Dan Keller 0:02 Dan, 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.

When people think of Parkinson's disease, they often envision an elderly person with slowness of movement, short shuffling steps, or tremor, but the disease can and does occur earlier in life, and this is called Young Onset Parkinson's Disease, or YOPD for short. About 4% of cases in the US are of the young onset PD variety. Younger people will experience Parkinson's symptoms differently due to their unique life circumstances. In this first of two episodes on young onset Parkinson's disease, Dr. Bart Post of Radboud University in the Netherlands explains how young onset Parkinson's disease differs from later onset disease in terms of genetics, progression, treatment, and medication side effects. I first asked him about when the disease is considered young onset PD.

Dr. Bart Post 1:46 There's a lot of discussion about it at the moment in literature. They say it's under the age of 40 or 50 years old at the onset of the disease, and there is this separation between juvenile Parkinson's—that's an age at onset below 21—and then between 21 and 40, or 21 and 50, we call it young onset Parkinson's disease. So there's not a real hard cutoff age in literature. In the Netherlands, we say it's 50, but it's arbitrary to choose that age.

Dan Keller 2:25 What does the literature say about a genetic component for young onset Parkinson's disease versus later onset? And how would that impact going backwards family history and going forwards having a family?

Dr. Bart Post 2:40 I think genetics are especially in the young onset population interesting. I think the younger the onset, the higher the chances that it's genetic, especially in the juvenile Parkinson's. You see a lot of genetic causes, but I think we leave that out of our discussion now. So we are talking about the patients from 20 years, 30 years, and in the 40s, and what we see in more literature at the moment, that around 15 to 20% of this population—and again, when you're in your 20s, the chances are higher, but around 15 to 20%—have a genetic mutation. A lot of the mutations are GBA mutations, so there are risk mutations, and LRRK2 mutations, and then a lot of parkin mutations, so it's quite a group that have this genetic component.

The next step is when you look at your family to come, look at your children, then it's quite difficult. We do a lot of genetic counseling for our young onset patients, but genetic counseling is not easy, because for example, when you have the GBA mutation, then there's a 50% risk that you give it to your children, but if one of your children has it, there's only a 30% chance that they will develop Parkinson's disease during life. So, it's quite complicated. These genetics, we put in a lot of time to explain to patients before taking the test.

Dan Keller 4:17 So it sounds like it's a dominant gene, but with imperfect penetrance.

Dr. Bart Post 4:23 Yes, yeah, it's a risk gene. It's the same in LRRK2 mutations, it's around 40 to 50% chance of getting the disease. So, yeah, for the dominant genes it is. For these two dominant genes—and there are these like alpha-synuclein mutations, or the VPS35 that's rarer, and they have a higher penetrance. And then we have the recessive, the parkin, the PINK1, and DJ-1, but especially PINK1 and DJ-1 are rare. Parkin mutations are more frequent, and what you have, like a gene from your father and from your mother, that's not good, then you get the disease. If you're sick with, like, for instance, a parkin mutation, then you only give one gene that's not good to your children, so your children won't be sick. They're only a carrier. Especially dominant genes are difficult.

Dan Keller 5:20 When someone does develop young onset Parkinson's disease, how does it manifest? Is it different from what you would see at a later onset?

Dr. Bart Post 5:30 We looked at it, and there are several other studies in Europe and in the US, and what we see is that young onset, especially, they have much more dystonia at the onset. A lot of patients have dystonia, for instance, in the foot, and you see around between 10 and 20% of patients have early dystonia, and some of them, they have dystonia before they get their bradykinesia and rigidity. What's really typical, what we see in this patient group is exercise-induced dystonia of the foot, for instance, during exercise. So, when they do running, and after five or 10 ks of running, they get this inversion of the foot, and that can be the first sign of a young onset Parkinson's disease. You don't see that that often in later onset disease.

The other thing, we see less tremor in young onset PD, so tremor is more prevalent in the older age group. And after diagnosis you see a lot of delay in the diagnosis, more than in later onset, and we think it's because of the features it presents with. For instance, the exercise-induced dystonia, they are not recognized, and the second is that, oh, you don't expect it in a patient of 32 or 34, and in 65 it's a normal age to get PD, then you're triggered to think about it. Those are the biggest differences between presentation or diagnosing young onset PD, when compared to late onset PD.

Dan Keller 7:11 Are there implications for daily clinical practice? Do they respond differently to drugs, or are there other differences you have to take into consideration in the office?

Dr. Bart Post 7:22 Yes. After diagnosing young onset Parkinson's disease, then that comes to discussion about treatment. Well, as we all know, we have levodopa and dopamine agonists are the mainstay of therapy for Parkinson's disease, and what we know is that levodopa-induced dyskinesias are more prevalent in young onset patients. Under 40, after five years of disease duration and treatment with levodopa, almost all of the patients have levodopa-induced dyskinesia, as opposed to an older age at onset, for example, above 70 years, we know that after five years, only around 30% have this dyskinesia. You see a lot more levodopa-induced dyskinesia, and that's why there's a lot of discussion—as there still is in the world—discussion about should we start with levodopa in young onset, or do we prefer a dopamine agonist? And at the moment in the Netherlands, but I also know that, for instance, we all start with levodopa, and then under a low dose and slowly titrating, and then we combine it after a few years with a dopamine agonist. I think that's a main point in treating young onset PD in the beginning.

Dan Keller 8:48 What do you see in terms of progression, speed of progression, or when it may begin?

Dr. Bart Post 8:55 When I talk to young onset people—and I do it every day—I call it the paradox of getting young onset Parkinson's disease. When you get it at a young age, your progression rate is slower than when you get it at an older age. For instance, when you get it at age 35, you have a considerable chance that you will live with the disease for 20 to 30 years. When you get it at an age of 60 or 65, these chances are much lower. I think it's around 15 years normal progression till you really get problems like dementia, falling, and eventually you die of a complication. So, getting it at a young age means that the progression rate is slower, but you have to live with the disease for a longer time and be impaired a longer time. That's what we know from literature.

Dan Keller 9:47 How do younger onset people respond to exercise? Is it as recommended for them as for later onset?

Dr. Bart Post 9:57 Yeah, we recommend it to all the patients. And we did a study in the Netherlands, a trial for exercise, and we compared it to stretching. As far as I know, we didn't see any differences between younger and older age people in this cohort. So for me it's the same when I counsel patients; we say exercise is important for all. That's not a difference between late onset and young onset.

Dan Keller 10:26 Very good, I appreciate it. Next time we'll pick up on talking about some of the emotional issues and some of the counseling issues. So, thanks for being with us today. Thank you.

The Parkinson's Foundation website has many useful articles and other resources relevant to young onset PD. An excellent starting point is an article called Young Onset Parkinson's, and you can go directly to it on our website at parkinson.org/yopd. If you search the website on YOPD, you can find an article called Navigating the Challenges of Young Onset Parkinson's. Among other things, it emphasizes the importance of expert team-based healthcare to bring in the right practitioners to help slow progression and decrease symptoms. This is important for all people with PD, but especially for individuals with young onset Parkinson's disease.

Younger brains have greater neuroplasticity, meaning the ability to grow and change in response to therapy. Since people with YOPD have many years of life ahead of them, starting early with optimal care may result in benefits all along the way. In addition, the article links to information about dyskinesias and dystonia from common PD medications. Also included is a link to an article called 10 Helpful Young Onset Parkinson's Resources, which discusses or leads to further targeted information. Finally, for even more resources, take a look in our library at parkinson.org/library. There's a drop-down topic menu at the bottom of which is YOPD.

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. Thank you.

Bart Post, MD was born on March 30, 1972 in Grootebroek, the Netherlands. He obtained his medical degree in 1999 at the University of Maastricht (with honors). In 2000, he started his training as a resident in Neurology at the Academic Medical Centre in Amsterdam, which he completed in December 2008. In 2002, he started a research project on ‘Prognosis in Parkinson’s disease’ that resulted in a PhD thesis in 2009. In 2006, he started a master of Sciences (MSc) education in clinical epidemiology at the EMGO institute in Amsterdam.

In 2009, Dr. Post was certified as a clinical epidemiologist. Since 2010, he has been working as a movement disorder neurologist in the Parkinson Centre in the Radboudumc in Nijmegen (head: prof. dr. B. Bloem). He is part of the steering committee of several large Parkinson trials: the LEAP-trial (Early administration of levodopa in de novo PD); and the CHEVAL-trial (administration of acetylcholine inhibitors in PD patients with hallucinations) and the Fair-Park trial (Iron chelation in early Parkinson’s Disease).

Within the Movement Disorders he is a member of the Multiple System Atrophy (MSA) Study Group. Dr. Post has organized several masterclasses on parkinsonism and movement disorders in the Netherlands. He is a member of the examinations committee of the Dutch neurology Society. He is also a member of two Dutch guideline committees: 1. guideline diagnosis and management of Parkinson’s disease 2. guideline diagnosis and management atypical parkinsonism. In 2018 he was a visiting member of the movement disorders group of Victor Fung in Sydney, Australia.

At the department of neurology of the Radboudumc, he is chair of the residency program for neurologists and, in the Radboudumc, he is co-chair of the central committee for residency programs. Dr. Post is co-director of the Parkinson Foundation Center of Excellence Radboudumc, Nijmegen, the Netherlands. He has a special interest in patients living with Parkinson’s disease at a young age and is heading a program of co-creating care for this patient group.

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.

Eliminating all daily factors that cause stress is unrealistic, but there is a way to cope and ease this stress. The key is to mentally put aside those outside forces and to become more in touch with oneself in the moment—the sensations and feelings right then, without judging or interpreting them; they are what they are. A widespread technique for achieving this sort of insight, leading to stress reduction and more inner calm, is the practice of mindfulness meditation. It can be learned through in-person or online courses, community programs, or right on the Parkinson's Foundation website as part of the PD Health at Home program.

In this episode, Crista Ellis, community program manager with the foundation and a certified yoga and meditation teacher, explains what mindfulness meditation is, what mental, emotional, and even physical benefits it can provide to people with Parkinson's disease, and how to get started with it. She says that mindfulness meditation aims to identify stresses as a first step to coping with them.

Crista Ellis 2:01 Stress is every day for the general public, and it's even more so with people with Parkinson's. When you try to incorporate a mindful approach to your stress, you're really examining what's making you feel stressed, what your perceived stress is, and once you understand where that stressor is coming from, you become aware of it. Another word that we use for mindfulness is awareness. You're able to kind of embrace that stress from a different perspective.

Dan Keller 2:30 Is stress particularly harmful in Parkinson's? Can it exacerbate motor or non-motor symptoms?

Crista Ellis 2:38 Yes, actually it can. In Parkinson's disease, stress can cause people with Parkinson's to have more anxiety. It can even exacerbate moods of depression, and it can also start to influence people's sleep with Parkinson's. It can make their tremor more present, and it can also cause more bradykinesia—what we call slowness of movement—and also feeling kind of stuck. So, some people with Parkinson's have this freezing gait, and stress can really influence all those symptoms of Parkinson's disease.

Dan Keller 3:14 I take it care partners also experience stress from their responsibilities, so when we're talking about mindfulness practices, I take it that applies to them too.

Crista Ellis 3:26 Absolutely. So care partners are notorious for putting other people first, especially their loved one living with Parkinson's, and when you use mindfulness in a care partner's position, they're able to kind of take a step back at what they're doing for others and take a few moments just for themselves by using mindfulness meditation.

Dan Keller 3:49 Why is mindful movement important for Parkinson's?

Crista Ellis 3:54 Movement is an essential treatment approach for people with Parkinson's, and when you move mindfully—so mindful movement is breath awareness, breathing as you move, very fluid movement—mindful movement not only stimulates the physical exercise of Parkinson's, but also the cognitive side of treatment for people with Parkinson's. So when you adopt the two—physical activity and also mental activity—it can really benefit people with Parkinson's disease.

Dan Keller 4:28 You are involved in the Mindfulness Mondays program, which has been pretty successful on the Parkinson's website. So, how did that begin?

Crista Ellis 4:39 Right in the wake of Covid, March 2020, my team and I were kind of exploring how we can continue to educate and empower our Parkinson's communities through a virtual world, because we weren't able to see each other in person. So, with my background in yoga, I immediately was inspired to teach meditation or educate people about meditation and its benefits for people with Parkinson's in our community, and that became Mindfulness Mondays, a program that we host every Monday for our global Parkinson's community.

Dan Keller 5:12 How's it done?

Crista Ellis 5:14 Extremely well. At the very beginning, you know, it was slow to take off, just because of the virtual, I would say hesitation to embrace the virtual world, our Parkinson's community. Just recently we've really skyrocketed in participation numbers, and I think people have really become quite fond of our communal approach. So it's not necessarily a lecture presentation kind of style; people who come to our Mindfulness Mondays have a space to be heard, a space to be seen, and a space to really be a part of their Parkinson's community, while being in the safety of their homes.

Dan Keller 5:53 Have people reported back to you any benefits that they've seen? Is there anything specific?

Crista Ellis 6:00 Absolutely, we've heard some very specific feedback from our community as far as feeling more grateful for their Parkinson's disease, which is kind of contradictory, right? But people are identifying that their Parkinson's disease is giving them a different understanding of what mobility means and how to care for one another.

We've also found that the care partners in our group are very thankful for the space to be able to have some time for themselves, while also being able to connect with other care partners. People around the globe are finding that Parkinson's disease is not an individual dis-ease—is what I like to call it—but they're seeing that many people around the world are suffering with some of the same problems that they do themselves, and it gives them a sense of acceptance.

Dan Keller 6:52 I know a couple of yoga instructors, and since the pandemic began, they've really expanded their classes and their practice all across the country, which they hadn't expected. They just wanted to reach the local community. We think of the Parkinson's Foundation as operating mainly in the US, although there are centers of excellence outside the US. But have you attracted people from outside the US?

Crista Ellis 7:18 Many, yes. In fact, we, I think we are touching now 13 countries outside of the United States, including Canada and Mexico, and places all the way across the world, in Australia, New Zealand, Italy, and Spain, just to name a few.

Dan Keller 7:36 Mindfulness really can be done anytime, anywhere, almost. So, do people do it outside of, say, Mindfulness Mondays? Have they adopted a practice on a regular basis, or whenever they feel they need it?

Crista Ellis 7:50 Absolutely. So, I think the first step to adopting a mindful practice, if you're interested in learning about it, is to attend a group such as ours that kind of holds you accountable for that time and that space. Once you kind of become comfortable with a practice of mindfulness, you can carry that on to every day, any time of the day that you need it. You don't need a prescription for mindfulness. What's beautiful about having this awareness practice in your life is you can take five minutes just to connect to your breath and recenter your thoughts and kind of come back to the point of action, or a moment just to slow down for yourself.

Dan Keller 8:29 You said you don't need a prescription for it, but in terms of Parkinson's symptoms, have people invoked mindfulness when they do experience an exacerbation of a symptom? I mean, can it be used almost therapeutically?

Crista Ellis 8:45 Absolutely. I think a really significant example of how mindfulness can be used is when a person with Parkinson's is experiencing, say, freezing of gait. They feel like they cannot move and they're stuck—their feet are stuck almost like they're in mud—and you take that moment and just come into a state of awareness or mindfulness, and you take a few deep breaths, and you practice mindfulness, and then you're able to move again. So that is a very good example of how mindfulness can relieve the symptoms of Parkinson's disease.

Dan Keller 9:20 For people who are new to this, can you just describe what you mean by mindfulness? What does it encompass?

Crista Ellis 9:28 Sure, so mindfulness is a practice of being aware of what surrounds you—that can be sights, smells, tastes, sounds, thoughts—and trying to become aware of these things without judgment, and that's the caveat there: without judgment. So we're becoming aware of our lives in this present moment without judgment, so not wishing things were any other way, or wishing that we had something more or different, but just being aware of what we do have and finding a sense of gratitude and all the abundance in our lives.

Dan Keller 10:02 Why is it called a practice? Does it require developing expertise, or is there a different meaning to that?

Crista Ellis 10:10 It's interesting that this question comes up regularly. Mindfulness is a practice because it isn't necessarily easy to do. Our minds are naturally thinking machines—we have thoughts all the time in the brain, or what I like to say is our inner voice is constantly talking. So we practice mindfulness to refocus and bring our awareness back to our intention of the practice, whether that be focusing on your breath, focusing on something that you're grateful for, or focusing on a mantra. So they call it a practice because the mind does race, and when we find our minds racing, we come back to our point of focus. So that's why we call it a practice. No, it's never a perfect exercise. We're always constantly practicing.

Dan Keller 10:57 I know when people have a particular problem in mind, whether it's family or financial or their business or something, you tend to fixate on it. Does mindfulness help them get away from that fixation and really put things in perspective?

Crista Ellis 11:16 It can. Yes, and I'm careful to say about fixation, because rumination and fixation is something that is common with people with Parkinson's disease. When you're in a place of mindful awareness, it can offer an opportunity to kind of accept what is and let go of what is not. So, when we talk about fixation and rumination with Parkinson's disease, having a mindful approach to the daily challenges—or monthly, or yearly, even, challenges of our lives—can really give us a sense of calm when we approach it with mindfulness.

Dan Keller 11:55 Like any exercise, does it become more natural the more you do it? Is it easier to get into that mindset when you want to?

Crista Ellis 12:06 Absolutely. You know, with anything new, there's always this sense of anxiousness or feeling not able to achieve, and so with anything novel, especially people with Parkinson's, we have to find that courage to try something new that might be really outside of our comfort zone. So when you're challenged physically, it's one thing, but when you're challenged mentally—when someone asks you to sit with your thoughts—it's basically exercising the brain muscle. The brain is a muscle, in fact, and when you use mindfulness, we are exercising certain muscles of the brain to create new patterns of thought, so as you practice more, it does get easier.

Dan Keller 12:50 Is it easy or difficult to maintain? Do you kind of have to remind yourself at some point, like "mindfulness would be helpful right now"?

Crista Ellis 13:00 Sure, I think it really depends on the person and what you're going through in life at the time. Mindfulness is a tool that we can pull out of our Parkinson's toolbox, but it is important to have little reminders set around the house, on the phone, or some way to remind us to be mindful in the activities that we decide to participate in. So for some of us it might be easy to maintain that practice. If you're a more routine individual, it might be easier for us to maintain our mindful meditation, and if not, we might just need a little extra help to support our mindfulness practice. And that's why we have our Mindfulness Mondays every week.

Dan Keller 13:41 Is the Mindfulness Mondays program the way to get into it, if someone wants to, or how do people start?

Crista Ellis 13:50 Sure, so there's lots of ways to get started with mindfulness, mindful meditation, or awareness, and if you do have Parkinson's disease, or you're part of the Parkinson's community, I would certainly encourage you to try our Mindfulness Mondays. There are apps that people can download for free to start their meditation journey. There's all kinds of videos and guides online through YouTube that they could start, but if you're really looking to be a part of a community and be present with that community, I would certainly encourage trying Mindfulness Mondays with the Parkinson's Foundation.

Dan Keller 14:26 Is there anything we've missed or important to add or interesting to let people know about mindfulness?

Crista Ellis 14:34 I think it's important to just note that there has been research on mindfulness and its effects on Parkinson's disease. There's a lot of research that indicates alleviating a lot of the Parkinson's disease symptoms that are motor and non-motor, and there's many benefits that mindfulness can bring to the quality of life for everyone. So everyone has access to this tool at any time during their day, and at any time during their Parkinson's journey.

Dan Keller 15:05 Do you find that the person with Parkinson's and their care partner do it together, or is this sort of an—even though communal—individual practice?

Crista Ellis 15:16 I would say it's a mixed end. We have couples that join together, we have grandmothers and their granddaughters join. We have individuals with Parkinson's. We have advanced people with Parkinson's. We have recently diagnosed people with Parkinson's join us. We have care partners join us solely by themselves. We have allied health professionals in the Parkinson's field joining us. So, really, it's a diverse community of people with Parkinson's that join us every Monday.

Dan Keller 15:44 When does it occur on Mondays? Is there a specific time? Do you have to be there live?

Crista Ellis 15:51 You don't have to be there live. I'll start with that. We do record each session, and they are posted to our YouTube channel. If you would like to join us live, you'll visit parkinson.org/pdhealth and sign up for Mindfulness Mondays, and we go live at 1 o'clock p.m. Eastern time, just about every Monday. We do reserve one Monday for our Spanish-speaking communities, but I'll always give them an update of the Mondays that we won't be meeting live.

Dan Keller 16:20 Very good. I hope some people take advantage of it who are not yet trying mindfulness practices. So, thanks for all the information. It's been great.

For more on mindfulness and our Mindfulness Monday sessions, visit parkinson.org/pdhealth. You can also search our site at parkinson.org for Mindfulness Mondays and Stress for more information and suggestions. There you'll find resources for both people with Parkinson's and for care partners, including links to many previous podcasts. To search specifically for past podcasts on mindfulness or coping with stress, there's a search box on the podcast page at parkinson.org/podcasts, just below the listing of the most recent podcasts.

As Crista mentioned, Mindfulness Mondays—just one part of our PD Health at Home program—happen live every Monday at 1 p.m. Eastern time. The live events are free but require registration. They're presented on our website using Zoom, with instructions for Zoom appearing after registering, or you can find a guide to using Zoom at parkinson.org/zoom. The sessions are later posted to YouTube if you want to access them on your own schedule.

Besides our online events, live local events happen in many communities. Our helpline information specialists can see if there are any near you. You can reach them at 1-800-4PD-INFO. 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 1-800-473-4636. Thank you for listening. Thank you.

Crista Ellis was born and raised in the suburbs of Cincinnati, Ohio. She graduated from Miami University of Oxford with a degree in psychology. She is a certified yoga and meditation educator and a community program manager with the Parkinson’s Foundation. Crista leads the Parkinson’s Foundation international Mindfulness Monday program where she guides meditation practices for people with Parkinson’s, care partners, allied professionals, and more across the world. She joins us today to share with us about the benefits of cultivating a mindfulness practice when living with or affected by Parkinson’s disease.

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.

Restorative sleep is essential for optimal physical, mental, and emotional functioning, but sleep problems are remarkably common among people with Parkinson's disease, affecting up to 90% according to today's guest, sleep specialist Dr. Aleksandar Videnovic of Massachusetts General Hospital. These problems are some of the most troubling in terms of non-motor symptoms and can seriously affect overall quality of life. Many factors can interfere with sleep, including anti-Parkinson's medications and the disease pathology itself; for example, severe tremors or the frequent nocturnal need to use the bathroom may awaken people, while pain and the physical inability to easily turn over in bed can cause profound discomfort.

Dr. Videnovic says that among the many sleep disturbances, insomnia, excessive daytime sleepiness, and REM sleep behavior disorder are among the most common. REM stands for rapid eye movement, those specific parts of the sleep cycle in which one's eyes move rapidly under the eyelids but do not send any actual visual information to the brain. This is the phase of sleep in which vivid dreams usually occur, but the body's muscles are normally paralyzed so that the person does not physically act out those dreams. When we spoke, he set the stage by describing the magnitude of this challenge.

Dr. Aleksandar Videnovic 2:10 Disorders of sleep and alertness are extraordinarily common in the Parkinson's disease population. I would say that, based on my clinical experience and corroborated by the scientific literature written on this topic, almost every patient with Parkinson's disease will, at some point throughout the course of their disease, experience one or another type of sleep disturbance. Therefore, this represents a very common and frequently challenging non-motor manifestation associated with Parkinson's.

Dan Keller 2:45 It is a very basic question, but why is sleep so fundamentally important, and what exactly happens to the body and brain if there are chronic sleep disturbances?

Dr. Aleksandar Videnovic 2:53 Well, obviously, we spend almost one-third of our lives sleeping, so it has to possess vast evolutionary significance, right? From an evolutionary perspective, sleep as a core bodily function has been incredibly well preserved across species; all animals need to sleep, and humans need to sleep as well. Simply put, you cannot survive without sleep. Therefore, from this really broad perspective, sleep is mandatory for basic survival and for optimal daytime human performance.

In Parkinson's disease specifically, sleep is particularly important as we understand the profound neurological benefit of a good night of rest. This is something well-recognized in our field as the "sleep benefit" that patients with Parkinson's report. After having a solid, consolidated night of sleep, patients notice that their Parkinson's motor symptoms are much easier to manage the following day. A lot of patients will even report that their clinical responsiveness to their dopaminergic medications the next day is substantially better if they had high-quality sleep the night before. So, while sleep is relevant for everyone, it carries a very particular significance and an essential therapeutic place in the lives of patients who suffer from Parkinson's disease.

Dan Keller 4:11 What are some of the most common types of sleep disturbances that people experience with PD?

Dr. Aleksandar Videnovic 4:17 When we discuss disturbed sleep in Parkinson's disease, I like to separate these clinical issues into two large, distinct categories. One comprises the difficulties that emerge during the nighttime—meaning primary nighttime sleep disruptions—and the other comprises disturbances that manifest during the daytime, specifically excessive daytime sleepiness. These daytime symptoms may or may not be directly linked to the specific disruptions occurring during the night. Those are the two very broad categories of disruptions within the sleep-wake cycle in Parkinson's.

Dan Keller 4:49 What are some of the long-term outcomes of these disruptions? For instance, are there cognitive or behavioral effects during the daytime if a patient's sleep is chronically disturbed at night?

Dr. Aleksandar Videnovic 4:59 Yes, disturbed sleep at night has a multitude of negative consequences the following day. Obviously, if someone does not sleep well, that individual feels sleepy, fatigued, and exhausted the next day. They are often unable to concentrate, focus, or function well in a mental capacity. As I mentioned, a good night of sleep can have direct, positive effects on the motor function that patients exhibit the next day, and conversely, after a poor night of sleep, a patient's motor symptoms can worsen. Furthermore, our mood is significantly degraded following poor sleep. Patients with Parkinson's disease frequently struggle with mood disorders, such as depression or anxiety, to begin with, and poor sleep severely aggravates those neuropsychiatric symptoms.

Dan Keller 5:43 One sleep disturbance that seems to emerge remarkably early—even long before people are officially diagnosed with PD—is REM sleep behavior disorder, or RBD. How early can that happen, and does it typically persist once people are diagnosed with Parkinson's?

Dr. Aleksandar Videnovic 5:59 REM sleep behavior disorder is a primary sleep pathology that belongs to a group of sleep disorders known as parasomnias, which is simply a clinical term for various abnormal behaviors or movements that can occur during sleep. In this particular condition, the disturbance emanates directly from the REM stage of sleep. Normally during REM sleep, our brain blocks muscle activity, causing temporary paralysis so we don't move. In RBD, that muscle paralysis is lost, causing patients with Parkinson's—or even otherwise healthy individuals who do not yet have Parkinson's—to physically act out their dreams.

In summary, it has been robustly recognized that individuals who present with isolated REM sleep behavior disorder are at a substantially increased risk of developing Parkinson's disease or related alpha-synuclein neurodegenerative disorders later in life. This sleep disorder can precede the onset of classic Parkinson's motor symptoms by years, or even decades, and it certainly remains present throughout the course of the disease as well. Therefore, identifying RBD is clinically vital because it serves as an early prodromal marker indicating that the underlying neurodegenerative process may have already started in the brain. It is often just a matter of time before the cardinal motor symptoms of Parkinson's disease emerge and a formal clinical diagnosis can be established.

Dan Keller 7:35 It sounds like people struggle with sleep disturbances quite a bit in Parkinson's disease, which drastically impacts their function and quality of life. But do you find that patients actually bring these issues to the attention of their neurologists enough during routine appointments?

Dr. Aleksandar Videnovic 7:50 I would say that disturbances of sleep and alertness are heavily underreported overall by our patients. At the same time, they are also frequently underrecognized by physicians and other healthcare professionals. It is therefore critical that healthcare providers, patients, care partners, and family members all understand that paying significant attention to the quality of sleep can have massive therapeutic rewards and heavily lessen the overall burden of Parkinson's disease. We must all educate ourselves to pay closer attention to it.

Dan Keller 8:31 Given that there are quite a number of distinct reasons for poor sleep, can you categorize some of the modern medical and behavioral treatments that are currently available?

Dr. Aleksandar Videnovic 8:43 Because there are so many different root causes for disturbed sleep at night, selecting an appropriate intervention is entirely dependent on establishing an accurate, specific diagnosis of the underlying sleep problem. Each distinct sleep disturbance will have its own tailored subset of treatments.

That being said, the absolute starting point for improving and treating any sleep disorder in Parkinson's disease is to understand the core principles of good sleep hygiene and apply those principles rigorously to our daily routines to maximize the biological chance for consolidated sleep. Beyond establishing healthy sleep hygiene habits, there are specific, tailored treatment approaches. These span from targeted cognitive behavioral therapy for insomnia (CBT-I) to optimize sleep-wake cycles, to the utilization of Continuous Positive Airway Pressure (CPAP) therapy for patients diagnosed with obstructive sleep apnea, to a variety of pharmacological interventions. Medications can be carefully prescribed to manage specific refractory issues like chronic insomnia, severe REM sleep behavior disorder, or restless legs syndrome.

Dan Keller 10:11 Is it only the total duration of sleep that matters? How do you clinically evaluate the quality of a patient's sleep to know if they are truly getting restorative rest?

Dr. Aleksandar Videnovic 10:19 What matters most when we analyze sleep metrics is a combination of both quantity and quality. This is an excellent question because, certainly, we want patients to have enough total sleep, but we also require high-quality sleep architecture.

It is important to emphasize that total time spent in bed does not equate to true sleep duration. Frequently, especially among Parkinson's disease patients, an individual might spend up to 10 hours resting in bed, but a large portion of that time is actually spent tossing, turning, and being awake in a state of sleep fragmentation. In general, large epidemiological studies investigating optimal sleep duration suggest that we should aim for anywhere between six and nine hours of sleep per night; getting consistently less than six hours or routinely more than nine hours is generally associated with poor health outcomes.

At the same time, we want that sleep to be consolidated and uninterrupted. It is much easier to quantify the exact duration of sleep than it is to perfectly define what "good quality" sleep means. Clinically, we look for uninterrupted sleep that allows the patient to wake up feeling genuinely refreshed, indicating they have achieved sufficient deep slow-wave sleep and REM sleep, which are critical for memory consolidation, neurological repair, and overall well-being. Both quantity and quality are absolutely essential.

Dan Keller 11:46 You mentioned earlier that in REM sleep behavior disorder, people physically act out their dreams. Does this action inherently disrupt their own sleep, do they realize they are doing it, and how does it typically impact the bed partner?

Dr. Aleksandar Videnovic 11:59 REM sleep behavior disorder absolutely disrupts the sleep of the individual experiencing it, but it frequently takes an even greater toll on their bed partner. In addition to degrading overall sleep architecture, RBD poses severe physical safety challenges. Because these dreams are often vivid, intense, or violent, acting them out exposes both the patient and their bed partner to a high risk of physical injury.

For example, I have had a number of patients report that during a vivid dream, they end up violently lurching out of bed and falling hard onto the floor. Alternatively, if they are dreaming that they are being threatened and need to defend themselves, they may start kicking, punching, or fighting with their bed partner. The bed partner is then suddenly awakened in the middle of the night by a physical assault and can be substantially hurt. RBD severely compromises the sleep quality of both individuals and introduces an acute risk of trauma due to these dream enactment behaviors.

Dan Keller 13:10 What is your professional take on daytime naps? Are they generally good, bad, or does it depend on how they are utilized?

Dr. Aleksandar Videnovic 13:16 Napping is a very interesting concept when we discuss overall sleep health. I believe that naps, when employed appropriately, can be highly beneficial to our patients with Parkinson's disease.

What do I mean by employing them appropriately? In general, whether an individual has Parkinson's or not, we want to avoid prolonged daytime naps. We want to avoid naps that last an hour, two hours, or longer, because accumulating that much sleep debt reduction during the day directly destroys our sleep drive and interferes with our ability to fall and stay asleep at night. We also want to strictly avoid napping late in the afternoon or evening, close to our primary bedtime, for the same reason. However, if a patient takes a short, structured nap of about 30 to 40 minutes in the middle of the day—specifically when our internal biological alerting signal experiences its natural circadian dip after lunch, typically between 1:00 PM and 3:00 PM—these naps can be incredibly refreshing and restorative. I frequently advocate for and advise patients to take a brief midday nap if their schedules permit, as long as it remains strictly time-limited.

Dan Keller 14:39 Looking to the future, where is the field going, and what are some of the most exciting research directions right now?

Dr. Aleksandar Videnovic 14:43 There are a lot of exciting research directions underway regarding sleep and wakefulness in Parkinson's. We are actively trying to develop novel therapeutics, which include both innovative pharmacological agents and advanced non-pharmacological methods. For example, the utilization of photomodulation and light therapy to optimize circadian rhythms is a major non-pharmacological focus. Our research group conducts a great deal of work in this specific area, alongside other teams globally.

Research is also progressing toward a deeper understanding of the underlying pathophysiology and the specific brain mechanisms driving sleep impairment in Parkinson's. A novel and highly exciting avenue is our expanding understanding of how the circadian system—our internal biological timing mechanism—becomes impaired by the disease. We all have internal master clocks situated deep within the brain, in the suprachiasmatic nucleus, and our investigations have demonstrated that there is clear structural dysfunction of that internal clock in Parkinson's; the clock is simply not ticking as it should. We are exploring this further to design targeted chronotherapeutic interventions based on those findings.

Finally, there is an immense amount of clinical research focusing on REM sleep behavior disorder. Because RBD serves as a reliable prodromal marker that precedes the motor onset of Parkinson's, it offers a crucial window for neuroprotective trials. Once we validate reliable disease-modifying agents that can halt the progression of neurodegeneration, it will be plausible to deploy these therapies early in individuals who present with isolated RBD before they ever develop the motor signs of Parkinson's. This allows us to maximize our chance of clinical success by arresting the neurodegenerative process earlier, before it has taken a more substantial, irreversible toll on critical brain cells. I believe that is one of the most revolutionary areas of research in the entire field.

Dan Keller 17:02 It is fascinating that you bring that up. We previously hosted a podcast episode with Dr. Robert Hauser discussing the "golden year" of Parkinson's—that crucial early window before a patient ever starts dopaminergic medication—focused on identifying disease-modifying therapies that can slow down clinical progression. It sounds like REM sleep behavior disorder might serve as a cardinal, pre-diagnostic sign that someone is entering that exact neurodegenerative path, even before they meet the official motor criteria for a diagnosis.

Dr. Aleksandar Videnovic 17:29 Absolutely, that is precisely why the systematic, rigorous study of REM sleep behavior disorder is so critical. It allows us to accurately identify individuals who are at an ultra-high risk of developing Parkinson's disease during the earliest stages of neurodegeneration. If we can apply targeted neuroprotective interventions at that prodromal phase, we can be vastly more successful in arresting the underlying disease process compared to waiting until the degeneration has advanced to the point where classic motor signs—such as resting tremors, bradykinesia, and rigidity—finally emerge. Our biological window to stop the disease from progressing is much wider during these early sleep-manifested stages than it is later on.

Dan Keller 18:16 And finally, Aleksandar, do you have a definitive take-home message in a nutshell for people living with Parkinson's or their care partners who suspect they are dealing with a sleep disturbance?

Dr. Aleksandar Videnovic 18:27 My primary take-home message is that we should all pause and proactively analyze our sleep. We need to take the time to ask ourselves: Is my sleep truly okay? Am I getting enough hours of rest? We must also ask our bed partners how we sleep, because we are inherently unaware of our own nocturnal movements, vocalizations, or behaviors while we are unconscious.

If you identify any issues, pay significant attention to them and take the time to discuss them openly with your Parkinson's clinician, or seek a formal evaluation from a specialist in sleep medicine. It is an absolute certainty that by improving your nighttime sleep quality and your daytime alertness, you will drastically improve your overall quality of life and daily functioning. Parkinson's disease symptoms become significantly less burdensome when backed by a good night of consolidated sleep. Sleep truly is an essential pillar of health; we frequently take it for granted, but we shouldn't, because a lot can go wrong during the night without us consciously recognizing it. Let's look at how we sleep, optimize this vital function that nature has granted us, and use it to live the best lives possible.

Dan Keller 19:45 Tremendous advice. Thank you, Dr. Videnovic, for sharing your expertise and providing such helpful, actionable information on a problem that impacts so many.

Because sleep disorders are incredibly prevalent in Parkinson's disease, our website at parkinson.org offers extensive, evidence-based information and resources on the subject. Simply search for "sleep" to find educational fact sheets and guides covering both behavioral modifications and medical approaches to achieving better rest.

Those specific, evidence-based behaviors that one can adopt to promote consolidated rest are known as sleep hygiene. If you search for that term in our digital library at parkinson.org/library, you will find an excellent, practical guide titled Tips for a Good Night's Sleep: Sleep Hygiene. Additionally, our dedicated "Sleep Disorders" portal features comprehensive tips for behavior changes you can implement during the daytime, alongside targeted adjustments for your nighttime environment.

Our digital archive holds many other valuable resources on sleep. A fantastic starting point is our educational book titled Sleep: A Mind Guide to Parkinson's Disease, which is available for online reading, print ordering, or direct download to your Kindle device. For our Spanish-speaking community, the library features tailored multimedia content, including an educational video and written booklet titled Descanso y Sueño.

You can also watch the full expert briefing that Dr. Videnovic presented for the foundation, titled Sleep and Parkinson's. Furthermore, we provide a specialized clinical fact sheet covering medications for non-motor symptoms, which features dedicated sections detailing pharmacological options for treating excessive daytime sleepiness and primary sleep disorders.

In closing, remember two critical takeaways: first, engaging in regular, structured exercise has been proven to significantly improve overall sleep quality; second, always report any sleep disruptions to your movement disorders physician or healthcare provider. If you do not actively bring it up, they may not know to ask, and reporting it is the only way to secure the specialized help you deserve.

As always, if you need immediate, personalized assistance, the Parkinson's Foundation Helpline is here for you. Our bilingual information specialists can answer your questions in English or Spanish regarding sleep modifications, exercise, or any other facet of Parkinson's care. You can reach them toll-free at 1-800-4PD-INFO. To ensure you never miss future educational webinars, local community resources, or research updates, you can join our email registry at the bottom of our homepage.

If you would like to leave feedback regarding this episode or suggest future topics, please visit parkinson.org/feedback. If you found this podcast valuable, please take a moment to subscribe, rate, and review Substantial Matters on Apple Podcasts or your preferred streaming platform.

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 will be back with a brand-new episode every two weeks. Until next time, for additional information and expert resources, please visit parkinson.org or call our helpline at 1-800-4PD-INFO, which is 1-800-473-4636. Thank you for listening.

Aleksandar Videnovic, MD, MSc is an Associate Professor of Neurology at Harvard Medical School, Director of the Division of Sleep Medicine at MGH, and Director of the MGH Program on Sleep, Circadian Biology and Neurodegeneration. He completed Neurology residency at Northwestern University Feinberg School of Medicine in Chicago, followed by fellowships in Movement Disorders at Rush University and Sleep Medicine at Northwestern University. Dr. Videnovic holds a Master of Science degree in clinical research. His clinical activities include the diagnosis and treatment of a wide spectrum of movement disorders and co-existent sleep dysfunction associated with these disorders. Dr. Videnovic directs a clinical and research program on REM Sleep Behavior Disorder at MGH. His research programs are focused on the interface of sleep, circadian biology and neurodegeneration, as well as on clinical trials in sleep and neurodegenerative disorders, with an emphasis on Parkinson's disease. Dr. Videnovic serves on numerous scientific committees within professional organizations, including the American Academy of Neurology, the American Academy of Sleep Medicine, the International RBD Study Group and the Parkinson Study Group.

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.

In this podcast episode, Dr. Jonathan Lessin candidly describes his journey as a cardiac anesthesiologist diagnosed with young-onset Parkinson's disease. Anesthesiology requires manual dexterity to insert breathing tubes and intravascular catheters, to administer drugs, and to operate very technical devices. An anesthesiologist also needs stamina for long operations, often more than one in a day. After several years of medical school and postgraduate training, and early in his career, Jonathan suspected something was wrong, and his suspicions were correct.

After his Parkinson's diagnosis, he was able to work some more years, always keenly aware of patient safety. Eventually, he himself underwent surgery to implant a deep brain stimulator, giving him more time to practice, but eventually he knew it was time to stop. When we spoke, he described his journey with Parkinson's, how it affected his practice of cardiac anesthesiology, and how he lives his life now. What were your first symptoms or what kind of raised your suspicion?

Dr. Jonathan Lessin 2:06 Well, I was having trouble with my right side. My hand was weak and I had trouble pouring Coke, and I had trouble scooping ice cream, and that's what brought me to the doctor.

Dan Keller 2:19 How long did it take to get a diagnosis? Many people, it takes a long time before it's zeroed in on.

Dr. Jonathan Lessin 2:26 Well, the person I saw was actually a friend of mine. He was actually a neurologist, and he told me that he had been watching me for years, and he knew that I had Parkinson's disease, because I guess Parkinson's disease is a clinical diagnosis.

Dan Keller 2:43 But he never let on?

Dr. Jonathan Lessin 2:45 But he never let on, and so when I asked to see him, he told me, "I know what's wrong with you," and I said it was a relief, because I now have something to deal with.

Dan Keller 2:58 Right. How old were you at the time?

Dr. Jonathan Lessin 3:01 I was 38 years old.

Dan Keller 3:04 And how long did it take you to decide on deep brain stimulation?

Dr. Jonathan Lessin 3:11 I was on medication, which actually helped me a lot for five years, and I was always waiting for the meds to kick in and waiting for them to wear off. I knew about deep brain stimulation because I had done anesthesia for it many times, and I asked my doctors if I'd be a good candidate for that, and they said, "Yes, you'd be a great candidate for that."

At the same time, I was freezing in the operating room, I was having trouble with movement, and I was asked to take an involuntary leave of absence for patient safety. I was asked to get a fit-to-work test at a non-MedStar facility, and I went to Hopkins, and he recommended that I look into DBS.

Dan Keller 3:59 Did you work after getting DBS?

Dr. Jonathan Lessin 4:02 Yes, I worked for four years. The DBS was fantastic. It was like the meds that were always on, and you could dial it up or down, so if you had dyskinesias, you could dial it down, and the dyskinesias would go away.

Dan Keller 4:16 Did you have realistic expectations for DBS—what it could do and what it doesn't do?

Dr. Jonathan Lessin 4:24 I think so. I was waiting for it for so long, I was always saying, "When I get my wires, I'll be able to do this and that." They told me that it wouldn't help my balance, but it does help my balance, because I'm able to move my feet more quickly beneath me to catch myself if I'm about to fall. And I was able to ski with DBS. I was able to Ride the Rockies, which is a week-long, 90-miles-a-day bike ride through the Rocky Mountains. I was able to rock climb.

Dan Keller 4:55 I read your piece for the Davis Phinney Foundation, and you said when you were riding, you could adjust your DBS as the hill climbs and the terrain needed.

Dr. Jonathan Lessin 5:06 Yeah, I reached back and grabbed my remote. If I had a hill coming up, I would increase the amplitude, which would make my face contort, but it made my legs move much easier, and I would crank it up, and I would be able to cruise up the hills.

Dan Keller 5:20 I guess there might have been a little bit of a surprise in that it helped your balance. Were there any other things you didn't expect that occurred?

Dr. Jonathan Lessin 5:29 Basically, when I woke up in the morning, I was able to get out of bed more easily. I was able to do my activities of daily living around the house more easily. It kept my off-times to 80% on, so I didn't freeze anymore. The only things I wasn't able to do is scuba dive and ride roller coasters. Those are the two things that I like to do.

Dan Keller 5:53 But you were back to skiing moguls.

Dr. Jonathan Lessin 5:57 I was back to skiing moguls. It wasn't like I was 25 again; I was 43. I could ski my favorite run in Vail, Highline, which is a mile-long mogul run. I could ski it once instead of 10 times like I used to when I was younger.

Dan Keller 6:16 I guess the handwriting on the wall for your career was really kind of imposed by the employer, is that right? Or did you, after having DBS and still working, decide it was time to give up the career?

Dr. Jonathan Lessin 6:30 Well, my first consideration was always patient safety, and my second consideration was always keeping the surgeons and the patients happy, and my third consideration was myself. Because I had trained for so long to become a cardiac anesthesiologist, and I had become echo-certified, and I was chief resident, and I was working at my dream job, which was the third busiest heart center in the country.

And one day I was just moving more slowly than I'd like, and before I had a complaint from a surgeon or patient, I decided that everybody should have a neuro-intact anesthesiologist, just like when you get on an airplane, you should have a neuro-intact pilot. So I decided to look into my disability insurance.

Dan Keller 7:15 I think some physicians, when they can't do all the tasks, take to consulting or administrative stuff. That didn't interest you at all?

Dr. Jonathan Lessin 7:25 Anesthesia is really a hands-on field, and so I didn't really have the option to do administrative things.

Dan Keller 7:33 Do you still keep up on what's going on in the field?

Dr. Jonathan Lessin 7:37 Yes, I do. I still am very interested in anesthesia and helping people. Mostly, what I do is I help people with Parkinson's disease now who are undergoing surgery. They have questions about the anesthetic, they have questions about what to do when they go in the hospital.

Dan Keller 7:54 I guess anesthesia is both a manual and a cognitive kind of endeavor. Did you have any cognitive problems that you noticed while you were working?

Dr. Jonathan Lessin 8:05 No, I didn't have any cognitive problems. It turns out that I had the LRRK2 gene, which is a hereditary form of Parkinson's disease, which rarely has dementia associated with it. So I was able to think normally.

Dan Keller 8:21 Just as a side note, what attracted you most about being an anesthesiologist in the field?

Dr. Jonathan Lessin 8:29 Well, it was acute care. You showed up in the OR in the morning, you were the first person in the hospital, and you did things that helped the patients, and you saw your results right away. It wasn't like you were waiting six months after you gave a pill to look for results, and you were able to help people immediately. And you didn't have a patient load—you didn't have 3,000 patients that you had to think about all the time. You had one patient at a time, and it was procedure-oriented. I liked the procedures. I liked placing tubes and lines and working with the heart surgeons, doing heart surgery, because the heart surgeons were working on the same organs that the anesthesiologist was interested in, so it was a very active case.

Dan Keller 9:16 I suppose it's sort of like physiology and pharmacology on the run.

Dr. Jonathan Lessin 9:21 Yeah, my favorite case to do was actually a renal cell tumor in which you did circulatory arrest, where you drain the blood out of the patient after you cool the patient down, and you actually arrest the patient for 45 minutes while you remove the renal cell tumor from the inferior vena cava. So it was a very consuming case where you work with the surgeon very closely.

Dan Keller 9:51 Given your experience, both as someone who has received DBS, as well as a physician who was deeply into physiology as a career, what advice do you have to other people with Parkinson's who are considering DBS?

Dr. Jonathan Lessin 10:08 It's fantastic. It's like the medication kicks in and the DBS works even better, because if it's too high and you're having dyskinesias, you can turn it down. And so it's important to know that when you get the DBS, to go ahead and let the programmer program it over a year, and don't be impatient in not knowing when the DBS is going to work fully. Eventually it'll work fantastically, but you have to be patient.

Dan Keller 10:39 What have we missed, if anything, or anything interesting to add?

Dr. Jonathan Lessin 10:44 It's just amazing, the support I got from the chairman of anesthesia. And because of the Americans with Disabilities Act that George Bush finally signed and put through, I was able to prove that I was fit to work, and I always worked with a senior resident, so patient safety was not an issue, and I never got a complaint from a surgeon or a patient. It was amazing.

Dan Keller 11:15 I wonder if all employees would be so fortunate as to have an employer who adheres to the ADA and would be so willing to work with an employee who presents with a problem.

Dr. Jonathan Lessin 11:28 Yeah, and it's also important to have good disability insurance when you've worked so long and trained so hard for your job, to leave voluntarily. The disability insurance allowed me to retire and still maintain my current lifestyle.

Dan Keller 11:44 How active are you now?

Dr. Jonathan Lessin 11:47 I still ride a Peloton bike inside, and exercise is very important for Parkinson's. So, I try to exercise every day.

Dan Keller 11:55 Did you increase your exercise after your diagnosis, or were you always pretty active?

Dr. Jonathan Lessin 12:02 It's funny, because I thought I was active until I got diagnosed, and then I increased my exercise. I actually started rock climbing, which I'd never done before. I actually started a rock climbing group—we have 50 people with Parkinson's.

Dan Keller 12:16 I suppose during your training it may have been hard to fit in exercise.

Dr. Jonathan Lessin 12:22 Yeah, it was during medical school and residency. Actually, the first five years out, I was still training, and it was hard to fit in exercise, but I didn't need it—it wasn't as important as it was after I was diagnosed with Parkinson's disease.

Dan Keller 12:39 Absolutely, yeah. Well, I appreciate all the time and the information. I think you put a pretty good light on what people might expect from DBS, so I appreciate it. Thank you.

For extensive resources on deep brain stimulation, including fact sheets, past podcasts, and more, search our website at parkinson.org and our PD library at parkinson.org/library for deep brain stimulation. You can also find a free book called Surgical Options: A Treatment Guide to Parkinson's Disease that you can read online, download to your computer, or download to your Kindle. The same page showing the book has a list of five relevant podcasts that you can listen to.

Just search on ADA to find information on your rights under the Americans with Disabilities Act, job accommodations, income replacement policies, and podcasts, as well as disability income under Social Security.

Jonathan was physically active earlier in his life, but as he mentioned, he has taken to heart the need for regular exercise. It is now the only known way to possibly slow the progression of Parkinson's. Plus, in the short term, exercise can improve both motor and non-motor symptoms. Once again, our library has many useful resources for whatever your level of fitness and abilities; just search the library on exercise.

The Parkinson's Foundation has teamed up with the American College of Sports Medicine to produce recommendations for four domains of exercise: aerobic activity, strength training, balance/agility/multitasking, and stretching. If you search on exercise, you can find a one-page infographic illustrating each of these in the article titled New Exercise Recommendations for the Parkinson's Community and Exercise Professionals. This is available in other languages and can be downloaded.

And, of course, our helpline information specialists can provide more resources. As always, they are available to answer questions in English or Spanish about today's topic or anything else having to do with Parkinson's, 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. 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. Thank you.

An adventurer at heart, Jonathan Lessin was the cardiac anesthesiology residency director at MedStar Washington Hospital Center, as well as an assistant professor of anesthesiology at Georgetown University Medical School in Washington, D.C. He was the first recipient of the Lessin Award, given by the residents of the University for inspirational leadership in preoperative care. Jonathan was diagnosed with Parkinson's at age thirty-eight and received his Deep Brain Stimulator (DBS) at age forty-three. He became a cyclist and avid sportsman just to prove he could, despite his diagnosis. In 2012, several years after his diagnosis, he voluntarily stepped into retirement to pursue life fulfillment. Jonathan now finds happiness encouraging his fellow "Parkies" to attempt things they thought they could never do. He currently lives in Chevy Chase with his wife and two daughters.

Dr. Jennifer Goldman is an Associate Professor in the Department of Neurological Sciences, Section of Parkinson’s Disease and Movement Disorders at Rush University Medical Center in Chicago. Dr. Goldman is a fellowship trained movement disorder neurologist with specialty training and board certification in behavioral neurology and neuropsychiatry. Her clinical and research work focuses on understanding and improving treatments for cognitive and behavioral features of Parkinson’s disease, parkinsonian disorders, dementia with Lewy bodies (DLB), and other movement disorders using advanced neuroimaging, genetics, and other biomarkers. Dr. Goldman graduated from Princeton University and received her MD from Northwestern University Medical School. She completed her neurology residency training at Washington University in St. Louis, followed by a movement disorder fellowship and a Master of Science degree in clinical research at Rush University in Chicago. She is board certified by the American Board of Neurology and Psychiatry.

As a movement disorder specialist, Goldman treats patients with Parkinson’s disease, atypical parkinsonian disorders, dementia with Lewy bodies, dystonia, and other movement-related conditions in the clinic. She directs the Cognitive-Behavioral program within the Section of Movement Disorders. Her research has been funded by NIH, Michael J. Fox Foundation, Rush University, Parkinson’s Disease Foundation, National Parkinson Foundation, among others. She has published multiple research articles and book chapters on Parkinson’s disease, cognition, behavior, and other movement disorders. She is a Fellow of the American Academy of Neurology and American Neurological Association. Goldman has chaired or served on working groups for biomarkers, cognition/psychiatry and Parkinson’s disease mild cognitive impairment for the Parkinson’s Study Group and the Movement Disorders Society (MDS). She also serves on the Lewy Body Dementia Association Scientific Advisory Committee and the Dystonia Foundation’s Medical Advisory Committee for Musicians with Dystonia. Goldman also is active in education and mentorship at Rush and in the neurological societies.

She was the 2013 recipient of the Rush University Faculty Award for Excellence in Education and has lectured nationally and internationally. She serves on the AAN Education Committee, MDS Leadership Task Force, and as chair of the MDS Pan-American Section Education Committee.

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.

Mental health problems are remarkably common with Parkinson's disease, affecting up to 50% of people at some point in their lives, whether related to the disease pathology itself, the medications used to treat motor symptoms, or simply accompanying the psychological burden of a chronic disease. The critical first step is to recognize these problems and then to find appropriate treatment, since many of these psychiatric issues can be successfully alleviated. As we always say at the conclusion of these podcasts, our mission at the Parkinson's Foundation is to help you live the best possible life today, and mental health is an integral contributor to overall quality of life.

In this episode, geriatric psychiatrist Dr. Mary Hart Bryan of the Medical University of South Carolina elucidates some of the more common mental health problems that occur with PD. The first step in overcoming them is to recognize them, then to bring them to the attention of your neurologist, and ultimately to connect with an appropriate mental health professional, since most of these problems can be significantly mitigated with proper clinical care.

Dr. Mary Hart Bryan 1:49 Up to 50% of people living with Parkinson's will experience some psychiatric symptoms at some point during their journey, and these can sometimes even precede the official diagnosis or the onset of motor symptoms. Some of the most common psychiatric conditions we see in our clinic include depression, anxiety, and apathy. We also frequently evaluate and manage psychosis or psychotic symptoms. While there are other neuropsychiatric features, those are the primary conditions we treat.

Dan Keller 2:22 Is apathy distinct from clinical depression, or can the two conditions easily be confused?

Dr. Mary Hart Bryan 2:27 They can absolutely be confused. Depression is incredibly common in Parkinson's disease and, as I mentioned, it can even serve as a prodromal symptom that precedes motor deficits. Depression presents with a persistently down mood, feelings of sadness, helplessness, or hopelessness, and an inability to enjoy things as much as one once did. It can also bring profound changes in appetite or sleep patterns. Naturally, a person who is depressed may withdraw from social activities and stop initiating things they used to love.

If someone has apathy, they may outwardly appear to be depressed because they similarly exhibit a lack of drive and stop initiating activities. However, the key clinical distinction is that once a person with apathy is gently prompted or encouraged to start an activity, they are fully capable of engaging in and enjoying it. A person with clinical depression cannot; they are unable to find pleasure in those activities because of the pervasive nature of their depression.

Apathy is a distinct neurochemical symptom that can come directly with Parkinson's disease. Frequently, the individual experiencing the apathy will not recognize it themselves and they are completely unbothered by it. However, it can be deeply distressing and upsetting to family members and friends who don't understand why their loved one is suddenly refusing to get up and do the things they once enjoyed, appearing entirely content to just sort of opt out of life.

Dan Keller 3:41 What kind of clinical interventions and treatments are available for both apathy and depression?

Dr. Mary Hart Bryan 3:46 Apathy can be a bit more challenging to treat if it is not accompanied by underlying depression. True isolated apathy will not typically respond to an antidepressant medication. Rather than jumping straight to a pharmacological prescription, we usually implement a structured behavioral approach. We enlist the support of care partners, friends, and family to proactively schedule daily activities, provide external motivation, and help the individual get re-engaged in the aspects of life they have dropped.

For depression, depending on its severity, we utilize two primary modes of treatment. One is evidence-based psychotherapy, and the modality we most commonly recommend is cognitive behavioral therapy, or CBT. This is an excellent avenue. However, sometimes a patient does not wish to participate in psychotherapy, or their depression is severe enough to necessitate pharmacological management. There are several classes of antidepressants that have demonstrated good clinical efficacy in people with Parkinson's disease. There is no single antidepressant that is universally recommended above the rest, though we select specific medications based on the scientific evidence and individual patient profiles. Often, the most effective approach ends up being a tailored combination of both psychotherapy and medication.

Dan Keller 5:02 Does physical exercise play a role in ameliorating either of these conditions? We frequently hear that exercise is vital for people with Parkinson's in terms of managing physical progression and motor symptoms.

Dr. Mary Hart Bryan 5:13 Yes, absolutely. Exercise is an exceptional, evidence-based treatment for depression. Similarly, with apathy, while a person may entirely lack the internal motivation to initiate an exercise routine, once they are guided into doing it, they feel substantially better. Physical activity naturally boosts endorphins and has a profoundly beneficial effect on mood regulations. Exercise should absolutely be a core component of the lifestyle recommendations for any patient dealing with depression or apathy.

Dan Keller 5:41 You also mentioned the potential for psychosis in Parkinson's disease. How does that typically manifest, and how is it treated?

Dr. Mary Hart Bryan 5:46 While depression is the most frequent mood disturbance, we do see quite a bit of psychosis as the disease advances. Parkinson's disease psychosis primarily manifests as delusions and hallucinations.

A delusion is a fixed, false belief that is not grounded in reality, and in this population, it is often paranoid in nature. For example, a patient may experience delusions of infidelity, believing their spouse is being unfaithful, or paranoia that a close friend has suddenly turned against them.

Hallucinations, on the other hand, are sensory perceptions in the absence of an external stimulus, and in Parkinson's, they are overwhelmingly visual. This can range from an illusion—where a patient sees an object that is actually in the room, but their brain misinterprets it as something else, like seeing a coat rack and perceiving a person—to frank visual hallucinations, where they see vivid people, children, or animals that are not there at all.

Oftentimes, in the early stages, people with Parkinson's retain good insight; they are fully aware that they are experiencing a visual hallucination and can reassure themselves, saying, "I know that isn't real." However, as these symptoms progress, they can become deeply terrifying and distressing. At that point, we will introduce specialized atypical antipsychotic medications to manage the psychotic symptoms.

It is vital to note that while psychosis can be a natural feature of advanced Parkinson's pathology itself, the dopamine-replacement medications used to treat the primary motor symptoms can also induce or significantly exacerbate delusions and hallucinations as a side effect.

Dan Keller 7:21 Certain Parkinson's medications are associated with impulse control disorders and hallucinations. But what about pre-existing, underlying psychiatric conditions that individuals lived with long before developing Parkinson's disease—such as bipolar disorder, obsessive-compulsive disorder, or schizoaffective disorder? Where exactly does the neurologist's role end and the psychiatrist's role begin, and should a psychiatrist automatically be integrated into the care team?

Dr. Mary Hart Bryan 7:49 Yes, absolutely. Especially when a patient has a severe, pre-existing psychiatric disorder like major depression, generalized anxiety, bipolar disorder, schizophrenia, schizoaffective disorder, or a substance use disorder, having a specialized psychiatrist on the care team is highly beneficial.

Typically, the neurologist will recognize the complexity and make that referral. It is incredibly challenging to manage advanced Parkinson's symptoms alongside a complex, long-standing psychiatric regimen, largely because of profound pharmaceutical drug-disease interactions. The dopamine agonists and levodopa formulations that are absolutely necessary to alleviate Parkinson's motor symptoms work by increasing dopamine, which can directly interfere with and disrupt the antipsychotic or mood-stabilizing medications necessary to keep a primary psychiatric condition stable.

It requires a delicate, expert clinical balancing act. Many psychiatrists, particularly geriatric psychiatrists like myself, specialize in this exact intersection and collaborate closely with neurologists to safely co-manage these complex patients.

Dan Keller 8:48 Do you find that neuropsychiatric disorders in Parkinson's disease remain heavily underrecognized and, as a result, undertreated?

Dr. Mary Hart Bryan 8:55 They certainly are. In general, psychiatric symptoms and mental health diseases are underrecognized across medicine, often driven by the societal stigma that prevents patients from feeling comfortable discussing these issues openly with their physicians.

Furthermore, when a patient goes into a standard neurology appointment, there is an overwhelming amount of information to cover in a limited timeframe. The physician must evaluate gait, tremors, bradykinesia, and medication timing, meaning that emotional and psychiatric symptoms frequently get pushed to the bottom of the list. Because of this, they go underdiagnosed and undertreated.

Yet, mental health is the fundamental cornerstone of overall wellness and a happy, productive life. Being able to recognize these shifts in yourself, or listening when a loved one points them out, and then proactively bringing them to your neurologist is a vital first step.

Dan Keller 9:38 What specific feelings or changes should patients and families be actively watching for to bring up during their appointments? As you noted, the conversation usually defaults to motor function, but quality of life depends on the entirety of this psychological experience.

Dr. Mary Hart Bryan 9:53 Patients should report if they are experiencing anhedonia—an inability to derive pleasure or enjoyment from life. They should also bring up persistent anxiety. Anxiety is incredibly common in Parkinson's and often presents as excessive, uncontrollable worry that disrupts daily function or keeps people awake at night. Other key signs include unexplained changes in appetite, cognitive withdrawal from social circles, and sleep disturbances.

On the more severe end of the spectrum, symptoms like feeling hopeless, experiencing a passive death wish where you find yourself wishing you were dead, or having active suicidal thoughts require immediate, urgent medical intervention. Any of these emotional shifts are highly clinically significant and must be discussed with your doctor.

Dan Keller 10:31 Without straying too far from the clinical scope, is the person carrying the diagnosis of Parkinson's the only individual affected by these mood and mental health disruptions, or does this intimately impact the care partner as well?

Dr. Mary Hart Bryan 10:43 That is an incredibly profound question. Caregivers are at an exceptionally high risk for developing clinical depression and anxiety—at rates significantly higher than peers who are not in a caregiving role. Data indicates that at least 50% of care partners will experience a depressive episode at some point during the caregiving journey.

This happens for a multitude of reasons: the relentless physical demands of the role, chronic sleep deprivation, and the constant psychological worry over their loved one's progressive decline. It takes a severe toll on both the physical and mental health of the caregiver. Because of this reality, we actively screen caregivers for depression and anxiety in our clinic. We strongly encourage care partners to reach out and build a robust support network, whether that involves joining a dedicated Parkinson's disease caregiver support group, pursuing individual psychotherapy, or speaking with their primary care physician about medical options.

A caregiver simply cannot effectively support their loved one if their own mental health is actively suffering. Ensuring the caregiver is taken care of is absolutely essential for the survival and well-being of the entire family unit.

Dan Keller 11:44 What about the development of dementia in Parkinson's disease? We cannot fully unpack that complex topic here, but how should families approach recognizing and addressing cognitive decline?

Dr. Mary Hart Bryan 11:53 Cognitive decline and dementia are common neurodegenerative features of advanced Parkinson's disease, and it represents a major neuropsychiatric challenge. There is a vast amount of clinical nuance when discussing Parkinson's disease dementia, and we do have targeted medications that can offer cognitive benefits.

However, one critical concept to highlight is the phenomenon of pseudodementia. When a patient is severely depressed or intensely anxious, they cannot think clearly, focus, or process information efficiently. When a patient presents with new cognitive complaints—such as short-term memory lapses or an inability to concentrate—our first clinical priority is to carefully tease apart whether underlying depression or anxiety is driving those deficits. If mood disorders are present, treating them aggressively can often reverse those apparent cognitive impairments. If true, structural neurodegenerative dementia is present, it must be addressed, but it requires an entirely different management paradigm.

Dan Keller 12:45 What is your definitive take-home message for people living with Parkinson's and their caregivers who suspect they are experiencing any of the symptoms we have discussed today?

Dr. Mary Hart Bryan 12:56 My primary take-home message is: please do not suffer in silence; talk to your doctor immediately. Whether you are the person living with Parkinson's or the care partner who is actively drowning under the weight of caregiver stress, report it. If you do not feel comfortable opening up to your neurologist, make an appointment with your primary care physician. If you prefer to bypass those channels, seek out a specialized psychiatrist. These psychiatric conditions are highly treatable, and addressing them is the single most powerful way to restore your quality of life.

Dan Keller 13:29 Beautifully stated. Thank you, Dr. Bryan, for your vital insights and your dedication to this critical area of care.

To learn more about managing mental health issues in Parkinson's disease, you can search for "mental health" directly on our website at parkinson.org. There you will find an excellent, comprehensive overview regarding clinical screening for mood disturbances authored by our Chief Scientific Officer, James Beck, titled Mental Health in Parkinson's disease during the COVID-19 pandemic.

If you explore our digital archive at parkinson.org/library, you will find a wealth of evidence-based articles, expert briefings, and archived podcasts covering every facet of neuropsychiatric health—including anxiety, sleep disorders, social isolation, and loneliness, alongside resources on psychotherapy, counseling, and mindfulness techniques.

The foundation also publishes four comprehensive books addressing these topics, titled Caring and Coping, Cognition, Mood, and Psychosis. You can read these educational guides online, download them directly to your computer or Kindle, or order complimentary physical copies. Caring and Coping is particularly valuable, offering dedicated chapters on mitigating caregiver strain, step-by-step psychological tip sheets, and a curated registry of national and community resources. It also includes a practical contact directory where you can centralize emergency contacts, physicians, and pharmacies.

As always, if you need immediate, personalized guidance, the Parkinson's Foundation Helpline is available to assist you. Our information specialists provide expert resources in both English and Spanish and can be reached toll-free at 1-800-4PD-INFO. To receive updates regarding future educational webinars, local events, and community resources, you can easily subscribe to our email list at the bottom of our homepage.

If you would like to leave feedback regarding this podcast or suggest future topics, please visit parkinson.org/feedback. If you are enjoying this series, please take a moment to subscribe, rate, and review Substantial Matters on Apple Podcasts or your preferred streaming platform.

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 will be back with a brand-new episode every two weeks. Until next time, for additional resources, please visit parkinson.org or call our helpline at 1-800-4PD-INFO, which is 1-800-473-4636. Thank you for listening.

Mary Hart Bryan, MD is an assistant professor in geriatric psychiatry at the Medical University of South Carolina (MUSC). She completed her medical degree at MUSC, psychiatry residency at UNC Chapel Hill where she also served as chief resident, and geriatric psychiatry fellowship at MUSC. She is board certified in geriatric psychiatry by the American Board of Psychiatry and Neurology (ABPN). Dr. Bryan is the assistant director of the geriatric psychiatry fellowship and clinical director of the geriatric psychiatry outpatient clinic. She enjoys teaching residents and training fellows in the field of geriatric psychiatry. Dr. Bryan works in long term care facilities including skilled nursing, assisted living and memory care. She often treats patients in these settings who have movement disorders and overlying neuropsychiatric symptoms. She is part of the MUSC neurology interdisciplinary clinic which is a multidisciplinary team that evaluates patients with movement disorders. She often gives talks on mental health issues related to Parkinson’s disease and other movement disorders at educational events. She is a member of the American Psychiatric Association and the American Academy of Geriatric Psychiatry.