at the end of the webinar. We collect all the questions during the webinar so you'll see them disappear to organize and ask our presenters at the end. A few webinar watch tips for you: We share a lot of information in these webinars and realize it can be kind of tough to take it all in at once. But not to worry, we have you covered. This webinar is being recorded.

And you will receive a link via an email from us in about a week, and then you'll be able to watch the recording, any parts or the whole thing, all over again at your leisure. Sit back and enjoy. While I say sit back, we also know two hours is a long time to sit. Please remember, get up, stretch, go get a snack, do what you need to do. You won't miss anything because you're going to have the recording to refer to.

I'd now like to share with you important information about the Parkinson's Foundation. We are the nation's leading community for people living with Parkinson's disease and the people who love them.

And we are all working to end this disease. Our mission is to make life better for people with Parkinson's disease by improving care, advancing research towards a cure, and empowering and educating our global community.

We offer an extensive set of resources. In fact, I'm going to show you a couple of them live in person here. These are just a few of the examples.

Parkinson.org, our free educational book series that you can download or order in hard copy, a library of recorded podcasts and webinars like we're doing today, our hospital safety kit called the Aware in Care Kit. In addition, our helpline staffed by Parkinson's specialists is ready to assist at 1-800-4PD-INFO. You can contact the helpline to order any of these materials as well that I've mentioned.

In addition to webinars such as this specifically for veterans, we also offer weekly webinars through our PD Health @ Home program. Join us for Mindfulness Mondays, Wellness Wednesdays, and Fitness Fridays. These webinars are recorded as well, so you can always go back and watch those. And I'd like to invite any care partners, caregivers watching today to please join us on Saturday, October 29th. If you live near Tarrytown, New York, please consider joining us in person, but this will also be broadcast live on Zoom.

Nancy Nealon 00:04:08
We'd love to have you sign up, register, and attend the Northeast Region's Care Partner Summit.

I'd also like to share with you that part of the foundation's, the Parkinson's Foundation's commitment is to reach every person living with Parkinson's disease. A critical way we do that is through our partnerships. With more than 110,000 veterans living with Parkinson's disease, the foundation has established a formal partnership with the Veterans Administration. With the overarching goal to improve the quality of life for veterans living with PD and their care partners through greater access to education, resources, and support.

We have created a webpage dedicated to veterans living with Parkinson's at Parkinson.org/veterans. On this page is the FAQ guide that provides an overview of Parkinson's disease and VA resources, benefits, eligibility, and access to care. Remember, we're going to send all this to you in our follow-up email as well. We are honored to support all of you during your Parkinson's journey.

And next, I'd like to give a big thank you to our sponsor for today's program, Genentech, which is a member of the Roche Group for their generous grant to support our series of virtual programs for veterans living with Parkinson's. Thank you so much, Genentech.

And now, as we get ready to introduce the first speaker, and Dr. Morley is going to come on camera now, we are going to ask for all of you to join us in getting to be able to cast your vote in our first poll. We'll have two of the polls today. If you can take a look, how many days per week do you get at least 30 minutes of exercise? And you can see that you have several choices.

And people are voting now, which is great. Thank you so much. Cast your vote. We'll get everyone's opinion on this. You can weigh in.

And it's coming in, the results are coming in. I think we're looking pretty good here. All right.

Overwhelmingly, well, close to overwhelmingly, five or five or more days per week, which is fabulous, followed by three to four days per week. Many, many of you, are already involved and we hope we can reinforce and provide even more information about exercise and Parkinson's.

Now I'd like to invite Dr. Morley to join me and we will have him come up. I'm not sure, perhaps we're having... No, there he is.

Dr. James Morley 00:07:14
Yep. I think I've clicked all my buttons.

Nancy Nealon 00:07:18
Alright. Excellent. There are a lot of buttons to keep track of. We're going to stop sharing our screen and I will give Dr. Morley just a second to get his bearings and be able to pull up his screen.

And then I will stop talking and turn it over to you, Dr. Morley. Thank you so much.

Dr. James Morley 00:07:39
Thank you so much, for the invitation. And I think I have to switch this. Correct?

Does that look correct now?

Nancy Nealon 00:07:47
Yes, it's perfect. Thank you.

Dr. James Morley 00:07:49
Super. Yeah, great.

Thanks so much for the invitation to do this and for having this important webinar and for all the work that the Parkinson's Foundation does and in particular, the partnership we now have between the VA PADRECCs and the Parkinson's Foundation. I think it's wonderful. I also want to thank the veterans who are here. Thank you for your service. Thank you for your interest in this topic and congratulations on exercising so much. I hope I'm not preaching to the converted here, but we'll try to make this informational and have some real-world impact.

Just to briefly go through an outline of what I'll talk about today, I'm going to talk about sort of the efficacy of exercise, what kind of effects it has on Parkinson's symptoms with the idea that maybe different exercises could have different effects. I'm going to talk about what we know about activity and exercise levels in people living with Parkinson's disease, in particular what drives activity levels in Parkinson's disease and what might we be able to do to increase them. And if we have a little time for it, I'll tell you a little bit about some of the work we're doing. And then I'll finish up with kind of a real-world summary of how do we prescribe exercise like a medicine for Parkinson's. One of the things I'll try to convince you of is that exercise is a very powerful medicine to treat Parkinson's disease.

And so how do we treat it like a medicine? How do we prescribe it? How do we get patients to take it?

This is an outline here of the components of a brain wellness program. You can see that it is multifactorial, involving exercise, diet, stress management, meds, social connection, adequate sleep. Our second speaker, Dr. Duda, is going to talk about a few of these, and so I'll let him kind of talk about the synthesis here and I'm going to focus in my talk on fitness and exercise.

We all know that exercise is good for you, it does a body good. There are well-documented risk reductions for cardiovascular disease, for all-cause mortality, and for many chronic diseases, we prescribe diet and exercise. The idea that these sorts of interventions should affect brain health, is supported by the idea that both dementia and depression, two brain diseases, are reduced by exercise.

And we know from epidemiologic and clinical trial data that if you look at cardiovascular fitness that it's related to scores on cognitive tests in senior citizens, that midlife exercise is related to a reduced risk of dementia, and there's even some imaging type data looking at functional MRI showing that connectivity between different brain regions is influenced by exercise. Clearly, exercise affects the brain.

And when we look in animal models where we can look in a little bit more detail in what's going on in cells and molecules, we know that important brain growth factors, markers of synaptic connections, and the ability of the connections between neurons, the cells in the brain to change, and also for the brain to even grow new cells are all influenced by exercise. And so there's good reason to think that exercise will influence brain diseases. This is not a new idea. This is a graph of how many publications there are looking at exercise and Parkinson's from 2000 to 2020. And you can see that there's a very, very rapid growth.

Dr. James Morley 00:11:13
So now we have more than 400 academic papers per year, talking in some way or another about exercise and Parkinson's disease. This is also to apologize in advance that obviously I can't possibly cover everything that's going on, but we can start to talk about, what does exercise mean? It can mean different things to different people. There's four main categories that people think about, and those are shown here with some some examples. Aerobic or endurance exercise, strength exercises that generally use weights or some sort of resistance.

Flexibility exercises like yoga is obviously is a very popular one among our patients, and also just static stretching or traditional physical therapy. And then more balance-based balance-based exercises with physiotherapy, tai chi and qigong. And we'll talk about some more of these in detail. And also there's obviously overlap between many of these that if you do hot flow yoga, you are also getting an aerobic workout, and many different aerobic or strength exercises can also influence balance. And so this is really great.

It means that there are there's kind of an exercise for everyone and we'll come back to that. But it makes it a little confusing to study in a in a scientific way because there's a lot of apples and oranges here in clinical trials in terms of what interventions are looked at and what kind of outcome variables about symptoms are studied. And so one way that we kind of compare apples and oranges in clinical trials is to do something called a meta-analysis. And I'll spend just a second talking about what that is because we're going to look at a few of these. And it's basically looking at studies that have used the same outcome And so in this case, it's in red, the UPDRS-III. The main sort of motor test for motor function that we do in Parkinson's disease. And then each of these studies, or each of these lines, is one study. And then on the right, there is a little graph that has zero in the middle. And if the lines tend to point one way, it suggests that there was a benefit of the exercise intervention, and if the lines were on the other side, it suggests that there was no effect or that actually the control group seemed to do better in this particular outcome.

And really the thing to focus on, if you want to ignore all of that is that there's going to be a larger colored, diamond, it's a black diamond here shown at the bottom, that shows you the sort of the overall effect, when you combine all of those different studies. Now circling back, this is a, a meta-analysis that came out a few years ago now and there have been other ones that, say much the same thing looking at, more than 18 randomized controlled trials of different kinds of aerobic exercise.

It may have been treadmill running, it may have been biking, but in one way or another it was an aerobic exercise intervention. And in this case, they looked at this UPDRS-III motor outcome. Across 18 randomized controlled trials, so these are all high-quality clinical trials looking at more than 900 patients to in and mostly in early and mid-stage PD. As I said, multiple different kinds of interventions looking over about a month to six months. And you can see that when you look at the overall effect of aerobic exercise on motor function in Parkinson's, there's a significant effect here. This...

Dr. James Morley 00:14:48
Black diamond is shifted well to the left of the of the of the unity line.

We also see that aerobic exercise, so this is looking mostly at different gait or walking type tests, so the six-minute walk, stride length, walking speed, walking cadence, a test called the timed up and go, so looking at all of these different measures of gait, pretty consistently you can see that in this particular study they put the or this particular graph they put the favors exercise on the other side, but for most of these there's there's significant effect or significant benefit of aerobic exercise on all of these different gait outcomes.

This is a meta-analysis that looked at eight different studies of resistance exercise, so weightlifting or resistance bands or something like that. And they looked at over 400 patients from early to fairly advanced Parkinson's disease. And not surprisingly, perhaps, there was a very large effect on strength when they measured muscle strength. This was in, mostly weightlifting studies. And but there were really sort of more moderate to even not really effects on on balance, whereas there was still a moderate effect on on the UPDRS.

So a little bit of different pattern, looking at resistance training versus aerobic training.

And now looking at, this is a meta-analysis looking at, different studies that studied Tai Chi, in different outcomes in Parkinson's disease. And this is probably one of the best characterized and studied balance exercises in Parkinson's because it can be practiced by patients with many different levels of function, from, early, highly functioning patients to patients that are more advanced and may have more, difficulty with balance and getting around.

And you can see here that there were large effects on overall motor function that were seen mostly in the medicated state but not as much in the unmedicated state, but that there was both with and without medication there was a much larger effect on balance. And so, to contrast with what we've talked about leading up to this, Tai Chi does seem to have more of an effect on balance than perhaps some other features.

We can't discuss fitness in Parkinson's disease without referencing the important role of our colleagues in physical therapy and rehabilitation. And specifically the big and loud, which is a voice therapy, but the big PD-specific training method. As you are all aware, one of the sort of common features in Parkinson's disease is the slowness of movements and that movements get smaller, and this is represented in speech by a quiet voice or what we call hypophonia, and with motor function with slow movements or what we call bradykinesia.

The Lee Silverman Voice Therapy, so the voice version of this BIG Program was initially developed for speech and it's an intensive therapy based on increasing the size or the volume of the voice, but it turns out that also improves articulation and even swallowing. The Big Physical Therapy Program was adapted principally for rehab focusing on increasing movement amplitude, but also in turn improves the speed of movement and coordination. And this has been examined in a number of clinical trials and it's clear that there are improvements in overall motor function associated with these programs.

Dr. James Morley 00:18:30
And even more than that, I think that we have lots and lots of positive real-world experience, for patients with Parkinson's disease, being referred to physical therapy, rehabilitation medicine, and often using, these PD-specific programs.

And one point that I want to make is there's, and we have to remember this as much as providers as as you do, as people living with Parkinson's disease or their caregivers, that there's not a reason to wait, to bring, physical medicine, physical therapy into, into the mix here for what we call prehabilitation, and helping you to, discover how to implement, physical activity and exercise into your life safely, no matter what stage of Parkinson's that you're at. And we'll we'll come back to that closer to the end.

Just to mention very, very quickly as a very very much an overview, folks will often ask about, things that people don't always think about as exercise but has some of the characteristics of exercise. Dance or water therapy or using virtual reality or Nordic walking. This is a meta-analysis that looked at more than 1200 patients with 20 randomized controlled trials using very diverse interventions but sort of falling into that kind of alternative exercise space. And it was clear that each of these has some benefit, but it's not clear that any one is better than any other. And then we'll we'll come back to that important question a little bit later.

To summarize this this first little bit of the talk, I think it's clear that multiple exercise interventions improve motor symptoms in Parkinson's disease, that different exercise types may target different types of motor symptoms, so overall motor function, balance, walking, and that aerobic exercise probably has the broadest effects. It's sort of the broadest spectrum of the exercise treatments. And importantly, we sort of have this data from clinical trials, but there are some important questions that we'll we'll talk about closer to the end about how do we translate this into a treatment for Parkinson's disease.

Excuse me.

We know a lot, that I summarized very quickly about the effect of exercise on motor symptoms, but as as I'm sure many of very, very well that the non-motor symptoms of Parkinson's disease, such as mood problems, sleep problems, cognition problems, are are common, and very important because they cause they cause significant disability. And importantly, the medicines that we use for Parkinson's disease to improve motor function very often do not improve non-motor symptoms and sometimes can worsen them. Employing non-pharmacologic therapies for non-motor symptoms is potentially very important.

And I think the top line header here is that we think that exercise is likely to improve non-motor symptoms, in particular, mood, sleep, and cognition.

We are not as sure about this because they're usually not the primary focus of most of these exercise trials. They are sort of measured as what we call secondary outcomes. And very often for these sorts of exercise trials where you're trying to get people to be motivated and exercise more or to show up to study visit appointments, they select for patients that don't have a lot of cognitive dysfunction or don't have a lot of mood problems. And so it's it's been a little more difficult to demonstrate that with the same level of evidence. But there's very good reason to think from the general population and mental health literature that exercise should help with many of these, but we really do need more targeted studies and I'd like to talk to patients about that.

Dr. James Morley 00:22:07
We can think of it as a good side effect of using exercise to try to improve motor symptoms if we get some benefit for non-motor symptoms.

Just highlight a couple of areas where we have the most evidence about exercise and non-motor symptoms. This is again a meta-analysis that looked at nine different randomized controlled trials, more than 250 patients with moderate or greater disease, and with sort of one- to three-month durations with exercise with a targeted outcome looking at cognition.

And it involved treadmill, dance, tai chi, Wii Fit, cognitive motor training, and standard physical therapy. Again, sort of a variety of types of interventions, but overall, when you combine these studies, there were significant effects on on cognition. And if you separate it out again, some of these more aerobic things like treadmill training, that's where sort of the biggest bang for the buck seemed to be or the strongest effect of exercise on cognition.

But again, this is limited by, apples and oranges, different types of interventions, different types of outcomes, but certainly there's emerging evidence and good reason to think that exercise is good for thinking and memory and other elements of cognition in Parkinson's.

This is just one relatively small study that was done or published relatively recently, but it's important because it was a high-quality randomized controlled trial that was designed specifically to look at the relationship between exercise and sleep in Parkinson's, which is a significant problem. They looked at a total of 55 patients that were divided relatively evenly between a three times per week supervised exercise program versus a counseling control intervention where there was no exercise, but they discussed with study staff about sleep habits and sleep hygiene and the like. And this was done over a period of about four months.

And you can see in the graph here, if you compare these objective measures of sleep function, such as how much total sleep time, sleep efficiency, or slow-wave sleep as as measured by an EEG, that there were significant improvements or significant benefits relative to the counseling group for the exercise group. Interestingly, there were subjective measures of sleep, so sort of asking what people thought about their sleep quality and if they felt better in the morning and rested and those sorts of things, that those also improved in the control group as well.

And then this is absolutely as hot off the presses as you can get. I saw this on my little sort of feed of literature that I might be interested in this morning, and threw this slide together real quickly. This is a meta-analysis that hasn't even really been published yet. It's been accepted by the journal and they've put a version of it online looking at a meta-analysis of exercise and depressive symptoms in patients with Parkinson's disease, looking at 19 studies over 1,300 patients.

And you can see again just to skip to the headline that this colored diamond down here shows that there was a significant effect of different kinds of exercise on on depressive symptoms in patients with Parkinson's disease.

Dr. James Morley 00:25:29
Kind of the holy grail, I would say, of research in Parkinson's disease is trying to, develop therapies that not only improve symptoms that somehow modify disease progression. And there's some reason to think that exercise might be might be able to affect disease progression. Some of the lines of evidence for that is that There's epidemiologic data, so looking at large populations, people who report exercising more in middle age, so years before you would normally get Parkinson's, there's a significantly reduced risk of developing Parkinson's. And people who do get Parkinson's, it happens at a later age. There's this idea of either protecting against getting Parkinson's or delaying its onset. If you look in animal models and you you do animal models of exercise in animals that have been given a version of Parkinson's disease, that actually slows down or protects against the changes that you can see in cells.

And again, that growth factors in these animal models are increased by exercise. And a relatively until recently limited clinical trials looking at disease modification in exercise, there's some hint that maybe there could be increases in dopamine receptors, dopamine being one of the main chemicals affected in Parkinson's disease, indicating that maybe there were new cells that could respond to dopamine, that were influenced by exercise.

A couple of clinical trials that recently came out, that don't demonstrate, that exercise, affects disease progression, but I think start to hint at that. So this is a trial called the SPARX trial that looked at high-intensity, treadmill training, and the influence on, motor symptoms of Parkinson's disease.

It was over a hundred patients that were randomized to either no exercise, kind of a moderate level intensity exercise, and we'll talk more about sort of exercise intensity, and then a very high-intensity exercise getting up to, greater than 80% of the maximum heart rate. And importantly, these were very early.

Unmedicated patients. They were not taking levodopa, they were not taking dopamine agonists, they were not taking an MAO-B inhibitor or, Selegiline, something like that. That's important because one of the problems in detecting changes in disease progression is that people who are taking medicine are getting the benefit of their medicine. And so it's sometimes hard to sort out the benefit from the medicine from the benefit that you might be getting from the intervention. But here, exercise is the only intervention. These folks are not taking medication. If they're getting better in a randomized controlled trial, we'd argue that it's the exercise that's doing it.

And what we see here is that if you compare the change over six months in the UPDRS motor score, if your motor score gets higher, that means that there are worse symptoms. Not surprisingly, over six months, in the control group, there was a little bit of increase.

Sorry, I'm pointing at the wrong screen here. That there was an increase in the UPDRS score, so motor symptoms got worse on average. If you looked at the moderate intensity exercise group, there was a hint towards less progression, but it was not statistically significant. Whereas if you look at the high-intensity group, while there's some variation here, overall, there was essentially no disease progression over six months. Now it's a short window and changes in the UPDRS motor score are not A direct index of disease progression, but it certainly is as interesting and hopeful and it's hopeful enough that this trial has now moved on into another phase and is currently ongoing.

Dr. James Morley 00:29:15
This is another study there. There was a basically an aerobic Exerbiking study where that was done in the Netherlands where they kind of gave their patients Pelotons. It's good to be Dutch if you have Parkinson's disease. And then performed a randomized controlled trial of this Exerbiking, which importantly was done in the home. And not, patients didn't have to come in and go to study visits and things like that. Previously they've reported in well over a hundred patients that this exercise intervention significantly improved motor symptoms.

Dr. James Morley 00:29:54
In this study that I'm illustrating here, they looked at a subset of the people in that original study who had MRI studies of their brain and also underwent some different cognitive testing, and then compared how things looked at baseline compared to a six-month follow-up. They found — I'm not going to belabor the details here — that there were changes in connectivity between two different brain regions.

Importantly, the amount of change in connection between the brain regions was directly related, in different individuals, to how much they improved their fitness during the study. Again, not demonstrating or proving, but suggesting a relationship between this high-intensity exercise, changes in cardiovascular fitness and changes in brain connectivity that certainly could be related to changes in the progression of Parkinson's disease.

I alluded to this earlier: What's the right kind of exercise? What kind of exercise should I be doing? What's the best exercise? These are questions that frequently come from people living with Parkinson's disease. This is an example of one study — there are more — that tried to compare different forms of exercise, including aerobic exercise, stretching and resistance exercise. In this case, many outcomes were improved by all of the exercises, and there really wasn't any group difference between one exercise and the other.

That's good because it suggests that all of these exercises are helpful, but it also highlights that it's difficult to compare what might be smaller or different effects in these exercise studies, which generally involve relatively low numbers of people because they're hard to do and hard to get people to do.

Another recent study tried to address this question. This was an epidemiologic study, again looking at high-level patient databases rather than individual patients.

There was a Korean-based population study with more than 10,000 Parkinson's patients. That's one of the benefits of these so-called epidemiologic studies: you can look at many, many more people than you can in interventional clinical trials. These patients filled out a questionnaire where they said how frequently they exercised and whether they did high-, moderate- or low-intensity exercise. Then the investigators looked at the relationship between the intensity of activity and all-cause mortality.

Again, in an epidemiologic study, they can't do motor function testing on these individual patients. You have to look at data that's available in databases, such as when patients passed away. In these different graphs, you're comparing, in the dark line, folks who did not report doing this kind of activity, and in the yellow line, people who did. The lower line means that in each of these different cases, the rates of mortality were lower in association with activity. This was true whether it was light activity like housework, moderate activity like walking your dog or more vigorous activity such as treadmill running or high-intensity interval training.

Dr. James Morley 00:33:35
Importantly, any of these was good at reducing mortality in people with Parkinson's disease. When you looked at the relationship between intensity and outcome, basically the more intense activity was associated with a stronger effect on mortality.

We've talked a lot about clinical trial data, so how does this work in the real world? Importantly, the Parkinson's Foundation has done a wonderful large QI study where they've looked at care patterns and outcomes in Parkinson's Foundation Centers of Excellence. These are two papers that have come out of that study looking at exercise and different outcome variables. The first showed that exercise improved quality of life and self-rated mobility in Parkinson's disease over time. Importantly, exercise was also associated with decreased risk of hospitalization for patients with Parkinson's disease. Important real-world outcomes are affected by exercise in Parkinson's disease as well.

Moving on to the second part of thinking about this: if we assume that exercise, in some way, shape or form, is efficacious — meaning it showed benefit in a clinical trial setting — how can we make it an effective medicine? How can we actually get it into the hands of patients living with Parkinson's disease and derive the benefits? You could have the most effective drug in the world in a clinical trial, but if it's too expensive, has terrible side effects or can't get in trucks to pharmacies, it won't be effective because patients won't take it and they won't get better. As part of that, I think there are two questions. One is, how do we prescribe exercise like a medicine? And B, will patients take it if we prescribe it?

I'll talk about the second part first. This is one of our former fellows, Sneha Mantri, who's now at Duke, who did an interesting study and looked at self-reported exercise in the Parkinson's Progression Markers Initiative, or PPMI. PPMI is a large longitudinal study over time looking at Parkinson's disease progression and markers of progression.

These patients had filled out a questionnaire about how much they exercised and how intensely they exercised. Sneha compared that to guidelines that existed at the time by the American College of Sports Medicine about how much and how intensely to exercise. Shown here is a comparison of controls to people with Parkinson's disease for moderate activity, vigorous activity and strength training. Interestingly, Parkinson's patients reported just about as much exercise for moderate and vigorous activity overall, and less for strength training, but fewer than 40% of patients met these goals for the American College of Sports Medicine exercise guidelines. More than 50%, if you look at these graphs, basically reported never exercising.

This was an early population with Parkinson's disease, and they were already involved in a clinical trial, so they might be highly motivated. It might even be worse in other populations. I don't have time to go through it, but Sneha did a second study in veterans where she showed that self-reported activity levels were even lower. Importantly, she also included a questionnaire to try to understand something about the attitudes of our veterans with Parkinson's disease toward exercise and to start to get a handle on why some people do or don't exercise.

Interestingly, this is showing motivators of exercise, and I've highlighted two that were outliers compared to the others. In our study, veterans actually said, 'I did not prefer to be in a scheduled exercise program,' and, 'I did not prefer to exercise with others,' which we were a little surprised by given the popularity of things like Rock Steady Boxing or other group exercise classes.

When we looked at barriers to exercise — what kept people from exercising — our veterans were particularly affected by conditions outside of Parkinson's disease, such as their general medical health and factors like pain. The takeaway from this is that we have to take these factors into consideration, not just think about Parkinson's disease status. We need to take a more holistic approach to motivating our patients to exercise and designing interventions for exercise in Parkinson's disease. Very importantly, we have to make this individual. The motivation to exercise is individual, so we have to develop programs that are tailored to individuals.

Dr. James Morley 00:38:52
This is a more qualitative analysis that Sneha did on open-ended questions rather than rating scales. Among the health domain, fear of falling was a barrier to exercise, and several other groups have reported this too. Other medical comorbidities probably lead with motivation, which are prevalent in Parkinson's disease. A motivator to exercise was the desire to maintain independence and increase health.

In terms of the social domain, exercise partners and PD-specific programs were things that motivated exercise. That is in seeming conflict with our observation that veterans did not want to exercise in groups or be part of scheduled programs. What we learned from the more free-form answers was that it was really the stigma associated with exercising in a large group with Parkinson's, and that people with Parkinson's felt much more motivated to exercise if they were exercising with other Parkinson's patients. That's important to remember and probably explains much of the success of things like Rock Steady Boxing and PD-specific exercise interventions.

I'm going to take just a second here to tell you about one of the things we're trying to do to increase physical activity levels in people with Parkinson's disease. It's derived from a concept called nudging in behavioral economics, which is changing behavior through simple changes in the way you present information — not large, heavy-handed interventions. One of the ways this has been done in a variety of settings is through something called gamification.

Gamification applies game elements, such as levels or points, to a particular intervention. These are collaborators, Nitesh Patel and Kim Waddell, who work in what's called the Nudge Unit at Penn. They've used these sorts of interventions to increase activity levels in a variety of disorders, such as diabetes and obesity. We're currently doing a study now to try to use these types of interventions to increase physical activity levels in people with Parkinson's disease. It's interesting in the era of COVID because we're able to use wearable sensors and digital health platforms. This is a touchless clinical trial, so people in this trial never have to come into the office.

If you live in the Philadelphia or tri-state area and you're a veteran with Parkinson's disease, I think my email contact should be on here, so please feel free to reach out if you'd be interested in something like this. We recruit folks with Parkinson's disease who complete all of their consent, demographics, surveys and assessments online. We send folks a Fitbit that they can wear to track their activity levels.

You get linked up with a digital health platform at Penn called Way to Health that automatically collects all of this fitness data. Then we're enrolling folks in what's called a gamification intervention. Basically, we measure step counts for two weeks at baseline. We ask participants to increase that step count by 20% over a six-week gamification intervention where, if you meet your goals, you level up. If you don't meet your goals, you level down. Then there's a little bit of a prize at the end.

Then we do a four-week follow-up period where we get rid of the intervention to see if there are increases in activity levels during this gamification intervention, and if they last after the game ends. We're using another wearable sensor that some of you may be familiar with, the Parkinson's KinetiGraph. It's a commercially available watch-like device that can measure tremor, slowness and other things with Parkinson's disease.

I just wanted to make you aware of a study like this. I should not have used the word advertised. That's not what I'm trying to do, but I think this is an interesting and exciting approach to increasing physical activity levels in Parkinson's, and we really have to learn how to do that in the real world.

Dr. James Morley 00:43:24
All right. In the last few slides, I'll talk about how I hope I've convinced you that exercise can be as beneficial as medicines that we prescribe by mouth for people with Parkinson's disease. I think we have to think about how to prescribe it like a medicine. I'll make the caveat, with this cartoon, that I've been talking about a lot of different evidence and clinical trials. We are leaving that realm, and we are now firmly in the realm of this is my opinion, for whatever it's worth. Your mileage may vary.

Here's a prescription. I'm sure many of you have seen a prescription like this for carbidopa levodopa. You probably have never seen a prescription that says, 'Carbidopa levodopa: make sure you take some.' We don't do that. What we do is prescribe 25/100. We want you to take one pill by mouth three times a day. We're going to do that for 30 days and check in and see how things are going. We have a type of medication, an amount of medication, a frequency and how long we're going to do it for.

I think we very much have to start thinking about exercise in the same way. Rather than saying, 'Get some exercise,' we have to say, 'I want you to do power walking for two miles. You're going to do that on foot. You're going to do it once a day, and then after 30 days we'll check in and see how you're doing with it and think about refilling that prescription or seeing if we have to alter it.'

If we're going to do that, are there guidelines about what people with Parkinson's should be doing as far as exercise? This is a little cutaway of recent Parkinson's Foundation guidelines that were developed in concert with the American College of Sports Medicine. The upshot is very similar: we'd like folks to be getting 150 minutes, or two and a half hours, of moderate-to-vigorous exercise per week. You want to use different modalities such as aerobic activity, strength training, balance and agility training, and stretching.

Importantly, you should use physical therapists to think about safety, and you have to continuously think about how this program is working for you and modify the routine over time. I think that's also illustrated in this little cartoon that I've made here. Exercise is a medicine that's appropriate at most, if not all, stages of Parkinson's disease, but we have to differ in the way that we prescribe it along the disease continuum, very much in the way that we change the way we prescribe medications.

For example, aerobic exercise can probably help with most symptoms. We would like people to get aerobic exercise at all disease stages. For early patients, it's a little easier. We can say, 'Go do whatever works and whatever feels good. Get on a bike, get on a treadmill, swim laps — whatever works,' at early stages of disease when physical capacity is not as much of a limitation.

Similarly, with strength training, you may be able to do whatever you want in early Parkinson's disease — do kettlebell training, do whatever you'd like — but as you move into later stages of Parkinson's disease, you might have to modify that. It might be resistance bands for weight training, aqua aerobics or just using a hand bike pedal to get your heart rate up and achieve aerobic exercise.

Similarly, balance and flexibility exercises like tai chi are probably beneficial along the entire disease continuum and probably start to become even more important as gait and balance become more prominent features of disease in later-stage Parkinson's, and aerobic and strength training may become somewhat more difficult.

Again, it's this idea that we have to change the prescription for exercise over the disease course to target different symptom types and accommodate different levels of physical ability along the continuum of Parkinson's. At any stage, we probably want to use a multi-domain approach where you're attacking this from different angles.

While, for an early-stage patient, we might prescribe high-intensity treadmill training for two miles, as mobility becomes more of an issue, maybe it changes to a stationary bike or getting in the pool and doing aqua aerobics, where you don't rely on balance as much. At different stages of disease, you may need a targeted intervention like speech therapy or Big physical therapy to target balance and gait. In later stages, it might be more tai chi than treadmill. In all of these times, we should be thinking about how to specifically target exercise prescriptions to individuals and to the individual disease stage.

I'll finish up with my conclusions. Exercise and physical activity are good medicines for Parkinson's disease symptoms at any stage. I think there's emerging evidence that it might be something that could modify disease progression, but we're still holding out for real concrete evidence on that.

In terms of what's best, there are more studies, and I don't really know that this is going to get resolved. I think the real answer is whatever you can motivate yourself to do is the best exercise at any stage. In the meantime, it's really important while we're waiting for these answers to work with your provider, but also physical therapists, to help determine the right exercise prescription for you.

It's one thing to say that your neurologist or Parkinson's provider should write you a prescription for exercise, but we really have to do that with the input of physical therapists who can spend more time than is available in most office visits to talk about your motivation, your abilities and what is the right and safe exercise for you. The last thing is that, just like your medication prescription changes over the course of disease, we have to think about changing our exercise prescriptions to target individuals and to target the disease state.

I'll stop here and see if we have questions that have appeared in the chat or anything else people are interested in. This is just a little cartoon that we'd all love to have an exercise pill where you get all the benefits of exercise. There is an exercise pill. It's just that you have to take the pill and then take it out for a jog, take it to the gym and get on a bike with it, and it'll work just fine. Thanks very much again for the opportunity to talk to you today. It's really a treat to do this and be part of this. Thank you.

Nancy Nealon 00:50:20
Thank you so much, Dr. Morley. Really great cartoons. I need to offer you a huge apology because, in my quest to get our poll up before you even started, I neglected to tell our wonderful audience that you are the co-director of the Parkinson's Disease Research, Education and Clinical Center at the Philadelphia VA Medical Center and also an assistant professor of neurology at the University of Pennsylvania. I'm sure people are not surprised by that astounding title. We are going to include both you and Dr. Duda's bios in our follow-up email to everyone.

Thank you so much for all of you tuning in. Dr. Morley, although we're saying goodbye to him right this second, will be back at the end for our Q&A. Dr. Morley, go have a break. Thank you so much for your great presentation.

Dr. James Morley 00:51:14
Okay, thank you.

Nancy Nealon 00:51:15
Now it is my honor to ask — and Dr. Duda will be coming up here in just a second. Hello, Dr. Duda. Thank you so much for joining us. I'm going to get it right this time. You are the director of the Parkinson's Disease Research, Education and Clinical Center and co-director of the Center for Neurotrauma, Neurodegeneration, and Restoration at the VA Medical Center in Philadelphia, and also professor of neurology at the University of Pennsylvania. Thank you so much for being here.

Before we ask you to bring up your slides, we are going to check in with our audience again and ask everyone to participate in this poll. In case anyone is having difficulty seeing it, the question is: What is your opinion about how your diet can affect your Parkinson's disease? If everyone watching from our watch parties or from home would please cast your vote, we'd love to know what you think about our question: Does your diet affect Parkinson's disease?

This is great. We have a lot of people casting their votes right now. We'll have results in just a moment. Thank you to everyone participating. We'll give it just another second or two. We've got great participation happening here. Interesting.

Okay, our results: a good number, 36% of respondents, think that eating healthier helps to treat some of their Parkinson's symptoms. Dr. Duda, you've got a great audience. I'm sure you're going to provide them with even more information. With that, I'll invite you to share your screen and take over. Thank you so much.

Dr. John Duda 00:53:11
Thank you. Let's see, one more click.

Nancy Nealon 00:53:27
There you are. Thanks.

Dr. John Duda 00:53:30
Thank you, Nancy. Welcome to everybody. As Dr. Morley mentioned, I am very grateful to the Parkinson's Foundation for inviting me to participate in this symposium, and even more grateful to all of you who are in attendance, especially those of you who are veterans. I just wanted to take a moment to express my appreciation for your service and sacrifice.

This is going to be a little bit of a whirlwind tour of the rest of this chart. Some we will delve into a little bit deeper than others, but this is part of what I try to get my veterans with Parkinson's disease to practice, which is a whole program of lifestyle choices that we believe can affect your brain wellness. They certainly can improve your wellness in other ways, like reducing the risk of heart disease, cancer, stroke, hypertension, diabetes and just about every other chronic disease we suffer from. They very well may improve your PD symptoms and perhaps even your PD progression. Some of that we're still doing the studies to prove, but we think it's entirely likely. Like I said, the side effects are mostly all good things.

Starting out with diet and nutrition, this schematic shows — and please don't try to read it or understand it; just take my word for it — that this is a fairly up-to-date representation of what we think is going on in the cells of people with Parkinson's disease that may be problematic. There are a lot of different problems here, and we don't have any magic pill that stops one part of this chain of events and stops the disease.

There are obviously many clinical trials underway, but we've been trying to do this for, I don't know, 20 or 30 years, and unfortunately we haven't come up with anything that clearly stops the progression. In addition to all those pharmaceuticals, there are innumerable compounds that are found in food that can affect these things as well. Most of this evidence is from test tubes, animal models and things like that, but the food we eat has more than just sugar, salt, fat, protein and vitamins. It has innumerable compounds that, when taken orally, are a lot like drugs and can have similar effects to drugs.

Dr. John Duda 00:56:15
All of these components of the chain of events that occurs in the cells of people with Parkinson's disease can be affected by these compounds. Frankly, I think it's unlikely that any one of these compounds is going to end up being a silver bullet that cures Parkinson's disease. But just like in our treatment of HIV, cancer and a lot of other really tough problems, it's likely going to take a battery of different compounds treating different aspects of a condition to really slow down or stop the progression of Parkinson's disease.

In my humble opinion, until we figure out what that combination may be, I think it makes sense to flood your body with these compounds in levels that we know are safe, because they're normally eaten by millions of people around the world on a daily basis, by eating foods that are high in these types of potential therapeutics.

Why do I think that might help your Parkinson's disease? This is a study from a friend of mine, Laurie Mischley at Bastyr University in Washington. It's called the CAM Care in PD study. CAM is complementary and alternative medicine. What she's doing is trying to find out what people with Parkinson's disease are doing to treat their disease themselves, something that is not very well studied. The way she's doing that is through an online study.

If you just Google CAM Care in PD, you will find the website, and you can join it yourself. It's a voluntary study that is all online. As an outcome measure for how well your symptoms are being managed, it uses another instrument that she developed, the patient-reported outcomes in PD measurement scale, or the PRO-PD.

There are 28 questions that involve all different aspects of Parkinson's disease symptoms, things like falling and rising from a seated position, dressing, eating and grooming. Online, at www.propd.org, you can go and take this scale yourself. You take these sliders and say, for falling, if I never fall, you leave it here. If I fall occasionally, you move it somewhere over here. If you fall daily, move it somewhere over here. Then she totals up these scores and gets an overall assessment of the severity of your PD symptoms without ever seeing you in person or laying hands on you to assess your symptoms. It's a patient-reported outcome, which is gaining in popularity in clinical trials.

Using that PRO-PD score and thousands of people who are already in the study, she can generate figures like this. This is looking at your score in that PRO-PD score. If you have zero symptoms, you'd be down here. If you got 2,800, I guess that would be the highest because you got up to 100 on each one.

Dr. John Duda 01:00:08
All these dots are one person with Parkinson's disease who has had the disease for this number of years. This person has had it for a little over five years and has very minor symptoms. This person has had it for 17 years and has a lot of symptoms. What she is trying to do is find out what is going on with what she calls the positive deviants: these people who have had symptoms for 10, 15, 20 or 25 years, and yet their symptom burden is still good to excellent - low amounts of tremor and falling and depression and things like that - and seeing if there's some magic combination of lifestyle choices they're making to affect their outcome.

One of the things she has already looked at is their diet, using a food frequency questionnaire that asks people how often they eat this and how often they eat that, and how those scores affect the PRO-PD score. She has come up with lists of foods that seem to protect or affect it in a positive way, meaning you generally have a lower score on that outcome if you eat fresh fruits and vegetables, nuts, fish, olive oil, wine, turkey, coconut oil, fresh herbs, spices and things like that.

Again, it's an observational study, so we can't say for sure about cause and effect, but in general, people who eat more fresh vegetables have a lower score on that symptom severity scale. Alternatively, there are certain things that are typically associated with raising your symptom burden on that scale, including canned fruit, diet soda, canned vegetables, fried food, beef, soda, ice cream, yogurt and cheese, and some things that don't have much of an effect either way.

If you look at all of the things that seem to be beneficial, they resemble something like the Mediterranean diet, which I think most of you have probably heard about. It's a diet or nutritional pattern where you focus mostly on whole foods, like whole grains, fruits and vegetables, lower amounts of olive oil and high-fat foods, lots of seafood, and smaller amounts of cheese, poultry, meats, desserts and things like that. The things that seem to be associated with lower symptom burden fall in line with this type of dietary pattern. Based on that and a lot of other studies, which I'll go into a little bit, I do suggest that people eat something like the Mediterranean diet.

Dr. John Duda 01:03:23
One of the big side effects, if you want to call it that, of the Mediterranean diet is that it almost certainly reduces your risk of getting dementia or cognitive impairment. Obviously, one of the main concerns of a lot of people with Parkinson's disease, in addition to limitations in mobility, is limitations in thinking. There's overwhelming evidence that dietary patterns like the Mediterranean diet reduce your risk of developing that. I think that alone is a good enough reason for me to eat a diet like this.

If it slows down my Parkinson's progression if I had it, then great, but this is enough for me. General rules about nutrition: for varying reasons, evolution and other things, we get a lot of pleasure out of food, and that's important. I certainly don't want you to slow down or stop the progression of your Parkinson's disease if you're going to be miserable for the rest of your life. Food gives us pleasure, so eat what you need to eat to be happy. If you have to have a cheeseburger every week to be happy, then have a cheeseburger every week. If there are certain foods you don't like, don't eat them.

There are plenty of healthy choices out there. The main note is that food is also supposed to nourish us. The rest of the time, if you're not eating food to be happy - and I think people would do well to find other sources of entertainment other than their food - then eat the things that make us healthy. That means eating mostly a whole, unprocessed plant-food diet.

That includes nuts, seeds, vegetables, fruits, beans, other types of legumes, whole grains, teas, spices - anything that comes from a plant, basically. Eat more of those and eat them as unprocessed as possible. The problem with processing foods is that you lose nutrients when you do that. Eating them as close as you can to the way they come in the produce aisle is probably a good idea. Eating more variety and color is probably also a good idea.

All of these compounds that we get from plants tend to work together in synergistic ways. If you're trying to take turmeric to get some curcumin, something many of you know about, if you just take turmeric, you're not going to absorb very much of it. But if you take it with a little bit of pepper, there's a different compound in pepper that increases the absorption of curcumin by about 1,000%. Eating a variety of different plant foods at the same time and at different times is great.

Dr. John Duda 01:06:39
We also like to say, eat the rainbow. The more color, the better, because often those colors are generated by the compounds that are giving the beneficial effects. If you have a choice between a red onion, a green onion and a white onion, eat the red one. Red cabbage versus white cabbage, eat the red cabbage. Try to eat all different colors on your plate every day.

In general, following something like the Mediterranean diet or the MIND diet - which is a combination of the Mediterranean diet and a diet originally called the DASH diet, developed for the prevention of hypertension - may be the best choice currently. Any one of those two, or what's called a whole-food, plant-based diet, will almost certainly be helpful. If you want to eat the MIND diet, I like it because it's fairly straightforward. You don't have to count calories, and you don't have to keep track of all kinds of different ingredients. There are 10 things you try to eat more of and five things you try to eat less of.

This was developed essentially to help people prevent getting dementia, which is something really important for all of us, including those of us with Parkinson's disease. The 10 things you want to eat more of include green leafy vegetables, six or more servings per week, so once a day. Other vegetables: at least one other vegetable in addition to the leafy ones once a day. Berries twice a week. Berries are loaded with antioxidant and anti-inflammatory compounds, two classes of compounds that we think are very important. It says at least twice a week, but eating them every day is probably even better.

Most people in America don't eat enough nuts, and there are a lot of healthy components in nuts, including healthy fatty acids, fiber and other things. Eating a handful of nuts is a good idea, depending on the situation with your weight. If you're having trouble keeping your weight down, then eating a handful of nuts and not more is probably a good idea because they are high in calories. But many people with Parkinson's disease have difficulty maintaining their weight, so eating lots of nuts and seeds, nut butters and seed butters are great ways to increase caloric intake and maintain weight. If you're using oils, using olive oil as your main oil is part of this diet.

Dr. John Duda 01:09:32
Then whole grains. Rather than eating white bread, white pasta, white pizza dough and things like that, eating foods made out of whole wheat or other whole grains, or just eating the whole grains themselves, is a big part of the diet: three servings of those per day. Eating fish at least once a week is recommended. If you're going to eat fish, eat fish that are high in omega-3 fatty acids, including salmon, sardines, mackerel, anchovies and things like that.

Eating more beans is important - at least four servings per week of beans, and I tell people to eat even more than that. They do say to try to eat chicken or turkey at least twice per week. I think you can argue about whether adding chicken or turkey to an otherwise plant-based diet definitely gives you more benefit. It may be that this is partially to eliminate more of the red meat in the diet, but that's part of the recommendation.

Then drinking no more than one glass of wine a day. For a lot of people who eat a diet that's not so good, drinking a glass of wine gives you exposure to some resveratrol and other compounds in wine that you wouldn't get normally if you're eating a standard American diet. But alcohol is a toxin, and it's not clear that wine is actually good for you if you eat a really healthy diet. For the average person, drinking one glass of wine may be a good idea.

Then there are five foods they suggest limiting. They want you to limit processed oils like margarine, avoid trans fatty acids and keep things like butter to less than a tablespoon a day. Cheese should be less than one serving per week, which I think a lot of people find difficult, but there are good reasons, with the saturated fat and other parts of cheese, to try to avoid it. Red meat: no more than three servings per week. Again, I think you could argue that there's nothing you can get out of red meat that you can't get out of other plant foods, so eating even less than that may be an even better idea.

Fried foods, obviously, have lots of problems with them, so eating them less than once per week is a good idea. The same thing with sweets. Again, these are treats, and if you have to eat them to be happy, then of course do it, but if you don't, try to avoid them. If you want more information, just Google the MIND diet online and you'll find all kinds of sources. The one from Healthline.com is a nice resource for finding out more.

Dr. John Duda 01:12:44
If you want to learn a lot more about nutrition and Parkinson's disease, I encourage you to look for this previous webinar that I did with the Parkinson's Foundation about five years ago, where we talked for a whole hour about nutrition, the gut microbiome and more recommendations about what I suggest people with Parkinson's disease eat. Obviously, it's hard to copy this web address down, so if you go to YouTube and search for Parkinson's Foundation Expert Briefings, the title is Nutrition, Parkinson's Disease and the Gut Microbiome. That will be the first thing that comes up.

The second part of this all-around wellness program that I wanted to talk about was stress management. We all have stress, and we all know that it probably leads to some of the chronic diseases that we suffer from. There's a really interesting paper out of a Dutch group headed by Bas Bloem talking about how stress and mindfulness may affect Parkinson's disease. It includes hypothesizing about how chronic stress elevates glucocorticoid levels, the stress hormones we express when we're under stress, and how those things change processes in the brain and may affect the cells in your brain, leading to things like Parkinson's disease. It's an interesting attempt to explain why it's a good idea to decrease your stress levels if you can and find better ways to deal with them if you can't.

They looked at the literature to date on mindfulness, which is one way to reduce stress. Of the eight trials that have been done in Parkinson's disease and mindfulness, six out of eight showed an improvement in depression, and four out of seven showed an improvement in anxiety scores. Motor symptoms were only studied in three different studies, but two of them reported significant improvements after starting a practice like mindfulness.

The same group put out another study where they surveyed 5,000 patients, similar to the study Dr. Mischley was doing, and asked them about their stress and mindfulness. Not surprisingly, people with PD experience more stress than controls, and they had higher levels of anxiety and depression, and lower scores on the state level of mindfulness. I think most of you know that when you're stressed, your tremor gets worse, your stiffness may get worse and other symptoms get worse. They confirmed this in the study as well.

Dr. John Duda 01:15:14
A couple of interesting things came out of it. Of all the people in the study - 5,000 people - there were different things that we know can help decrease your stress level. We know that physical therapy and physical exercise can decrease the amount of stress you're feeling, and many people were taking advantage of these and getting benefits from them. Relaxation exercises, like yoga or stretching, can help. There are all kinds of different things that could be included in that. Then mindfulness, which is a type of meditation that I'll explain in a second.

Lots of people are doing these things, and I encourage you to as well. This is self-reported, so obviously people know if they're doing physical therapy or mindfulness meditation, but according to them, the effects of mindfulness on their PD symptoms were positive in nearly every example, decreasing anxiety, depression, tremor, walking problems, sleep problems, slowness and dyskinesias to varying amounts, but all of them in the positive-effect range.

More importantly, or equally important, is that the more you do, the more benefit you get. In this graph, they show how many times you're doing a particular relaxation technique and how much you think it improved different symptoms. For depression, if they practiced mindfulness less than once a month, they had a certain level of depression. But as they increased from a few times a month to weekly, several times a week, daily and several times a day, the amount of benefit they perceived increased in nearly every symptom. The main reason people hadn't done it was because they hadn't thought about it or didn't know anything about it, but they were interested.

One other study that supports this came out a couple of years ago looking at an actual mindfulness intervention in PD. They had 138 subjects randomly assigned to either eight weeks of mindfulness yoga or stretching and resistance. They had one session with a leader and were asked to do two other 20-minute sessions per week. It was not a terribly big burden, but they saw good improvements in depression, anxiety and quality-of-life scores.

Dr. John Duda 01:18:43
Maybe most intriguingly, they saw fairly robust decreases in overall motor function. The MDS-UPDRS is the way we measure motor symptoms in Parkinson's disease, and they showed about a one-third reduction in those, which, if you had a medication that did that, would get FDA approval immediately. Again, it's open label, so you have to take it with a grain of salt. You don't know if they just felt their symptoms were better because they knew they were doing these interventions, but it was compared to a stretching and relaxation exercise program, and that didn't have the same magnitude of effect. There may be something special about mindfulness meditation.

What is mindfulness? You can define it as the basic human ability to be fully present, aware of where you are and what you're doing, and not overly reactive or overwhelmed by what's going on around us. That's a definition from Mindful.org. Essentially, it's the ability to be aware of what's going on in this present moment without judging it.

I do this with all of my patients. I tell them to close their eyes and try to focus on their breathing for as long as they can. Within seconds, literally, most people realize that they're thinking about something else other than their breathing. That proves that we're not really too good at focusing our attention on something for very long without having other thoughts pop up. A lot of times, those thoughts aren't very helpful. But all of us have the ability to be mindful.

When you're focusing really hard on something like a sport or driving, we're usually more mindful. Obviously, some people aren't very mindful when driving, but this state of being aware of what's going on right here, right now, without judgment can be strengthened with training, and that's called mindfulness meditation. There are many different forms of mindfulness meditation, either focusing on your breathing, walking, eating or anything that's happening right now. If you focus on that instead of worrying about what happened in the past or what's going to happen in the future, you're being mindful.

Dr. John Duda 01:21:11
There are other types of practices within the mindfulness tradition as well that can help with other things, like improving your compassion, quality of life and outlook. If you just Google mindfulness, you'll find a million different resources. Some of them are better than others, but I encourage all of you to look into it and try to find something that you think may be helpful. If you want, in the discussion, I can give some recommendations for apps that are particularly useful, or webpages or whatever.

Next is sleeping. I think most of us know and recognize that sleep is very important for our mental and physical health, and people with Parkinson's disease have a problem because they often don't get enough. There are a number of sleep problems that happen in Parkinson's disease, some fairly specific to Parkinson's disease and some not so much. These include insomnia, having difficulty falling asleep, and having your medications wear off at night, so you have difficulty turning over in bed and wake up because of that or other symptoms.

There's something called sleep fragmentation, where you fall asleep okay - you don't have insomnia at the beginning of the night, and this is probably even more common than insomnia - but after a certain amount of time, you wake up and feel like it's morning. You feel wide awake and can't get back to sleep. There's something called REM sleep behavior disorder, where you act out your dreams, often punching, kicking, yelling or hurting yourself or your bed partner, which is a fairly specific symptom of sleep dysfunction in Parkinson's disease.

Then restless leg syndrome. There are more people with restless legs who don't have Parkinson's disease than people who do, but a lot of people with Parkinson's disease express symptoms like that as well. Sleep apnea is very common in the general population, so it's going to be very common in the Parkinson's population as well. We know that untreated sleep apnea has detrimental effects on your vascular system, your heart and your brain, so getting that addressed is important too.

Dr. John Duda 01:23:23
Excessive daytime sleepiness is also a problem. Obviously, if you don't sleep well at night, you're going to be sleepy during the day. But some people sleep through the night and feel restored. I ask my patients, when you wake up in the morning, do you feel like you've had a good night's sleep? If they feel that way, I'm less concerned that they have a primary sleep disorder. Most people with PD don't, so I often refer them to sleep specialists, but some people do sleep well and still feel sleepy. There are different ways we can manage that as well.

Don't forget to talk to your physician about sleep. Most good movement disorder neurologists will talk about sleep problems, but often general practitioners or general neurologists will not. It's up to you to bring up whatever symptoms you're having with your sleep and discuss them. Consider involving a sleep specialist if you think you're not getting an adequate response from your typical provider, because many of these problems have good treatments. Some of them are pharmaceutical, but many are not.

If you have sleep that is non-restorative, meaning you don't wake up feeling refreshed, I think most of those people should have a sleep disorder referral and a sleep study. If you have insomnia, especially beginning-of-the-night insomnia where you lie in bed for hours trying to get to sleep, try something like the CBT-I programs. If you're a veteran, you can easily get this in the VA. It's cognitive behavioral therapy for insomnia. In fact, it's the number one recommended therapy for insomnia in the VA before you try medications and things like that, and it often helps.

Dr. John Duda 01:25:20
For everybody who is having trouble with their sleep, learn about and practice sleep hygiene. Just like if you didn't shower and clean yourself regularly, your personal hygiene would suffer. If you don't practice certain things regarding sleep, then your sleep hygiene suffers. This is a quick list of some things involved in typical sleep hygiene programs, including maintaining a regular sleep schedule.

Basically, all of these are intended to train your brain that when you're going to sleep, you're supposed to sleep, and when you're not in bed, you're not sleeping. Improving the atmosphere around where you're sleeping, and improving the likelihood that you're going to fall asleep and stay asleep, is the idea. If you just Google sleep hygiene, you'll find many good references.

It's things like not exercising, drinking alcohol or having big meals soon before you go to sleep, because those things tend to impair your sleep. Lowering the light, and often the temperature, as you approach bedtime can be helpful. We all know about blue light and how it can affect your sleep. Not using a screen, like your phone, TV or computer, for at least an hour or more before you go to sleep is important. When you're doing that, you're telling the parts of your brain that used to wake you up in the morning when the sun came up that it's time to get up. Your brain doesn't know the difference between sunlight and the blue light coming out of your iPhone. It's important to limit that before bedtime. I encourage you to try those things.

Dr. John Duda 01:27:33
Social connection is the last one of these that we're going to talk about, but there's a growing recognition that it is very important. Obviously, COVID led to some of that recognition because of all the disconnection we experienced during COVID. This is a study from my colleague Indu Subramanian using data from Dr. Mischley's CAM Care in PD study. It looked at things other than diet, like exercise. The more you exercise, the lower your score on that PRO-PD symptom severity score.

If you exercise 30 minutes a day, three days a week, you have a very good benefit. If you exercise seven days a week like that, you have an even better benefit. But if you have lots of friends, it's almost as good as exercising three days a week. If you practice stress management, like mindfulness meditation, it's a good benefit. It's like eating a lot of fruits and vegetables. But if you have a lot of stress, or especially if you self-report as being lonely, you have a very detrimental effect on your symptom severity as assessed by this one study. It's difficult to untangle all the effects of all the different things we're looking at, but suffice it to say that there's good reason to believe that if you're lonely, your PD symptoms are going to be worse, and if you have a lot of stress, they're going to be worse as well.

Dr. John Duda 01:28:57
Maybe even more importantly, every symptom you have is going to be worse. This blue outline is for people who do not feel lonely. This is the severity of their symptoms. For sexual dysfunction, they have this much. But the people who do feel lonely report having this much - 34 compared to 47 - and this is visual disturbances. Every one of these symptoms is worse in people who feel lonely. Depression is a big one, and it's possible that depression can make other symptoms feel worse, so sometimes it's difficult to untangle that. But people who are lonely are often depressed.

Improving social connection, the number of friends you have and how often you see people seems like it may be helpful in reducing your symptoms. What should you do? Things like this. Right now, you're not really seeing other people other than me, but at least you're seeing me and you're not doing something that's completely impersonal.

Joining a support group nearby, either in person or virtual, can be beneficial. Staying connected to family and friends is very important, especially as mobility changes. That can be a real problem for people. They feel embarrassed to get out and see their friends and family because they don't want to be a burden and other things, but it's detrimental to your health to do that.

Volunteering in your community, if you don't have a lot of family and friends to hang out with, is a great way to increase your interpersonal connections. As many of you know who have lived a life of service or served our country, service clearly improves mood, self-worth, quality of life and many other things. I think that's a great idea.

Jumping in with what Dr. Morley was saying, joining an exercise group can help. There are many online. If you search exercise groups for Parkinson's disease online, you'll find innumerable ones. Many are free. Some have small monthly fees if they include a physical therapist or trainer. I think it's a great way to connect with people. You can also go to your Rock Steady gym and do those classes or other fitness classes.

I'm going to stop there. I forgot exactly when I was supposed to stop. I think I actually saved some time for questions. These types of talks always come up with innumerable questions, and I would be happy to start answering them if that's where we're at. I'm sorry if that's not exactly where we're at.

Melody McLaughlin 01:32:43
You're spot on, Dr. Duda. Thank you so much for that fantastic presentation. We will be taking questions from our web audience now, and I also warmly welcome Dr. Morley back on our Zoom screens to help answer questions from his presentation. I will say in advance, we get a lot of questions, so if we're not able to get to yours, please call our helpline. We'll also include the VA number for their help service as well. There's no shortage of people who can help you, so if we don't get to your question, it's not that it's not important. Time is always of the essence in these Zoom meetings.

Dr. Morley, welcome back. Thank you both for your presentations. They were so fantastic. I have not introduced myself yet. I'm Melody. I'm Nancy's counterpart in the New England chapter as a community program manager, so I'm happy to moderate this Q&A session here.

We did already get a lot of great questions, and if you haven't already submitted your questions, or maybe a question inspires you to ask another, that Q&A button is still open on the bottom banner of your screen. Feel free to type it there, and we will try to include as many as we can. It always feels like a lightning-speed round, doctors.

Melody McLaughlin 01:33:57
Here we go. We have this first question here for Dr. Morley, and at any point, feel free also to chime in on each other's questions. I'll assign them the best I can based on your presentations.

Dr. Morley, what are your thoughts on wearables and smartphone apps like the StrivePD app or watches? How might that impact a fitness routine and health status?

Dr. James Morley 01:34:22
I think it's a great question because there are so many and so many to choose from, and it's hard to know what to make of it. I think they can be very useful. Just something as simple as a Fitbit or step counter gives you a way to compare yourself over time and say, am I really making progress? Am I really hitting the goals that I want to? I think those are great. They can be used to design interventions to motivate you to do more and more, whether it's in the setting of a clinical trial or not.

I think wearable sensors in terms of monitoring symptoms are also really, really interesting. They're maybe not as well studied, and I worry sometimes that patients get a little too attached to them: are my symptoms this much better today or that much worse today? I would encourage people not to get too wrapped up in it. But I think anything that gets people engaged and interested in participating in their own care, and interested in how they can take control in their Parkinson's disease, are good things.

Melody McLaughlin 01:35:35
Thank you so much. Dr. Duda, that kind of prompted me in Dr. Morley's answer. I know on some different phones there are sleep apps to track sleep. What are your thoughts on things like that?

Dr. John Duda 01:35:49
I don't know of any research on that in Parkinson's disease. There are some studies, I think, that are trying to look at that. I think, as Dr. Morley said, if you try it and you find you're sleeping better, then sure. I also would be hesitant to have people focus too much attention on nitty-gritty scores - I'm 97% sleep value versus 94%, or whatever.

I would probably steer them more toward the CBT-I and other treatment-focused apps and programs rather than the monitoring ones, especially if you feel like you're sleeping well. I don't think there's a great reason to do it. Even the ones that do very well, people who study them find that they're perhaps not as accurate as we would like to think they are. If you're into gadgets and you like it, give it a shot, but don't put all your eggs in that basket. If you're having problems, talk to your doctor about it, get referred to a sleep specialist, and try something like CBT-I or sleep hygiene tips.

Melody McLaughlin 01:37:36
Thank you both. Dr. Duda, this next question is for you: Since my Parkinson's diagnosis, I've noticed I've lost weight. Do you have any suggestions for ways to gain weight healthily while not just eating donuts and sweets and high-protein foods?

Dr. John Duda 01:37:53
Great question. Like I said in the talk, it's not an uncommon problem. Obviously, someone who is moving all the time with tremor or dyskinesia is at risk of burning more calories than they're taking in. For most people, it's a good thing that it's hard to eat too many calories on a healthy diet. If you're not eating much oil, fried food or high-caloric-density foods, then you tend to lose weight, which for the majority of Americans is a good thing.

For people who are already at a normal weight or are trending low, that can be a problem. Healthy choices for weight maintenance, high-caloric healthy choices, are focused mostly around nuts, seeds, nut butters and things like that. Sometimes healthy pastas or healthy sources of carbs can have a lot of calories in them. It is a problem on occasion.

Now there are so many good choices for plant-based alternatives for dairy products. Compared to certain things, vegan mayonnaise and vegan cheese are not as healthy, but they are a good source of calories. Things like that, I guess I would suggest as well.

Melody McLaughlin 01:39:43
Awesome, thank you. Dr. Morley, we have some questions here about exercise and whether or not it can really help with balance or freezing problems. If not, or if so, what else can people do to help with these challenges? Who can they see?

Dr. James Morley 01:40:03
That's a really good question because it's an example of two things that don't always get better with medication and become much more difficult to treat the longer folks have had Parkinson's. I would say they're not exactly the same thing. Balance is one thing, and freezing, this getting stuck, I think about a little bit separately.

I talked about studies looking at specific exercise programs like tai chi, qigong or physiotherapy prescribed for Parkinson's disease, and those are useful and evidence-based interventions to try to improve balance. Certainly, do any of this in consultation with your neurologist and/or physical therapist to make sure that, if you're at risk for falls because you have bad balance, you're not engaging in activities that are going to put you at higher risk.

Freezing is tough. It's really, really tough. I think Dr. Duda would agree that clinically it's one of the more challenging things we face. For freezing, we talk a lot about when it happens. Is there some correlation that we can do something about between medicines wearing off, with off freezing, or is it happening with on freezing? Some people experience that. If you learn that, then you can hopefully make adjustments to medications or perhaps use a rescue therapy for situations where people get stuck or frozen.

When there aren't those obvious relationships, it's a little trickier. I think what we will do is refer our patients to physical therapy because sometimes physical therapists can mimic real-world situations a little better than we can in the office. Is it corners? Is it stairs? Is it doorways? Then they can work with patients to develop strategies to get out of a freezing episode. Among this group of veterans, often a count-off and starting a march is something that some people find very helpful, or picking out a target and stepping over it. There are even studies with little lasers that shoot out of canes or other visual targets. For freezing in particular, working together with physical therapy and rehab is really, really important.

Melody McLaughlin 01:42:28
Awesome. Thank you. That's really helpful. Thanks for distinguishing those two very different symptoms. Dr. Duda, can you speak a little bit more about the timing of medications with meals and the protein factor as well?

Dr. John Duda 01:42:47
Yes, thank you. Great question and something that, when I have a full hour to talk about, I certainly include. If you Google my name and nutrition and videos, you'll find several online for different organizations that I've done over the years that go into great depth about this.

For those of you who don't know, Sinemet is two compounds: carbidopa and levodopa. Levodopa has the same shape, or is similar, to certain types of amino acids that you get when you eat protein. It is absorbed into the body and into the brain by the same receptor that absorbs those amino acids. The thought is that if you take your Sinemet, which has levodopa, at the same time when you have a lot of amino acids from a high-protein meal circulating in your blood, it's going to have a hard time first getting into your blood through your gut and then getting into your brain.

Some people will notice a difference if they take their Sinemet half an hour before they eat. They have a certain amount of benefit. If they take it during or after they eat and have protein in the meal, they may not see as much benefit because not as much of it is getting into the brain where you need it. Early on in the disease, that's unusual. Usually there's enough reserve of levodopa in the brain to avoid that, but particularly later on, as more cells have died or are having trouble, you're more reliant on the blood level of levodopa. In that case, it can make a big difference.

What we typically ask people to do is take their Sinemet 30 minutes before or an hour after a meal. If they're having a lot of problems with fluctuation, in addition to the pharmaceutical treatments that we use for motor fluctuation - a feeling that your medications kick in and work pretty well and then, after a delay, are not working anymore - one thing to try is a protein redistribution diet, where you take the vast majority of the protein you're consuming in that day in the evening meal.

In the evening, you're not moving around as much. There's no great evidence that you need to be eating protein all day, so it's fine nutritionally and can help your synapses work better throughout the day. The vast majority of people in America eat too much protein anyway. The meat and dairy industries and others have led us to believe that we have to eat a hunk of meat every meal, every day, and it's just not true. There's no evidence that you need that much protein to be healthy. Ninety-seven percent of Americans, or something like that, get enough protein, whereas 93% of Americans don't get enough fiber. Instead of asking me, the guy who doesn't eat meat, where I get my protein, I'll ask you where you get your fiber. If you're only eating meat and cheese and standard American diet kind of stuff, you're almost certainly not getting enough.

Melody McLaughlin 01:46:19
Thank you so much. I think that could be a whole other discussion. You're so right. Forty-five minutes is just not enough time to get into the timing, the protein, fiber, everything. Thank you.

Similar question for you, Dr. Morley, about timing and exercise. Is there a better time of day to implement an exercise routine, morning or afternoon, before or after medications? I don't want to complicate things for our viewers in trying to get this puzzle together, but it's an important question.

Dr. James Morley 01:46:54
I think it's a really important question, and I will definitely keep it simple with maybe a couple of caveats. Just like the best exercise is whatever will get you to exercise, the best time is whenever works for you to exercise. There are morning people, night people and afternoon people. I know for me personally, if I don't exercise first thing in the morning, it's probably not happening. I have to focus on scheduling it then. Some people need to do whatever they need to do in the morning and exercise in the afternoon.

One caveat you brought up is medication. Certainly, if you're going to be doing anything complicated that involves balance and risk of injury, you want to do it when you feel like you're in a good on state. If you know you have more trouble in the afternoon, then exercise earlier in the day.

The other caveat is sleep. In the sleep paper that I put up there, I focused on the fact that chronic exercise helped a lot of sleep variables they measured, but they also looked at the acute effect of one exercise session, depending on when you do it. If done too late in the day, some people find that exercise interrupts their sleep. People have to pay attention to their own body. But from a physiologic basis, is there a morning, afternoon or night time when you get the biggest benefit from exercise, or where it has effects it otherwise wouldn't? I don't think there's any good evidence for that, as far as I'm aware.

Melody McLaughlin 01:48:42
Thank you. Actually, you just answered our next question about whether an exercise routine can impact sleep. I'll rephrase it a little bit for Dr. Duda. What about mindfulness practice? Can that help with sleep? Do you recommend doing it before bed?

Dr. John Duda 01:49:02
Good question. First, from the last question, it's important to recognize that exercise can affect sleep if you do it late in the afternoon or evening, as Jim said. But for the most part, people who have a regular exercise program have better sleep than people who don't. That's a good reason to do it.

For mindfulness practice or other stress reduction techniques, like yoga, prayer, tai chi or whatever your choice is, I generally tell people to do it when you will do it. The problem with waiting too long to practice mindfulness is that, in sitting and focusing on your breath, if you're tired, you can fall asleep. Is that the end of the world? No. If you're tired enough that you're going to fall asleep while trying to do something else, then maybe you need a nap.

I'm a believer in naps, particularly for people who are older and have Parkinson's disease. It's much better to take a nap that is not a long nap. If you sleep too much during the day, you're going to have trouble sleeping at night, and there's a lot of day-night reversal in Parkinson's disease where that happens. But fairly brief naps of 30 minutes or so can be very restorative and better than some other alternatives.

You probably want to practice mindfulness when you feel fairly awake and on, but more importantly, find a way to make it a habit. There's good evidence that even five minutes a day can make a real difference. If you do that for a while and slowly increase how much you're doing, you'll get even more benefit. It has a lot more benefit that way than doing all 30 minutes in one day. So much of our life is habit and routine. Find a slot where it can fit into your routine and become as routine as brushing your teeth or anything else. That's a great approach.

Melody McLaughlin 01:51:26
Thank you. This next question looks like it's for you too, Dr. Duda. We talked a little bit about fibers and proteins. What about the vegan diet? How might it compare to the Mediterranean or MIND diet, and similarly, the keto diet that's popular right now?

Dr. John Duda 01:51:48
Good question. A vegan diet is a diet that does not include any animal-based foods. It doesn't include meat, poultry, seafood or dairy. A vegetarian diet is the same thing except that it allows dairy products.

A ketogenic diet, strictly speaking, is one that puts your body into ketosis, where your carbohydrate consumption is so low that you're not generating enough energy for your body to do its normal functions and you start burning your own fats to produce something called ketones, which are also used by brain cells in an emergency, if necessary, to function. I think it's a complicated story. Some people feel a whole lot better on a ketogenic diet. They feel less mental fogginess and other things. There are some small studies of ketogenic diets in Parkinson's disease that suggested an effect in an open-label fashion.

For people who are younger, I worry that a ketogenic diet, which is high in meat products, saturated fat and things like that, may have long-term consequences for brain function regarding vascular supply. It's not clear that a ketogenic diet is great for your heart and brain if you're clogging the arteries by eating so much saturated fat.

A vegan diet can be healthy because it's mostly plants. However, the difference between a whole food plant-based diet and a vegan diet is that French fries, Twinkies, potato chips and soda are all vegan, but they're not health foods. That's why there are so many unhealthy college-aged vegans out there. They're doing it perhaps because they don't want to harm animals, which is a great reason, but they're not being smart about it and they're eating junk food that happens to be vegan but isn't healthy.

A whole food plant-based diet means eating plant-based foods in a less processed way. A potato is actually a healthy food. If you take a potato, bake it and eat the skin and everything, there's nothing wrong with it. Eating a lot of it can bring in a lot of calories, but it's mostly when you slice it up, deep fry it, put cheese on it and add other things that it becomes unhealthy. The less processing, the better. The way we prepare foods can make a difference as well.

Again, I always say compared to what? A vegan diet is much better in most cases than the standard American diet, which is abbreviated SAD for a reason. But it's not necessarily a healthy diet. Go back to some of my previous videos or look online and you'll find out the difference. I encourage people to increase the amount of plant foods they're taking in. It's harder to get rid of something than it is to add something, so adding more healthy plant foods is a better approach than trying to eliminate unhealthy animal foods and other foods. Eventually that will happen because you'll feel better and you'll continue to decrease the amount of animal foods you're eating. For most people anyway.

Ketogenic is hard to say. If you're young, I would discourage it. You also lose weight on a ketogenic diet most of the time because you're not taking in enough calories to maintain your weight. That can be a problem for people with Parkinson's disease. If you're older and you're not at all worried about your vascular function, then it's possible that it may be helpful, but it's no miracle treatment that some people suggest it is. At least, the evidence is weak for that.

Melody McLaughlin 01:56:36
Awesome. Thank you so much. I know we got a few questions about that diet in particular. We are almost at time, so we have just enough time for two more questions. I want to make sure people are getting information about their local VAs. Dr. Morley, I know you shared a lot of different research happening. We will share those slides again, folks, so the information for those studies is on the slides and we will get those to you in an email. This question can be for either of you: How can someone find out about the research that's happening at their local VAs?

Dr. John Duda 01:57:17
All VAs have a research department. If you're looking in particular for Parkinson's research, go to the neurologist if you have one. Some VAs don't even have a neurologist, but go to the clinicians there and ask about research opportunities. If you don't get any answers, ask if there's a research department. They often have research fairs once a year or so where they bring in patients and talk about different research programs that are going on.

In general, it's the bigger VAs that are affiliated with universities that have the broadest reach of research opportunities. There's no easy way, no website that I'm aware of where I can say, go here and you'll find out which ones are available. ClinicalTrials.gov is a good place to look for clinical trials in general, for Parkinson's disease or for anything else. It's a website run by the government where almost all clinical trials are listed, and they will often list the sites where they're being performed. If you're looking for clinical trials in particular, that's where I would go.

Dr. James Morley 01:58:35
I was just going to mention that I think you could probably select keywords for veteran and your city in ClinicalTrials.gov. You might be able to do something similar with the Fox Trial Finder.

Dr. John Duda 01:58:46
Use a general resource for clinical research and then try to tailor it to your geography. There is also our website, www.parkinsons.va.gov, which is a good place to get more information about ongoing research. We have newsletters that come out talking about research. There are six of these Parkinson's Disease Centers around the country and 50 to 60 satellite sites. There are ample opportunities, and the Parkinson's Foundation and VA collaboration that started a couple of years ago has done a great job of expanding awareness and access to those opportunities.

Melody McLaughlin 01:59:36
Awesome. With just about a minute left, I want to thank you both so, so much for your fantastic presentations and for joining us for this Q&A session. Again, our viewers' questions are so important to us. If we did not get to your question, please do call our helpline, 1-800-4PD-INFO. I see my colleague queuing up our final slides. Again, Dr. Duda and Dr. Morley, thank you. We also have Gretchen Glenn here, who has been such a great support to this program as well.

For our viewers, please know you're not alone. Our respective organizations are here for you, and we look forward to connecting with you. If you have a question that was not addressed, please reach out to our helpline. It's staffed by my colleagues and Parkinson's specialists at 1-800-4PD-INFO. You can also call the VA at 1-800-949-1001, extension 205769. Thank you again for your service to our country. We hope you enjoy the rest of your day.

Again, thank you, Dr. Morley and Dr. Duda, for sharing your time and expertise with us and the veterans Parkinson's community. Thank you to all of our attendees joining us today. We hope you find today's discussion really helpful, and you can review those slides at a later date. Thank you, Gretchen Glenn, social worker and associate director of the Philadelphia Parkinson's Disease Research, Education and Clinical Center, for all your assistance. Many thanks to Genentech for your support of our mission in serving the Parkinson's veterans community.

Immediately following today's program, you'll see a survey pop up on your screen. Please try not to ignore it. Take a moment to complete the evaluation. This really helps us know how to improve our programs to better serve you, and your feedback is so important to us. One final reminder that this program was recorded, so you'll get a link with the video in an email, and the slides. You'll have everything there for you. Thank you so much for joining us. Hope you all have a great afternoon.

Dr. John Duda 02:01:41
Thanks, Melody. Thanks, everybody.

Melody McLaughlin 02:01:44
Thank you. Thank you.

John Eric Duda, MD
Professor of Neurology at the Veteran's Administration Medical Center
Director, Parkinson's Disease Research, Education and Clinical Center of the Michael J. Crescenz VA Medical Center, University of Pennsylvania
Co-Director, Center for Neurotrauma, Neurodegeneration and Restoration of the Michael J. Crescenz VA Medical Center, University of Pennsylvania

James F. Morley, MD, PhD
Assistant Professor of Neurology at the Veteran's Administration Medical Center Staff Neurologist, Philadelphia VA Medical Center
Associate Director, University of Pennsylvania/PADRECC Movement Disorders Fellowship Program. Co-director, Parkinson's Disease Research, Education and Clinical Center, Crescenz VA Medical Center

Adriana González, LCSW, es graduada de la San Diego State University, con una maestría en trabajo social y tiene licencia en el estado de California.  Como trabajadora social en el Centro para el Parkinson y Otros Trastornos del Movimiento de la University of California, San Diego, Adriana trabaja en colaboración con su equipo para satisfacer las necesidades cambiantes de las personas que viven con la enfermedad de Parkinson y su familia.

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.

Many people enjoy travel to see family and friends, revisit favorite places, make new friends, or experience new sites, cultures, and cuisines. Travelers would probably agree with Mark Twain's admonition that broad, wholesome, charitable views of men and things cannot be acquired by vegetating in one little corner of the earth all one's lifetime. Parkinson's disease may be a challenge, but with proper planning, enjoyment of life, including travel, can go on. Today's guests emphasize the importance of planning for extra time for tasks, for medication timing, extra medication supplies for unforeseen delays, and for alternate plans to deal with today's commonly disrupted travel schedules. Being prepared is a great stress reducer.

Our guests have valuable insights into travel with PD. Occupational therapist Julia Wood is with the Lewy Body Dementia Association and has also worked in the Parkinson's area for several years. Rebecca Miller is a clinical psychologist at Yale University in New Haven, Connecticut, and lives with Parkinson's. She had traveled to Boston, where we spoke. Let me ask you, first, Rebecca, how old were you when you were first diagnosed with Parkinson's?

Rebecca Miller 2:10 I was 39. My daughter was nine months old, although I'd had symptoms for probably about 10 years previous.

Dan Keller 2:17 When you travel, what sort of things do you have to do differently, or what's changed from, say, before you had symptoms?

Rebecca Miller 2:26 I think one of the major things that's changed is planning, so I start early, start often, just to make sure that I have everything organized, making sure that I have everything ready to go. I traveled up here from New Haven to Boston today, and when I left my house, you know, I had to do a mental checklist, basically to say, do I have my credit card and do I have my meds. Those are the two most important things. So, I think that's the other thing, is making sure always to have my meds.

Dan Keller 2:56 Is it more burdensome to do the kind of planning you've said, and you have to make sure, and it sounds like this is an effort?

Rebecca Miller 3:05 It is an effort in a way. I mean, I think it's just, you know, breaking it up into small parts over a longer period of time. So, it used to be that I'd be able to just kind of throw everything in a bag the night before and feel comfortable and walk out the door, and now some of that is maybe getting older, some of that is getting wiser, I hope, and some of it is having a kid, but I think it's also that I know that if I'm not feeling that well right before I need to go, that I'm not going to be able to manage right before, so I have to start earlier.

Dan Keller 3:37 I've traveled a lot to medical conferences, sometimes as much as once every two weeks, and it was like reinventing the wheel every time. I just hate packing. How old is your daughter, and do you travel together at all?

Rebecca Miller 3:52 Yeah, so she's now nine years old, and we do travel together. We just recently took a trip up from New Haven, Connecticut to Great Barrington, Massachusetts, which is not that long, but we still got organized early. I think one of the harder trips was when she was around nine months old, or so. I went solo with her to Seattle, so that was a real challenge, along with just trying to get myself organized, get her organized, and then get on a plane, etc.

Dan Keller 4:24 Traveling with a kid that age looks like a big ordeal anyway, getting all the stuff together.

Rebecca Miller 4:30 Yeah, but then with a layer on top of that, just the fatigue with the Parkinson's and kind of juggling my own symptoms, it was, it was a real challenge. I got to Seattle, and I kind of fell into my brother's arms, who I was visiting there, and just started crying, because it was really overwhelming. But I don't want to let it stop me from traveling, because traveling is something that's important to me, important for me to do with my daughter.

Dan Keller 4:55 How do you plan around the fatigue? And since you mentioned Seattle, how do you plan around time zone changes, especially with medication and sleep?

Rebecca Miller 5:05 It's certainly a challenge, especially three years ago I went to Kyoto for the World Parkinson's Congress, and that was definitely a challenge. And in fact, that's when I really started using a timer for my meds, so I do every four hours, so regardless of where I am in the world, I know that every four hours I need my meds, and since I take my meds on a 24-hour cycle, I'll wake up to take them during the night as well. So that four-hour timer system worked pretty well for me.

Dan Keller 5:33 Do you find that airports or train stations are particularly stressful? Would you prefer to drive, or doesn't it really matter?

Rebecca Miller 5:42 I think it depends. I mean, driving has its own set of challenges, in that if my symptoms start increasing, then I'll need to pull over if I don't feel like I'm able to drive safely at a certain point, and then just driving is exhausting. It is nice to have control and go exactly to your destination in your car, but I think that fatigue aspect, and you know, I recently had DBS, this past September, so that's helped a lot. I'm feeling more and more comfortable, but prior to that, it would be very challenging when driving, especially dyskinetic or off, you know, not feeling like it was safe for me to be on the road.

Dan Keller 6:21 Do you think there are things you haven't figured out yet to your satisfaction?

Rebecca Miller 6:26 My impulse is to answer no, of course not, I have everything figured out! But yeah, you know, I mean, traveling is an aspect that you always have kind of tips and tricks to make it easier, and I think I'm still working on figuring out what those things are. There was just recently a panel discussion on travel for people with Parkinson's, and hearing other people's tips and tricks is really helpful. So that's always good, and getting that kind of peer support around it is always helpful.

Dan Keller 6:53 Julia, what do you recommend that Rebecca may not have thought of yet, or that you've encountered from people?

Julia Wood 7:01 It's funny that she brings up planning, because that's the number one thing I think is plan early and often. Also, though, I think another point that could be made sometimes is working with your medical care team to help you plan for that. You may need the help from your doctor to have different notes for use of different medications or medical devices that you need to bring.

I think, also, physical therapy can be great for helping with tips and tricks around navigating with maybe using an assistive device in the airport, or for once you get there, because often I think that people take for granted using an assistive device is not an all-or-none. It's not that once you use a walker, once you use a wheelchair, you have to use it all the time. Maybe you just need it for getting from point A to point B for this one thing, and that's okay.

And then also, as an occupational therapist, I worked a lot with people on how to plan—how to plan around their fatigue, how to plan around their med cycle, how to pack and plan, having checklists, sometimes packing cubes, things like that, that can help organize your packing a little bit more. I think it really depends on the individual. There's a great article by a researcher named Aaron Foster and Joan Tolia, where they talk about the strategy around cognition, where you look at where the challenges might be and what could you do differently. How could you approach that differently? And I think that's a great strategy for most anything: Where do you think there might be challenges, and what can you do to meet those challenges?

Dan Keller 8:24 One thing I've seen suggested about assistive devices is put your name and contact information on everything, because in travel all sorts of things go to the four winds.

Julia Wood 8:34 Absolutely, absolutely. You don't want to end up with someone else's trekking poles or walker or wheelchair.

Dan Keller 8:41 What about stiffness during travel, sitting for a long time, and what do you do to relieve it then and afterwards?

Julia Wood 8:48 Oh, absolutely. Well, I think number one is trying to get up and move as you can. You can even do seated mobility exercises, you know, just tapping the toes, tapping the heels, so you're moving at the ankle, maybe marching in place before you try to get up on the airplane or get up on a train to move, you know, stopping if you're in the car and taking some movement breaks. I think that's really, really important, just to kind of, you know—motion is lotion, keeping the body moving as much as you can.

Dan Keller 9:16 You find that, Rebecca?

Rebecca Miller 9:17 Oh yeah, for sure. And I think another thing about planning is planning extra time for things. So previous to Parkinson's, I might try and schedule myself very tightly in terms of when I leave, when I get there, etc., like I can, you know, be able to make it, and all these kinds of things. But now I like to give myself some extra time on either end to try and have that, because I know I'll need to rest, or, you know, have the chance to kind of settle in. And then in terms of assistive devices, I love my fold-up cane that I can just stash in my backpack, so I can have that if I need it, and it kind of whips out, unfolds into a nice device, so that's helpful.

Dan Keller 9:54 Exercise is highly recommended in Parkinson's. How do you exercise on the road? What can you do?

Julia Wood 10:00 I think that's something that you can, number one, talk with your physical therapist or your occupational therapist, maybe even your exercise professional, about kind of having a packet of exercises that you know you're going to do on the road. You can check ahead and see if there are, you know, gym facilities or exercise facilities wherever you're staying, and plan with that. Some hotels, even now, have it where you can rent exercise clothing when you get where you're going, even shoes and things like that, so I think that, you know, once again it's that planning piece again that Becca mentioned. So really thinking ahead about when are you going to do your exercise, trying to stay on the same schedule is also important with your exercise as well as your meds, if possible, and keeping that routine going.

Dan Keller 10:37 It's too bad they don't have people you can hire to do the exercises for you.

Julia Wood 10:41 That's what everybody wants!

Dan Keller 10:45 What about taking advantage, knowing about, and taking advantage of accommodations at train stations, or in airports, or things? Do people not know about them, or ignore them, when it could actually be pretty helpful?

Rebecca Miller 10:59 I mean, I think, especially at airports, you know, getting to ride in that little cart to start, you might feel a little embarrassed about it, but I think there's a certain point where, at least for me, I've given up that kind of embarrassment, for you know, just that it helps me so much if I can take advantage of those kinds of things. Things like using the handicapped parking pass that I have, you know, even if I'm feeling good when I pull into the space and put up the placard, and I'm a little embarrassed that I get out and walk—I'm okay when I walk out of the car, but I know that there's always that possibility that when I come back, that I need to plan ahead for myself and know that that's a possibility for myself and take care of myself in that way.

Dan Keller 11:38 Do you have an Aware in Care kit? Do you take it with you?

Rebecca Miller 11:43 I do have an Aware in Care kit. I have taken it on longer trips. I just was suddenly embarrassed that I hadn't taken it today, but I'm just here for one night. But yes, I do have an Aware in Care kit. I'm actually an Aware in Care ambassador, so yes, I'm very familiar with it, and very happy to take it with me.

Dan Keller 12:00 Never needed to use it?

Rebecca Miller 12:02 Oh, I have, actually. Yes, I have. Unfortunately, it did come in handy.

Dan Keller 12:07 What are some ways that either of you know about to make travel less stressful? How can you plan ahead that lessens the stress?

Julia Wood 12:17 I think plan for the worst and hope for the best. You know, it's not that I want people to perseverate on the negative, but really thinking about what obstacles and what barriers and challenges might come up, and feeling like you're really prepared for those. You know, what happens if your meds go off? What happens if you have freezing of gait? All of those things that you can really plan and feel like you have kind of a plan of attack, I guess, of going into—I think that really helps relieve a lot of stress and anxiety around travel, and then will help people feel more prepared as well.

Dan Keller 12:49 What about planning nonstop flights, and/or carrying extra meds in case you get stuck somewhere, or a prescription, or a letter from a doctor explaining what's going on, are those all helpful things?

Rebecca Miller 13:04 Yeah, I find that for sure. I mean, I tend to take my med bottles, you know, with the original prescription information on them, as well as packing doses of meds in different places, just in case, so that I have it directly on me, as well as in my luggage—not checking my meds, for example, but instead keeping them in my carry-on, just so I know that I have it. And a letter from the doctor, I have one of those in my Aware in Care kit, also for COVID-19 accommodations, in particular in case I am hospitalized.

And I think, as Julia said, just planning ahead—being a single mom and traveling with my daughter, there is a lot of anxiety at times, you know, thinking about if I do have some kind of accident or hurt or symptoms come up while I'm on the road. That is nerve-wracking, but I think thinking those situations through ahead of time and coming up with a plan and talking to my daughter about what are things that you can do if Mommy is incapacitated, that helps me feel better, as well as helps her feel like she's more in control.

Julia Wood 14:04 I think it's important for people to know, too, that in addition to having that carry-on bag and that personal item, if you have assistive devices or medical equipment you're taking, that doesn't count in that, so you can have those items additional to your one carry-on and your personal item. And I encourage people to really conscientiously pack that carry-on item. Think of the things you don't want to be separated from, and put all of them in that bag, so they're with you all the time, and really keeping, I think, a tight rein, so to speak, on how you pack and prepare and plan, so that you feel confident knowing that you have the things with you, and you won't get separated from the things that you need to have.

Dan Keller 14:43 And I suppose if you've brought your medication with you, you should be bringing a little bottle of water with you, or something, knowing you could get some juice or something to take it. What about health insurance? How portable is that, especially if you're traveling outside the US?

Julia Wood 15:00 It really depends on your plan, and I think it's important to check ahead of time with your health insurance plan and see what your coverage is. Also, sometimes with travel insurance, you can get different types of plans or things to cover you when you travel. I know right now there are even specific COVID-19 travel plans that you can get that provide coverage if you're hospitalized somewhere in another country, so I think that it's a good idea to think about that and look at options for when you're traveling, so you make sure you've got all your bases covered and you feel comfortable that you could access healthcare if you need to. You can also reach out to the Parkinson's Foundation helpline too to see what maybe Centers of Excellence are in that area or people that are in the network that you could maybe connect with, if you need to.

Dan Keller 15:45 Anything interesting or important to add from either of you, maybe in a nutshell, advice, or just something we haven't covered yet?

Rebecca Miller 15:54 One thing would be just don't give up your dreams of travel just because you have Parkinson's. You still can do it, and there are ways, and all kinds of accommodations, and people are so willing to help, generally, when you ask.

Julia Wood 16:07 I think that's such an important point—not giving up things that are meaningful. I get on my little OT soapbox a little bit, that every time you give up something that's meaningful to you, you give up all of the therapeutic benefit of that activity. So, with travel, you know, there's cognitive aspects, there's all the stimulation, there's enjoyment, so it really does enrich our lives in a lot of ways. And so think about—maybe even if it's someone that doesn't feel comfortable traveling internationally anymore, maybe there are places within the United States or closer that you want to travel to. So I think, look at still, how can you participate in that activity in a way that's meaningful, and even think of it as like a therapeutic activity that you're working on—all these different skills with your mobility, your communication, your socialization, as well.

Dan Keller 16:54 Very good, very practical advice. I'm sure listeners will get a lot out of it. Thank you.

As both Rebecca and Julia noted, planning and preparation are the key to enjoyable, lower-stress travel. These are the variables that a traveler with PD can control to deal with the other possibilities that no traveler today can control, such as delayed or canceled flights, changed itineraries, or weather emergencies. Carrying extra medication is imperative, and knowing you have a contingency plan for unexpected events or delays can help reduce stress. A preparation checklist may also help; as you think of things in advance of the trip, jot them down in one place. Then be sure to keep the list for future travel.

As Rebecca mentioned, she has used her Aware in Care kit on occasion. These kits contain a medical alert wallet card, medication forms, a hospital action plan, and more. If you would like to order one, call our helpline or go to our website at parkinson.org. Click on the three stacked bars at the upper right, go to "Resources and Support" in the drop-down menu, and click on "Hospital Care Kits." The medication forms alone can be useful for travel.

As always, our helpline information specialists are available to answer questions in English or Spanish about today's topic, or anything else having to do with Parkinson's, including finding your way around our newly redesigned website. 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. Till next time, 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.

Julia Wood, MOT, OTR/L is an occupational therapist specializing in assessment and treatment of people with Parkinson’s disease. Julia is currently the director of Professional & Community Education at the Lewy Body Dementia Association (LBDA). Julia has served as faculty for the Parkinson’s Foundation Team Training for Parkinson program since 2016 and served on the Parkinson’s Foundation Rehabilitation Task Force in 2021. She co-authored the first American Occupational Therapy Association Practice Guideline for Adults with Parkinson’s Disease in 2022 and serves on the Comprehensive Care Subcommittee for the World Parkinson’s Congress (WPC) in Barcelona, Spain in 2023.

Rebecca (Becca) Miller, PhD, is a licensed clinical psychologist and Associate Professor at the Yale School of Medicine, Department of Psychiatry, New Haven CT, USA. She received her MA and PhD in Clinical Psychology from Long Island University, Brooklyn, and her BA from Barnard College. She serves as Director of Peer Support at Connecticut Mental Health Center in New Haven, using her lived experience with mental illness to inform her work. Her publications and other scholarship have focused on peer support for persons diagnosed with serious mental illnesses, person-centered and recovery-oriented approaches, alternative experiential approaches to clinical training programs, and deprescribing in psychiatry. She recently co-authored the book, Deprescribing in Psychiatry, published by Oxford University Press. Becca was diagnosed with Young Onset Parkinson’s Disease, at age 39 when her daughter was 9 months old, and after living with symptoms undiagnosed for 10 years prior. She has served as a delegate and spoken on YOPD and parenting at the World Parkinson Congress in Portland, OR and Kyoto, Japan. She finds it delightfully ironic that she discovered snails were her totem animal 20 years before diagnosis with YOPD. She currently lives in New Haven with her now 9-year-old daughter.

Dan Keller 0:08

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.

Up to 40% of people with Parkinson's disease may experience impulse control behaviors, such as compulsive shopping, gambling, hoarding, or hypersexuality. Dopamine agonist drugs are the most common cause. Impulse control behaviors become impulse control disorders when they impair a person's ability to function at home, work, or just make it through daily life. These disorders affect an estimated one in six people with Parkinson's taking dopamine agonists at some point.

Not only does dopamine in the brain control body movements, but it's also involved in the reward pathways. So drugs that stimulate one function may also stimulate the other, meaning impulsive behaviors may be highly pleasurable or anxiety-relieving to the person experiencing them, and they may therefore try to hide them. But these disorders can be harmful to the person, their family, and others around them in terms of financial, social, and health outcomes.

The good news is that impulse control disorders are responsive to treatment when recognized early enough. I spoke with Dr. Mark Groves, a psychiatrist at Mount Sinai Beth Israel in New York, about the need to promptly recognize and report the disorders and what can be done about them. He first defined them.

Mark Groves 1:57

They're behavioral disorders defined by a failure to resist temptation or an urge or an impulse that can harm oneself or others. Essentially, they're behavioral addictions. Individuals who are affected by impulse control disorders compulsively pursue reward-based activities and fail to make careful decisions about the consequences of those repetitive activities.

Dan Keller 2:19

Are some more prevalent in people with Parkinson's?

Mark Groves 2:23

The ones that have been described most commonly in Parkinson's include compulsive eating, hypersexuality, compulsive shopping, and compulsive gambling. As well, hobbyism—which is over-absorption, excessive time in creative projects or hobbies such that it consumes an individual and affects functioning—has also been described. And a related behavior change is called punding, which is intense preoccupation with purposeless sorting, taking apart, or arranging objects, for example, medications or buttons or things like that.

Dan Keller 2:55

Are impulse control disorders stable within a person? Do they change over time, or accumulate?

Mark Groves 3:00

Individuals certainly can have more than one impulse control disorder, but once it develops, it usually doesn't go away without treatment, which requires usually medication reduction. In the largest cross-sectional study of individuals with Parkinson's on medications, the DOMINION study, about one in seven, or 14% of patients, had one or more impulse control disorders.

Dan Keller 3:23

So they are mainly related to medication and not the underlying disease?

Mark Groves 3:27

Usually, that's the case. People who are not on medications who have Parkinson's can have some impulse control disorders, like pathological gambling and others, just like the general population. But dopaminergic medications, in particular dopamine agonists, greatly amplify the risk.

Dopamine agonists can increase the risk in one study two to three and a half times. And ropinirole and pramipexole are dopamine agonists that have particular impact on the emotional brain circuits and can be involved in bringing out impulse control disorders. But it's important to remember that not everyone on those medications gets impulse control disorders. There's an interaction between an individual's susceptibility to impulse control disorders, the medications, and life experience.

Risk factors for that individual's susceptibility include younger age of Parkinson's onset, male sex, also a family history of alcohol and drug problems. A personal history of alcohol or drug problems, or certainly a personal history of impulse control problems. Heavy cigarette smoking is also a risk factor. So it's an interaction of the meds and the experience within susceptible individuals.

Dan Keller 4:38

Does physician experience with dopaminergic drugs have an influence on whether these things are more or less likely to occur?

Mark Groves 4:48

Well, certainly it's critical for the prescribing physicians to be aware of these risks. So, usually patients with Parkinson's are best served by seeing a movement disorder specialist who is aware of that and will follow them closely. But conscientiousness of the physician in asking, educating patients and family members about the risk is also critical, and not all movement disorder doctors ask as regularly as others.

Dan Keller 5:14

Does the risk increase at certain times, especially when the medication reaches a peak, when people take medications that go up and down in their blood? Or is this more of a long-term constant disorder?

Mark Groves 5:26

My read of the literature, it's not fully clear. Higher doses definitely add higher risk. The shorter-acting forms that have more peaks and valleys across the day may be higher risk than the longer extended-release forms, but I don't think that's been definitively demonstrated. Pramipexole and ropinirole probably do have more impact than rotigotine, which is another dopamine agonist, because the pramipexole and the ropinirole bind much more tightly to the emotional brain circuit receptors—the dopamine receptors in the non-motor circuits of the emotional brain. And so it depends probably more on the type of medication and the dose than whether it's short or long-acting, but I don't think it's been completely definitively clarified.

Dan Keller 6:09

Should patients starting on one of these drugs be warned about the risk of developing an impulse control disorder, and their caregivers to look out for them?

Mark Groves 6:17

Absolutely. Because, as you can imagine, family members and patients who haven't heard about this might not have any idea that their medications could be related to these behaviors. Plus compulsive sexuality, pathological gambling—these are private activities that people feel ashamed about, and they're not going to ask their doctor about it if they're not inquired specifically about it.

Dan Keller 6:40

How do they affect people's lives?

Mark Groves 6:42

They can be devastating: extreme financial loss, marital strain, even divorce. I can't overstate how devastating they can be. So, it's absolutely critical to catch them early.

We really, really depend often on caregivers to have a better sense of how our patients are doing. As physicians, we can sometimes be fooled by the over-animated patients in the room that don't have any complaints, but we don't really realize that at home they're irritable, they're consumed in behavioral addictions, in these impulse control problems, and they have marital strain. So we really need to get collateral history, and the spouses often are the biggest clue, or partners, because there's a lot of irritability and marital strain.

Dan Keller 7:24

Can they be controlled?

Mark Groves 7:27

Sometimes they can remit completely for many when the medications are reduced, especially the dopamine agonist medications. But you have to reduce that dose pretty slowly and really watch people closely because there's a withdrawal syndrome that can occur. Patients will often call their doctor saying that they're off, but if they were examined by the movement disorder doctor, they actually motorically or physically can be okay.

So, this dopamine agonist withdrawal syndrome, which is almost like a cocaine withdrawal, is very important for the doctors to be aware of. Patients can feel very fatigued, dysphoric, and depressed, anxious, and irritable, and so you have to go slowly. So, reducing the meds is the right treatment, but some patients don't tolerate it.

I think that sometimes there are alternatives to going back up on the medication. Certain mood medications may help, and some patients they crash, and after a few days, they rebound. But if they've been on high doses of dopamine agonists for a long time, the withdrawal syndrome can be very difficult to treat and sometimes intractable. So it's really important to catch these impulse control disorders early.

Dan Keller 8:32

Can medications be added that specifically address the impulse control disorder?

Mark Groves 8:37

We're hoping to have better evidence for that. We really, really need good treatment studies. One well-designed study of Naltrexone showed that there was some hint of benefit, but the study failed to meet its primary outcome. I believe that Naltrexone, which is used for binge drinking and for other repetitive behaviors off-label, may be helpful for some of the milder impulse control disorders where people are over-absorbed in activities or for compulsive drinking.

But some case reports of clozapine, which is an antipsychotic that does not worsen Parkinson's symptoms—and clozapine may have a particularly strong anti-impulsive effect—some of those case reports report that it's helpful, and I've had some patients that seem to benefit from that. But we don't really have enough data, and we need more studies. Others have tried anti-seizure medications like valproate or topiramate, but there are very few case reports. So, the primary mainstay of treatment, absolutely, is a reduction of the dopamine agonist medications.

Dan Keller 9:36

Does it help to have talk therapy along with it, cognitive behavioral therapy, or others?

Mark Groves 9:40

It's a great question. There was at least one very good study of cognitive behavioral therapy that suggested a potential benefit, and support groups may be helpful. But it's important for people to realize that, akin to the contemporary treatment of substance use and addictions, a medical model is critical. Expecting that an individual going to 12-step programs is going to be helpful without looking at the medications and thinking about adjusting the dopaminergic meds and other things is unlikely to be as successful. So those things are probably ancillary for the severe ones, but medication treatments are helpful.

Dan Keller 10:15

What should physicians know about impulse control disorders? I'm sure that probably people with Parkinson's see their general practitioners as well as their movement disorders team.

Mark Groves 10:25

That's right. Physicians really need to know about this possibility. Some of these medications and other similar medications are prescribed for other conditions, but we have to certainly have physicians educate their patients and caregivers.

Getting collateral history is critical, regularly screening, assessing these risk factors that we talked about, treating early, considering partnering with a psychiatrist with either experience in behavioral addictions—an addiction psychiatrist—or maybe a psychiatrist with experience in Parkinson's, if it's very difficult. And the dopamine agonist withdrawal syndrome is critical for the physicians to understand because otherwise they misinterpret the patient's response as a return of physical symptoms, and they just go right back up on the medication. That's something that many doctors don't really realize that is important to know.

Dan Keller 11:12

How about what people with Parkinson's and their caregivers need to know?

Mark Groves 11:16

That these are common, they're not due to character deficits, but they're biologically mediated. It's an interaction between baseline biological susceptibility interacting with these meds that affect the reward circuitry in the brain, and life experiences. So, early identification is really important. And don't be ashamed; talk with your doctor about them.

And patients who recover from impulse control disorders often feel like the problem is solved, but they need to really maintain an empathetic understanding that their spouse—whose awareness was full and their eyes were wide open during the traumatic experiences—often takes much longer to recover. Healing is a process, and so I have often worked with caregivers or partners and had to encourage the patients to realize that it's not just fixed; the recovery takes a while.

Dan Keller 12:07

Should caregivers, spouses be on the lookout for these, actually monitor the patient's behavior? And if they do, this really affects the patient, so they have to sign on. Do they need consent for something that formal to be done?

Mark Groves 12:23

Yeah, certainly. Patient consent is always necessary for us as doctors to speak with others about one of our patients' care. But some physicians could reasonably insist that for particular patients at very high risk—say, those with a heavy history of substance use in their family, a personal substance use history, and young age—some physicians could reasonably insist they'd only prescribe some of the dopamine agonists, such as pramipexole and ropinirole, with a careful risk monitoring plan that incorporates a trusted close individual.

Dan Keller 12:53

Is there anything important to add, or that we've missed?

Mark Groves 12:55

Well, one of the most useful explanatory models that I find fascinating for impulse control disorders is based on our understanding of reward-based learning in the brain. When we experience an unexpected reward, there's a transient release of dopamine in our reward learning center, called the ventral striatum, and that release of dopamine encodes the link between stimulation and reward. At the other extreme, when we expect a reward but we get a negative outcome or a punishment, there's a pause in the dopamine release in the reward learning center.

So it's a delicate balance between the history of the variable dopamine releases and pauses based on our past experiences that influence our goal-directed behavior. And in susceptible Parkinson's patients who are given these dopamine meds that bind to these limbic or emotional brain circuits, there's a shift or a bias such that those susceptible individuals become super-sensitive to rewards due to the boosted dopamine levels, and they can't learn from punishment or negative consequences.

So, if you think of an individual on a dopamine agonist who has a family vulnerability to impulse control disorders going to a casino, the danger is after the patient wins big. Because that dopamine release is so amplified by the medication, no matter how many times they lose, because they can no longer get that pause or that decrease in dopamine when they lose, they just keep getting locked into that behavioral addiction. And it's a real window on the way that goal-directed, reward-based learning occurs in the brain.

Dan Keller 14:32

So they're essentially getting a reward exogenously from administered medication, feeling a reward which would normally occur in the brain if you did something that deserved a reward, but here they don't have that stimulus.

Mark Groves 14:47

Well, the reward still occurs externally, but the external event is like a hit of crack cocaine. So, you know, they win big, but instead of a bit of a rise, there's a bigger rise, and they can't learn from their mistakes. So they get locked in more and more, so there's that bias towards reward learning.

Dan Keller 15:07

What's the take-home message to families and people with Parkinson's?

Mark Groves 15:11

That these are common. We all need to look for them. We need to educate doctors, patients, and caregivers about them. They're not due to character deficits; they're biologically based behavioral disorders. They can be treatable, but close follow-up is critical.

The dopamine agonist withdrawal syndrome is very common in individuals as they go down on the agonists, and the patient, him or herself, will often tell the doctor, "I'm off, I'm off, my Parkinson's is worse." Don't take those inputs as physicians by phone; examine the patient. Often, the clue is that they're sleeping for hours, they're fatigued, they're irritable, they're really in a bad mood. Sometimes they come out of that, but catching them early is critical because if patients are on these medications with impulse control disorders for a long period of time, it's much, much harder to treat them.

Dan Keller 16:00

Good, very good. Thank you. I appreciate it.

For more on impulse control behaviors and disorders, search "Impulse Control" on our website at parkinson.org. There, you'll find an article titled New Study Examines Impulse Control, REM Sleep, and Dopamine. It describes in more detail the study that Dr. Groves alluded to, and also has links to other resources on impulsivity and compulsive behavior, including a fact sheet on impulse control.

In the fact sheet are suggestions for things you can do if you suspect you're experiencing impulse control issues. One suggestion is to keep a drug diary and to record changes in your mood, behavior, and physical responses, and of course to discuss them with your doctor, family, a support group member, or a clergy person. These disorders usually subside with medication adjustments if they did not exist prior to using the medication. You can also visit parkinson.org/library for more information on impulse control disorders.

As always, our PD information specialists are a great resource to answer questions and provide information in English or Spanish about this topic or anything else having to do with Parkinson's. You can reach them at 1-800-4PD-INFO.

The Parkinson's Foundation is thrilled to announce the expansion of our clinical study, PD GENEration: Mapping the Future of Parkinson's Disease. When you participate, you can help scientists in their journey to advance understanding of PD, leading to new, more effective PD therapies. If you have a confirmed diagnosis of Parkinson's disease, visit parkinson.org/signup to learn more and enroll.

If you have questions or want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. To receive news and updates about future events and resources, you can opt into our email list at the bottom of our website's home page. And 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.

Dr. Mark Groves is psychiatrist specializing in the psychiatric management of Parkinson’s disease and other movement disorders and is an Assistant Clinical Professor of Psychiatry and Neurology at the Icahn School of Medicine at Mount Sinai in New York City. For the last 17 years, he has been the consulting psychiatrist to the Movement Disorder Division and Parkinson’s Foundation Center of Excellence at Mount Sinai Beth Israel. Dr. Groves’s clinical interest in Parkinson’s disease was initially sparked in his early college years when he had 2 Parkinson’s Disease Foundation Summer research fellowships and worked with clinical researchers and patients at Columbia University.

A graduate of Brown University, Dr. Groves attended medical school at the University of California, San Francisco and completed his residency in Psychiatry and a fellowship in Consultation-Liaison Psychiatry at Columbia University/New York State Psychiatric Institute. He is board certified in Psychiatry, with subspecialty certifications in Psychosomatic Medicine and Neuropsychiatry/Behavioral Neurology.

Dr. Groves has published a number of papers and book chapters on Psychological Reactions to Illness, and clinical aspects of Parkinson’s disease and Huntington’s disease, but his primary focus is in the direct clinical work with patients, caregivers and multidisciplinary colleagues treating the psychological and non-motor symptoms of patients with movement disorders with psychotherapy, medications and other treatments. He continues to learn from the privileged opportunity of immersing himself in the inner experiences of his patients and partnering in care with other disciplines.

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.

We often think of support groups and services for people with Parkinson's, and it's true that they can be valuable in helping to cope with the disease and to improve quality of life, but what about the care partners who provide support sometimes 24 hours a day? They shoulder many tasks of daily care, as well as the usual activities of daily life, such as transport, food shopping, managing finances, and more. So they too need support services. Fortunately, the Parkinson's Foundation recognizes caregivers' needs and provides a variety of services and resources.

At a meeting in Boston of US and International Parkinson's Foundation Centers of Excellence directors and staff, I spoke with Cara Iyengar, a social worker who is the coordinator of the Center of Excellence at the University of Iowa in Iowa City. She told me about some of the foundation's resources that she shares with care partners, what she has found to be most helpful to them, and how else she supports them in her state, where many are in rural areas. She started by telling me her approach to finding out about the care partner. Today's podcast is sponsored by Kyowa Kirin.

Cara Iyengar 2:10 I make it a point when I'm meeting with patients to ask about their caregivers, so that's part of my regular assessment. It kind of depends on the person, but I always make sure that they're aware of the online resources, particularly the new caregiver course, which a lot of people have found really valuable, and then also we have that Caring and Coping booklet, which is really great. So I make sure to give that to people even early on, just because I think that it's nice to have on hand when you need it. It's always better to plan ahead rather than to be in a crisis. And also the helpline, so that they know they can always reach out to me, but they also have that helpline as well.

Dan Keller 2:51 You're in Iowa, which presents certain unique situations and problems. What do you find about Iowa that might be different from, say, Boston or New York City?

Cara Iyengar 3:02 That's a great question. So, Iowa's a rural state. We have about 3 million people, which is, I think, smaller than some cities, so that is certainly a challenge. I do hear from some of the other centers that they have these robust in-person programs in these larger cities, and while we do have some programming, we're trying to reach patients who sometimes travel three, four, five, six hours to reach us, and so we have to be a little bit more creative in that sense.

The pandemic was helpful in a way, because it really pushed us to up our virtual offerings, but really getting people to us and getting people to connect with each other, given the distances, and given some of these rural communities that don't always have a support group within a reasonable distance, is certainly a challenge.

Dan Keller 3:49 Can you make a support group by teleconference or Zoom or something help facilitate that?

Cara Iyengar 3:54 Yes, so there are... when we became a Center of Excellence, there was actually already a very robust support group in our area, and so rather than try to start our own competing support group, we've really partnered with them. With the pandemic, they went from being this local support group—in-person local people—to having those people, but also going virtual and having people attend from much further away, who didn't always have an option closer to home, even during pre-pandemic times, to meet. So yes, definitely those virtual groups are very helpful, but of course, there are problems with those as well.

Dan Keller 4:36 Like what?

Cara Iyengar 4:37 Well, not everybody has high-speed internet access, and then, of course, there's that Zoom fatigue that everyone's having, so I think it's just sort of one of those things where we're learning all the time and trying to work with our patients and our caregivers to figure out what they need and how best to get that to them.

Dan Keller 4:54 Given the geography, and that hopefully the pandemic won't last forever, do you think this kind of support group will outlive the pandemic?

Cara Iyengar 5:03 I hope so. There is something to be said for meeting in person, and I am seeing around the state and the areas we serve that they are starting to meet in person again. But I would really like to see some of these virtual components continue. I think it's just such a great way to meet people, not only who are geographically isolated, but you know, with Parkinson's, sometimes it is hard to get out of the house, and as a caregiver, particularly, you don't always have someone to stay with your loved one. So these virtual sessions, these virtual groups, really provide that opportunity for them.

Dan Keller 5:33 What are some of the ways that you support care partners?

Cara Iyengar 5:38 I kind of look at it three ways, so I want to provide resources, I want to connect them to each other, and I want to be there to provide one-on-one support as well. So resources would be all the wonderful Parkinson's Foundation resources, as well as local resources. There are different organizations around our state who provide support to caregivers, not necessarily Parkinson's specific, but to caregivers in general, so I try to make sure that we're partnering with them, providing that information.

And then connecting them to each other, so that can involve letting them know about support groups, but also we've had some innovative ideas come from patients themselves, caregivers themselves. I have a caregiver who is working to start kind of a mutual aid telephone tree, so he's developing a system where caregivers can get on a phone list and call each other directly on demand, rather than trying to make time for a specific meeting, where that doesn't always work from a caregiving perspective. So, really working with caregivers and patients, because they know what they need, and how can we support them with their ideas?

And then also just being available, you know? I have a lot of caregivers who just call me out of the blue. They don't have a specific question, they're overwhelmed, they just need someone to talk to, and I'm happy to do that with them, and just listen and provide support information if they need it. A lot of times, just letting them know they're doing a good job, and that they're important, and that their needs matter too.

Dan Keller 7:04 This phone list, is it specific? Do people list like, "I know about finances," or "I know about this," or it's just you reach out and hope they know what they're talking about?

Cara Iyengar 7:14 Yeah, so I think he's, you know, still developing it, but I think his idea is just that no one understands what caregiving is like but a caregiver, and so just having someone that you can call who understands venting or getting that support—not even necessarily specific information, but just knowing there's someone who knows what you're going through.

Dan Keller 7:35 What kind of programs or services do you want to see develop that aren't there now in Iowa? And I assume that would apply to other rural communities.

Cara Iyengar 7:47 So, there is a lot. We're a relatively new center, so we have a lot of room to grow. Coming to this meeting today, I'm getting a lot of good ideas, but I would like to find a way to increase the number of people participating who are in remote areas. I'd also like to see us focus more on some of our underserved populations, so we have a very large Hispanic population in Iowa. So, I'd like to figure out some ways to reach that population in particular, and then also some of our underserved younger patients. Again, because we are a small state, we're very spread out. It's hard to get our younger-onset patients connected, and so just kind of looking at some different ways to do that.

Dan Keller 8:31 Do you get feedback from caregivers? Have they told you what are the most important things or most helpful things they've found from you?

Cara Iyengar 8:39 Yeah, I certainly do. That's one of the wonderful things about making myself available and having my phone number out there, because I do get calls from caregivers with the different things they're struggling with, with the different things they'd like to see. It does seem that Parkinson's patients and their caregivers, in particular, tend to be very engaged, and they want to be involved, and they want to help make something happen, so pretty regularly, you know.

I'll have a caregiver come and say, "We'd love to go to a support group, but we don't have one," and the Parkinson's Foundation has excellent resources for starting one, so I'm able to provide them that information and kind of help support them if that's something they're interested in doing.

Dan Keller 9:19 I think they put out a whole book they can download or order in hard copy.

Cara Iyengar 9:25 Yeah, yep, they do. And they also have meetings, virtual meetings, and things to support them as well. It's really about providing that support, but also empowering people to kind of be part of building that support themselves.

Dan Keller 9:38 Does it have to be restricted to your own local geographic area? It seems with Zoom, you could be part of a support group in Washington state or San Francisco, or whatever.

Cara Iyengar 9:47 Yes, absolutely. So I am part of a quarterly call with Parkinson's social workers, and during the pandemic, one of the wonderful things is all of these niche support groups were coming out—so Mandarin support groups, LGBTQ support groups, people with parents with Parkinson's, those sort of things—and because of Zoom, they're open. So while there may not be enough LGBTQ people with Parkinson's in a small rural town with 1,000 people who want to be in a support group to have an in-person support group, certainly in the whole country there is, and allowing people to connect that way has been one of the few nice things to come out of the pandemic.

Dan Keller 10:26 Is there a directory of specialized support groups, specialized communities that form a support group?

Cara Iyengar 10:32 You know, I am not aware of one, but I think that that would be something that would be really nice to have.

Dan Keller 10:38 Maybe the Parkinson's Foundation should start something like that, just a directory. Do you find that support groups are very welcoming, or are they a little bit, I don't know, provincial in their thinking? Who's this person from this other area?

Cara Iyengar 10:53 I think it depends, and I think that welcoming also depends on the person who's attending. So I do hear a lot of times from my younger-onset people that they don't find the local support groups welcoming, not because the people are unwelcoming, but because they don't look like them, and so I think that that issue of diversity in all sorts of different ways is something that needs to be overcome. But as far as someone from another state participating in a Zoom call with people mostly in a different state from them, I think those tend to work out pretty well. And in fact, our local group would routinely have out-of-state participants, which was wonderful.

Dan Keller 11:35 I suppose different people would have different needs. If you're a young-onset Parkinson's patient, you might have a lot of concerns about parenting, whereas for the grandparents in the group, that's out of the way already.

Cara Iyengar 11:47 Certainly, yes, and that's another barrier as well. So these are big questions to be addressed and to work with our patients and our caregivers to figure out what would be most helpful to them, and how can we work together to provide that?

Dan Keller 12:02 If you were to encapsulate a nutshell message to people about support and resources, what would you say?

Cara Iyengar 12:10 So, I would say that Parkinson's is not the flu; it is a long-term disease. And so I think that a lot of times with caregivers, there's this sense of wanting to really throw yourself into it and do everything you can to support your loved one, and that's admirable, but when you're looking at years or decades of this, you really have to also consider your own needs in the long term and your own need for support.

I really encourage people to think about that, even from diagnosis. Not only do I want to get the patient the information they need, not only do I want to get them connected to a psychotherapist if they want one, or a support group, I also want to talk to the caregiver about, "Who is it you can talk to about this?" because this disease affects you too, and you're going to need support as well. And so, what type of support would you find most helpful?

Dan Keller 13:08 Have we missed anything interesting or important to add?

Cara Iyengar 13:12 I think we really kind of covered it. I would love to see caregivers really put themselves in the focus sometimes and make sure that they're cared for as well.

Dan Keller 13:21 Great. I think maybe now hearing you, they might. Thanks.

On our website at parkinson.org you can find a digital, print, and audiobook called Caring and Coping: A Care Partner's Guide to Parkinson's Disease, as well as Caring and Coping worksheets. Just go to the website, click on "Resources and Support" at the top, go to the PD Library, and search for Caring and Coping.

Also in the PD Library is a booklet called A Guide for Support Group Leaders, which can take you through the process of starting, facilitating, and maintaining a support group, including information on care partner-only groups. The guide can also serve as a reference for existing groups looking to improve or adjust how they work. In the PD Library, search for "support groups," and you'll see a link to the guide. You may also find a couple of past podcasts helpful. One is called The Care Partner Experience, and the other is Caring for Loved Ones with Parkinson's Disease.

Every November, the Parkinson's Foundation joins with organizations across the country to honor care partners for National Family Caregivers Month. Care partners continue to adapt to new circumstances and work hard to keep their loved ones healthy and safe. This year, we aim to empower care partners with resources that will help them and their loved ones with Parkinson's disease live better lives. Our theme for 2022 National Family Caregivers Month is hashtag #CarePartnersCan. To learn more about how you can get involved this National Family Caregivers Month, visit parkinson.org/caregiver.

As always, our helpline information specialists are available to answer questions in English or Spanish about today's topic, or anything else having to do with Parkinson's, including finding your way around our newly redesigned website. 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. Till next time, 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. And thanks again to Kyowa Kirin for sponsoring today's podcast. Thank you for listening.

Cara Iyengar, MSW, LISW, is the social worker and Center of Excellence Coordinator for the University of Iowa Health Care Parkinson's Foundation Center of Excellence. She is a graduate of the University of Iowa and the University of Northern Iowa and has over a decade of social work experience. Cara has worked in a variety of healthcare and community settings but has mostly focused on working with older adults and caregivers. In her current role she assists patients and families navigate their Parkinson's and related diagnoses and helps them access resources and information. 

Cara is the current co-champion for palliative care at her COE and also serves on the COE Clinician Advisory Council on Palliative Care.  Since working in her current role, Cara has been involved with a variety of projects with the Parkinson's Foundation, including Patients Advisors in Research (PAIR), Hispanic Outreach Leadership Program, and has served a peer reviewer for the Parkinson's Foundation Community Grants.

Dan Keller 0:08 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.

Most people don't know the breadth and scope of what social workers do. They are highly trained professionals who can assess needs, find and refer people to appropriate services, and help guide them over the course of a disease. Social worker Lance Wilson of Jefferson Health in Philadelphia, a Parkinson's Foundation Center of Excellence, emphasizes that for someone with Parkinson's disease, it's important to create a support structure beginning at the time of diagnosis. He describes himself as something like the Yellow Pages or as a chameleon—the Yellow Pages in having a wide variety of resources to offer, and as a chameleon in that he adapts to the environment of the person's needs from the time of diagnosis onward.

When somebody gets a diagnosis of Parkinson's disease, it's natural to want to know what lies ahead, which is probably unpredictable in any one case, since each person's course of Parkinson's can be different. What are some ways that they can cope with the uncertainty of what might lie ahead? Essentially, the fear of the future.

Lance Wilson 1:57 Absolutely, I think that's an awesome question, because it does, in fact, look different for everybody. It really depends on, you know, kind of being present there with the individual first and their care partners to figure out what is the best route for them. For some people, they want to be hit with so much information, and so they can learn at their own pace learning. Some people just, you know, just want to shut out the world and kind of grieve that initial diagnosis, but that coping piece is where the supports come in. So, those care partners, those social workers, and the other support staff at the clinics are important because there's a devastation that happens, and we are ready to act when that person gets to a place, or help them to kind of shepherd them into a place, where they're now okay with navigating the disease in a more healthy way, or more appropriate, or optimizing what that looks like for them.

Dan Keller 2:53 Do some people tend to catastrophize thinking of the worst that can happen, and how do you put their minds at ease?

Lance Wilson 3:00 Absolutely, so I think the initial thing that people, once they get the diagnosis, they start thinking about end of life, "Are my affairs in order?", hospice, and a lot of pictures that media has put out. You know, they might think of Muhammad Ali or Michael J. Fox, and I think that the catastrophizing is, of course, going to happen, but it's really about giving people the space to have those things, and then kind of bringing them back. It's almost like an anxiety response. So, how can I now ground you? Because these are great concerns to have, but at the end of the day, we still need to bring you back to what your living your best life looks like, and you can't do that if you're constantly worrying about your demise.

Dan Keller 3:46 Is part of it telling them that the worst doesn't happen to very many people?

Lance Wilson 3:52 Keeping it grounded. We know what this disease typically looks like, progression-wise, and I think that it's going to look different for you, and your care is important, or where you're going is important, because the way that it's going to manifest for you might not be the same way that you've seen your neighbor or your church member, etc., kind of navigate the disease. It's going to look different for you, or it might not, but being okay with that, and helping make sure people are tied into the resources that are necessary, are important.

Dan Keller 4:23 How do support groups fit into that? If someone goes there and sees the worst or sees the best, they get a different impression.

Lance Wilson 4:31 Absolutely, so support groups are very tricky. So you have individuals who will see the person who has the tremor or the rigidity or the sialorrhea, and think automatically, "That's going to be me." So it really turns a lot of people off from going to support groups. So a lot of my social work colleagues and other individual institutions have had to make groups that are specific in who they're talking to—so whether that be a deep brain stimulation group or a young early-onset group, those are good because it allows people to be with their peers. But I also think that, depending on the person, it can be redeeming because I can now get advice from someone who's been navigating this disease 20 years longer than I have. So support groups can be kind of worked out if they keep on track with what the person actually needs.

Dan Keller 5:23 It's such a multifaceted disease. So, is there value in going to a specialized center—a Center of Excellence or a movement disorder center—where they can offer many of the things that you would need? You wouldn't need everything, but they've got everything that you might need.

Lance Wilson 5:40 Yes, I think that it is worth going to a comprehensive center—a center that has accessibility to all of the other disciplines that we sometimes see as operating in silos. So, have the physical therapist, or a speech therapist, or a mental health clinician. All of these things that we would typically refer out to the community, being at one center allows for a full evaluation to develop a baseline. And I always tell people that when we're looking at how you navigate this disease, a care map or a care plan is going to be important, and the best way to do that is to develop a baseline of where you are in all of these spaces.

Dan Keller 6:19 Where does social work fit in?

Lance Wilson 6:21 It fits in everywhere, and the reason I say that is because I constantly tell people to imagine having a broken vase and gluing it back together. We are the glue that is in all those nooks and crannies, and all the spots that you thought would never be able to be held together again. We are the individual who probably knows everybody's job enough that we can explain it, but not necessarily do it, and if we don't, we know where to refer you or who to send you to in order to get that information. So we are kind of like the shadow people, almost, because people don't always realize that they're leaning on us for support, because it comes off so typically eloquently that they're just like, "Oh, I didn't even know that was a skill set or a job." They just show up and, you know, they get the support that they need.

Dan Keller 7:10 I've always been impressed with all the resources social workers can draw on, knowing what they are. It's like a librarian for medicine, you know, they know where to look and how to find stuff.

Lance Wilson 7:22 I always joke and say that we are the yellow pages of whatever discipline or whatever institution we've infiltrated as social workers, whether it be the medical model or another one.

Dan Keller 7:33 Mood changes can accompany Parkinson's disease. So, what are some strategies for coping with changes in emotion or mood?

Lance Wilson 7:42 So I think the thing that I call out first is allowing people to feel what they need to feel. It's a little bit more difficult when you have a care partner or individual that's assisting with care that might not be used to these types of mood swings, if you want to call them that, or this dysregulation in emotion, and typically I tell individuals you need to feel what you need to feel, because you're feeling it for a reason. Now we can get to the core of why you feel that way, you know, once the time has started to pass, but ultimately letting people feel what they need to feel without there being like this self-deprecating behavior or self-deprecating thoughts that go along with that, and allowing their care partners to know that this is not personal towards you. There's a lot of other frustrations that come along with this disease and navigating what could be soon to come, or not so soon to come. And creating space is one of the biggest phrases that I use all the time. You've got to sometimes make space for things that you didn't necessarily anticipate were going to happen, including emotional mood swings.

Dan Keller 8:46 What about sharing one's diagnosis with friends or employers? Is it a good idea, or is it dependent on things?

Lance Wilson 8:54 I think it's dependent on things. So, typically I do a lot of work with helping people navigate from employment to disability or retirement, etc. So, the first thing I usually tell people is that you don't have to disclose. You are there to do a job, and if you feel comfortable disclosing, or you feel like you have relationships in which you feel like disclosing would be appropriate, I'm going to support whatever decision you make.

But the thing is that I just never want to see someone... though we know it's illegal to fire someone or lay off someone due to disability, the reality is you are employed, which means that there's a job that needs to be done, and if you are not able to perform said job due to other issues or other complications from your disease, then we probably need to talk about activating some of those benefits, like FMLA, short-term disability, long-term disability, and talking about what the game plan is. Do you think that you just need some time off, or an altered work schedule, or maybe a lighter work schedule, or do we need to start talking about pulling out of work completely?

But that whole letting people in kind of idea, whether it be friends... some people don't even tell their family members, there are people that don't tell their children about their diagnosis. I always tell people the biggest thing you want to do is create your support. You want to create support. This is not a disease that you want to navigate alone, and it's not one you have to navigate alone if you don't want to.

Dan Keller 10:24 But if someone does disclose to their employer and they are still able to do the job, there are legal protections for them.

Lance Wilson 10:32 There are legal protections, but the way that I put it is that no job will ever fire someone for having Parkinson's. It will be due to an inability to do a job that you were hired to do. So though it might not be explicit about why you might be losing your job—and I'm not going to say that all employers do this, because it is very much other people's interpretation of the disease, how they receive that news, what does that mean for their productivity. There's always a bottom line, and it usually is affiliated with money, but it's something that I leave up to the decision of the individual if they feel comfortable doing that or not.

Dan Keller 11:10 Do you have any suggestions or insights on how a person with PD can cope with others' reactions to their diagnosis? Do people look at them differently?

Lance Wilson 11:21 They do, and it's sad, but it's a hard truth. There's typically this coddling feature that usually comes over individuals when they find out someone has been diagnosed. It puts them in a really weird space, because there's almost like a fighting for autonomy that takes place. It's like, "I'm still me, I am just navigating this disease," and then it's just like that individual has already tempered their own emotions and how they feel about what this disease is going to look like for them, and now they have to do it again with someone else, which is of course why someone would be reluctant to even have this conversation with someone.

But ultimately when they get those reactions, I tell them to take the power back. This is you sharing. It's similar to when we're talking about an individual who has to come out, or someone has to come out with a diagnosis, or come out with something that's taking place with them in their lives. And I tell them—and I really try to have them reframe it in a way—you're letting people in, which means that this is your domain. You should never feel unsafe in your domain or threatened in your domain. So, sometimes it might be hard, but you have to take back your power when people try to put you in a box in which you don't want to be in.

Dan Keller 12:34 You work at a well-regarded center with many facilities and many services available. What's the situation with underserved communities? Are they particularly underserved in this regard?

Lance Wilson 12:46 So, yes, I think that we acknowledge and we work towards, and I'm part of many initiatives—whether it be DEI specific or targeting areas and individuals that are historically marginalized and underserved—I think it's even more so when we talk about specialty care. So, when you get into a specialist, some of these people are lucky to make it to a primary care doctor, let alone a neurologist or a movement disorder specialist. So, there's definitely this ongoing fight for making sure that there's equitable care for all individuals, because we all deserve to live our healthiest and most productive life.

And sometimes life gets in the way of people taking care of their own needs, and they have to make a choice about going to work or going to the doctor, and that is not something I neglect. And then also dealing with access to institutions such as mine or other people's. How does that work when you have a population that is probably or typically under the poverty guidelines? So, what does that look like when you're dealing with state insurance? Do we have centers that can take all of these insurances?

If that's one project I've been working on for our local centers in Philadelphia and the surrounding regions, it is creating an insurance list. So if my institution doesn't take it, oh, we can refer you to this one; this one doesn't take it, and I don't take it, but this institution over here does. So kind of taking out the guesswork is really critical for making sure these underserved populations still get the care that they deserve.

Dan Keller 14:22 So in a nutshell, what can people expect from finding a social worker, and how do they go about it?

Lance Wilson 14:31 Most people don't even know that we exist until they need us. I always joke and say that, like with a high school arts program, we're like the most expendable sometimes, but then once you see that we're here, it's really great to have us. So I typically tell people when they call me, sometimes I have to just do a biopsychosocial assessment on them because they don't know what they were calling me for.

A lot of times the physicians, or our nurse practitioner, or nurse, or genetic counselor, etc., will make a referral to me based off of something they have experienced with that individual or their care partner. But by the time they get to me, either it's a referral basis, which means I'm calling you about something specific and if we uncover something else, that's fine, but if it's not and you're not really sure—and this has come up where you don't know what a social worker can do for you—sometimes it's just to be another layer of support in the office. Maybe it's just having a contact in the office that is not the physician or the nurse, or you know, so-and-so had a really bad night last night, and I just need to decompress with somebody.

So, whether it be support, whether it be actual resources and something tangible, whether it be ordering equipment or navigating employment, the list goes on and on. I usually tell people I don't know what I can do for you until you know what you need, so sometimes there's also that sitting and acknowledging that "I need something," and that's not something that person was used to saying. So we show up in many capacities, and the great and scary thing is that we are chameleons. We adapt to the needs of our individual. I can talk to one person about getting non-skilled home care that's not covered by insurance, and what that looks like and what that process is, or I can talk to somebody who is a young onset person that is trying to figure out how to navigate employment. It all looks different depending on what the person's needs are.

Dan Keller 16:26 So, if they come to you for one thing, can you do some probing to see if there's other things that they need?

Lance Wilson 16:31 Absolutely, and I don't know a good social worker that doesn't know how to probe, and teasing out the things that people don't say is just as important as the things that they think they wanted, and it's come up all the time. An individual will call me about one thing, and now I have a list of 10 things that I probably could help them process, break down, give them resources, and kind of point them in the right direction for.

Dan Keller 16:55 Anything we've missed or is important to add?

Lance Wilson 16:59 I think that people have to get over their innate reactions of what social workers are. I literally had someone say this to me the other day: "All my children are grown, what do I need a social worker for?" So, there's this myth, or this idea, that we only work in child welfare, we only work over children and youth services, and then when we get consulted, there's the assumption that something bad is happening. So I think that's the biggest piece—is that social workers are just here to enhance the journey. We are here as a support, we are here as a resource.

I joke about being a Yellow Pages, but we really are, especially when you've been in the social work game for a little bit. You kind of pick up some tips and tricks that you wish that you could have given someone else, but just like practicing medicine, you pick up things as you go. But I think that everyone should at least check in with their social worker if they have access to one, and if they don't, there are still places that they can find them—whether it be other doctors' offices, acute inpatient hospitals, or some insurance company plans have social workers or care coordination members that can help them in the community, whether it be ordering equipment or other resources that they might be able to link them to. But overall, I'm going to sound biased, because I am: social workers are amazing, and I think that people don't really know what we're able to do until they need us. It would be nice to interact with people on a preliminary, kind of preventative level, as opposed to a tertiary or emergent or crisis type of situation.

Dan Keller 18:31 Great, thank you.

Dan Keller 18:34 As Lance mentioned, it's good to find treatment at a Parkinson's center that can provide all needed services. You can find listings of Parkinson's Foundation Centers of Excellence and comprehensive care centers on our website at parkinson.org. Click on "Living with Parkinson's," and then "Finding Care."

There are also podcast episodes called Team Care for PD: Why It's Important, and The Healing Power of Social Work, which can be further enlightening about the value of speaking with a social worker, even if there's not a Center of Excellence or comprehensive care center near you. Most large medical centers can provide these services through movement disorder centers.

For social work professionals who practice in the Parkinson's area, our website has resources, including educational materials for them, as well as publications, fact sheets, and podcast episodes to share with colleagues and people with Parkinson's. To find these materials, go to parkinson.org, click on "Resources and Support," then click "For Professionals" and scroll down to "Social Workers."

As always, our helpline information specialists are available to answer questions in English or Spanish about today's topic, or anything else having to do with Parkinson's. 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. Till next time, 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.

Lance M. Wilson, MSS, LSW, C-SWHC, ASW-G is a Neuroscience Medical Social Worker who works with patients, families, and care partners impacted by the diagnoses of movement disorders, such as Parkinson's Disease.

Lance is a Licensed Social Worker (LSW) in the State of Pennsylvania. Lance holds a C-SWHC (Certified Social Worker in Health Care) and ASW-G (Advanced Social Worker in Gerontology) both specialty certifications from the National Association of Social Workers.

Lance holds a bachelor’s degree in science (BS) in Human Services from Lincoln University of PA and a master’s degree in Social Service (MSS) in Clinical Social Work from Bryn Mawr College’s Graduate School of Social Work and Social Research. Currently, Lance is pursuing his clinical supervision for his licensure in clinical social work (LCSW) and is currently a PhD student of Social Work at Widener University’s College of Health & Human Services.

Elsa Baena, PhD, es neuropsicóloga en el departamento de neuropsicología clínica y en la unidad de neurorrehabilitación intrahospitalaria del Barrow Neurological Institute.

La experiencia de la Dra. Baena incluye la evaluación neuropsicológica y rehabilitación de individuos con una variedad de diagnósticos neurológicos, incluyendo condiciones neurodegenerativas, lesiones cerebrales adquiridas, enfermedades cardiovasculares y tumores cerebrales. También realiza evaluaciones pre y postquirúrgicas para la estimulación cerebral profunda (ECP o DBS, por sus siglas en inglés) y la cirugía de epilepsia. Domina el inglés y el español y es miembro de la Hispanic Neuropsychological Society, la National Latinx Psychological Association, la American Academy of Clinical Neuropsychology, la International Neuropsychological Society y la National Academy of Neuropsychology.