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.

From listening to this podcast series, perusing the Parkinson's Foundation website, and perhaps participating in foundation programs, people may have insights into some aspects of its functions, initiatives, staff roles, volunteer opportunities, and outreach efforts, but to give a broader and deeper view into the organization, I spoke with its president and CEO, John Lehr. He described the top three areas that the Parkinson's Foundation supports, its sources of funding, its accomplishments under his leadership, and its goals for the future. In our conversation, he emphasized the vital role of the Parkinson's community in its functioning and in shaping its future directions.

Welcome, John. Before we get to it, why don't you tell me when and why you joined the Parkinson's Foundation?

John Lehr 1:39 So I joined the Parkinson's Foundation in January 2017. I was recruited to the position following the merger of two legacy organizations, one based in Miami, one based in New York. These are two organizations that were coincidentally both founded in 1957 and likely competed with each other only in the last 10 or 15 years of their coexistence, more in the internet age than otherwise, and then they realized that for these two organizations to be out there on their own was really inefficient, and that it would be much better to bring the two organizations together. They had a lot of similar programs, but different programs, and so it was a happy merger. I was brought in to make sure that the merger was successful, and that the unified organization proceeded from there, and did better every year than it did the year before, and expanded mission programs that matter to people with Parkinson's.

Dan Keller 2:32 Why don't you tell me the top three areas that the foundation supports?

John Lehr 2:37 We have what we call our three mission pillars: one is in research, the other is in care, and third is in patient education and care partner education. And so our research pillar is really focused on investing in the underlying causes and the basic biology of Parkinson's disease. So, Parkinson's is a very complex neurodegenerative disorder that affects lots of areas of the body, but most notably the brain, and there's still a lot of unknowns in Parkinson's—why it's caused, how it progresses, the different mechanisms biologically that are involved. So the foundation has been investing a lot to understand those underlying causes.

In basic biology, we also invest in clinical research to examine different areas of focus, and we invest in patient outcomes. So, we have the largest outcome study in the Parkinson's world, our Parkinson's Outcomes Project, which has been collecting longitudinal data on people living with Parkinson's for the last decade plus.

Dan Keller 3:35 All those areas sound like they require sufficient funding. So, what's the source of the funds?

John Lehr 3:40 So, the vast majority of the funds that the Parkinson's Foundation gets are from individual donors making small donations to large donations. So yeah, it does require a good deal of investment, but we believe that the best way forward for new and better therapies, and for ultimately a cure, is going to come through our research.

But we also invest highly in care. We want to make sure that standards of care are consistent across all settings, and that people living with Parkinson's disease can get the very best care that's available today. So, we have a global care network, which consists of 47 Centers of Excellence around the world, but mostly here in the United States and in Canada, and those centers are really evaluating different approaches to care, and through that we raise the standards, and we disseminate those to providers all across the country.

And the last thing that we do, just from a mission perspective, is patient education and care partner education. Getting a diagnosis, or thinking you may have a diagnosis of Parkinson's, can be really daunting, and so the foundation has, through so many different, you know, media, including our website parkinson.org, digital materials, print materials, our helpline, 1-800-4PD-INFO, that provide people living with Parkinson's and their care partners with a wealth of information and resources, so that they can navigate a diagnosis of Parkinson's to the best of their ability.

Dan Keller 5:01 Does the foundation accept pharmaceutical or device manufacturer funding? And if you do, is there some sort of firewall, so there's not undue influence on programs? Yeah.

John Lehr 5:10 So pharma and other industry support comes to the foundation as sponsorships and as educational programming. There are firewalls well established now with pharma; they have to give for certain things, not for other things, and so we do a good job of making sure that our pharma partners are doing things that benefit people with Parkinson's, but aren't necessarily out there selling to people with Parkinson's, you know, that's something they do outside of the Parkinson's Foundation relationship, and we very much appreciate their support.

Dan Keller 5:43 The Parkinson's Foundation gets a very good rating from Charity Navigator, which is an evaluator of nonprofits. Do you feel you're running a lean operation in terms of staffing and expenditures?

John Lehr 5:58 Very much so. Before the merger, we had a 76% mission ratio, which meant 76 cents on every dollar went toward mission programs. Last year we took that up to 87 cents on the dollar. We are very much focused on getting the most out of every dollar that is raised. We understand that comes from public donations and private donations to the foundation, and we want to make sure that we're using that money most wisely. So we spend a lot of time making sure that it goes directly to mission.

But you do have to run an organization, you have to have fundraising staff, you have to have administrative, so we do have those, but we keep them to the lowest level possible. I would say we're a full-time staff of 148; we could probably use a few more staff, just because we've got a lot of work to do and we want to continue the growth trajectory that we're on.

Dan Keller 6:46 What do you think are some of the bigger accomplishments that the foundation has achieved under your leadership?

John Lehr 6:52 So I think I'm very proud of the fact that we put out information and materials and resources to people that are incredibly meaningful. One statistic I'll share is that in a one-year period of time, the number of visits to our website went from 4 million to 5.9 million, essentially a 2 million increase in web traffic. What that means to me is that people are going to our website because it's a trusted website, it's got good and useful information, and they're coming back and back and back because we're being helpful to them, so that's incredibly important to me.

We've expanded our helpline hours, so that I think a lot more people around the country and around the world can call in and get advice and information and resources from a human being on the other end of that line. So that's something I'm really proud of. I'm proud that we've expanded our global network. We've added a number of sites, so we're in more communities than we've ever been before.

We've greatly increased the amount of money we put out into the community through our community grants program. So, when I came on board, we were doing about $700,000 worth of grants on an annual basis, and we were well over $2 million last year. So, that's a significant reinvestment in local communities that are working in Parkinson's.

The last thing I think I'm most proud of is our PD GENEration initiative. This is something that we developed from scratch, so most people don't realize that there is a genetic component to Parkinson's. About 15% of individuals will have a diagnosis of Parkinson's that's related to their genetics, but what's happening is that there are a lot of potential therapies out there that are targeting those genetic mutations, but most people don't know whether they have those. So our job has been to recruit and identify people, test them, provide them with free genetic counseling, so that when we're ready to develop clinical trials, we'll have the patients we need to enroll in clinical trials, which I think is a really important advance in the Parkinson's space.

Dan Keller 8:45 You've also expanded the Center of Excellence network.

John Lehr 8:49 Yeah, we have. So our goal is to get to 60 Centers of Excellence. So we're at 47 now. We add another six within the next couple of months, but we've also added another tier, which is what we call our Comprehensive Care Centers. So these are centers out in the community that are caring for a lot of patients, hundreds of people with Parkinson's each year. They may not necessarily be doing clinical research, but they're really first-rate care centers, and we believe we can learn from them. And we didn't want to exclude them from a Center of Excellence designation because they were smaller. So, we've come up with a whole new designation of Comprehensive Care Center, and we're rolling that out to five new sites in the next couple of months, as well.

Dan Keller 9:27 There's also the initiative for newly diagnosed people with Parkinson's.

John Lehr 9:31 Exactly. We know that at least 60,000 individuals are newly diagnosed with Parkinson's. That number may actually be higher, and there's a new incidence study that's coming out in a couple of months that may demonstrate that, but what we also know from lots of anecdotal information is that when people learn about the Parkinson's Foundation after they've been diagnosed, it puts them on a better journey than if they were just given a prescription in their doctor's office and sent on their way. So we want to make sure that everybody who's newly diagnosed is aware of the Parkinson's Foundation, of our resources, the information, our 800 helpline number, so that they can be as engaged as much as they want to be or need to be in the early stages of their disease.

Dan Keller 10:12 There's also the Parkinson's Policy Forum to state and federal legislators. What message are you trying to get to them?

John Lehr 10:20 So there's a lot of things that need to be done in terms of advocacy for Parkinson's. One, at the federal level, we want to advocate for increased funding from the National Institutes of Health. Our sister disease, Alzheimer's, has been getting a great deal more money. Parkinson's is not getting quite as much money. Alzheimer's affects more people, that's true, but they're both drawing from the same pool of neuroscientists, and so we want to make sure that we have enough money to attract the very best minds in science, and that actually comes in large measure through the NIH and NIH funding. So that's something we do at the national, federal level. But there are many issues that affect people with Parkinson's at the local level, and so we're looking for things that can help people in their local communities that address issues of medication—there's a whole range of things that we focus on throughout the whole advocacy continuum.

Dan Keller 11:11 Do you, and if so, how do you get feedback from constituents that you serve?

John Lehr 11:18 So volunteers, particularly people living with the disease or affected by the disease, are the lifeblood of our organization. In fact, I'm at a conference right now where we've brought in what we call our Parkinson's Advisory Council, what we call PPAC. These are 15 individuals, most of them have Parkinson's or are care partners of people with Parkinson's, and we meet monthly, we ask them questions about living with Parkinson's. We ask them questions about our programs, how our programs can be better, where they think we should be investing more resources. So we use PPAC as sort of our high-level touch of what's going on in the community and what's important.

But we have a whole surveys component where we will put out, almost on a monthly basis, surveys to our community about issues of the day. It might be medical cannabis. It might be, "Tell us about your activities of daily living. Are you doing better? Are you doing worse? What helps you?" Whatever the subject is, we're routinely surveying and asking our community, "Tell us about this, tell us more, tell us what's of interest to you."

Dan Keller 12:19 Do you think the people you survey or get feedback from feel more connected or more empowered because of it?

John Lehr 12:26 Oh, for sure. I mean, we hear that over and over again. It's a point of pride for our foundation that we're so regularly in touch with people living with this disease. We're not exclusively a research organization, so we're not really narrow that way. I mean, we're about education, we're about care, we're about people living with this disease every day, and helping them to have the best healthcare and the best quality of life possible. So, that requires a lot of back and forth, a lot of exchanging of information.

We have a community grants program that goes out into the community. I think this year nearly almost 100,000 individuals have participated in our community education programs, so that's a huge number of people who are coming to get information and resources from the foundation.

Dan Keller 13:10 Can you think of one or two things that maybe you've made changes in because of the feedback?

John Lehr 13:15 Yeah, so at one of our Parkinson's Advisory Council meetings, we were hearing from the team about the importance of mental health—how people with Parkinson's really struggle with depression and anxiety and apathy—and so we launched a whole initiative to look at mental health, how referrals are done, where they're done, where they're being referred to, what the uptake on that is, and that's an ongoing study that we're going to continue to have implementation factors as we learn more about it, so that was one thing.

The other thing is, in the last 10 or 15 years, exercise has become incredibly important in the Parkinson's community, but we also realized and got input from our key stakeholders that there wasn't a lot of guidance about what good exercise was for people with Parkinson's. So we pulled together a whole bunch of national organizations in exercise and sports medicine, the YMCA, and we established standards, so that if somebody's going to participate in exercise for Parkinson's, they could be assured that wherever they were going, these were places that were adhering to the highest standards. That's a new program, so the rollout is still happening, but that directly came from people that we talked to in our community.

Dan Keller 14:27 How many local chapters do you have, and besides the services they give locally, what do you get back from them? Do they implement programs or give you suggestions?

John Lehr 14:37 Yeah, so when the merger happened, we were two legacy organizations; one of the organizations had sort of a very informal chapter structure. Following the merger, we divided ourselves into five regions nationally, and then 17 chapters within those five regions. These are mostly virtual chapters—they're not bricks and mortar, although we do have a few offices in a couple of cities. These are chapters built out completely with volunteer leadership who help us identify programs to put on in the community, whether it's related to living with the disease, whether it's something specific. I was just talking to somebody about a women's event that we did, and how to navigate Parkinson's as a woman, and all the different issues that arise.

So, our chapters are very involved on both the programming side, but they're also involved in our fundraising programs, helping us put on Moving Day, which, you know, is our premier peer-to-peer fundraising event, very much of a walk. There are so many educational activities that take place at Moving Day. Again, our chapters and our volunteers and our staff are very involved in all of that.

Dan Keller 15:39 What does the future look like? What do you want to see done, or what do you want to accomplish?

John Lehr 15:43 I'm very excited for the future. I think we just completed our second strategic plan for the next four years, that really does focus on our three mission pillars of research, education, and care.

In research, what we'd like to do is continue to advance research, so that new and better therapies come about. We're still living with therapies that were developed 50 and 60 years ago; they are helpful, but they are not exactly what we want. We want better therapies. We ultimately want a cure. We want to put more money into our research program so we can understand this disease in a better way, and then develop therapies that are really going to not only control the symptoms of the disease, but attack the underlying defect.

In care, we just want to elevate the standard of care. There's a lot of disparity between people who are seen maybe in rural settings and people who are seen at our COEs, and everywhere in between. We want everybody with Parkinson's to get the same high level of care, and we know that's not the case now. So, that's something that we're really going to push.

And then, in our education, we just want to make sure that we're disseminating as much information as broadly and widely to people living with this disease. There are a million Americans who have Parkinson's. There are 10 million individuals worldwide. I think we can do even more to get information and resources into people's hands so that they can live well. So, as I think about the next five to 10 years, we just want to continue to expand and execute on our three mission pillars, and that's going to require more resources, so we're actively out there fundraising. With greater resources, we can do more for our community.

Dan Keller 17:08 Have we missed anything interesting to add or important?

John Lehr 17:11 I think this has been a great discussion. I think it captures our organization. I would just say, you know, we're a people-oriented foundation. We are as good as the people who engage with us and inform us and are working with us, and that's really volunteer staff, and all of the great providers out there who are caring for people with Parkinson's. It's a good community. The Parkinson's community is just an outstanding community working really collegially with each other to try to advance the collective mission.

Dan Keller 17:38 Great, thank you.

John Lehr 17:39 Thank you. Thank you very much.

Dan Keller 17:50 If you would like to find opportunities to get involved with the Parkinson's Foundation, go to our website at parkinson.org, scroll to the upper right of our homepage, and click on the section titled "How you can help." There are options to volunteer, help fundraise, and ways to donate. In the same drop-down menu, see the heading "Advancing Research," if you'd like to see some of the research programs that the foundation supports, as well as ways that you can participate.

Finally, for an objective and independent look at the foundation's operation as a charity, go to Charity Navigator, the world's largest and most used independent evaluator of nonprofit organizations. At charitynavigator.org you can do a deeper dive into the foundation, but the top line is that Charity Navigator's most recent evaluation gives it a four-star out of four-star rating based on financials, accountability, and transparency.

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.

John L. Lehr leads the Parkinson's Foundation as president and chief executive officer. John guides the overall Foundation’s strategy of mission programs and resources that make life better for people with Parkinson’s. He works to expand the Foundation’s reach, research initiatives and presence, while working to improve health equity among the Parkinson’s community and the underserved. He ensures that all Foundation programs and resources aim to improve care and advance research toward a cure.

Dan Keller 0:07

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 with Parkinson's disease take medications to alleviate symptoms, but along with every drug comes the possibility of adverse effects, also commonly called side effects. These unwanted side effects to medications can be minor or more troublesome, such as dyskinesias and hallucinations, so most therapies are a balance, minimizing the downsides of a drug to increase their tolerability, making people more likely to take them, and thus increasing their benefits. The good news is that side effects do not affect everyone taking a certain drug, and moreover, they can often be minimized or alleviated by working with your healthcare team.

I spoke with neurologist Dr. Irene Richard of the University of Rochester, who described various approaches to alleviate side effects of drugs. A key aspect is to be aware of what may occur when starting a new drug, reporting problems when they do occur, and having reasonable expectations for the benefits of a drug, as well as its downsides. When people go on anti-Parkinson drugs, what are some reasonable expectations in terms of what symptoms they may alleviate and what they don't attack?

Dr. Irene Richard 2:03

I think that it's important, like you said, to have realistic expectations of what symptoms may improve, and of course, between you and your physician, you have to have an understanding of what medication might be helpful for what symptoms. So the way that we look at this, we might call them dopa-responsive symptoms versus non-dopa-responsive symptoms. So if you think about early on in Parkinson's disease, when you think about what core symptoms are, we usually think of bradykinesia, right? So a slowness of movement. In reality, people will have both slowness as well as a reduction in kind of the amplitude, so the movements will be smaller, as well as a worsening in the rhythm. What happens is that normally dopamine would control our movements such that, you know, they were quick and they were big and they were rhythmic.

The control of movements and dexterity is one of the core features of Parkinson's disease that does respond very well to medications that improve the function of dopamine, as does what we would refer to as rigidity. Even though someone may or may not be aware of the fact that they have rigidity, both rigidity and bradykinesia do respond relatively reliably to medications that improve dopamine. On the other hand, the third core feature of Parkinson's disease that people will often have early on would be a tremor. It's usually a resting tremor present when they're not doing anything, and it tends to go away or improve as you move the limb, but tremor is something that is variably responsive to our dopaminergic medications. So some people will get a good response to a medicine that improves dopamine function, some people will get a modest response, some people will get a little response, and then there are people whose tremor does not respond at all to any of our dopaminergic medications. And if you look at the cardinal features, the two things that get better reliably are bradykinesia and rigidity, and tremor is a little bit hit-or-miss, and you don't know until you try, and you may have to go to higher dosages.

On the other hand, there are symptoms that people will often get with Parkinson's disease that not only don't respond to dopaminergic medications, but, you know, they may not respond to any medications, and those might include problems with balance and problems with thinking or cognition, for example.

Dan Keller 4:41

Let's talk about adverse effects, or as people more commonly call them, side effects of some drugs used for Parkinson's disease. What side effects are often encountered with which kinds of drugs?

Dr. Irene Richard 4:54

In general, the majority of medications that we use to treat the motor symptoms of Parkinson's disease, they increase the function of dopamine, because that's what's missing. Anything that increases the function of dopamine will tell you to improve movement, but it also runs the risk of causing what we call mental status changes, so that could be confusion or visual hallucinations, for example, and really those can happen with any of the medications we use to treat the motor features, although some people are more vulnerable to those side effects than others. In the same vein, certain medications are usually a little bit worse than others, you know, in their ability to cause that.

So if we were going to break down classes of medications, what I would say is that the medication that's the most effective, and that we know has been around for a long time, and is the most likely to help with Parkinson's motor symptoms, that's the medication we often refer to as Sinemet, carbidopa-levodopa. The side effects of Sinemet are actually relatively mild. People can get nauseated, but usually by starting at a very low dose and going up very gradually, we can prevent or minimize nausea. Another side effect might be lightheadedness when you first stand up, and that's caused by a combination of the fact that blood pressure control is disordered in Parkinson's itself, and then the medications like Sinemet kind of contribute to that, so those are kind of the short-term side effects if you were to look at Sinemet, or carbidopa-levodopa.

Another class of medications, which are called the dopamine agonists—basically, the brain receptors think that they're dopamine, even though they're not, and these are medications like pramipexole, the brand name of which was Mirapex, or ropinirole, Requip, rotigotine, or the Neupro patch. So those medications, they can help motor symptoms, not to the extent that the carbidopa-levodopa would, but they can. So the most common side effects that they have that we usually are concerned about: they can be sedating, so they can make people sleepy, and sometimes that sleepiness can come on suddenly. Some people have referred to that as sleep attacks, which is obviously a big concern—for example, somebody's driving and they may not have much warning before they fall asleep. Another is edema, and that's actually swelling of the extremities. It's usually swelling in the legs. In and of itself, that's not particularly dangerous, but it's something of which to be aware, so that you don't go, let's say, pursuing an entire workup with your primary care doctor. They are probably a little more likely than levodopa to cause visual hallucinations in people who are vulnerable to them, and that tends to be people who are older or who have cognitive impairment.

And then the other really important potential side effect of any dopaminergic medication, but probably of most concern, or most commonly with the dopamine agonists, we refer to them as impulse control disorders. And this is basically compulsive behavior, so people can't control their impulse and will do things that they ordinarily wouldn't, or they don't necessarily want to. And the best example I would say is what we refer to as pathological gambling. And there are people who have never gambled in their life, and they start a medication like a dopamine agonist, and they've gambled away their life savings. And when the drugs first came out, we didn't realize that association, and once that association was recognized, it's become really important to let people know about that, because it doesn't seem intuitive that one would think this medication taken for my Parkinson's disease is making me gamble, but the reality is that it can. So we always like to kind of warn people ahead of time just to be aware of it. It doesn't happen to everybody. Younger people tend to be a little bit more prone to it, and certainly people who have either a personal or family history of impulse control disorders or substance abuse, but plenty of people who develop it really don't have a personal or family history of such things. So, you know, that would be with the agonists.

Another medication that we use is called amantadine. It's kind of in a class of its own because it does a lot of different things. It can help the underlying symptoms of Parkinson's. It can also help reduce the dyskinesias that people get over time when they take dopaminergic medications. So those are those wiggly, wriggly movements that people have, and amantadine can not only help the underlying things like the slowness and the tremor, it can also help reduce those dyskinesias. The side effects of amantadine are similar to the others in that it can cause confusion or hallucinations, but in addition, it can cause the swelling in the legs, as well as a rash—a very distinct rash, which is a kind of lacy-patterned reddish rash on the legs. It's not dangerous, but it is something that can be associated with amantadine.

And then probably of most concern with amantadine are what we refer to as anticholinergic effects, and those are basically things that, for the most part, people with Parkinson's already had problems with, so they can get even worse. That would be things such as confusion, problems with, let's say, being forgetful, dry mouth, constipation, difficulty starting to urinate—all of those things, again, we refer to as anticholinergic side effects, and those can be seen with amantadine. In addition, amantadine can sometimes cause insomnia. And the one other thing to keep in mind with amantadine is that, unlike the rest of our medications, it's cleared by the kidneys. If somebody's kidneys, let's say, aren't really working perfectly well—if somebody has some difficulty with their kidney function—the amantadine will build up in their system, so they'll be more prone to getting side effects of it.

Sometimes we add medications, we mix medications. People are aware of that one class of medications called the MAO inhibitors. They decrease the amount of dopamine that's broken down in the brain and therefore increase the available dopamine, and sometimes they're added on to existing medications just to kind of prolong the effect or kind of give a little extra benefit. Those really have similar side effects to the others that I talked about in their potential to cause hallucinations, also their potential to cause a drop in blood pressure when first standing up. And the one other thing I guess I'd mention about them is people will get warnings along with their—when they get their prescription filled, or even the doctor, a warning might pop up as they're making the prescription—that you don't want to combine those with some other medications, including commonly prescribed antidepressant medications. We prescribe antidepressants along with those MAO inhibitors all the time. We just let the pharmacist know, "Yes, we're aware of it," but that's a very commonly prescribed combination.

Dan Keller 12:14

What can be done? Can you just list some things that help to mitigate side effects in general? What sort of approaches do neurologists take to help people overcome them, or even hopefully eliminate them entirely for a certain kind of drug?

Dr. Irene Richard 12:31

The first thing is just, first of all, to establish for sure that it is a side effect of the medicine. It's usually pretty obvious, though not always, so you hopefully only make one change at a time, so you know what's causing what. But if it does appear as though you're having a side effect related to a drug that you started, one thing you might do, it depends, first of all, how serious the side effect is. Right now, for example, if you were to start Sinemet, or carbidopa-levodopa, and you got nauseated, one approach would be, "Okay, let's back down, let's start at an even lower dose, and go up even more slowly to let your body get used to it," because even though you might not have been able to tolerate a rapid increase, maybe if your body gets used to it over time, you will be able to tolerate it, and actually that's usually the case. Another possibility would be that you just have to lower the dosage, you know. Everybody is different.

I would say that one important thing to think about, I'd mentioned to you that all of these medications can potentially contribute to this drop in blood pressure when you first stand up. That's called orthostatic hypotension, and that's actually a pretty big problem, because people stand up and they get dizzy, their blood pressure drops, and all of our medications that I just mentioned, except for amantadine, tend to do that. We will often tell people, "Okay, well, get up slowly, make sure you're well hydrated, you know, add salt to your diet." There are a lot of things that you can do that are, you know, quote conservative measures, but the other really important thing is to look at your other medications that you're on, perhaps for different indications and prescribed by a different doctor.

And the most common ones are medications that you have been taking, for example, for high blood pressure. So you might have had a history of high blood pressure, be on a medication for high blood pressure, and all of a sudden you get Parkinson's disease, and then, particularly when you take a medication to treat it, you no longer need that high blood pressure medicine, and in fact it can worsen that phenomenon of the blood pressure dropping. And another example of a medication that can do the same thing, there are certain medications that are used, particularly in men who have prostate problems and initiating urination—Flomax is an example—that can also cause that orthostatic hypotension. So you kind of have to look and make sure that you're not having an additive effect of two different medications, and in some cases you may just have to make a choice of, you know, well, if you really need the other medication and your conservative measures don't work, you're going to have to either stop the Parkinson's medication or you can treat a side effect with another medication. It's not what we like to do. We don't like to keep adding more medications, but there are medications that we do use, not uncommonly in Parkinson's disease, to increase blood pressure. So depending on the side effect, depending on the medication, there are a lot of different ways that we can kind of deal with the side effects. And the other thing to keep in mind is that there are some side effects that are problematic and, you know, very difficult to just live with, and we really need to do something. There are others that it's important that you notice them, so that you and your doctor are aware that it is a side effect, but it doesn't necessarily mean that you need to do anything differently.

Dan Keller 15:49

I suppose one key to this thing is to be able to work with your neurologist to alert them to these kinds of side effects. Do neurologists typically go beyond just saying, "Are you having any problems?" but saying, "Oh, I see you're on XYZ medication. Have you noticed this, or this, or is it troublesome?"

Dr. Irene Richard 16:10

Yeah, no, that's a good point. What I would say is that generally, when we first prescribe a medication, we would tell people what the most common side effects are, what to look for. I mean, obviously, if you read a package insert, it contains everything, so we don't recommend doing that. But, for example, with Sinemet, when we prescribe that, I'll say, "You know, it can cause a little bit of nausea, that's why we go slow. It can cause some lightheadedness when you first stand up, that's why you want to take your time." On the other hand, with dopamine agonists, it's really important that we warn people about the potential for both the swelling in the extremities, as well as this impulse control disorder, because people might never put the two together or even think that it's a side effect.

So, from a patient standpoint, it's always helpful to ask what potential side effects might I experience with this medication, and it's important from the neurologist's aspect to be proactive and tell patients, you know, you don't want to scare somebody, but you can tell them, "Not everybody gets this, but potential side effects, ones that we see commonly, are X, Y, and Z." I'd say that most neurologists tend to be rather conservative, and that we'll start at a low dose and we'll go up gradually. It depends upon the neurologist, but we'll tell people, "Why don't you contact us when you get to, let's say, a certain dosage, and then we'll let you know what to do from there." In other words, let's say you get up to one tablet three times a day of Sinemet. If that's worked and you're tolerating it, you could just stay there. On the other hand, if you're tolerating it, but it didn't really help, let's say your dexterity or tremor, we may then say, "Okay, let's keep going up, then."

But it's certainly important if you are on a medication, particularly if it's a recently started medication, and you are experiencing a new symptom, it's important to bring it up to your neurologist, first of all, just so that they know, and they may be able to determine, "Oh, well, you know, that might be a side effect of this medication." Or even if it's not a side effect of this medication, maybe it means something else is going on that you should get checked out with your primary care doctor. So I do think that kind of being vigilant, but not necessarily overly vigilant, but on the other hand, if you're having symptoms, particularly something new, it never hurts to mention it.

Dan Keller 18:28

Is there any sort of nutshell message to patients and caregivers in this area?

Dr. Irene Richard 18:35

I think that when it comes to Parkinson's disease, it's good to understand that the medications we use are used to treat symptoms. I think one thing that I really do want to get out there, because I think it's such a prominent misconception, still seems as though people are very hesitant to start Sinemet or carbidopa-levodopa. We've really come full circle, and over the past 10 to 15 years, we've done extensive studies, and while it was a concern initially about should we wait to start Sinemet, the majority of Parkinson's disease specialists have come to the conclusion that when somebody is having symptoms that would respond to Sinemet and those symptoms are impacting their quality of life, they should not hesitate to start carbidopa-levodopa, because it will improve their function, it will improve their quality of life.

And even things like exercising that we know is really helpful for Parkinson's disease—in fact, it may even slow the disease progression, we know it slows emotional decline—Sinemet, for example, carbidopa-levodopa, there's even been studies that show that people get more out of their exercise when they're on Sinemet than when they're not. And eventually, because everybody ends up being on Sinemet for the most part, what you have to do is look a few years down the road and realize everybody looks the same at that point. In other words, it doesn't change the ultimate outcome, but what it does do is, if you start it sooner, in retrospect, you probably will have had better functioning, better quality of life for a longer period of time than had you tried to hold out on starting it. That's just one real important message, because I just see it so commonly.

Dan Keller 20:16

Very good, I appreciate it. I'm sure this will all be helpful to our listeners. Thanks.

And for more information on side effects of drugs used to treat PD, there's a wealth of information on our website at parkinson.org. Just search for side effects. While a lot of the information relates specifically to PD drugs, much of the advice and therapeutic approaches are also useful regarding medications for many other conditions, since side effects of drugs are a very common phenomenon. An expert briefing by Hubert Fernandez gives a good overview of many of the drugs used to treat PD, their efficacy, and side effects. Several fact sheets, along with our medications publication, cover many of the classes of drugs, including levodopa-carbidopa, dopamine agonists, amantadine, monoamine oxidase inhibitors, and more. You can find these materials in our PD library at parkinson.org/library.

You may also find useful information by revisiting past podcasts in this series. Emily Perrin covered pharmacy challenges in PD in a podcast with that title. In back-to-back episodes, Joe Quinn and Martha Nance discussed hallucinations. One podcast is titled Do You See What I See: Hallucinations and Parkinson's Disease, and the other is Hallucinations and Delusions in Parkinson's. Mark Groves addressed impulse control disorders in an episode called Clinical Issues Behind Impulse Control Disorders, and coming up in 2021 we will feature Greg Pontone giving some tips on how to talk to your doctor about impulse control disorders.

If you have questions about today's topic, or anything else having to do with Parkinson's, our information specialists can provide answers in English or Spanish. You can reach them at 1-800-4PD-INFO. News and updates about future events and resources are available by joining our email list at the bottom of our website's homepage. If you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. If you enjoyed this podcast, be sure to subscribe and rate and review the series on Apple Podcasts or wherever you get your podcasts.

At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every other week. Until then, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO, that's 1-800-473-4636. Thank you for listening.

Dr. Irene H. Richard is Professor of Neurology with a secondary appointment in Psychiatry at the University of Rochester in Rochester, NY. After graduating from Cornell University in 1987 and receiving her MD from the Yale University School of Medicine in1991, Dr. Richard completed neurology residency at the University of Rochester in 1995, followed by NIH-funded fellowship training in Movement Disorders and Experimental Therapeutics in 1997. She joined the faculty of the University of Rochester in 1997. Dr. Richard provides neurological care for patients with Parkinson’s disease and related conditions and her clinical research program focuses on the psychiatric aspects of these illnesses. More recently, with support from a PF community grant, she has also been working with her team on efforts to optimize hospitalization for patients with PD. She is the author of numerous scientific articles, editorials and book chapters and has been the recipient of career development awards and research grants, including one from NIH to lead a multi-center clinical trial evaluating the treatment of depression in PD. Dr. Richard is Director of the University of Rochester’s Movement Disorders Fellowship Program, LBDA Research Center of Excellence, and Parkinson Foundation Center of Excellence.

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.

Parkinson's is a complex disease involving motor and non-motor symptoms, mental and emotional aspects, relationship issues, and more. So, some of the best outcomes often come from a team approach involving health professionals with expertise in different fields, such as neurology, physical, occupational, and speech-language therapy, and more. One important member of the team is the social worker, who can work with people with PD and their care partners to identify areas of need and find the resources to address those needs. Some social workers are licensed to provide emotional and relationship therapy themselves.

I spoke with Elizabeth Delaney, a licensed clinical social worker in the Movement Disorders Division at Columbia University, to get a good picture of the role of social workers and why they should be an integral part of the PD healthcare team. She started off with a general description of what social workers do.

Elizabeth Delaney 1:48

Social workers across the board, I think, are there to kind of provide support to people and kind of assess not just the person and how they're feeling kind of emotionally on the inside, but how they're functioning within their world and their environment. So whatever that setting may be, the social worker is really taking into account that person and how they're functioning or interacting with other people or their environment. So typically across the board, social workers can provide assessments to assess family structure and the support system that a person might have, their physical or cognitive functioning, which might include their mood or how they feel about themselves, and we could provide supportive counseling.

Some social workers, as I mentioned, can be licensed clinical social workers, so they can actually provide psychotherapy as well. And some social workers provide case management services, so that could be coordinating certain concrete services or resources for a person to make their lives a little bit better, you know. I entered social work to help people, and I think that's what most social workers do. So, in any setting, it can kind of be, how can I help this person, while taking into account the context that they're in and their life, essentially.

Dan Keller 3:04

What are some specific problems that arise with Parkinson's disease that social workers can address?

Elizabeth Delaney 3:10

So, with people with Parkinson's, it's kind of complex, because there are a lot of moving parts in order to make sure that they have the best quality of life. So it's not just the movement disorder specialist, or the physical therapist, or the care partner, or how they're doing at home—it's all those things together. So, the challenge for the social worker is kind of to make sure that all of those pieces are connected. And my role in my center, I'm there to make sure that there's continuity of care, so from when they come into the office, see the movement disorder specialist, making sure they're connected to resources within the community.

So, in terms of Parkinson's, that can be wellness programs, it can be support groups to make sure that I'm providing the support when they come in, but I want to make sure that that support continues in the community. So that might be connecting them to support groups, it might be evaluating not only them, but their caregiver, to make sure that the caregiver has the support they need to provide the care to the person with Parkinson's. So, I think there are a lot of moving parts in the care of someone with Parkinson's, and that's the challenging part, is to make sure those moving parts are working together to make sure that the care is effective, and that the person with Parkinson's is being connected and receiving the resources that they need to have a good quality of life, and that can vary in the different stages that they're in with their Parkinson's.

Dan Keller 4:30

So, this sounds like it's more ongoing continuity of care, a chronic sort of interaction, as opposed to some of the things social workers do, like homelessness and abuse and conflict, and things like that, is that right?

Elizabeth Delaney 4:43

Correct. In an outpatient setting, like I'm in, you know, there, of course, can be those moments where there are urgent referrals to me in cases of abuse or homelessness, but certainly it differs from maybe someone that's in the inpatient realm of social work, where they're focused on discharging the patient safely, but there's not really that continuity there. There's no follow-up unless that person maybe is rehospitalized and readmitted, and then that social worker comes across them.

So it's a little bit different in an outpatient setting, where we're continuing to see these patients, and we're able to check in. So that's kind of where the role differs in an outpatient Parkinson's center, as opposed to a social worker that might be dealing with more urgent acute issues in the inpatient hospital setting, such as you mentioned homelessness or abuse that has put them in the hospital.

Dan Keller 5:32

Are there social workers who have particular expertise in the Parkinson's area, and should people with Parkinson's, if there are such people, seek them out?

Elizabeth Delaney 5:42

Sure. So, I think at least at Columbia University, there was no real coursework that specified Parkinson's or maybe Alzheimer's dementia that specific, but certainly we learned about the health system and mental health issues. So, to find a social worker that's specific to Parkinson's might be a little difficult, just as, you know, a lot of patients want the people that are providing care to know about their condition, and that is completely understandable. It just might be a little difficult, since the education in social work school is not particular to Parkinson's.

What I would recommend is to find a social worker that knows about chronic illnesses. So, a lot of times social workers will gain that experience in hospital settings or nursing home settings, where they might come across more chronic illnesses, and they get that knowledge through experience. So, asking or looking for someone that has experience in chronic illness or neurological conditions can certainly be helpful, as opposed to a social worker that might not have that same background.

And hopefully a lot of centers, or Centers of Excellence, the Parkinson's Foundation specifically, might have those social workers in place at their centers, and they would know or be more familiar with Parkinson's. So certainly, if you are looking for a social worker, going to a Center of Excellence would be a good place to start, especially if you're looking for one that knows about Parkinson's.

Dan Keller 7:06

Do other health practitioners, including general neurologists and even movement disorder specialists, fully understand the role of social workers?

Elizabeth Delaney 7:15

Well, I think that's a good question. I think initially physicians get their training through residency programs in hospital settings, so they might be more familiar with those social workers that perform in crisis situations. So they might indicate a social worker for someone that's homeless or abused, but when they go into the private setting or medical center, they might not have that same exposure to social work. So it might be difficult for them to know if there is a social worker in their center, what exactly they help with. So, I think there can be a lack of understanding of what social workers do, especially since the profession is so broad and they're seen in so many different locations. It might be hard for them to know exactly what we could provide in an outpatient setting specifically.

Dan Keller 8:01

You're at a Center of Excellence. I take it that they put together interprofessional teams, and patients really have a pretty comprehensive evaluation and treatment and ongoing care. How common is this? Can this be found in the community? Do most places operate this way?

Elizabeth Delaney 8:20

So, I would say that maybe not most places operate this way, but I definitely think it's to their benefit to do so, especially with the chronic illnesses. There are a lot of moving parts, as we mentioned, so I think that a lot of maybe community centers or senior centers have social workers there that can help provide similar services—specifically more so concrete services, if they need, like meal delivery programs, or just kind of some support—but I don't think it's as common. But I think it's certainly gaining traction. I think there's a lot more focus on integrated care and better coordination of care, and I think that's starting to expand beyond just Centers of Excellence, and I think that's for the better, especially for our patients.

Dan Keller 9:03

Are there barriers to integrating social workers into the healthcare team? We have always, or traditionally, focused on sort of a medical model. It's a person walks in and has a disease, as opposed to a person walks in and has a whole life that involves the disease and social, economic, psychological, and all sorts of aspects of their lives. So, how well are social workers integrated into the healthcare team, given the sort of traditional nature of the medical model?

Elizabeth Delaney 9:35

Yes, so I think there is still a little bit of work to be done. Certainly if there's a social worker on the team, the integration piece can be sometimes missed, or they underutilize their social workers, so that goes hand in hand with knowing what a social worker can do. So, if they are knowledgeable about what actions the social worker can take, they might better delegate clinical tasks to that social worker. And an important piece here is, or to go to integrating in a better way, is to educate the healthcare professionals, or that team, in what a social worker can do, because I think the reason that the integration might not be there is that they just don't know. So for the social worker to sit down with their team, especially if the team already has case conferences, a social worker to explain how they could have helped in certain situations, and I think over time it will kind of work itself out in terms of what referrals are appropriate for a social worker and what might not be.

Dan Keller 10:36

Are there enough social workers around who have expertise in Parkinson's disease, or as you said, chronic disease, that people can readily find them and see them?

Elizabeth Delaney 10:46

I think that there definitely are social workers that have familiarity with chronic disease. So, you know, a good resource that I usually use is I go on Psychology Today, and you can actually search for social workers. Now, this will be more of a mental health focus, there to kind of provide psychotherapy and support, but given their social work background, they will be kind of used to providing resources as well. You can kind of search by specialty, so I usually put chronic illness, or you can put coping skills and strategies, because a lot of these more progressive illnesses, the focus could be on coping with the changes that come. So certainly that's a resource that I usually use.

And also, you know, senior centers or community centers, they certainly have social workers in place that can help provide concrete resources. Another option is there's private social workers—they're called senior care managers—that, you know, perform specifically kind of the same tasks that I do, just in the community for a private fee. And they usually have exposure to neurological illnesses or people with dementia as well, because those people tend to need a little bit more help and especially a lot more coordination with their care. So I think Psychology Today, your local senior center or community center, and private senior care managers are certainly a few ways that they can access social workers.

Dan Keller 12:12

Are social work services generally covered by private insurance or employer insurance or Medicare?

Elizabeth Delaney 12:18

Yes, so I think a lot of the people that you would find on Psychology Today would accept certain insurances, and you could certainly find that by filtering. The care managers would certainly function in more of a private manner, so wouldn't be covered, although there are some long-term care insurance policies that might allow for that and might cover that. If you find a social worker in your center, for example, in our center, I don't charge for my services—as long as you're a patient that comes to our center, you can speak freely with me, and I can provide support and services at no cost to you without billing your insurance. And certainly in some centers where that social worker might provide psychotherapy, they could bill your insurance, and your insurance would cover it if they're in network with it.

Dan Keller 13:03

Are there ways to measure and validate better outcomes if social workers are involved in patient care?

Elizabeth Delaney 13:09

Yeah, so I think there could be some measures in terms of continuity of care. So I think if social workers are involved in making sure that a person comes to the center and they're given a prescription for a piece of medical equipment, or they're told they need more help in the home, if they walk out of there and are unsure about how to go about that, that is something that could be measured. If they come back again and say that they didn't get the equipment, they never got an increase in their home health aide hours, that is something that a social worker could intervene. You could certainly measure that and see how that kind of enhanced their quality of life.

There's, I think, a Parkinson's disease quality of life scale that could be given to patients, and you could certainly see if those patients that have interacted with a social worker are scoring kind of higher on that scale—if they are doing better because there is more continuity of care, because they have been introduced to a social worker. So I think there are ways to measure specifically surrounding treatment plans and how effective those plans were with or without the introduction of a social worker.

Dan Keller 14:15

Is there anything important to add that you'd like to touch on?

Elizabeth Delaney 14:19

In my personal experience in working with people with Parkinson's, they do appreciate someone knowing about their disease. So, I think it might be important for schools of social work to teach the importance of knowing about chronic illnesses or progressive illnesses. I think that's important, and I also think that it's important for people with Parkinson's to know that there's someone there at their center, or just in general, that they can go to if they have a question. I get a lot of times people calling just specifically to say, you know, I had a question for someone there, I just don't know who to ask, and I always say, you could always ask me, and if I don't have the answer, I could certainly point you in the right direction. And that's kind of what I want people to know, is that social workers are there to help navigate this very complex healthcare system to make sure that you get the best quality of life that you can get.

Dan Keller 15:10

Very good, I appreciate it.

If you're a social worker and want to find educational resources designed for social workers in all care settings who want to provide the best care for people living with PD, you can visit parkinson.org/socialwork. Here you'll find a list of materials, including webinars, podcast episodes, and fact sheets that you can share with your patients and colleagues.

If you are a person with PD or a care partner and want to learn more about how social workers are integral to the multidisciplinary care of people like you, search our site at parkinson.org for social workers, and you'll find a recent presentation in our PD Health at Home series, titled Psychologists, Social Workers, and Counselors: How Can They Help, by social worker Annie Wallace, Associate Director of Education at the Parkinson's Foundation.

In an earlier episode of this podcast series, licensed clinical social worker Jessica Shurer discussed the emotional changes that may occur throughout the course of the disease, along with suggestions for how people who are unable to travel to large medical centers may find help to address their emotional needs. That episode is titled More Than a Movement Disorder: Addressing Mood and Coping, which you can find at parkinson.org/podcast or on your podcast streaming platform of choice.

In our blog series, Jessica talks about how social workers collaborate as part of a PD multidisciplinary team. You can find her blog post under the Living with Parkinson's tab near the top of our website pages. In her blog, she also talks about the mission of social work and how it drew her to enter the field.

If you have questions about today's topic or anything else having to do with Parkinson's, our information specialists can provide answers in English or Spanish. They can also help you find a social worker in your area with expertise in movement disorders or chronic diseases. You can reach them at 1-800-4PD-INFO to receive news and updates about future events and resources. You can opt into our email list at the bottom of our website's homepage.

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

At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every other week. Until then, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO, that's 1-800-473-4636. Thank you for listening.

Elizabeth Delaney, LMSW, joined the Columbia University Irving Medical Center (CUIMC) Movement Disorders team as a Licensed Social Worker and Center of Excellence Coordinator in June 2017. She got her start in the field of movement disorders during her second year of social work internship at New York Presbyterian Brooklyn Methodist Hospital Neuroscience Department, working within the outpatient Parkinson’s’ center. She has particular interest in mental health, health disparities, and community education. She completed the Allied Team Training for Parkinson’s in 2017 and continues to grow as a movement disorders mental health clinician. Elizabeth completed her Bachelor’s degree in psychology at Pace University and earned her Master’s degree in Social work from Columbia University.

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 0:08 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.

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.

Anyone can pitch in to raise awareness of Parkinson's disease, and the more awareness there is, the better the chances that people with PD will get diagnosed and benefit from treatments earlier.

Parkinson's Foundation ambassadors provide outreach and education. Today, we're hearing from two young ambassadors, graduate students Bryan Geenen and Prajakti Barot.

Bryan has a family history of P.D. and Prajakti, who became involved through Bryan, now plans to go to medical school and become a neurologist. They filled me in on the details of what drew them to become ambassadors.

Bryan Geenen 1:16
The reason I got involved was because my grandma and my father both have Parkinson's disease. My grandma has, you know, had it my whole life. My dad got diagnosed when I was in high school with early onset, and I've just been around it a ton and seen the toll it can take over time, and then seeing what it does, you know, in the short term as well for somebody who just got diagnosed, and always looking for a reason to get involved in things, and I couldn't think of a better reason why than to support my family.

Prajakti Barot 1:47
Brian told me that he contacted the Parkinson's Foundation, and they were thinking about organizing an annual awareness walk, and I was like, "Wow, that is incredible to be a part of an organization like that and be involved in organizing a walk." Since I've never done anything like that, it all started. But then my personal career reason, professional reason, if that makes sense, was because I wanted to get involved in the social work and make connections.

Dan Keller 2:21
So it sounds, Brian, like you had a fair bit of experience like this before you got involved with the Parkinson's Foundation. But was your entree to this Prajakti through Brian and seeing what was going on in his family?

Prajakti Barot 2:38
Yes, I've never been around anybody with Parkinson's, but I've only learned about it in school. Never really knew about it in detail. But then Brian told me that there is an organization, and then we went all in, and now we're just learning more and more.

Dan Keller 2:56
Was there anything that surprised you when you first started learning about it and seeing other people involved with it?

Prajakti Barot 3:05
From my end, especially when we went to the summit in Henderson, the leadership summit. I was really surprised that Brian and I were the youngest, even in the staff or as a volunteer. We were the youngest of everybody. I thought there would be a lot of people like Brian and I being a part of an organization and helping people. So, just that age that was involved with the foundation was really surprising to me.

Bryan Geenen 3:35
Something that surprised me around being in the foundation, I think it was the rate at which it grows is obviously interesting. You know, we see it at you know greater volumes now, and more and more people are coming out and talking about it. But I think it was also there isn't quite a cure, and there isn't like a lot of things to do. And that was kind of my whole introduction to Parkinson's was what can we do to delay it, right? There's no cure. How do we continue to help people with Parkinson's continue to grow as people and lead a great life? And I think once we were able to join the foundation and understand a little bit more, you know, the resources, the call lines, all of those things really surprised me.

Prajakti Barot 4:21
I agree. I have to agree with you. Yeah, and then when we meet, once we start getting more involved and familiar with all that the organization provides, we start talking to people and just seeing people like getting excited about knowing that there are more resources out there for them to educate themselves and lean onto was also something that touched my heart, especially when I went to one dance class with Kristyn up in Monument at the YMCA, I just saw all these people that were so relieved and so excited, even to understand and learn and have so many questions, and that actually touched my heart. And I was like, wow. This is beyond just organizing the walk. You're helping people like in a very different manner, in a very impactful way.

Bryan Geenen 5:08
And I think we're also surprised, you know, you going in the medical field that Parkinson's isn't always super like talked about or understood from all levels. I think that was super interesting too to see that the whole information fact sheet when you go to a hospital or a safety guide, a lot of doctors aren't sure of how to treat people with Parkinson's. My dad had an interaction like that when he was in the hospital, where it's some people just don't know how to deal with Parkinson's even at the medical level.

Prajakti Barot 5:36
I agree. I mean, as I said before, meeting you or I'm being familiar with the organization. All I knew about Parkinson's was from a textbook or whatever briefly they talk about, but I've never had that personal experience because it's so not talked about in the culture where I come from. It's just seen as an old person's disease. You just shake, and then you just get immobile. That's how it's perceived. So, I think just being around the foundation, being around these people, I've also gained like a perspective about what do I want to do, being involved, and how I want to help and improve the resources and the education around it. I really want us young people to be a part of this as much as they can because if we're aware, we can help our family members, we can help our neighbors, whoever. As a young healthcare professional, the sooner you get yourself familiar with such a disease, I think it's the better it is for you when you go out there and get a specialization, maybe in a movement disorder or something. So, yeah,

Dan Keller 6:47
Your family is from India, and we had other podcasts on cultural outreach, informing communities that may think it's just an elderly white man's disease. So, what can you do in that respect?

Prajakti Barot 7:04
Oh, absolutely. That I really want to change a little bit of perspective around it because I have two ideologies. One, it is that we just think it's a white male disease because the education, the resources, the support has only been around that culture and doesn't necessarily translate in other different languages. So I really want to enforce or emphasize the need to bring the supporting materials and resources in different languages, so we can reach out to those different cultures and help them conquer, however they can, the disease and the illness, and the second thing I think is that even if there is resources around this, I think just spreading awareness in different cultures is really important at this point because I think we have a lot of data around white culture, but I don't think we have enough data to support any kind of study and research different cultures, and we know that PD is not just environmental; it's genetic also. And having that data will help us tremendously. In India, being the most populated country, I think just having awareness resources and data from that background will, I think, help us tremendously in fighting the problem or the disease.

Dan Keller 8:30
Are there skills or perspectives that younger Parkinson's Foundation ambassadors can bring that might not be obvious to older people?

Prajakti Barot 8:42
I really think the enthusiasm and the excitement and the creativity, or the way you can bend things around new forms of technology as a young person, I think is some skill sets younger generations have or are more familiar with.

Bryan Geenen 9:00
I'd jump into like when we go to some of these events. You know, we do tend to be the youngest people, or you know, people are surprised like, oh, you're with, you know, you're you're trying to raise awareness on Parkinson's. It's just bringing a lot of life and energy, and using those new forms of technology that we can, you know, do our best to continue on the work that the generations before us, you know, built already, but we've really enjoyed it. You know, I think the biggest thing as young people is when you can bring in a perspective of, you know, I'm I don't have Parkinson's. I might, you know, down the road have it, but I know people with Parkinson's, and that's not usually who's doing the speaking. It's the people next to the individuals with Parkinson's, or it's the people with Parkinson's themselves.

Prajakti Barot 9:49
I think as young people, they can bring a newer, fresher perspective on how to fight the disease, or even come up with alternative exercise forms, or help them improve their mood and boost their mood because we know depression and anxiety are some of the symptoms. And I think with our enthusiasm as young people, we can do that. We can help the cause. We can make it better for everybody.

Bryan Geenen 10:13
Just to finish that last point, as young people who don't have it, you know, being able to talk about how it affects us, how we can work with our parents, our grandparents, and kind of continue to help other youth discuss these sort of topics, or help people with Parkinson's to talk to their kid, provide that experience of hey, you know, I went through this in high school, I went through this in college, I went through this when I was younger with my grandma, my father, my mother, whoever it is, you know being able to provide that I think is super valuable. We've already talked to a few people in the foundation itself and talked about hey I'm not sure how to speak to my kids sometimes about

Prajakti Barot 10:50
it.

Bryan Geenen 10:50
Correct. How can we speak to the youth that hey this isn't just you know for elderly people to worry about. It's a family member. It's an uncle. It's a best friend. It can be anybody, and being able to deal with that as a young person, I think, is important.

Prajakti Barot 11:05
Yeah, and I think why to wait until you're impacted by it. Parkinson's is becoming more widespread. Why wait until you're impacted, right? Let's just make ourselves also more prepared, more aware, more educated around it. That way, we can maybe help ourselves prevent it, even or when it comes to kind of our better stage to help yourself or others that are impacted by it.

Bryan Geenen 11:33
Or when you're going into med school and trying to pick things or trying to learn, you know, you've talked about some of the classes we might be able to bring

Prajakti Barot 11:41
absolutely. You could just do so much if you're a young person. If you're involved with it, you can actually change the world around it. And I'm not saying that the people that are involved right now cannot, but I think that the sooner we have more people, different mindsets, different perspectives being participating, volunteering in a cause like this, the quicker we can reach to the end goal, which is finding a cure.

Dan Keller 12:10
We've been talking about looking at people who are older and have Parkinson's, but do you ever run into anyone with young onset Parkinson's disease, and do they relate better to you than they would somebody in their 60s or 70s?

Bryan Geenen 12:27
Yeah, that's a good question. I would say I've met people that can relate to me a little bit. You know, we're on the younger side, a little bit more enthusiastic, or still working. And I don't know. That feels like more of a question for those individuals, but I've felt like I've been able to help to inspire. I hope I can, or we can, bring a little bit of life to people and go. Hey, you know, we're not necessarily we don't have it, but we truly care about you. You know, we just met you, but you know, I see my dad. I hear my grandma when people talk, and I can relate to those people and their families and their partners and what they're going through through my family's experiences.

Dan Keller 13:14
What one message would you want people to get to take away from this conversation that is fairly practical in their life?

Prajakti Barot 13:23
From my perspective, I joined this not only because I knew somebody, but also for my career. And practically, if you don't have anyone with Parkinson's around you, I say still join because the satisfaction you get from helping other people is tremendous, and or seeing other people smile and finding that belief is amazing. And professionally, I think the connections that you can make, the leadership skills and qualities that you can get, are very very helpful as you grow. You put yourselves out there in the real world, performing big tasks and having responsibilities like organizing a walk or fundraising. You just learn so much. You just grow up a little bit faster. You realize how the world works, how everything is supposed to be, how to be humble and kind and supportive to everybody.

Bryan Geenen 14:23
The message that I would want to give to this community is: this isn't a reason to, you know, not live or to not continue to grow or, you know, find your people. I think being able to go to those events and talk to people and just interact, and you know this isn't a death sentence. Although you know sometimes we talk so much about how it impacts you and all the things you have to be careful of, and the research, and you know these things are so scary. And it's like these people, our family, it's our friends, it's our community, it's our teacher, our best friend, even at some point. This is not something to be scared of. If we can all work together and continue to grow community events, and yes, it's great to learn, and it's great to fundraise, but it's great to get people together and talk and grow and learn about things and how to be safe, and that's community building.

Bryan Geenen 15:17
I think that's the biggest thing that I would want to tell people, and especially like I can't relate exactly to someone with Parkinson's, but I can you know talk to their daughter, I can talk to their son, I can talk to the whoever it is in their life, and say, hey, this is not something to be scared of, you know, just because grandma isn't able to talk all the time or isn't mobile doesn't make her any different, you know. She's just working against this disease, and how can we continue to take that in stride and provide a great community for everybody? I think is the message that we want to portray.

Prajakti Barot 15:52
Absolutely, and I would really encourage younger generation to be involved in such causes. Staff, like let's not wait. Let's just jump all into it. Like take this seriously. Why do we wait until it's on us and then you go out there, right? Why? Just just enjoy. Let's just enjoy this and get best out of it for others and for ourselves in whatever way it would be for you by engaging and talking with other people, or by making connections, or by conducting a research project—you know—that's just do it.

Bryan Geenen 16:28
Once you're able to get those volunteers in, you know, if those are collegiate students, if those are high school students, they take that back to their classroom. They take that back, you know, to projects that they're working on, and they start. They get so

Prajakti Barot 16:40
creative. I mean, young the young generation these days, the people even younger than us, like they're so creative and so smart. So that's why I have like this. That's why I have this vision that like the more we have, maybe the closer we get to finding a cure or somehow putting a full stop to progression. You know, I mean, help people. You can do it as a community. You don't have to separate it from age or cultures, but we can do it. Come together as one in like this.

Dan Keller 17:09
Very good. Thank you. I appreciate it. Parkinson's Foundation ambassadors are trained volunteers who raise awareness, educate local communities, and share what resources the foundation can provide. They engage in community outreach and represent the foundation at local events and community groups. If you would like to consider becoming an ambassador, go to our website at Parkinson.org/Volunteer and fill out an interest form. As always, our PD information specialist can 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. If you'd like to leave feedback on this episode or to let us know what other topics you'd like us to cover, visit Parkinson.org/Feedback. Be sure to subscribe and rate us 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 month. Till then, for more information and resources, visit Parkinson.org or call our toll-free helpline at 1-800-4PD-INFO. That's 1-800-473-4636. Thank you for listening.

Bryan is a communications manager with USA Ultimate who, alongside Prajakti Barot, has helped establish a presence for the Foundation in Colorado Springs. Bryan's grandmother, Joan, and his father, Bob, were diagnosed with Parkinson's and remain an inspiration. Bryan hopes to help people with Parkinson's and their families to discuss and know they aren't alone.

Prajakti is a research assistant at University of Colorado-Anschutz and graduate student at University of Colorado-Colorado Springs. In three years with the Parkinson's Foundation, Prajakti is a regional board member, community grant reviewer, vice chair for her region, and organized three annual Community Walks. With a passion for research and community engagement, Prajakti hopes to develop neurological research, rural outreach, and much more across the U.S. and the world.