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

Dan Keller 0:02 Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller. At the Parkinson's Foundation, We want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research, the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Dan Keller 9:16 You find that, Rebecca?

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

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

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

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

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

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

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

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

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

Dan Keller 12:00 Never needed to use it?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

As always, our helpline information specialists are available to answer questions in English or Spanish about today's topic, or anything else having to do with Parkinson's, including finding your way around our newly redesigned website. News and updates about future events and resources are available by joining our email list at the bottom of our website's homepage. If you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. If you enjoyed this podcast, be sure to subscribe and rate and review the series on Apple Podcasts or wherever you get your podcasts.

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

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

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

Dan Keller 0:08

Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller. At the Parkinson's Foundation, we want all people with Parkinson's and their families to get the care and support they need.

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

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

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

Mark Groves 1:57

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

Dan Keller 2:19

Are some more prevalent in people with Parkinson's?

Mark Groves 2:23

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

Dan Keller 2:55

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

Mark Groves 3:00

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

Dan Keller 3:23

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

Mark Groves 3:27

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

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

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

Dan Keller 4:38

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

Mark Groves 4:48

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

Dan Keller 5:14

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

Mark Groves 5:26

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

Dan Keller 6:09

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

Mark Groves 6:17

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

Dan Keller 6:40

How do they affect people's lives?

Mark Groves 6:42

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

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

Dan Keller 7:24

Can they be controlled?

Mark Groves 7:27

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

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

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

Dan Keller 8:32

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

Mark Groves 8:37

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

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

Dan Keller 9:36

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

Mark Groves 9:40

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

Dan Keller 10:15

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

Mark Groves 10:25

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

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

Dan Keller 11:12

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

Mark Groves 11:16

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

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

Dan Keller 12:07

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

Mark Groves 12:23

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

Dan Keller 12:53

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

Mark Groves 12:55

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

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

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

Dan Keller 14:32

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

Mark Groves 14:47

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

Dan Keller 15:07

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

Mark Groves 15:11

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

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

Dan Keller 16:00

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

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

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

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

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

If you have questions or want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. To receive news and updates about future events and resources, you can opt into our email list at the bottom of our website's home page. And if you enjoyed this podcast, be sure to subscribe and rate and review the series on Apple Podcasts, or wherever you get your podcasts.

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

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

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

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

Dan Keller 0:02 Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller. At the Parkinson's Foundation, we want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research, the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow.

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

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

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

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

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

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

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

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

Dan Keller 4:36 Like what?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

As always, our helpline information specialists are available to answer questions in English or Spanish about today's topic, or anything else having to do with Parkinson's, including finding your way around our newly redesigned website. News and updates about future events and resources are available by joining our email list at the bottom of our website's homepage. If you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. If you enjoyed this podcast, be sure to subscribe and rate and review the series on Apple Podcasts or wherever you get your podcasts.

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

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

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

Dan Keller 0:08 Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller. At the Parkinson's Foundation, we want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research, the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Dan Keller 18:31 Great, thank you.

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

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

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

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

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

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

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

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

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

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