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.

Anxiety and depression are common non-motor symptoms of Parkinson's disease. They are not only a reaction to the disease, but are also related to changes in the chemistry of the brain. The Parkinson's Outcomes Project, which has tracked more than 13,000 people with PD for more than 10 years, has found that as many as 40% of people with PD will experience some form of anxiety. While some worry is natural when a person has a chronic disease, I asked clinical psychologist Dr. Roseanne Dobkin about when an appropriate level of worry becomes the mental health condition of anxiety.

Dr. Roseanne Dobkin 1:27

That's a really great question. You know, as a clinical psychologist, I think it's important for us to embrace our emotions, because they're important and they tell us something. So, they're going to be certain circumstances in life where feeling a little bit anxious or nervous or worried is quite appropriate. Those feelings cross the threshold into problematic when they become all-consuming, when the feelings, the negative feelings, start to occur more of the time versus not, when they start to become incredibly distressing, when they start to interfere with day-to-day life and activities.

Dan Keller 2:01

How common is anxiety across the course of having Parkinson's disease?

Dr. Roseanne Dobkin 2:07

Anxiety is one of the most common non-motor symptoms that we see in Parkinson's disease. Published estimates suggest that about 30% of people living with Parkinson's will experience anxiety at some point during the course of the medical condition. In my experience, I think the 30% is definitely an underestimate, because there are so many folks with Parkinson's who have anxiety that goes undetected and untreated. So, if I had to put a number on it, I would probably put it somewhere between 50 and 60%.

Dan Keller 2:42

Is it really just a reaction to having a disease, or is there something going on in the brain which facilitates or exacerbates anxiety?

Dr. Roseanne Dobkin 2:52

So, the short answer to that question is yes, all of the above. You know, in general, it's a complicated mix of neurochemical factors, many of which are inherent in the disease process, plus all of the challenges that go hand-in-hand, living day in and day out with Parkinson's, and a lot of the limitations and difficulties that it causes for people and their families.

Dan Keller 3:14

Do depression and anxiety coexist? And if they do, how do you tell the difference?

Dr. Roseanne Dobkin 3:20

That's a great question that I get in the clinic all of the time. Depression and anxiety very commonly co-occur, and oftentimes folks are pretty confused trying to figure out, you know, what exactly am I feeling, and what type of symptom might it be most helpful to report to my doctor. And while there's a lot of overlap, I think the easiest way to distinguish them, if we're trying to separate the emotions, is that depression is characterized primarily by feelings of sadness, loss of enjoyment, loss of interest in things that one traditionally really likes to do, whereas anxiety is characterized more by worry, nervousness, apprehension.

Both of these conditions are associated with a lot of negative thoughts and unhealthy thinking patterns. In the case of depression, the negative thoughts tend to center on the self, the world, the future. So, somebody who is depressed might think, "I'm not good enough," or "My future is bleak." A person who's having a lot of anxiety-provoking thoughts tends to focus on worst possible case scenario, tends to overestimate the likelihood of bad outcome. So, an anxiety-provoking thought might sound more like, "Oh, nobody at the party will talk to me, my symptoms make my friends very uncomfortable, so it's safer for me to just stay home."

Dan Keller 4:39

What forms does anxiety take? What do people do?

Dr. Roseanne Dobkin 4:43

So anxiety presents in very, very different ways. You know, the phrase, "If you've met one person with Parkinson's disease, you've met one person with Parkinson's disease," it applies with anxiety just like all other manifestations of the medical condition. Anxiety could present cognitively in the form of excessive worry and rumination about day-to-day events. It could present physiologically in terms of increased feelings of physical tension, rapid heart rate, difficulty breathing, feeling dizzy. It could present emotionally in terms of inner feelings of angst or extreme discomfort, and it can also present behaviorally in terms of avoidance and withdrawal, and that's something that I really want to draw people's attention to.

I can't tell you how many times be meeting individual for the first time, and I'll be asking them about their mood, and if they're worried or nervous, and they'll say, "Oh, no, Dr. Dobkin, I'm cool as a cucumber. Nothing bothers me." But the more I learn about their history, and the more I learn about their day, nothing bothers them, because they don't leave the house, or they're in the basement all day, because they're avoiding exposure to any person, place, or thing that could possibly lead to them feeling uneasy. And when people start avoiding and withdrawing, it makes their world smaller and smaller, and that's not healthy in the long run.

Dan Keller 6:03

You describe some physiological responses to anxiety—rapid heart, and stress, and probably muscular tension, I would think. Can it have actual health consequences, physical health consequences, to be anxious?

Dr. Roseanne Dobkin 6:19

It can. Unfortunately, anxiety can have a detrimental impact on all aspects of physical health. It can exacerbate the presentation of Parkinson's disease symptoms, both physically and cognitively, and it can have a really negative impact on quality of life and family relationships.

Dan Keller 6:38

What kind of situations can provoke anxiety?

Dr. Roseanne Dobkin 6:43

Anything and everything. It's a very personalized phenomenon. So, for some people, it may be excessive worry about day-to-day things, like paying the bills, picking up food at the grocery store, finding a parking spot at the local church. For others, anxiety may be triggered by something very specific—being in public, speaking in front of a crowd, potentially concerns related to Parkinson's symptoms, be they physical, emotional, or cognitive. It's not uncommon for individuals with Parkinson's that I work with to share that they get very nervous around the time that they are expected to take their Parkinson's medication for fear that it might not kick in or that it might lead to side effects, so there can be a whole host of factors that can contribute to and can cause anxiety to hang around for a lot longer than we'd like it to.

Dan Keller 7:34

What are some of the treatment options?

Dr. Roseanne Dobkin 7:36

This is the really good news, is that we do have effective treatments, and medication, as well as an evidence-based type of psychotherapy called cognitive behavioral treatment, have both been shown to be effective in the general population, and there's some preliminary research that's showing that these types of treatments may also be very helpful for individuals living with Parkinson's disease. Medication is certainly something that would involve careful evaluation and discussion with the individual's physician and personal health care team. Cognitive behavioral therapy is something that could be accessed in the community from a licensed clinical psychologist like myself, or social worker, or a mental health counselor, and the really great thing about cognitive behavioral therapy is it arms people with tools, with coping skills that they can use to manage their stress and their anxiety as effectively as possible.

Dan Keller 8:33

Are they most effective when combined—cognitive behavioral therapy with some drugs, maybe for a short time, maybe a little longer?

Dr. Roseanne Dobkin 8:41

Ideal treatment selection, again, it really depends on the individual person and their unique history. As a rule of thumb, though, I usually suggest that if an individual is experiencing symptoms that are quite distressing and quite pervasive, and they're there more of the time than not, that they combine medication under doctor supervision with the cognitive behavioral therapy to get the quickest, most robust response.

Dan Keller 9:08

Is the goal to use the medication short term, hopefully give them those tools that will allow them to handle it themselves without the drugs?

Dr. Roseanne Dobkin 9:18

Again, it's really a case-by-case decision. Some people use medications like low-dose antidepressants to manage anxiety for very short period of time while they're learning the coping skills, and the coping skills carry them forward. Others find that they do best if they stay on a low dose of the medication for a longer period of time as they continue to learn healthier ways to deal with life challenges.

Dan Keller 9:41

What have we missed, or that's important or interesting to add?

Dr. Roseanne Dobkin 9:45

You know, I think one of the most important messages that I try to convey to all of the individuals that I work with who are dealing with Parkinson's and anxiety is that nobody with this medical condition had any choice in the diagnosis, but they have every choice in the coping response. And there are so many things that people can do today to reduce anxiety and to improve their quality of life—things like increasing exercise, finding some time to take some slow, deep breaths, maybe learning some meditations.

And the good news is, in the age of digital technology and the internet, there are a lot of free downloads that are high quality. So just googling, you know, mindfulness and meditation, and finding some three-to-five minute breathing exercises that an individual might like and could practice a couple times a day could be incredibly beneficial. And then, you know, as a cognitive therapist, you know, one of the main objectives for me when I'm sitting down and working with somebody one-on-one is to help them to learn to leave the judgment and the criticism at the door and to speak to themselves with the same kind, compassionate words that they would use when they're speaking to a friend, because negative thoughts can really fuel the fire when it comes to anxiety, and we really want to talk back to those negative thoughts and ultimately crush them like a bug.

Dan Keller 11:14

Great, thank you.

Dan Keller 11:24

Anxiety is a common non-movement symptom of Parkinson's disease, and recognition of it is the key to getting help. For an idea of what to look for, visit parkinson.org/anxiety. Here you'll find a list of common symptoms, along with an explanation of the psychological and biological factors underlying the condition, how it's diagnosed, and treatment options, including nonconventional ones. You can also find tips for living with anxiety, along with archived expert briefing webinars, when selecting the topic of anxiety at parkinson.org/library. In the same search, you can find a fact sheet titled "Stress Management for PD," which talks about some useful complementary techniques, such as yoga, tai chi, breathing exercises, and massage therapy.

Along these same lines, our free PD Health @ Home virtual educational and wellness programs continue online, including Mindfulness Mondays. You can register for upcoming ones or see past ones at parkinson.org/pdhealth. Podcasts 78 and 80 describe what mindfulness is and what it can do for you, and episode 38 talks about mood and coping.

As always, our PD Information Specialists can answer questions and provide information in English or Spanish about today's topics or anything else having to do with Parkinson's. You can reach them at 1-800-4PD-INFO. To receive news and updates about future events and resources, you can opt into our email list at the bottom of our website's homepage. If you have questions or want to leave feedback on this podcast, or any other subject, you can do it at parkinson.org/feedback, or if you prefer, email us at podcast@parkinson.org.

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. This episode is supported by a grant from Genentech, a member of the Roche group. Thank you for listening.

Roseanne Dobkin is a licensed clinical psychologist and Professor of Psychiatry at Rutgers University with a well-established clinical research program in the mental health aspects of Parkinson’s disease (PD).

Key objectives of her research program include 1) improving the recognition, assessment and treatment of the neuropsychiatric complications of PD, including cognition, depression, anxiety, and sleep, 2) advancing the understanding of the complex interaction between the motor and non-motor symptoms of PD and the influence of this interaction on course and progression of PD, and 3) utilizing applications of telemedicine to leverage access to informed mental health care for all members of the PD community. To date, her PD research has been funded by the National Institutes of Health, the Patterson Trust Awards Program in Clinical Research, the Michael J. Fox Foundation for Parkinson’s Research, the Parkinson’s Unity Walk, the Parkinson’s Foundation, and the Health Services Research and Development Division (HSR&D; Merit Award) of the Veteran Affairs Administration.

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.

Mindfulness has been developed as a therapeutic technique, but it can also be a part of daily life to cope with stress, pain, anxiety, or depression. It is really a practice of conscious awareness of experiences, sensations, feelings, and emotions at each moment, all in a relaxed and non-judgmental way, accepting them but not being influenced by them. Through this awareness and acceptance in the moment, one hopes to achieve calm and promote a clearer path in one's daily life. While there is no universally accepted definition of mindfulness, Dr. Angela Johnson, like many practitioners, turns to one put forth by one of the pioneers in the field.

Dr. Angela Johnson 1:32

The most commonly used working definition of mindfulness comes by way of Dr. Jon Kabat-Zinn, who's kind of known as the father of mindfulness here in the United States, and he's at the University of Massachusetts. And so the definition of mindfulness is really the awareness that emerges through paying attention on purpose, in the present moment. And so it suggests that the mind actually is fully attending to what's happening. So, for example, you're more present and aware of what you're doing when you're doing it, and as well as having an awareness of the space that you're moving through.

Dan Keller 2:10

Can you give me some examples of it, or how one would begin to become more mindful?

Dr. Angela Johnson 2:17

Yeah, so there are actually two primary ways of practicing mindfulness, and they kind of fall into two categories. So, most of us, you know, when we think about mindfulness, kind of conjure up perhaps an image of someone sitting, right, with their eyes closed and meditating, and this kind of falls into the category of formal mindfulness practice. In this example, it's a practice where someone would intentionally, you know, set aside time to focus on the breath and paying attention to the sensations of breathing with each breath in and each breath out. So, in an instance of mindful breathing, someone would notice the sensations of the coolness of the air as it enters the nose and the warmth as it exits.

Other forms of mindfulness meditation practices include, like, mindful eating where, when you are eating, you're just eating instead of multitasking, and you're noticing, you know, the colors of food on your plate, you're noticing the senses, right—how the food smells and how it tastes—and you're really kind of eating nice and slow. Mindful walking: an example of mindful walking is when you're walking outside, you know, you're really aware of yourself in movement one step at a time, feeling your feet connecting with the ground, noticing the sights and sounds around you when you're in the moment. Those are examples of formal mindfulness practices.

So alternatively, when we practice mindfulness, there's another category called informal mindfulness practices, and this is kind of where we bring our attention to our experiences on a moment-to-moment basis, kind of during the day. For example, we can practice informal mindfulness—I mean, every day, hopefully, we're all washing our hands, and so you can, as you are washing your hands, instead of allowing your mind to kind of be wandering off and carried away by, you know, the thoughts and worries that you have in your mind, you are instead engaged with the process of washing your hands. You're feeling the warmth of the water on your hands, you're noticing the softness of the soap, and so that's kind of an example of an informal mindfulness practice.

Dan Keller 4:29

Can exercise be a form of mindfulness, or can the reverse—mindfulness—enter into your exercise routines or practices?

Dr. Angela Johnson 4:40

Yeah, that's a great question. So, it absolutely can fit into exercise, and so one of my most favorite practices—and I kind of referred to this earlier in the formal mindfulness definition—is kind of along the lines of mindful walking. And so again, the idea with this practice is to be present with the sensations of movement, again, noticing your feet connecting with the ground, noticing your clothes against your skin as you move, noticing sensations in your body without being in judgment of what you're noticing. It's a way of training your attention in the present moment.

And to the other part of the question is, let's say that someone—maybe their exercise routine is doing whatever, like running, or maybe it is sitting and doing some gentle yoga stretching—and so the idea with mindfulness is to fully bring your attention to whatever movement or exercise you're doing, and to notice your body in movement, to feel your skin against your clothes, if you're outside feeling the sensation of the air against any areas of exposed skin. And the moment that you notice your mind wandering off of that exercise or those moments of movement—which the mind will wander, we know from neuroscience that the mind automatically wanders nearly 48% of our waking hours is when the mind wanders—when we notice that our mind has wandered off of whatever it is that we're doing in that moment, you know, exercise, the yoga, the walking, we gently bring our attention back to what we're trying to do. This is how we train our mind to be present to what we're doing in the moment—that's mindfulness.

Dan Keller 6:25

Can mindfulness help deal with stress, either by being mindful and doing mindfulness practices all along, or even in a particular situation where someone is feeling stress, then going back to their mindfulness practices and what they know about it?

Dr. Angela Johnson 6:43

Absolutely. You know, mindfulness practices can be especially beneficial during times of high stress. There's actually a growing body of research to indicate that when we practice mindfulness, we are actually changing our physiology because the nervous system begins to calm down, which may help us feel less stressed and less anxious.

So what research is finding is that when we practice mindfulness, what's happening, or partly what's happening, is that the amygdala—which is the size and shape of an almond, located kind of just behind the temples—is the part of the brain that fires up when we are in a place of, like, when we're feeling kind of stressed and anxious and fearful. And when that is fired up, it often carries us off into the fight-or-flight response, the stress response. And being in a kind of chronic state of fight-or-flight is certainly not good for any of us, including people with Parkinson's. Chronic stress increases inflammation, which can make any condition worse.

So, when we practice mindfulness, there's evidence to suggest that the firing inside the amygdala actually begins to quiet down, and instead, the prefrontal cortex, which is known as our executive functioning area, helps us feel more grounded, more focused. It allows us to respond to what's happening inside more skillfully, and that is the beauty of mindfulness and how it helps us during times of stress.

Dan Keller 8:14

Right now, a lot of people may be feeling stress—we're in the middle of a coronavirus pandemic—but sometime we're going to get back to a normal routine and people are going to have more to do in their day. How can you fit in mindfulness into your daily life in those conditions?

Dr. Angela Johnson 8:32

You know, the wonderful thing about mindfulness is that you don't have to go anywhere special to practice it. It does not cost a dime; it can be incorporated really into all aspects of your life. It's all about finding a mindfulness practice that resonates with you and figuring out a way to get into the habit of practicing, and then doing it and see how it works for you.

For example, mindful breathing: we as human beings breathe 17-plus thousand times a day, and so we have 17-plus thousand opportunities to practice mindful breathing, even if it's just for one breath cycle, where you are following the breath from the beginning of the inhalation through the middle to the end, and then the beginning of the exhalation through the middle to the end. There you go. There's your practice—one breath. So it's really about finding what works for you and getting into the habit and doing it.

Dan Keller 9:35

You focused up till now mostly on physical sensations—attending to your breath or feeling the air when you're outside walking or something like that—but how about more internal stuff, attending to your emotions in the moment, and things like that?

Dr. Angela Johnson 9:51

I really appreciate you asking me this question about using mindfulness to help deal with emotions. So, you know, as human beings, we experience emotions; it's a natural and normal part of life. Oftentimes, without any sort of mindfulness practice, when we experience emotions—and especially if they're difficult—we are kind of hardwired to react automatically to our emotions, and it's sometimes unhealthy, right? When we're feeling stressed or anxious or irritable, we can often lash out at other people, lash out at ourselves, be in judgment of ourselves, be in judgment of other people, and that just increases kind of the heaviness of our emotional experience.

So being mindful of emotions, getting into the habit of that really means like just tapping into, taking a moment and pausing on purpose to identify, "How am I feeling in this moment? You know, what is the most present thought in my mind? What is the present emotion that I have in my heart?" And the idea with mindfulness, in terms of emotions and thoughts, is to label—label what you are noticing in the moment. And instead of saying, for example, if you are experiencing some anxiety, instead of saying, "I'm anxious," you can stop and pause and say, "In this moment, I notice anxiety." And again, research is finding that when we label our emotions, the neural networking inside the amygdala begins to quiet down, which then quiets down the stress response, and it re-engages and strengthens the neural networking inside the prefrontal cortex. And so it's such a beautiful practice to get into the habit of doing.

Dan Keller 11:44

Does mindfulness training and mindfulness itself have physical health benefits, or anything measurable in the physical realm, especially for Parkinson's?

Dr. Angela Johnson 11:55

Trials that have been done have found evidence to suggest that mindfulness can lower anxiety and depression, improve motor functions, help people experience greater verbal fluency, as well as reduce pain.

Dan Keller 12:10

Where can people find mindfulness training? Is it only at medical centers, or is it available in the community, or online?

Dr. Angela Johnson 12:20

You know, many large academic medical centers offer some form of mindfulness training, so certainly, if you are interested in attending, like, a six or eight-week mindfulness series, you could certainly do a search. And if you live in a big city, you know, I would suggest that you do a search of your local medical centers and see what's being offered. But alternatively, for people who are interested in doing an online program—which, you know, certainly now would be an incredible time to do that—there are many, many places across the United States that are offering online programs. And so some of the places that your listeners might want to look into is mindfulness training through places like University of Massachusetts, University of California at San Diego, and University of California at Berkeley. Those are some great places to begin, and there's certainly many, many, many more out there. It's important that people kind of do their own research, maybe ask around to family and friends, and see if they have any suggestions, but really find something that works best for you.

Dan Keller 13:25

And finally, is there anything to add, or anything important we've missed?

Dr. Angela Johnson 13:31

If your listeners are finding this information interesting and they've never tried mindfulness out, I would just suggest that they try it out for themselves and kind of use themselves as their own lab and see how these practices feel for them. While there certainly are suggested guidelines and nuances for each type of mindfulness practice, your listeners should remember that these are certainly just suggestions, and really, it's all about getting into the habit of doing some sort of self-care, whatever feels best for them, and adjusting these practices to make it work for them personally.

Dan Keller 14:10

Great, thank you. That's a lot of information. I'm sure it'll be helpful. Mindfulness exercises have been widely adopted in the United States in schools, businesses, the entertainment industry, and the military. One desired outcome is to help people better control their thoughts rather than be controlled by them. In these uncertain times, you may want to try an online mindfulness course to relieve some of the stress.

We additionally invite you to join the Parkinson's Foundation's Mindfulness Mondays, when each Monday an expert speaker will give tips on staying mindful, and where you'll have a chance to interact with other people with Parkinson's as part of our PD Health @ Home virtual educational and wellness programs. Mindfulness Mondays will provide guided relaxation techniques to help you ease into your week with calmness. You can register for upcoming Mindfulness Mondays at parkinson.org/pdhealth. Past Mindfulness Mondays are archived on our website as well.

You can also check out our podcast episode 78, "Benefits of Self-Awareness with PD," for more on the benefits of cultivating self-awareness and how it relates to health confidence, and episode 80, part one of this mindfulness series, explains how mindfulness techniques affect the nervous system. If you enjoyed this episode, we encourage you to learn more from Angela Johnson through our archived Care Partner Summit videos, which went live this past weekend, featuring Angela Johnson as she walked participants through mindfulness tips and techniques. You can view this video by visiting parkinson.org/summit.

As always, our PD Information Specialists can answer questions and provide information in English or Spanish about today's topics or anything else having to do with Parkinson's. You can reach them at 1-800-4PD-INFO. To receive news and updates about future events and resources, you can opt into our email list at the bottom of our website's homepage. If you have questions or want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback, or if you prefer, email us at podcast@parkinson.org.

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. This episode is supported by a grant from Genentech, a member of the Roche Group. Thank you for listening.

Angela Johnson is a Doctor of Acupuncture in the Cancer Center at Rush University Medical Center. She also holds a faculty appointment as an Assistant Professor in the Department of Psychiatry & Behavioral Sciences, Rush Medical College.

As the acupuncturist in the Rush Cancer Center, Dr. Johnson provides personalized treatments for patients who are interested in achieving optimal health in the face of chronic illness. In her faculty role, she collaborates in research, serves as a preceptor for students interested in integrative medicine rotations, and teaches mindfulness meditation in clinical, academic, corporate, and retreat settings.

Angela Johnson holds a Doctorate in Acupuncture and Chinese Medicine, Master of Public Health, Master of Science Traditional Oriental Medicine, and Bachelor of Art. Additionally, she has completed mindfulness training with Mindfulness Without Borders; University of California San Diego Center for Mindfulness; University of California Los Angeles Mindful Awareness Research Center; Rush University Medical Center’s MBSR program; The Center for MindBody Medicine; and The Center for Mindful Self-Compassion.

Dr. James Beck 0:00:02
Welcome to the second talk in the Parkinson's Foundation's ninth Expert Briefing series. Today's topic is Depression and Parkinson's Disease: Treatment Options. I'm your host, Dr. James Beck, and I'll be leading our discussion today. I'm pleased to let you know that we have over 1,230 people registered for today's talk with our discussant, Dr. Dobkin, from 21 different countries.

I also want to let you know that these webinars are not created in isolation, which is why I'm very pleased to announce that this series has been designed in collaboration with our partner organizations, who are members of the Alliance of Independent Regional Parkinson Organizations, or AIRPO. I would like to also acknowledge our sponsors for this series: AbbVie, Sunovion and Lundbeck. Without their generous support, these webinars would simply not be possible. Thank you very much.

For those of you who would like to gain access to the PowerPoint slides, those can be downloaded on the viewing page that you're looking at right now. Look at the bottom left for the Download Slides link, and you can download a PDF file at any time during our webinar today. If you're a health professional who's listening in, you can earn one free CEU through the American Society on Aging. If you registered as a health professional and indicated you would like a CEU, you will receive an email by the end of today with steps on how to collect your free CEU. You have just 30 days, so that's until December 21, to collect that CEU.

I also wanted to give a shout-out to our Ohio chapter, which has a group viewing going on right now. Hello, everyone there. It's my distinct pleasure to welcome our guest speaker for today, and that's Roseanne Dobkin, PhD. She's an associate professor of psychiatry at Rutgers, the State University of New Jersey Robert Wood Johnson Medical School. She's also a practicing psychologist who has a practice in both New Jersey and Delaware, and her research and clinical work focuses on the treatment of psychiatric symptoms such as depression, anxiety, insomnia, cognitive issues and Parkinson's disease non-motor issues.

She's really looking for ways to help people with Parkinson's disease and their families cope with the disease itself. I will turn it over to Dr. Dobkin now. Thank you very much.

Dr. Roseanne Dobkin 0:02:15
Well, thank you. Thanks for the wonderful introduction. I am thrilled to be able to spend the next hour or so with everybody on the call.

Just as some introduction and background to our topic for this afternoon, we all know that depression is common and negatively impacts quality of life and health outcomes in Parkinson's disease. But here's the good news. The good news is that depression, anxiety and a lot of these neuropsychiatric complications are aspects of the medical condition over which you have control. Nobody listening in had any choice in the diagnosis. Everybody has every choice in the coping response.

My job over the next 30 or 45 minutes or so, before we take questions, is to empower each and every one of you with the information and the skills that you need to go out there and to live a good life today. I will preface this by saying that all of the tools that I'm going to give you today are going to require you to be an active and oftentimes a very proactive participant in your own self-care. We can't phone this one in. This is not just going to be good cocktail party conversation, but I really am going to try to outline a series of actionable steps for each and every one of you to begin taking today.

An analogy that I like to offer, because people can really relate to this and understand, is if you go to your neurologist and you're complaining about tremor, increased stiffness or increased difficulty walking, and the neurologist says, "Okay, I hear your concerns. Let's increase your Sinemet a little bit and see how you do with that." If you go to the pharmacy and you fill the prescription, and you come home with a new bottle of medication and you stick it in your medicine cabinet and you just look at it, but you never actually swallow the pill, it's not going to help you. Your tremor, the stiffness and the other physical symptoms aren't going to improve.

The same thing goes for some of the techniques that we're going to be discussing today. You could develop the most sophisticated knowledge of coping skills for depression and Parkinson's disease after our presentation, but if you don't find a way to implement them on a regular and daily basis, they're probably not going to help all that much. Just like you wouldn't fill a prescription and then stare at it in the medicine cabinet, I don't want you to soak up all this interesting information from today's talk and then just kind of think about it and mull it over. We really want to start implementing it in the day-to-day so that we can see meaningful change.

I'm going to need somebody to push the slides because it's not advancing for me. Can we go to the next slide?

Dr. Roseanne Dobkin 0:05:05
I'm going to be talking about coping skills today in the context of the cognitive behavioral therapy model. Cognitive behavioral therapy is an evidence-based approach for treating depression and anxiety in other populations, and I have done a lot of work, both clinically and as far as research, in terms of figuring out the best way to implement cognitive behavioral therapy techniques in my work with people with Parkinson's disease and their family members.

As I'm going to highlight throughout the rest of the presentation, cognitive behavioral therapy, kind of like it sounds, targets thoughts and behaviors that are related to the onset and maintenance of negative emotional states like depression. It's very skill-based, and in my experience, it's very suitable for enhancing effective coping and the treatment of depression in Parkinson's disease.

We should be on slide number three now with the model. We're going to be talking a little bit about the CBT model and the multiple interacting causal factors that are implicated in the onset and the maintenance of depression. The CBT model proposes that there are many things, not just one thing, not just one factor, that interact to both cause and maintain depression. While it's pretty well recognized that there are biological factors that may play an important role in the onset and maintenance of depression in Parkinson's disease, the biology is far from the only actor in the play.

How we think about things, the meaning that we make about what's going on around us, the interpretations of the day-to-day, all influence how we feel. Our thoughts influence how we feel. What we do, what we don't do in response to the life stressors around us, also has a huge impact on how we feel. All of these factors, our biology plus our cognitions plus our behaviors, what we're doing or not doing, all influence one another, and intervening anywhere in that cycle can help.

Since I'm a clinical psychologist and I work with people using non-pharmacological or non-medication methods to help enhance mood, for the purposes of our conversation today, we're going to be talking about ways to intervene in that behavioral and cognitive bubble that you will see on the diagram. I always tell people I love to create these visuals and these diagrams to tell a story, but I'm not an artist, so the bubble diagram is the best I can come up with. I think it illustrates the points.

Again, we want to be thinking cognitively. How can we make changes in the way in which we think about what's happening to us, the way in which we think about Parkinson's, the way in which we think about its impact? And how can we make changes behaviorally in terms of what we're doing or not doing in response to the challenges that we're facing on a day-to-day basis?

Dr. Roseanne Dobkin 0:08:22
Now I'm on slide four. I want to give everybody a flavor of some of the interventions that I might review, some of the interventions that I might work with as I'm sitting down one-on-one, addressing depression or other related psychological concerns for a person living with Parkinson's and/or their family members. When I think about starting, I always like to start in that behavioral bubble and really zero in on what are we doing or not doing to enhance our coping efforts. How can we make things better, more effective? How can we make it easier to get through the day?

One of the first places I like to start is: can we think creatively, can we think strategically about increasing our involvement in meaningful activities, in social activities? When I say increasing involvement, I absolutely don't mean being busy for the sake of being busy, because that's not pleasurable. That's just stressful, and that doesn't help anybody. But it can be really helpful for people to set realistic and reasonable goals for each day and to really think about allowing the goal to guide the behavior rather than that negative emotional state that might be lingering.

The reality is, if we're feeling somewhat sad, if we're feeling a little bit anxious, we tend to be more controlled in those moments by our emotions rather than by the facts of the situation, rather than by what might be good or healthy for us. If we can temporarily suspend judgment on what we feel like doing or don't feel like doing in a given moment, but focus more on our goals, it can be incredibly helpful.

When I work with people to establish goals, I tend to think in three main areas. Not to say that these are the only three areas, but I think they can be important areas as a starting point. The first area that I always zero in on is exercise. In my ideal setting, there would be an exercise goal every day. It doesn't have to be going out and running a marathon, but it could be walking for 15 minutes. It could be doing tai chi or seated exercise or practicing the BIG program and all of those Parkinson's-specific physical therapy exercises that you've learned on a regular basis at home.

I love to see everybody with an exercise goal for the day. I love to see folks establish a social goal for each day. By social, I don't mean hosting a dinner party for the entire neighborhood or taking your best friend to the opera. A good social goal for somebody who's feeling depressed, maybe feeling a little bit more isolated, might be to answer your phone when it rings rather than allowing it to go straight to voicemail, making it a goal to respond to your emails within 24 hours, or to just say hello and goodbye to the barista at Starbucks that's giving you your coffee. Something that's going to increase that sense of social connectedness with the folks that you are interacting with on a daily basis.

We've got our exercise goal, we've got our social goal, and the third area I like to tap into is what's self-soothing. What helps people just feel good, to feel comforted? Maybe it's a cup of hot tea at the end of the day. Maybe it's a soak in the tub. Maybe it's listening to Billy Joel or Elton John. But what feels good, and what can be prioritized just because exposure to that activity is going to likely lead to a positive emotion for you?

Dr. Roseanne Dobkin 0:12:02
When we think about goals, we want to think exercise goals every day, social goals every day, and something that just feels good, something that's going to be self-soothing and therapeutic. The goals should be small. They don't have to be lofty changes, but they should represent an improvement in addition to what's already going on in the day-to-day.

If somebody's in a place, in a position where they're feeling more down and out, where they're feeling more anxious, we need to shake things up. We need to make changes that are going to alter the landscape of the day. They don't have to be huge, but they need to be meaningful. Again, if we think about exercise, social connectedness and increasing exposure to activities that help us to feel good about ourselves, that help us to feel comforted, that help us to feel satisfied, then we're moving in the right direction.

Sometimes people will say to me, "Oh, Dr. Dobkin, this sounds wonderful, but I don't have the foggiest idea what to do. I don't know what changes I want to make, and I don't even know how to go about starting with making change." I like to keep people in three areas in response to that question. Usually those three areas are as follows. Are there things that you used to love to do that maybe fell off the radar for no good reason that we can start to reintroduce? Are there maybe new activities that we can bring into your daily repertoire to maybe replace some of the old activities that might not be feasible or realistic, given some of the challenges that Parkinson's might be creating for you? Or can there be a modified way to engage in something that was once meaningful and might still be meaningful if we can just figure out a unique spin so that that one enjoyable task or endeavor can still be reasonable, can still be feasible, given the changing nature of Parkinson's?

When I talk about thinking outside of the box, or sometimes we have to build a better box, I like to share an example of my friend Howard, whom I worked with many years ago, probably ten or twelve years ago at this point. Howard had been a career firefighter and came to me for some psychotherapy about five years into his Parkinson's diagnosis because his symptoms had progressed to the point where he could no longer go out and respond to calls and fight fires. He became very depressed and very withdrawn.

Even though the local fire department was not only his profession, but also his family and his sense of social connectedness in the community, he had completely cut off ties with the entire establishment because he was so down and out. He just wasn't able to go and work with the organization in the way that he had historically done, which was riding on the truck and running into burning buildings, which just wasn't feasible anymore.

Over time, what we did in the course of our work together is we began to systematically test out new and different ways that Howard could still remain connected, could still remain invested, could still contribute to his local fire department, but that wasn't running into burning buildings with a hose trying to put out a fire. Over a period of about six to nine months, what Howard gradually began to do was he agreed, largely as an experiment, to say, "Oh, Doc, I'll go and do it, and then I'll come back and tell you that you were wrong."

Dr. Roseanne Dobkin 0:16:05
He's like, "Okay, on Saturday night, when they're all getting together for chili dinner, I'll go once and I'll see what it was like." So he went, and the good news was it wasn't as horrible as he thought it was. So he went back. In addition to getting together with the fire department and all of his friends there for the chili dinners on Saturday night, then he started going to the Thursday night trainings where they would practice some drills, but then they would just hang out and shoot pool and have some drinks. He found that to be enjoyable.

Then one day he decided, "Well, they've got a big volunteer initiative planned next week, and maybe I'll just go and I'll help collect some of the cash that may be floating in that day." He gradually began to connect in alternative and different ways with the fire department. Over the course of nine months, Howard moved from a position of being completely withdrawn and disconnected from involvement with this firehouse to not only helping collect funds for fundraising efforts, but actually spearheading all of the local fundraising efforts for that local firehouse.

What Howard came to recognize over time was that even though he couldn't literally and physically ride on a fire truck and run into a burning building, there were still many, many, many important and meaningful ways in which he could make a contribution to that fire department and to his unit. He wasn't running into burning buildings with a hose, but he was continuing to offer friendship and support to his colleagues that were. He was spearheading fundraising efforts such that the local department could raise the money that they needed to do the good work that they were doing in the community.

I'll just share with you that when Howard took over as the chair for the fundraising committee, his first independent campaign raised over fifteen thousand dollars, which was really significant for that community. What Howard came to recognize was there were many different ways that he could stay connected. There were many different ways that he could contribute and make a real difference, an important difference, even if it wasn't about keeping the blazes literally under control.

Again, we want to think outside the box. Can we reintroduce old activities that have sort of fallen off the radar for no good reason? Can we find new activities to replace old ones that aren't feasible? Or can we find creative ways to modify what's really meaningful for us so that we continue to contribute to our lives and to our families and to our communities? It's not about doing more. Sometimes it's about doing less, but it's about making smart choices.

We want to increase our involvement in activities that are going to help us to feel good about ourselves, that are going to help us to feel productive, to feel satisfied. Sometimes it's trial and error to figure out what that's going to look like or how that's going to play out. Oftentimes it might also mean that we have to problem solve around the physical limitations that we're experiencing. We may need to pace ourselves in a different way. Yes, we want to have goals, but they need to be appropriate and not super rigid. Maybe we need to plan around our off time.

There's going to be certain times of the day where it might be more reasonable to engage in goal-focused behavior, and other times of the day when maybe we know our medication historically doesn't work as well, where we want to focus on more calming or more self-soothing activities. We can always break up our activities. If you can't walk for 30 minutes at a time, maybe you can go out and walk for 10 minutes three times a day. Always follow through also with all of your referrals for PT, for OT, for speech, because following through with all of that multidisciplinary care is a very important, very effective way to take control and to be empowered in your own self-care.

Dr. Roseanne Dobkin 0:20:20
Now we're going to go to slide five. Some additional examples: when we experience depression in the context of Parkinson's disease, it's often common to also experience anxiety. There are a lot of wonderful non-medication approaches that are available for managing anxiety: different types of breathing exercises, muscle relaxation techniques, mindfulness-based approaches. If you were to go on Dr. Google and do a search, you could probably come up with dozens upon dozens upon dozens of recordings for different relaxation and mindfulness-based techniques.

I usually recommend to folks, take ten minutes once a day, or ideally twice a day, and practice some meditation. Practice some controlled or some paced breathing, because what that will do is it will help to keep that baseline level of anxiety lower so that you can more appropriately respond and react to the challenges that the day may be presenting for you.

Visualization is one of my favorite anxiety management approaches. The idea behind visualization is to pick a scene, pick an image. There's no right or wrong, but anything that kind of rings true for you. Pick a place that's associated with calm, with tranquility, with relaxation. Maybe it's the beach. Maybe it's the mountains. Maybe it's the hot springs. Maybe it's sitting in your kitchen with a piping hot cup of coffee, smelling cinnamon buns in the oven.

Whatever your calm, pleasant, relaxing scene is, close your eyes and get all your senses involved. Allow yourself to escape there for 10 or 15 minutes at a time, really thinking through what it would be like to be in that moment. What would you see? What would you hear? What's the temperature in the room? Get all of your senses involved to really create in your mind an experience that's associated with calm, that's associated with relaxation.

Experiences and mental images that are associated with calm and relaxation are completely incompatible with feelings of worry and tension and apprehension and anxiety. This is where we have the power to really exercise and exhibit that mental control to bring our minds, to bring our bodies from a place of anxiety and hyperarousal to a place of calm. Visualization is just one of several techniques, but there are muscle relaxation exercises, there are breathing exercises, there are meditations out there. I would encourage everybody on the call to do some research, look online, check out some self-help books from the library, and experiment with some different techniques that may be self-soothing, that may be calming for you.

Dr. Roseanne Dobkin 0:23:25
It's also important, if we want to think about overall calm and sense of inner peace, that we really focus on our sleep habits. If you're having a hard time sleeping, I would encourage everybody to try to come up with a more consistent sleep pattern or routine. In general, going to bed around the same time, getting up around the same time, give or take. You don't have to be watching it to the second, but in general, maybe you have a schedule where a person might go to bed, whatever works for them, around 10 and they get up around seven every day, and that's kind of a set schedule.

You want to limit being in bed during the day for long periods of time, or laying in bed unable to sleep for long periods of time at night. As a rule of thumb, if you're in bed and you're having a hard time falling asleep, give yourself 20 minutes, a half an hour. If you can't fall asleep, get up and go do something else in another room until you start to feel tired, and then come back to bed and try again in terms of falling asleep. What we don't want to do is associate being in bed with being awake. We want to associate being in bed with getting restful sleep. Sometimes there are sleep behaviors that may be more conducive to sleep versus others.

Now we're going to go to slide six. Slide six begins to talk about some of the cognitive interventions, some of the ways in which we can start to take control, not just over what we're doing or not doing in terms of our activities, in terms of our meditation, in terms of our sleep schedule, but where does our mind go? Where do we allow our minds to go in the context of the day-to-day? The reality is, every single one of us, we're constantly thinking. We're thinking all the time. But most of us, myself included, don't really stop to think about what we're thinking about, unless we're primed to do so.

Dr. Roseanne Dobkin 0:25:20
One of the most important non-medication cognitive-based techniques that we can really focus on is becoming more aware of our thoughts. Learning how to take out that mental remote control, just like we see in this little cartoon on slide six, and kind of press pause on some of that dialogue that's spiraling and spinning through our mind. Pause it. Think about it a little bit more carefully. Rewind it and then maybe replay it in a more balanced, healthier direction.

The reality is when people become depressed, when they become anxious, those thoughts that they are having in response to daily stressors tend to be very much skewed to the negative and tend to make coping with all of the challenges that Parkinson's presents even more difficult, and we want to make it easier. We don't want to make it harder. Sometimes a key step to making it easier is to really take a closer look at our thoughts and figure out, hmm, is the way I'm thinking about this as balanced as it could be, as accurate as it could be? Or maybe is there a way I can gain some better, some healthier perspective on the situation? There are dozens of techniques that we can use once we freeze-frame that thought to try to think about it a little bit more deeply, and I'm going to go over just a few with you.

Now I'm on slide seven. Oftentimes the first step to changing the thought, or to at least examining it more closely to determine, is there a place or a point of intervention here, is to catch the thought. For some people, just either writing it down, using voice to text, sharing the thought with a loved one, keeping it in a journal, just the process of putting pen to paper can allow them to separate themselves somewhat from the thought and to recognize, okay, I'm thinking this. This is an opinion, but just because it's running through my mind doesn't necessarily mean it's the absolute truth. Maybe I need to take a somewhat closer look before I make assumptions, before I plan my day around this idea that my thought is the absolute truth.

On slide seven, where I provide this thought log example, these are real-life, specific stories that a lot of my previous clients with Parkinson's have shared with me. This kind of gives you the flavor of what thoughts might sound like if a person is feeling more depressed or anxious. This first example comes from my friend Doris, who was feeling really depressed and was out one day doing volunteer work. She was telling me how she was working with these inner-city kids in her mentoring program, which had historically been really valuable for her, but in that moment, she was feeling really helpless when she was tutoring and mentoring. When I said to her, "Well, Doris, tell me a little bit about what was running through your mind. What were you saying to yourself?" She was able to very clearly express that she was thinking that she's not capable of contributing and that her life was meaningless. Those were the thoughts that were feeding into the negative emotion of hopelessness.

Again, in the cognitive model, it's not the situation per se that leads to the emotional reaction. The situation provides the context. That sets the stage. But it's the meaning, the interpretation of the situation, that ultimately guides our emotional response. For example, if Doris were to say to herself when working with the challenging adolescent population, "This is a really tough crowd today, but just by being here I'm making a difference," then she probably wouldn't have been feeling as hopeless. But because she was saying to herself, "This is meaningless and I can't contribute," she was feeling quite hopeless.

Some other examples that have been shared: my friend Sandy, not invited to lunch with colleagues one day, was feeling depressed, and the thought that she was having is, "My Parkinson's makes my friends uncomfortable." My friend Bob was one day thinking about going to a party and reported feeling anxious and scared, and the thought that he was having that was related to the anxiety was, "It'll be horrible if people see me shake." Again, it's not the invitation to the party, but it was Bob's interpretation of what might happen that was leading to the anxiety. If Bob were to say to himself, "It might be great to meet new people," there might still be some apprehension, but he probably wouldn't be experiencing as much anxiety as he was in response to the thought, "Oh, it'll be horrible if people see me shake."

The first step to looking at the thought a little bit more closely to see if there's room to balance it out is to catch it. To really check in with yourself: what's running through my mind? Why is the situation bothering me so much? What does this mean to me? Why is this so bad? Those might be some questions that you could ask yourself to help to figure out not only what you're feeling about something but what you're thinking about it.

Dr. Roseanne Dobkin 0:30:40
Now as we go to slide eight, another little cartoon. We need to figure out, once we pause our thoughts, are they balanced? What would a jury of your peers decide? If you were to share your thought, your impression, your appraisal with loved ones, would they agree necessarily? If you were to poll people online, would they agree necessarily that the way in which you were thinking about something was the only way to be thinking about or interpreting that situation? Or might there be other angles? Might there be other perspectives? Because again, I don't necessarily want people to think more positively about what's going on around them, but we want to make sure our thoughts are factually based. Having overly optimistic thoughts is probably going to be just as detrimental as having very pessimistic thoughts, but we want our thoughts to be balanced. We want them to be in perspective so that they don't impede our coping efforts and so that they help to actually facilitate healthy coping.

Again, this can be a little bit more abstract because we may all recognize that increasing exercise can be good for us, but it's a little bit less clear that maybe at times we also need to stop and think about what's running through our mind and figure out how we can make changes in that area. Now I'm on slide nine, examining the evidence. As I mentioned earlier, once we freeze-frame our thoughts, there are so many different techniques, so many different methods that we can use to look at the thought more closely to say, hmm, is this as true as it feels? Or is the thought maybe guided more by my emotion in this moment rather than by what's going on around me? Examining the evidence is one of several techniques that we might be able to use to test out a thought.

I love to share this example because it's so powerful. This example comes courtesy of my friend Bill, who I've known for years and years and years. Bill has more advanced Parkinson's disease and has been experiencing problems freezing, a lot of off time, a lot of dose failures, things along those lines. One day he came into the office, and he was just looking horribly depressed. So we started to talk through what had recently happened that was having such a negative impact on his mood. He's like, "Oh, well, Roseanne, had another really bad night last night. I got up, as I always do, 3 a.m. to run to the bathroom, and just as I finished washing my hands and was about ready to return to bed, I was frozen, and I couldn't move." He said that he couldn't help but view himself as helpless in that situation.

I said, "Well, tell me about it. What happened next? It's 3 a.m. and you're in the bathroom. What did you do?" And he said, "Well, like I told you, Roseanne, I was totally helpless. I couldn't do anything." I said, "Well, it's 11 o'clock the next day and you're on my couch, so something has happened between 3 a.m. and 11 a.m. this morning. Tell me what happened. How did the situation play itself out?"

What Bill was able to share, which was actually quite creative, because he had been freezing, because he had been having a lot of fluctuations and dose failures, he never went anywhere without a cell phone. He had his cell phone around his neck. What Bill actually did in this situation was he called his wife with his cell phone on the home phone, woke her up. She got up, went to the bathroom and helped him back to bed. Once we talked through it and examined the evidence for this idea that he was helpless in the bathroom in the middle of the night, what Bill came to realize was that yes, it's true, he was unable to physically move his feet in that moment, but he very much helped himself out of the situation. He was creative. He thought ahead. He planned in advance. He knew exactly what to do. He was empowered. He took control. He called his wife, and together they were able to get him back to bed.

We looked at, okay, what facts support this idea that you were helpless? What facts maybe suggest that that isn't so much the case? And if we look at the big picture, in totality, might there be a more balanced way to view yourself in the context of what happened last night? He was able to recognize after talking it through that he actually wasn't helpless, but he was quite empowered, and he really was able to take charge, to take charge and really enact meaningful change for himself in that moment. Examining the evidence can be, like I said, one of several techniques, but it can be quite helpful.

Dr. Roseanne Dobkin 0:35:27
As slide 10 shows, a behavioral experiment can be another effective method that we can use to test out a thought. Oftentimes if a person, if we're depressed, if we're anxious, we're making a lot of negative predictions. We're expecting worst-case scenarios. Things just aren't going to go right. There's going to be a bad outcome. Most of the time, the outcomes that we are predicting, if we're feeling really depressed or really anxious, might not be as accurate as we think that they are. Again, not that I want people walking around pie in the sky, always anticipating best-case scenario, but we want to anticipate what's the most realistic outcome, right? Not the best-case scenario, not the worst-case scenario, but what's in the middle? And how can we plan for that?

Oftentimes again, if we're emotionally not in the best place, we're jumping to conclusions and we're assuming the worst possible outcome. We want to work to fight back against that tendency. The great thing, if I had to find the great thing about negative predictions, is that we can test out predictions. We don't have to necessarily accept that they're true. Oftentimes we can do something to actively explore, is this prediction true? Is it as accurate as it feels? Or maybe it's a little bit off.

Here's another example from another old-time friend of mine that was very anxious, very much avoidant, very much kind of checked out from life because they were so concerned about what it might be like to have symptoms in public. The prediction that was made was that it would be impossible, not hard, not difficult, not requiring modification, but they were thinking in terms of impossibility. It will be impossible to have dinner in a restaurant because of my tremor.

Finally, I got them to agree, well, let's do an experiment. Again, let's test this out and let's see what the outcome is. If I'm wrong, you can come back and I will listen to "I told you so" for the entire hour that you're in my office. But let's just see what happens. So we did some planning, we got the family involved, and we decided, okay, maybe a good experiment to test out this idea, to test out this assumption that it'll be impossible to have dinner in a restaurant because of tremor, would be let's go to the Olive Garden, six o'clock Saturday night. There's going to be people there, but it's not going to be as crowded as it might be at seven or eight o'clock, when everybody comes out of the woodwork to go out to dinner. Let's just see what happens. If it's terrible, you never have to go back.

We planned for going. Again, I'll have to say, I was pretty sure that this person would be able to successfully go and have dinner in a restaurant because I knew them pretty well. But he was telling himself that he couldn't. He was telling himself that it would be impossible. It was a really nice behavior that we could test out and evaluate the outcome to see if that outcome matched that expectancy. What ended up happening was they went, they ordered food that didn't need to be cooked, they got a straw and a lid for their Diet Coke, and really liked getting out of the house. That negative expectancy, I cannot do it, it will be impossible, it will be a disaster, did not play out.

The only way that we were ever able to really determine that that negative outcome wasn't going to play out was to test it out and to allow life to give us the experience that showed, hmm, maybe things aren't always going to be as bad or as unmanageable as I fear that they might be. If you're making a negative prediction and it's amenable to testing it out in a safe way, I challenge each and every one of you: test out those predictions. After you test it out, compare the outcome to the expectancy and let's see how we do.

Dr. Roseanne Dobkin 0:39:23
If we flip to slide 11, I think this summary sheet kind of highlights the spirit behind the cognitive component of treatment. We want to take a negative thought, we want to freeze it, we want to use some type of intervention. Maybe we're going to examine the evidence. Maybe we're going to do an experiment. Maybe we'll do something like examining the cost and benefit of the thought versus changing the thought. Maybe we will act the opposite of the thought and see what that feels like. But we're going to freeze-frame that negative thought, pause it, and then do something to look at it more closely to see if we can then bring ourselves from a pretty skewed negative thought to a place of balance, to a place where we can achieve a healthier mindset and just better overall functioning.

Some examples again of real-life thought transformations would be freezing a negative thought like, "I am not accomplishing anything anymore," doing something with it, and then coming to a reframe that's more factually based, that's more balanced: "I'm still accomplishing many things for my family and community even though I'm no longer working in my business." Freezing the negative thought, "I am rapidly deteriorating," and reframing it to something along the lines of, "The neurologist said I was the same as I was six months ago and didn't change my medication." The thought, "Our future is bleak," and turning it on its head: "We can still live a meaningful life despite the symptoms of Parkinson's disease."

Circling back to my friend Bob that I mentioned earlier in the talk and his anxiety about social situations, taking the negative thought, "Nobody at the party will talk to us," freezing it, looking at it a little bit more closely, and then maybe after careful inspection, coming up with a more balanced thought of, "At least some people at the party will talk to us. It's highly unlikely that we'll be completely ignored." Again, I'm not just talking about taking the thought and flipping it on its head because it's more positive or because it just sounds nicer. We want to take the negative thoughts and flip them on their head because they are not true in their current form, and we want to balance them out so we can allow the true thought, the accurate thought, to guide what we do and what we don't do, how we feel and what we don't feel in the course of the day. That's where the control lies.

We may not always be able to control how the Parkinson's presents itself on a given day, but we can always control what we do or don't do in response to the symptoms that we're having. We can always control how we're thinking about what's happening to us, the meaning that we are taking away, our interpretation, and we can look at those things more closely to make sure that they're balanced. So we can have healthy thoughts that help us cope effectively rather than destructive thoughts that derail and sabotage our coping efforts.

Now I'm going to move on to the next slide and just talk a little bit, very briefly, about some of the research that I've done in this area. I practice these techniques clinically, and I've also done some research studies that have looked at how effective these techniques can be when we present them together in a package and we're really working with folks to help them make important behavioral changes, engage in goal-directed behavior, increase their involvement in meaningful and pleasurable activities in creative ways, and learn how to identify and, gosh darn it, start to talk back to those negative thoughts. We talk about Rock Steady Boxing. Let's give some of these negative thoughts a strong right hook and put them in their place. Can we crush them like a bug and get really efficient at that?

Dr. Roseanne Dobkin 0:43:13
I've done several studies. I want to share some outcome data from one of the larger trials that I've completed to date. I've got a couple of other large studies in the works, but in terms of complete data, there is a randomized study I did a couple years ago where we took 80 people with Parkinson's and their caregivers and we randomly assigned them to one of two groups. Half of the people just continued to keep doing whatever it was they were doing under the supervision of their personal doctors. The other half also continued doing whatever it was they were doing under the supervision of their personal doctors, but we also added a 10-week skills-based approach to their treatment-as-usual protocol.

We looked to see, okay, what happened? Is this any better? Is this any more effective, any more helpful? If we work with people to make key cognitive changes and key behavioral changes, do they feel better? Do they function better than they otherwise would if they just continued with business as usual? If we look at the depression outcome slide, which is the next slide, what we see is it actually did make a difference.

If we look at the folks that received the cognitive behavioral therapy versus those that received the treatment as usual, you can see that treatment-as-usual line is pretty flat. They certainly didn't get any worse, but they didn't get significantly better. For those who received the cognitive therapy and really learned and started to utilize coping skills that empowered them to respond differently to their symptoms when they were experiencing them, their depression decreased pretty steadily over the 10-week treatment period, as well as over the follow-up period.

As the next slide shows, it wasn't just depression that got better. When people learned to incorporate these refined coping skills into their day-to-day, their anxiety improved. They were coping more effectively in general. Social functioning improved. They were less avoidant. They were less likely to isolate. We even saw some nice trends, some nice change in terms of motor function and physical function. Just to clarify this point, it wasn't so much so that when people's moods improved, their physical symptoms improved, but their physical symptoms stayed stable. When people's moods didn't improve or deteriorated, the physical functioning started to tick in the wrong direction. Taking control of one's mood can be a really effective way for taking control of overall Parkinson's-related health. I think it goes without saying that negative thoughts also improved, as I hoped they would, over the course of treatment.

As the next slide shows, one of, I think, the really innovative things that we do in the treatment protocols that we run out of my lab is, to the extent that it's possible and is appropriate in a given situation, we try to involve a loved one in the person with Parkinson's therapy. Really to just give the loved one a primer on what are some of the changes we're trying to make, what are some of the adaptive coping skills that we'd like to see more of in the home environment, and how might you help to support and reinforce and facilitate those changes? What this caregiver participation graph shows is that the more involvement, in general, that a loved one has, the better the outcome for the person with Parkinson's. The effects last a lot longer.

The next slide shows we've done some variations of this protocol, and continuing to implement this type of therapy even over the phone, even if they can't come in face to face, can be really, really helpful. Not everybody might be able to attend face to face and sit down with a therapist, but being able to engage in this type of conversation over the phone, over web-based video conferencing, can be really remarkable.

Dr. Roseanne Dobkin 0:47:47
We found very similar effects when we have provided the therapy via phone, via web-based video conferencing, as via other means.

In conclusion, I really want to emphasize that your mood is a critical aspect of living with Parkinson's that you can control. I don't want anybody on this call to suffer in silence. There are effective non-pharmacological treatments that are available, and these treatments can be used standalone or in conjunction with antidepressant medication. Thank you very much for your time and attention.

Dr. James Beck 0:48:29
Dr. Dobkin, that was fantastic. Thank you very much. I really enjoyed the discussion, and I'm sure our audience did as well. We actually have a number of questions which are coming in. One of the questions that we have is, I know our focus of our talk today was really on non-medication approaches, but I just wanted to get this out of the way. Many people are asking, when we're talking about the depression that people experience with Parkinson's disease, are medications helpful for depression?

Dr. Roseanne Dobkin 0:48:59
Absolutely. Medications are definitely helpful. I think the rule of thumb that we tend to follow is, if somebody has milder symptoms of depression — and of course I qualify the term milder because if you're experiencing the symptoms, they're problematic to you — but symptoms that are having an impact but maybe not a marked impact, we'd probably want to start with therapy. When symptoms get to more of the medium range, they're not so mild anymore, but they're more moderate or severe, then we definitely would like to introduce antidepressant medications and really use the antidepressants in combination with the therapy because when we see more moderate to more significant symptoms, it's really that combination approach that can be very helpful.

Dr. James Beck 0:49:49
Fantastic. I guess that leads to another question, and one that I think many people may want to know is: how do people come to your office? I mean, what is the pathway that people are going to take in order to get help from a professional like yourself? Are they self-referrals? Are they coming through a neurologist? How do people begin this pathway to get the help they need?

Dr. Roseanne Dobkin 0:50:12
That's a great question. I think people come to me or to colleagues like me in a variety of ways. I'd say maybe about 30% of the time, they are self-referred and they recognize that they could be coping better or maybe feeling a little bit better than they currently are. They ask around and they figure out who they might be able to go and talk to about their problems. Sometimes we get referrals from primary care doctors, from other psychiatrists in the community. I'd say about a third of the time the referral comes directly from the neurologist or from the movement disorder specialist.

What I would suggest to everybody listening in is that if your mood is not as good as you'd like it to be, even if you're not sure, is this a clinical syndrome or just an adjustment difficulty, say something. Mention it to your neurologist, mention it to your primary care doctor, mention it to a friend and ask for suggestions, ask for referrals as to who you may be able to go and talk to about it. There's a wonderful network out there in the Parkinson's community, so I'd invite people, if they're not sure who to ask or where to turn, to possibly contact your local support group, any of the major Parkinson's foundations, and ask for mental health referral information, and they will be able to plug you in the right direction.

Dr. James Beck 0:51:36
Okay, perfect. This leads me to the next question. This is from one of our listeners in Oregon, and it's really about depression versus apathy. The first part is, since many people with Parkinson's disease experience apathy, what does it take to get them motivated enough to start seeking this help? And can you explain really what the difference is between depression and apathy?

Dr. Roseanne Dobkin 0:52:00
Sure. Why don't I do that first and then we'll circle back. There's a fine line. Some would argue that there's an artificial distinction. Many would argue that they're very separate and unique constructs, but I think the highest-level distinction that I can offer is depression is sort of feeling sad, feeling low, and apathy is more of a lack of feeling. Not really feeling anything versus feeling bad.

But there's a lot of overlap because when you're depressed, one of the key symptoms of depression is we lose interest. We are not as motivated to go and do because we're sad. If you're apathetic, you may be not as motivated to go and do because you don't feel like you care too much in the moment. I think what we spoke about earlier in the presentation, in terms of some of the behavioral strategies, some of the behavioral goals that we might be able to set for ourselves, can be helpful if people are feeling stuck in the mud either because they're depressed or apathetic or both.

Setting very small, very specific goals based on maybe what used to be important to you, based on what's important to your family. If you don't care about something for your own personal interests, well maybe you would care more because it would make your spouse feel better, it would make your family or your grandkids feel better. Trying to find maybe an external point of reference. Set a goal and make it a micro-goal, a goal that is more readily achievable. If it's too much to go outside and walk for 15 minutes, can you go out for 10? If you can't go out for 10, can you go out for five? If you can't go out for five, can you go out for three?

I've never had anybody tell me — probably because they'd be too embarrassed — but I've never had anybody tell me they couldn't go out and walk for three minutes. Make the goal that small, set yourself up for success, and then once you start to feel or to sense kind of a glimmer of accomplishment, a glimmer of success, it will become self-reinforcing and it'll make it easier to keep going. We almost want to start by taking an outside-in approach.

You set the goal, you make it small, you make it reasonable. You let the goal guide your behavior, but then once you start to get a sense of reward, of satisfaction from the experience of that goal, then that internal longing, that internal sense of enthusiasm will kick in. I think it's more of a question of working initially from the outside in rather than the inside out. If we wait for that initial feeling to come, we're going to just be waiting a really long time. We have to do something to jumpstart that feeling, and then the rest will fall into place.

Dr. James Beck 0:54:44
Okay, great. Thank you. I want to say just a little pause that we're getting lots of feedback coming in. There's a health professional in Massachusetts who's just found your presentation wonderful and says thank you, Dr. Dobkin. Another person from Pennsylvania, an allied health professional who has a brother who has depression and anxiety, has commented that your information has been incredibly helpful for them and their family and their loved one with Parkinson's disease. I really appreciate your time.

As I mentioned, on the slide right now in front of everyone on the screen is information about resources available through the Parkinson's Foundation. We have our Helpline, 1-800-4PD-INFO, that's 1-800-473-4636. We've got Centers of Excellence that are worldwide and certainly throughout the United States, and we also have fact sheets, particularly on mood, which is very relevant. We have our webinars which are going to be coming up as well. I'd like to take a moment again to thank our sponsors AbbVie, Sunovion and Lundbeck for supporting this process and making this series possible.

Dr. Dobkin, I want to follow up on some of the things you were saying regarding treatment. One of the things that we've talked about is that you're really helping people develop a lot of coping skills. This question's from New Jersey. Given the biological component of the depression in PD, how are these coping skills going to help people? It seems like depression is part and parcel of PD. How will using these skills really help people?

Dr. Roseanne Dobkin 0:56:25
That's a really great question, and it's actually one that I get all the time. I'm really happy that somebody in New Jersey brought it up so we can address it for the whole group. As I mentioned earlier when we were going over my very sophisticated bubble diagram of all of the different factors that are implicated in the onset and maintenance of depressive symptoms, yes, the biology is there, but it's one component. We can never be certain in any one person's case what the other contributing factors are, and the good news is we don't need to know.

Because even if somebody's depression was 100% biological, which is highly unlikely and would be impossible to prove, there are going to be behavioral and cognitive correlates of that biological depression. If somebody has a biological depression that's triggering them to be avoidant, to be inactive, that might be triggering them to think in an excessively skewed or negative way about themselves or the world or the future.

If we intervene in that behavioral bubble, if we intervene in that cognitive bubble and help them to develop more adaptive coping responses, more balanced ways of viewing themselves and their situation, there's a feedback loop that's constantly at play and works in all directions. If we make changes in the behavioral and the cognitive correlates, even assuming a purely biological depression, there's going to be a feedback loop and it's going to help to regulate the biology. All of those factors influence one another.

It's kind of a myth. We've always thought, in many cases, especially in the mental health world, well we have to figure out the exact pinpointed cause in order to make a difference. While, in the ideal world, that information would be fabulous, we don't always have to have it because all factors, all variables influence one another. Even if we pick any point in the cycle and we make effective change, it's going to help to balance out the other pieces of the cycle. If we can make healthy cognitive changes and if we can make healthy behavioral changes in that feedback loop, it's also going to help regulate a person's biology.

Now that we have the technology and sophisticated research tools at our disposal, there have been some trials that have been done — not in my lab, I can't take credit for this — but if we look at the broader literature, when people go through successful cognitive therapy and they scan their brains and compare those images, let's say to somebody that's been treated with antidepressant medication, there are positive brain changes that show up on imaging. They're a little bit different than they might look if the changes are coming from therapy versus medication, but they're positive nonetheless. It's a question of, are the changes being made kind of in a top-down way versus a bottom-up way, in terms of how our brain figures things out, but we can actually see on imaging that cognitive therapy leads to brain changes. We're not touching the biology directly, but we're having indirect influences.

Dr. James Beck 0:59:34
Right, thank you. We're approaching our two o'clock hour, and I'm just hoping I can get a few more minutes with you before we have to lose you.

Dr. Roseanne Dobkin 0:59:41
Absolutely.

Dr. James Beck 0:59:42
I just want to let everyone know that we have a survey on the screen right now, and we really value your input and feedback on these webinars. In fact, that's how we create these webinars, through surveys of our listening community and our Parkinson's community, both people living with the disease and those who are affected by the disease, the caregivers and the care providers. Just a couple questions on treatment. One from a health professional in Oregon: is there any research data, they ask, on the use of narrative therapy with Parkinson's disease?

Dr. Roseanne Dobkin 1:00:16
Off the top of my head, I don't know of any research data on narrative therapy per se. But what I will suggest is that there's definitely a place for all sorts of evidence-based non-pharmacological interventions that have been helpful in other populations to be utilized in Parkinson's disease. It's likely that they will be successful. It's not so much that we need to go back to the drawing board and start from scratch with the content.

It's more about figuring out how to take the evidence-based approaches that are available and just tailor them, tweak them, both in terms of points of emphasis, in terms of how the information is presented to best meet the needs of a person with Parkinson's disease. I would suggest, wearing your clinician hat, pick the intervention that you think is most suitable, is clinically indicated for the individual that you're working with, and then tailor it as you move forward.

Dr. James Beck 1:01:23
Great. I've got one quick question regarding the Hamilton Depression Scale. A caregiver in Pennsylvania was asking about access to that. Is that something that's relevant for someone? Is it more for a clinician, or is it something that someone can utilize on their own to help improve their mental state?

Dr. Roseanne Dobkin 1:01:45
Great. The Hamilton Depression Scale is actually a rating scale that we tend to use in research. It's something that a clinician would administer to a person with Parkinson's disease, and you have to rate symptoms based on frequency and impact and distress. It would be a difficult measure for a person to self-administer. That being said, there are dozens of measures out there that can be utilized as a quick mood check for yourself that would probably be more user-friendly.

Again, none of these are ideal to use in a stand-alone type of way. Most scales are probably best used in the context of a conversation with a healthcare professional, but there are measures like the Geriatric Depression Scale or the Beck Depression Scale that are out there that are more self-report questionnaires that a person can fill out and just track over time to see how they're doing. But my recommendation for any formal systematic assessment is that it's probably going to be most helpful to do in collaboration with a treating healthcare professional.

The one exception to that would be there are terrific self-help books that are available that really focus on cognitive behavioral treatment principles that can be utilized to help people cope more effectively with depression and anxiety. Often in the context of those self-help books, there will be little guides or quizzes that people can take as they work through the material. That's probably the most appropriate place to find information that you can use for self-help tracking. Certainly, if anybody wants to back-channel to me directly, I'd be more than happy to provide resources and names of some of the self-help books that I tend to recommend.

Dr. James Beck 1:03:37
Okay, great, thank you. I want one final question. As we're going into Thanksgiving, many people are going to be with their families and there'll be recognition that their loved ones might not be feeling themselves, and their mental health may be not what it should be. Is there one specific piece of advice that you would give to family members on how to help people deal with their loved ones? This is from a health professional in Ohio.

Dr. Roseanne Dobkin 1:04:11
Yeah, that's a great question. Again, it's going to vary somewhat situation to situation because there's just so much uniqueness that people bring to the table. But I think just letting your loved one that is exhibiting signs of distress know that you're there and you're willing to talk and to listen. In addition to that, maybe encourage them toward activity. Try to invite them to engage, to connect in whatever way is possible.

If they don't feel like going to the family dinner because four hours is just too long, maybe they'd be willing to go for an hour, and then you could take it from there. The other thing that I would point out is that when people feel depressed, they tend to think in a very depressed way, very negative thoughts, like we highlighted during the presentation. Not only do they tend to think in depressed ways, they also tend to speak in ways that reflect that depressogenic thinking. If somebody were to hear a loved one express very negative thoughts like, 'Oh, I have nothing to look forward to,' or 'I'm a hopeless case,' it can be really helpful to talk back to those thoughts, to really help the loved one balance the thoughts out in the context of your conversation.

If you hear a loved one say, 'I'm a hopeless case,' maybe pack a power punch and say something like, 'Well, actually, you're not a hopeless case, and you're doing all the right therapies, and you've got a great team of doctors working for you, and we're here behind you.' Rather than ignoring the negative thought because it makes you uncomfortable or you don't really know what to say in response or you don't want to say the wrong thing, try to help them talk back to it. Try to help them gain some additional perspective, some additional insight onto what they're expressing to see if that can be beneficial.

Dr. James Beck 1:06:04
That's fantastic advice. Dr. Dobkin, I really want to thank you for your time, and I want to thank everybody for their time joining us today, listening to our wonderful webinar on depression and Parkinson's disease. I also want to thank our sponsors a final time, AbbVie, Sunovion and Lundbeck, for their support in making this series possible. For those of you who want to listen to this webinar again to catch extra notes, we'll have an archive of today's webinar available on Tuesday, November 28. That's next week, and you can find it at www.parkinson.org. I wish everyone a happy Thanksgiving. Have a good day.

Dan Keller 0:02

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

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

Aaron Daly 1:21

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

Dan Keller 1:52

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

Aaron Daly 1:57

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

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

Dan Keller 2:52

Apathy is a concomitant thing with Parkinson's too.

Aaron Daly 2:56

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

Dan Keller 3:22

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

Aaron Daly 3:31

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

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

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

Dan Keller 4:40

Are there other things that care partners can do?

Aaron Daly 4:43

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

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

Dan Keller 6:05

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

Aaron Daly 6:19

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

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

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

Dan Keller 8:24

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

Aaron Daly 8:39

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

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

Dan Keller 10:26

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

Aaron Daly 10:38

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

Dan Keller 11:30

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

Aaron Daly 11:47

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

Dan Keller 12:24

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

Aaron Daly 12:29

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

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

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

Dan Keller 14:11

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

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

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

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

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

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

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

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

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

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.

Social isolation and loneliness are risk factors for poor health outcomes and mortality. Possible contributors to social isolation are mobility problems, diminished hearing or vision, anxiety, depression, apathy, fatigue, and the loss of loved ones. They occur in the general population and can particularly affect people with Parkinson's. However, not much research has been done in this area, prompting Dr. Indu Subramanian of the West Los Angeles Veterans Affairs Medical Center to conduct a survey among people with Parkinson's disease to investigate the association of social isolation with symptom severity and quality of life. She performed the survey prior to the COVID-19 pandemic, which made social isolation somewhat of the norm for many of us. In this episode, she discusses the findings of the survey and offers some ways that people may become more socially engaged.

Dr. Indu Subramanian 1:49

We looked at things that were beneficial for these patients in terms of their quality of life, and then we looked at things that were detrimental. We noticed that actually, loneliness was very detrimental to their health. The types of things that were positive included exercise. The loneliness factor in these patients was so significant that it was as bad for patients to be lonely as the beneficial effects of exercising seven days a week for 30 minutes a day was good for them.

Dan Keller 2:15

Do social isolation and loneliness affect people with Parkinson's in particular, or more severely than other people of similar ages?

Dr. Indu Subramanian 2:25

Yeah, so I think the Parkinson's population is specifically at risk for this problem. Many of our patients do have some sense of a stigma with carrying the diagnosis. They have some motor issues, like feeling immobile. Sometimes they may have a tremor that might be embarrassing, or they might be embarrassed by dyskinesia—some of the extra movements that they get—and so they may not go out of the home or be in social circumstances as much as people that are age-matched.

Then you add on the non-motor issues that our Parkinson's patients get, and that is really something that can affect their ability to leave their homes and connect with other people. We have apathy, we have things like depression and anxiety, and we have fatigue. A lot of these things can affect patients and their motivation to get involved in leaving their home and connecting with other people.

Dan Keller 3:16

Loneliness is really a feeling or a perception. So, how do you define loneliness? What domains does it fall into or contribute to it?

Dr. Indu Subramanian 3:26

So, that's a good question. You know, we look at social isolation, which is something that's a little bit more measurable. We can see how many people a person may live around, we might be able to see who they interact with, and you can measure these things. Loneliness is really this subjective feeling, and what I've sort of grown to understand is that there's this sense that you want certain types of relationships, you want certain types of qualities in relationships, and those may be different than the ones that you actually possess. It is this gap between the relationships that you have and the relationships that you want that really defines sort of this lonely feeling.

The other thing that was kind of interesting is that I had always had the perception that if somebody was married—if they were happily married, living in a home with somebody who cared about them—there was no way that they could be lonely, and I didn't have to ask about that. Actually, what I learned through some of the research was that you actually have to have three spheres of connection in order to feel connected to people.

There's a sort of intimate sphere of connection, in which you feel connected to perhaps a spouse. Then there's a second sphere, in which you have friends—a circle of friends that can provide this relational kind of connection. Then there's a third sphere, which is more of a societal sphere where you have a connection of community, maybe through something like a liked purpose or a liked interest. I take care of veterans; a lot of veterans feel connected to the VA and other veterans. Women who are moms might be connected to similar types of people. So, I think everyone has the need to feel connected in these three ways, and one can ask about these things specifically to help understand who may actually be lonely.

Dan Keller 5:02

Why are people with Parkinson's particularly at risk for being lonely?

Dr. Indu Subramanian 5:07

The problem becomes that there's sort of this self-fulfilling prophecy. You have patients who may be already withdrawing from society. Loneliness itself can affect health in general significantly. We know from other research in other areas that loneliness can cause increased morbidity and mortality. It's as bad for you to be lonely as smoking a half a pack of cigarettes a day or being obese.

There's also research that shows that loneliness can affect stress—it increases stress—it can affect sleep cycles, it can affect immunity, and it can affect cognition. The way that it affects cognition is pretty profound. People who are lonely, when you examine them, tend to fixate on more negative stimuli, they tend to ruminate on things over and over, and sometimes they sort of become paranoid if loneliness is left unchecked.

When we think about a Parkinson's patient, we have patients who may at baseline feel disconnected because of what we've talked about. They may have a stigma, and they may have motor and non-motor issues that cause them not to want to connect with other people. Then we add on the effects of loneliness, which can affect their cognition, their sleep, cause them to think bad thoughts, focus on negative stimuli, and increase stress. This can then impact other issues like their motor issues. It can affect their non-motor issues, and then it can become a bad cycle in which patients who are already at risk end up getting worse and worse. They then withdraw more and more, and can really get derailed with some of their mental state, their cognition, their motor function, and non-motor function.

So really, it's a population that's already at risk. We saw this data going into the pandemic, and then we add on the pandemic of COVID-19 with its restrictions on social distancing and sheltering in place, and this has really made us worry about this already at-risk population.

Dan Keller 7:02

You published this study in npj Parkinson's Disease, and you looked at a lot of symptoms, quality of life, and other measures related to isolation and loneliness, but you really didn't have a control group. These were people you were following. Is it possible that it's a case of reverse causality—that some of these symptoms that limit their social interaction are causing the loneliness, as opposed to loneliness causing an exacerbation of symptoms?

Dr. Indu Subramanian 7:32

Yeah, I think that's a really good question. That is one of the downsides of doing this type of survey. We have some data from non-Parkinson's patients on the effects of loneliness, and we see that this is something that can affect various measures of health. This has been seen in animal models, in various types of age groups, isolated medical students in testing situations, and even aging populations. So, we do know that loneliness affects health.

You're absolutely right, though, that we can't tell in the Parkinson's population what is cause and what is effect. We know that these things live together and that they can kind of compound each other. We have a figure in the data that shows information about non-motor symptoms, and it really shows that there are a number of non-motor symptoms that seem to associate with being lonely. These are things that you would predict would also compound the loneliness, so things like fatigue, poor sleep, anxiety, and depression. So we can't really say what's cause and what's effect; we just know that these things live together.

Our conclusions do describe these sorts of issues as possibly compounding variables. But I think we approach the data set from the perspective of what we could proactively do. I think that many of the interventions that we would talk about could actually help both. We are talking about ways that we can keep people engaged through proactive ways in social prescribing, trying to help them connect with people. We're trying to help them keep their wellness strategies in check, so trying to keep them exercising, keeping them doing mind-body approaches, and keeping them doing many of the things that would help their motor and non-motor symptoms anyway.

We're really just trying to increase awareness of this issue with neurologists who are treating Parkinson's patients, and not just neurologists, but really anyone who may be able to impact the day-to-day care of our patients. It might be the clerk who checks my patients in at the front desk at the VA, who might be able to have a chat and try to connect the patient with a resource at the VA.

We actually have a new social prescribing intervention. What they've done is they've taken volunteers who used to physically come into the VA, who were told to stop coming physically into the VA during the pandemic and have been missing their own volunteerism and the benefits from that. They redeployed this volunteer force and have been soliciting new volunteers, which has gone very well, actually. What they're doing is trying to match volunteers with like-minded or like-interested lonely patients, and really having them connect either through digital modalities, such as an iPad, or maybe just old-school phone calls.

Many of our patients are actually at risk for not having technology, or not being technologically savvy. Perhaps they don't have the funds to have good Wi-Fi, a computer, or a smartphone, and really are being left out of the current modalities of telehealth or other proactive strategies to outreach. If you're using a virtual support group, for example, or other things that require being able to operate a computer, you're missing out. So really, this is sort of establishing a very simple strategy for just proactive phone calls to lonely patients. I think we have yet to see what the benefits are, but I am really excited because it can possibly have benefits not just in the patients themselves, but even in the volunteers as well.

Dan Keller 10:53

From what you describe, it sounds like clinicians have to sort of intuit that this person may be lonely, whether it's the person checking them in, a nurse practitioner, or a movement disorder specialist. But are there actually any questionnaires or tools that could reveal this more directly? I guess the ultimate question is, how aware are physicians of the need to detect loneliness?

Dr. Indu Subramanian 11:19

What we know about loneliness is actually that loneliness is a pretty high risk factor in many populations, and especially among veterans, for suicide. So, the VA has actually taken this quite seriously.

You asked about questionnaires; actually, one of the tools is the questionnaire that comes out of UCLA. There's a number of questions—I think it's about a 10-question questionnaire in its totality, maybe 10 to 12—but I think you can take three questions out of that and actually get some yield. We're able to use these three questions to surveil patients, and my hope is to incorporate this possibly into the chart, the medical record, and have patients be identified.

It may not be me as the movement disorder provider with the white coat; it might be their primary care doctor, it might be a social worker, it might be clerks or somebody else that can kind of proactively reach out. But I think it's a very powerful timeframe that we're in, and hopefully, we can take these things a little bit more seriously and put in the resources for care that have probably been needed for a long time.

Dan Keller 12:25

If a person with Parkinson's does feel lonely, what can they do now?

Dr. Indu Subramanian 12:30

Well, I think one of the things we really know is that patients aren't going to come to us and complain about it. That's not something that is part and parcel of something that they would think should be talked about to a neurologist.

The truth is, and I think Dr. Vivek Murthy, who is our current Surgeon General of the United States, has done some amazing work. He wrote a book called Together, and he's really highlighted this with some of his own anecdotes about his own life and his own loneliness through middle school and high school. He discusses the effects of this on himself and talks about loneliness as sort of a societal pandemic, and this was a book that was written even before the current COVID-19 pandemic. It really has shone a light on the problems with expecting people to realize that this is a problem and complain about it, because the truth is that being lonely is associated also with a stigma. You feel that if you don't have people in your life that care about you, or if you don't have these relationships, that probably you didn't deserve these relationships, or maybe there's something unlikable about you, and that's why you're lonely.

A lot of people are embarrassed about this and they may not come forward, so I think we have to normalize this conversation and normalize the sort of attention to this as part of the holistic approach to patients with not just Parkinson's disease but health in general. I would hope that one could think about social connection as a basic nutrient, just like food, water, sunlight, and shelter. I think this is something that we need as human beings, and I think so much of our lives had kind of gone away from this before. The pandemic has been a time when we've been able to reflect a little bit more on how important this is for human functioning.

Dan Keller 14:17

What have we missed, or maybe nothing?

Dr. Indu Subramanian 14:20

Well, I think that we have, again, an opportunity. I've done some talking and I ended up actually getting a TED Talk invite within the VA system to talk about loneliness, because I think people realize that this is something that is necessary to highlight. I mean, I think these things can be very powerful. We're all human, even if I'm wearing a white coat, you know? All of these things can affect me just as they can affect you, as they can affect my patients, and even their caregivers.

I usually end these talks by saying, you know, think about how you can affect change in your own community. Perhaps connect more with your neighbors or connect more with the people who might have been forgotten. If somebody is living up the street who lives alone, and you know they don't have anyone to check in on them, maybe drop them a note, leave your phone number, or have a phone call. Maybe reach out to somebody on your Christmas card list that you've forgotten about since high school. I myself have done some of that during this pandemic time, and I think it's really been an amazing way to connect with people; it has truly been a silver lining.

So I think if you can make a change in your behavior, maybe reach out to somebody proactively, it may save somebody's life. You just never know. It's pretty amazing. Think outside that box.

There are a lot of teenagers around who are possibly helping schedule vaccination appointments for patients right now, individuals who might have come out of the woodwork in their communities. Perhaps we can continue the dialogue by having teenagers check in on the elderly. I know my oldest child is quite connected as the IT help desk support for his grandparents who live in Canada right now. It's part of their weekly check-in with their grandson to get all their devices fixed up, and also he gets to check in on them, so I think it could be a beautiful thing.

Dan Keller 16:01

Well, very good. Thanks for all the practical information. I'm sure it's going to come in useful for both clinicians and people with Parkinson's.

In a publication on the survey, Dr. Subramanian suggested that healthcare providers be aware that some patients may feel lonely even when surrounded by people, sometimes called being "lonely in a crowd". On the other hand, some introverted people may prefer not to have others around them and report no issues with feeling lonely. But for individuals who feel lonely and are unable to influence their social conditions, the situation may be especially stressful.

One new concept is social prescribing, where clinicians recommend community resources or activities to help people find and develop healthy social connections. Such resources may provide home visits or phone calls on a regular basis, or connect people to social programs in the community. These sorts of programs may increase interactions and diminish loneliness for both the recipients of the resources and for anyone volunteering at them—for example, to make the calls.

Resources and programs may include exercise or art classes, volunteer opportunities, self-help groups, and activities such as gardening, cooking, or other hobbies. All these activities in themselves may be beneficial, but more work still needs to be done to see if relieving social isolation slows the progression of Parkinson's.

For more on the subject, search our website at parkinson.org for "loneliness" and for "social isolation". There are also past podcasts titled Mental Health in a Medical Setting, two on mindfulness in PD, and another on tai chi exercise. You can also engage with us weekly through our educational and wellness PD Health at Home programs by visiting parkinson.org/pdhealth.

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

If you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. If you enjoyed this podcast, be sure to subscribe, 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. Indu Subramanian received her medical degree in 1996 from the University of Toronto, Canada. She did her neurology residency and Movement Disorders fellowship training at UCLA. Dr. Subramanian has stayed on at UCLA and is now a Clinical Professor of Neurology. She established the movement disorder clinic at the West Los Angeles Veterans Administration and has assumed the position of the Director of the South West PADRECC (Parkinson Disease Research, Education and Clinical Care) Center of Excellence in Parkinson Disease. She has developed a strong interest in integrative medicine with a special interest in Yoga and Mindfulness. She underwent a 200 hour yoga teacher training and studied mindfulness at the VA with J.G.Serpa and Christian Wolfe through Insight LA. She is designing a yoga teacher training program for yoga instructors who are interested in working with PD patients. Dr. Subramanian recently got board certified in Integrative medicine. She is also passionate about palliative care in Parkinson Disease. She is the host of a virtual support group with world experts in PD and co-edits a blog for PD patients.

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.

While medication is a mainstay of treatment for Parkinson's disease, many other interventions and techniques can also be helpful, such as exercise, dance, and music therapy. Another avenue is mindfulness, in which a person becomes consciously aware of something, whether external or within their own body. This mental state of awareness focuses on what is happening and perceived in the present moment. Calmly acknowledging and accepting these feelings, thoughts, emotions, and bodily sensations is at the heart of this therapeutic technique. Research has shown benefits on stress, pain, anxiety, and even immune response.

Occupational therapist Dr. Jordan Staenberg works with people with Parkinson's and says she has seen profound results using yoga and mindfulness for self-regulation of nervous system function. When I spoke with her, she said Dr. Jon Kabat-Zinn, the person who is credited with applying mindfulness within a scientific framework, gave one of the best definitions,

Dr. Jordan Staenberg 1:56

which is the awareness that emerges when we pay attention on purpose, in a particular way, non-judgmentally, from moment to moment, as the moments unfold in front of us.

Dan Keller 2:13

What are some of the components of mindfulness?

Dr. Jordan Staenberg 2:16

The components boil down to that paying attention, and then you really want to do that intentionally, so really being open and curious. I like to take an experimental approach, so that we're really open and curious about the body, noticing what's happening at any given moment, and then maybe performing some sort of action and seeing what the results are within the body.

Dan Keller 2:48

This sounds like sort of an if-then scenario. If I do this, then that might happen. Can this work positively and/or negatively?

Dr. Jordan Staenberg 2:56

Yes, so we can use that kind of if-then phenomena as we learn about our own bodies and notice if I do something that creates a positive effect, then I want to remember the things I did that led up to that point, so that I can repeat it again in the future if needed. For example, I like to teach my clients about the breath and the breath's interaction with the nervous system, and the breath is deeply tied to the nervous system. And I draw it out for all my clients using the three diaphragms model that's illustrated by Dr. Matthew J. Taylor, and you can find this model on YouTube, if you just pull up YouTube and search for "three diaphragms model."

What this model tells us is that the diaphragm and the pelvic floor work in a rhythm, and this rhythm alerts the parasympathetic nervous system or provides parasympathetic optimization, and what that means is that brings the body into a more calm and relaxed state. So, parasympathetic is sometimes referred to as the "rest and digest" state of the nervous system, where everything's kind of calm and relaxed, and you can move forward with clarity in the world.

And then there's another breathing pattern that comes in times when we need extra breath, and that comes from the thoracic outlet and can be seen as the muscles of the chest and the neck tightening and lifting the rib cage in order to get that extra breath needed. And so when the body is in this mode of breathing, then we are in the sympathetic or "fight or flight" pattern of the nervous system, and what that means is that the body is activated in a stressful way.

And so, for example, a patient might have increased tremor during that time of sympathetic activation, so we can then teach our clients and our patients, "If I notice I'm having a lot of tremor, I can feel what my breath is in my body and notice which state of the nervous system I'm in." So the mindfulness component comes in with the developing of this internal awareness, knowing what the sensations are of the body, and being able to recognize patterns of the body that match different patterns of the nervous system, or even different outputs like tremor or increased respiratory rate or shuffling of gait, things like that, freezing of gait.

And then we can teach control of the nervous system or self-regulation of the nervous system by teaching techniques that change the breath pattern, for example, like expanding the lower belly breath, and maybe even doing some exercises or stretches to stretch the muscles of the thoracic area of the rib cage, the intercostal muscles. And so then we can get a deeper, more full breath that links up with that parasympathetic rest and relax component of the nervous system. And then the client can do that breathing technique, and then again we come back to that if-then paradigm: so if I'm tremoring excessively, then I implement this low belly breathing pattern, the result is decreased tremor, or I'm more calm sitting with my friends, or I'm able to perform a buttoning task, or use my toothbrush, or handle a utensil better. So we bring all of those skills then back into their daily life.

Dan Keller 7:03

It sounds like you sort of divide the body into components—there's breath, there's muscle relaxation. Am I on the right track there?

Dr. Jordan Staenberg 7:11

I really like to view the body as a whole dynamic system, so there's different ways that you can approach the system to create change. It's a dynamic system, and each aspect of the system—the mind, the body, the breath—they all influence each other. And so it's more that we want to choose for each individual client which is going to have the greatest impact if I address the breath, if I address the body, or if I address the mind. How can I influence the dynamics of the system?

Dan Keller 7:50

I know it must vary from person to person, but how long does it take to learn these techniques for them to become effective for someone?

Dr. Jordan Staenberg 7:59

So that's a really good question, and it does—it varies from person to person. In my experience, the earlier you begin to develop this skilled awareness—being open and curious and non-judgmental about the body—then the more skilled you will become at implementing the tools in your daily life.

So one factor is home practice. Clients come to see me, and I might spend one to two hours a week with them in order to facilitate these skills. However, if they go and do their home practice, or exercises I give them to do at home, or experimental techniques to do when they're out with their friends—just paying attention, different ways to pay attention—if they practice those, then they have more rapid results. If you don't practice regularly, it becomes more difficult to implement in social situations, for example. So there's a difference between regimented practice, like an exercise, and then practice in the real world, and both are very important.

The other factor in the effectiveness of the mindfulness techniques is really, in my experience, based on how much anxiety the person has. If they are already very anxious and have a very busy mind—even if they don't feel that their mind is negative with thoughts, but if the mind is just busy and has difficulty quieting—there's techniques that we can use before we get to this mindfulness aspect that will help them to harness their attention in a better way.

Dan Keller 9:47

Once someone is adept at this, and they're in a situation, how long does it take them to sort of put it into motion and relieve or alleviate what would otherwise be a problem?

Dr. Jordan Staenberg 10:00

Well, I've had clients really be able to implement it within one or two sessions. If you can really be aware and open and curious, then you can see the change. So we use a technique of baseline action and reflection, and I ask all my clients to examine their own body, their thoughts, feelings, sensations, emotions, breath before we take any action, and then maybe complete an action step, and then reflect: "How do I feel now? What has changed?" And nothing is revealed except in contrast. So, if clients are able to see contrast, then they can pick up very quickly on what they want to achieve.

Dan Keller 10:54

Is there a take-home message for someone about learning these techniques and what it can do for them?

Dr. Jordan Staenberg 11:02

Yes, I would say that learning mindfulness techniques can help improve your awareness and really empower you to feel in control of the symptoms that so often feel out of control. So, I would recommend even just looking up some meditations or mindfulness techniques on the internet. There's a lot of great apps for your phone; Insight Timer is one of my favorites, where you can listen to a mindfulness meditation or a guided meditation to take you through a scan of the body, so that you can begin to become more skilled in it. It also could be helpful to find a mindfulness or yoga teacher in your area and work with someone one on one.

Dan Keller 11:54

Great, thank you. Bye. In these trying times of social isolation, everyone could use some stress reduction. So, the Parkinson's Foundation invites you to Mindfulness Mondays, where every Monday we have expert speakers giving tips on staying mindful and giving you a chance to interact with other people with Parkinson's as part of our PD Health @ Home virtual educational and wellness programs. These events can help you kick off your week with calmness as you take part in guided relaxation techniques.

You can register for upcoming Mindfulness Mondays at parkinson.org/pdhealth, and you can find archived versions of past Mindfulness Mondays on our website as well. You can also check out our podcast episode 78, "Benefits of Self-Awareness with PD," for more on the benefits of cultivating self-awareness and how it relates to health confidence. And as part of Mindfulness Month, next week's episode will continue on this theme, expanding on the benefits of mindfulness techniques.

Also in the virtual realm, in May, are our signature spring walks, Moving Day, a Walk for Parkinson's. Even though we won't be able to move together in person, we can still unite in the fight against Parkinson's from the comfort of our homes. Join us online Saturday, May 9, for a virtual walk to celebrate the power of exercise by moving and fundraising to beat Parkinson's together. For more information and to register, go to movingdaywalk.org.

As always, our PD Information Specialists can answer questions and provide information in English or Spanish about today's topics or anything else having to do with Parkinson's. You can reach them at 1-800-4PD-INFO. To receive news and updates about future events and resources, you can opt into our email list at the bottom of our website's homepage. If you have questions or want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback, or if you prefer, email us at podcast@parkinson.org.

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. This episode is supported by a grant from Genentech, a member of the Roche Group. Thank you for listening.

Jordan Staenberg is a doctor of occupational therapy and a certified yoga therapist at the Barrow Neurological Institute’s Muhammad Ali Parkinson Center in Phoenix, Arizona, a Parkinson’s Foundation Center of Excellence.

Dan Keller 0:08

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

Being aware of one's own thoughts, emotions, motivations, behaviors, strengths, and weaknesses, among other aspects of the self, is known as mindfulness. This self-awareness that can be found through mindfulness allows us to intentionally manage aspects of the self, which can lead to heightened peace and happiness. The good news is that people can learn, practice, and cultivate self-awareness to set goals, change behaviors, and manage emotions. I spoke with neurologist Dr. Carsten Eggers about some of the techniques that people can use to become more self-aware, how self-awareness and health confidence go together, and how health confidence can help people manage a disease such as Parkinson's. First of all, what is self-awareness as it pertains to Parkinson's or any disease, and why would that be important?

Dr. Carsten Eggers 1:42

I think self-awareness is something which is crucial for every day's life of every person, but especially in Parkinson's as you have to be aware of your body, of yourself. This has an impact—a better understanding of the disease, signs, and symptoms. So it's something which has to do with coping of symptoms which, if you have an understanding and see and feel what is your body talking to you, it's just about understanding and accept situations where you are in. And lastly, you can develop better self-management strategies once you realize and recognize what your body is telling you.

Dan Keller 2:22

How does health confidence come into play? There is this term about self-awareness and health confidence being used to manage your illness.

Dr. Carsten Eggers 2:32

I think health confidence is something which can give you back control about your body. If you are in a specific situation, you have a better control what your body is telling you in a specific moment, and on the long term, you have a better idea how to cope with symptoms.

Dan Keller 2:53

How does it manifest? What does someone with health confidence do differently?

Dr. Carsten Eggers 2:57

I think if a patient with Parkinson's is able to perceive what he is feeling in a specific situation—if he's understanding what his or her body is telling him or her—they are in the best case that they can take over action again. I'd like to give you an example. If a patient with dyskinesias is not really realizing that he or she is dyskinetic, he might tend to fall. And if he is aware what is really going on with his body—that he is dyskinetic—he can develop strategies how to, first of all, realize that he is suffering of this dyskinesias. And lastly, what he can do in terms of self-management.

Dan Keller 3:41

Can self-awareness be taught? And does health awareness underpin health confidence?

Dr. Carsten Eggers 3:47

Yes, absolutely. I think talking about how you can really teach self-awareness, it's talking about mindfulness. And mindfulness is an issue—a topic which came up quite a lot in the last years. So if you are talking about mindfulness, it's that you are conscious of a very single moment, that you are aware of symptoms and do not judge them, and at least that you accept the situation how it is. And this is something which can be taught. There are several techniques which include, for example, yoga or body scanning or something like that. Unfortunately, the evidence for that is still rather limited, but many research centers are working on that. Some of the Centers of Excellence of the Parkinson's do have research projects currently investigating how mindfulness can be used in Parkinson's to increase the self-awareness.

Dan Keller 4:44

What about things like information gathering and list making, just to be more self-aware—learning what to be aware about, and also then having a guideline for what to be aware of?

Dr. Carsten Eggers 4:58

I think that's finally what you have to be taught. But if you are not aware what your body is telling you, you are not able to draw the consequences out of that. So first of all, I think being more mindful what your body is telling you, then taking back control, and then you have to be educated what to make out of the specific situation. And this is definitely an issue of education.

Dan Keller 5:24

There's one thing to be self-aware. There's another aspect of, how do you remediate the problem once you're aware of it?

Dr. Carsten Eggers 5:33

Yes, absolutely. So this is what I think—what I just wanted to explain is, after you realize there's a symptom going on, you need strategies how to resolve them. And this is what you should learn through education, through self-management programs. Unfortunately, there are not that many self-management programs in its complexity available, but there are educational materials which teach you how to react, for example, in a situation with freezing of gait. But first of all, you have to be aware that you do have this specific symptom, and if you have not learned how to recognize what the specific symptom is telling you, you are not able to use the self-management technique.

Dan Keller 6:18

It sounds like it may be worthwhile looking beyond what the Parkinson's Foundation and other organizations provide that specifically deal with Parkinson's and just find more mind-body kind of programs out in the community.

Dr. Carsten Eggers 6:34

Actually, yes. We at Philipps University are working on that, because I think you can't use just these general programs because they have not been adopted to Parkinson's patients. For example, you can't use all these specific yoga settings because, for example, we use yoga sitting on a chair, which is definitely different from many popular yoga classes. And so you have to adopt it both to the patients and to the individual signs and symptoms of the patients. So yes, it makes sense to look for more general techniques, but you have to adopt them to Parkinson's specifically.

Dan Keller 7:12

We've been talking about self-awareness to set goals and change behavior. Can it also be applied to the body itself—body mechanics, how you move and how to relieve pain?

Dr. Carsten Eggers 7:25

So far, we know that if you are aware of your symptoms and if you're mindful, it can reduce both stress and anxiety. And as we know that many of the symptoms exaggerate or worsen in a situation which is stressful, it's more a kind of indirect effect. But as far as I know, it's not possible that you have a direct connection through mindfulness towards the symptoms. So it's more or less, yeah, what I said, an indirect effect.

Dan Keller 7:56

Is there value in the caregiver or care partner participating in these sorts of things to some extent?

Dr. Carsten Eggers 8:03

Absolutely. So first of all, I think the patient has to be aware of its symptoms, but especially for communication, it's crucial that the caregivers are aware that the symptom perceivement of the patient is completely different. So there's the subjective perceivement and the objective perceivement of both caregivers or professionals. And it's something that caregivers have to learn that in terms of communication, it might be necessary that patients have to be educated and told about impaired self-awareness. And this is something which I would like to stress, yes.

Dan Keller 8:40

What else is important to add or helpful?

Dr. Carsten Eggers 8:44

I think that this is a rather new field of research. I'm very happy that many of the research centers within the Center of Excellence are working on that. Yes, and I'm very delighted that this has found broader research interests.

Dan Keller 8:59

Are you doing research in this area?

Dr. Carsten Eggers 9:01

Yes, we are doing quite a lot of that. So we have developed a specific scale to measure impaired self-awareness of motor symptoms. Currently, we are working on impaired self-awareness of cognitive symptoms. For example, patients with mild cognitive impairment do not see how they are cognitively impaired. And we are working on imaging these networks within the brain through MRI or PET techniques. So yes, there's a broad field coming up. This year, for example, there's actually a mindfulness conference which we are participating in, which is just trying to establish the connection between neuroscience and mindfulness. So there's a lot going on, and we are doing some research as well. Yes.

Dan Keller 9:48

How do you compare what the patient is self-aware of with the reality? Do you ask the caregiver, or do you do objective testing if they have a good picture of themselves?

Dr. Carsten Eggers 9:57

In terms of motor symptoms, we do video recording, and then we do have the subjective perceivement of symptoms. So patients do tell us, do they have a specific symptom asked for? And we do have the objective rating of a rater. And the discrepancy between the subjective and objective impairment, this is what we call the impaired self-awareness. And you can do that for motor symptoms or cognitive symptoms or whatever.

Dan Keller 10:24

Is there a take-home message for people who may want to develop self-awareness?

Dr. Carsten Eggers 10:29

I think, first of all, you have to use the basic techniques of mindfulness. So just get a better feeling for your body. Be conscious what your body is telling you, but don't judge that, and take your mind toward this specific moment and accept it like it is. And this gives you a better idea and impression after that how to deal with these specific symptoms.

Dan Keller 10:55

Very good. Thank you. Self-awareness does not involve only what is going on in one's mind as it relates to Parkinson's. Deficits in self-awareness may extend to failing to notice movement problems, including levodopa-induced dyskinesias, softened speech, or a diminished sense of smell. Nevertheless, mindfulness training leading to self-awareness may benefit people with PD, especially in the areas of mood, emotion, and motivation. We encourage you to get recommendations from trusted members of your healthcare team on these training techniques.

In the meantime, the Parkinson's Foundation is dedicated to bringing you virtual educational and wellness programs through PD Health @ Home. During a time of social distancing, we don't want members of our community to emotionally isolate, which is why PD Health @ Home will host weekly online events designed for you to engage and join us virtually for these events, which include Mindfulness Mondays, kicking off your week with calmness as you take part in guided relaxation techniques to help boost brain power and reduce stress. Visit parkinson.org/pdhealth to register today.

And speaking of awareness, this time in a slightly different sense, April is Parkinson's Awareness Month, and you can help people with Parkinson's in your community by participating in it. So please visit parkinson.org/awareness to help us raise awareness of PD. This year's theme is #PlanForPD, highlighting the importance of planning ahead when living with Parkinson's disease.

As a reminder for an upcoming event in May, our signature walk event, Moving Day, a Walk for Parkinson's, is going virtual this year. While we may not be able to move together in person, we can still unite in the fight against Parkinson's from the comfort of our homes. Join us online Saturday, May 9, for a virtual walk, when we'll celebrate the power of exercise by moving and fundraising to beat Parkinson's together. Learn more and register at movingdaywalk.org.

As always, our PD Information Specialists can answer questions and provide information in English or Spanish about today's topics or anything else having to do with Parkinson's. You can reach them at 1-800-4PD-INFO. To receive news and updates about future events and resources, you can opt into our email list at the bottom of our website's homepage. If you have questions or want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback.

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

Prof. Dr. Carsten Eggers, MD, Professor of Neurology, serves as the vice-chairman of the Department of Neurology, Phillips-University Marburg, Germany (2016 to present). He completed his medical studies in 2005 after visiting the University of Hamburg, Germany, University of Cologne, Germany and University René-Descartes V in Paris, France. His medical thesis was on “Implementation of an interactive informed consent programme before gastric banding in morbid obesity”. He completed his postgraduate education at the Department of Neurology in Cologne, Germany (Prof. Fink) with research projects in the Neuroelectrophysiological Lab of Prof. Rothwell, Institute of Neurology, Queens Square, London, UK and the Neuroimaging Lab at the Feinstein Institute for Neuroscience (Prof. Eidelberg). He received his board certification in 2011, his habilitation on “Neuroimaging of Parkinsonian Subtypes” was finalized in 2013. He was appointed as consultant of the Department of Neurology, Cologne, Germany in 2014.

His research focus are Neuroimaging of Movement Disorders, Neuropychological characeristics, symptoms and therapies of Parkinson’s Disease and integrative care research in Parkinson’s Disease. In this context he founded the Cologne Parkinson’s Network in 2011, where he established an extensive care programme with interactions between neurologists in private practice and the Department of Neurology of the University of Cologne. Since 2017 he chairs the MDS-task force on “Integrated Care in Movement Disorders” and since 2018 the German Parkinson Societies Work Group on Parkinson Networks. Since 2012 he is project leader of one project within the DFG-funded Clinical Research Group 219: “Basal-ganglia-cortex-loops: pathological interactions and their therapeutic modification” on “Connectivity changes as a pathological link between striatal and cortical changes within subtypes of Parkinson’s Disease”. He is the medical director of the Parkinson Center of Excellence and chairman of the Parkinson Network Alliance Marburg. He is author of >120 publications, including 70 peer-reviewed, and has an H-Index of 22.

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.

Depression is common in Parkinson's disease, in part caused by a change in brain chemistry and affecting at least 50% of people with the disease. It's not merely temporary sadness, but manifests as overwhelming feelings of sadness, loss, and hopelessness. There are effective medication and non-medication treatments, but because depression is often under-recognized by healthcare providers and underreported by people with PD, it may go untreated, resulting in diminished quality of life.

To get some insights on depression in PD, I spoke with Veronica Bruno, a movement disorders neurologist at the University of Calgary in Canada, a Parkinson's Foundation Center of Excellence. We talked about the need for better recognition and treatment of depression in PD, as well as some of the pharmacologic and non-pharmacologic treatment strategies. Being such a common feature of the disease, I asked her when depression may occur.

Veronica Bruno 1:56 It can appear, interestingly, at any point during the course of the disease. So for many of the people diagnosed with Parkinson's, it may have been a problem years before the onset of the motor symptoms of the disease, and they may have been diagnosed with something unrelated or something else for some time, until finally the diagnosis of Parkinson's is reached. For many other people, it can be part of the time of the diagnosis itself, when they have to learn a lot about the new diagnosis and the disease. And in many other cases, it can appear as a later non-motor symptom of the disease in mid to late stages.

Dan Keller 2:38 So it can be sort of a prodrome; it may eventually reveal Parkinson's disease.

Veronica Bruno 2:45 Exactly, it's one of those prodromal premotor symptoms. In conjunction with constipation, some sleep disturbances, depression, and anxiety—usually combined—can be some of those symptoms that may precede the onset of the motor symptoms up to 20 years.

Dan Keller 3:02 Does it respond to dopamine or does it respond to typical antidepressants?

Veronica Bruno 3:08 So this is a great question. In fact, the physiopathology or the mechanisms of depression in Parkinson's seem to be a bit mixed and different than depression in non-Parkinson's patients or people without Parkinson's disease. So in some instances, when depression is present before the diagnosis and the treatment with dopamine therapy is started, patients notice—people notice—a significant improvement in the depression because of the dopamine medication.

So as a first stage, the most important thing is to chat with the doctor to see, is this depression? If it's depression, could this be related to Parkinson's disease? And if it's related to Parkinson's disease, maybe see if there is any room for optimization of the dopaminergic therapy. If the dopaminergic therapy is at the optimum point, then there is also evidence that many of the regular antidepressants that, instead of working on the dopamine system, work with other neurotransmitters inside the brain, can also be helpful, and it may always make sense to try to see if it produces a further improvement in the symptoms.

Dan Keller 4:21 Can they ever interfere with the dopamine?

Veronica Bruno 4:24 Not with the levodopa, or with most of the medications that people with Parkinson's usually have as a prescription. There is one exception, however, that is important to discuss with the pharmacist and with the physicians. That is when the patients are taking inhibitors of the monoamine oxidase B—this is a difficult name, but medications that maybe are familiar for many people, like rasagiline or selegiline, or safinamide. Those medications have a potential interaction with many of the commonly used antidepressants, so it's important to consider this.

Usually in practice, it's no big deal, but theoretically it can produce a severe side effect. So, at least the patient, the physician, and the pharmacist need to be aware, so they can monitor for potential interactions if they are taking those medications. Safinamide is a bit newer and is supposed to have less of a formal contraindication; however, we still have to monitor for this potential interaction.

Dan Keller 5:30 What about non-pharmacologic interventions, often called talk therapy?

Veronica Bruno 5:35 Yes, so of course the evidence, in terms of publications or studies comparing, say, cognitive behavioral therapy, counseling, or psychotherapy, is less than the ones that we have for pharmacological therapies. However, as in many other populations, people that can experience depression benefit from being able to share the emotions that are maybe triggering or worsening those symptoms, identifying if there is something triggering those types of thoughts or symptoms, and also being able to share.

Because sometimes what everyone assumes is depression may be something different, like some anxiety, or maybe just sadness, or the patient may be feeling lonely or isolated, or you may just be experiencing other symptoms of Parkinson's disease, like some memory changes or apathy. So, it's very important to find your space to discuss what you're experiencing with someone that can be your neurologist, can be your family physician, can be your family, or any other health professional, like a specialized nurse or a counselor. Once that you can put into words what symptoms you're experiencing, it's easy to reach, get a diagnosis of what's the main problem, and then tackle the problem appropriately with pharmacological or non-pharmacological approaches, and whatever it may be necessary to make you feel better.

Sometimes many clinics, many of the centers that treat patients or people with Parkinson's, mostly they have neuropsychiatrists or psychiatrists that are specialized in the management of people with movement disorders and people with Parkinson's disease, and that's usually extremely useful. Because it's not like just treating depression like in the general population, but taking into account all these elements that are very unique for Parkinson's disease, and they consider them when they are planning the best possible management plan.

There are other non-pharmacological interventions that are important, and they are useful, and they have shown to be very useful, independently of psychotherapy, or as you mentioned, counseling, or talk therapy, like exercise. Exercise has a dramatic effect on mood in Parkinson's disease. There is, like, evidence in terms of studies that have shown it, but in clinical experience, we can probably all say that every single person that I know with Parkinson's who has started a good exercise program not only notices the benefits on the motor aspects of the disease, but a significant improvement in mood and anxiety and depression as part of that spectrum.

Dan Keller 8:33 Also, thinking fatigue, things like that—does treating depression help with those, or does exercise in itself help with those?

Veronica Bruno 8:41 Yeah. Well, fatigue seems to be, for what we know today, a separate symptom that sometimes can be associated with depression in Parkinson's, and sometimes it's not associated with depression. But for sure, fatigue itself in the general population is a symptom of depression. So when you're experiencing fatigue and there's not a clear cause, it's again very important to discuss this—not assume that this is normal or this is part of the disease and you have to deal with it, but maybe discuss this with your health providers.

Because maybe, again, optimizing the management of your medications, evaluating if there is a component of depression, and treating it with different types of interventions can reduce the fatigue, and also give you more energy to then engage in an exercise program, in a psychotherapy, in seeing your friends and family, and like doing more things that you are engaged with and that you enjoy. And that, for sure, like a vicious positive cycle, ends up improving all the symptoms.

Dan Keller 9:45 I understand that depression has been correlated with later dementia. Does treating depression stave off or lessen the risk of dementia, or isn't it known?

Veronica Bruno 9:58 This is an amazing question. This is still unknown for multiple reasons. I think first, depression is so prevalent in people without Parkinson's that it's very hard to characterize: is this like a depression that is directly related to Parkinson's disease, or is it just like a co-occurrence of health issues? The second thing is like cause and effect is hard to determine.

What we know, and I think at this stage is very important, is that if we treat depression, people with Parkinson's quality of life improves significantly. If quality of life improves, patients are more engaged in other therapies. The motor symptoms also improve, the participation in social and family lives improves, and all those, like exercise, social interactions, intellectual stimulation, for sure help reduce the risk of cognitive impairment and dementia. So, even if I don't have the hard evidence to say yes, for sure, treating depression reduces the risk of dementia in X percent, we can say that it helps so many aspects of the disease that the outcome by the end is reducing the risk of a significant impact on cognition.

Dan Keller 11:18 What do you see for the future in terms of depression in PD?

Veronica Bruno 11:23 As you know, Parkinson's disease has more than 200 years, but the focus on non-motor aspects of the disease, such as depression, is not as old, because for many years those symptoms were kind of neglected. So now that we are all on the same page in terms of how important recognizing these non-motor symptoms is, including depression, I see that many good outcomes are coming in terms of non-pharmacological therapies. We know a lot—there have been many at least done, but maybe they need to be refined in terms of methodology to make sure we are treating the right symptoms at the right time.

In terms of medications, we also know a lot, and we know that there are a variety of options that people with Parkinson's can try safely. So what I can see as the future initially is more recognition of a very common problem that can have a significant impact on people's life, and then potentially more targeted therapies that would contemplate the particular aspects of depression in Parkinson's disease, not treating it as in a person without Parkinson's.

Dan Keller 12:41 Do patients tend to gloss over it with their physicians? They're more focused on motor symptoms, and they just figure this is something else that really doesn't have to do with Parkinson's. So, if it's under-recognized, it's under-treated.

Veronica Bruno 12:57 100%. This is a bit dependent on the time that you have for your consultation with your neurologist. The fact that, as I mentioned, for many years these aspects of the disease were not taken into account, so people would go to the neurologist and just discuss the motor signs, like the tremor, the stiffness, the slowness, but would not discuss in detail other aspects, like "I'm experiencing these new feelings, I'm feeling pretty down. Is this part of the disease?"

Or care partners and family members would assume that the person with Parkinson's is feeling down because of the diagnosis, instead of thinking that maybe this is part of the chemical problems that are associated with the disease, and may have a potential treatment. So I think from both sides it's very important for us to keep a lot of information out there for the patients to get to learn more about these non-motor aspects of the disease, and from us—from our perspective, for us physicians and care providers in general—to ask about these things.

Because again, as I said many times, sometimes problems like depression and other non-motor aspects of the disease have a higher impact on quality of life than the tremor, the stiffness, or the slowness. And patients may, and physicians too, may underestimate the relevance of recognizing depression, treating it, and the change that that can produce for that particular person and the rest of the activities in their lives.

Dan Keller 14:37 Sounds like a good message, both to healthcare professionals and to patients to ask about it or tell about it.

Veronica Bruno 14:44 Exactly, and I think this is in fact exceeds Parkinson's disease, but is particularly important in Parkinson's disease. When depression is affecting someone, everything is more complicated. Engaging in therapies that would help your other symptoms becomes harder; it's easier to be more isolated, to stay at home, to stay in bed. All those things will worsen many of the other aspects of the disease.

So, understanding that this is a common problem that we need to be very aware of, and the most important part is for many of the issues that may affect Parkinson's disease patients, we don't have a treatment, but for depression, we have treatments. And usually people with Parkinson's respond very well to the different therapeutic approaches that we have for it. So, let's talk about it, because there's a lot that we can do.

Dan Keller 15:41 Excellent. Thank you.

There are a few simple guidelines to help prevent or treat depression. First, get screened for depression at least once a year. Second, discuss mood changes with your doctor, and third, have a family member accompany you to your doctor visit who can help you talk about your symptoms of depression.

For information on the various causes of depression in PD, its symptoms, diagnosis, treatment options, and coping strategies, go to parkinson.org and click on "Understanding Parkinson's" at the top of the page, then select non-movement symptoms and scroll down to depression. There you'll also see links to an Expert Briefing, fact sheets, a podcast, and related blog posts.

More information in the form of podcasts and a book can be found by going to our library at parkinson.org/library and checking the box for mental wellness. Particularly on topic is a podcast called Depression in Parkinson's and two fact sheets called Depression and PD: A Non-Drug Treatment Option, and Combating Depression, as well as an Expert Briefing titled Expert Briefing: Depression and PD. Finally, our free book, called Mood: A Mind Guide to Parkinson's Disease, contains a large section devoted to depression. It's available for reading online, for download, or by ordering a physical copy.

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.

Dr. Veronica Bruno, MD, MPH is a neurologist with a subspecialty in movement disorders. She received her medical degree and neurology residency in Buenos Aires, Argentina. She completed her fellowship in Movement Disorders at the University of Toronto and a Master of Public Health degree at the Harvard TH Chan School of Public Health.

Dr. Bruno was recognized with different international awards including the American Academy of Neurology and American Brain Foundation Clinical Fellowship and the Argentine Presidential Fellowship in Science and Technology, part of the U.S. State Department’s ‘100,000 Strong in the Americas’ initiative. 

Dr. Bruno’s primary interest is the treatment of advanced Parkinson’s disease, with a particular research interest in the non-motor symptoms of the disease. She has also a special interest in Global Neurology and the search for innovative solutions to improve the quality of neurological care in low and middle-income countries.

Tracy Weistreich 0:00:01
Welcome to Understanding Parkinson's Disease and Mental Health in the Veterans Community. Today's webinar is proudly presented by the Parkinson's Foundation in partnership with the U.S. Department of Veterans Affairs, Parkinson's Disease Research, Education and Clinical Centers, otherwise known as PADRECCs, and the Veterans Health Administration. Hello, everyone. My name is Dr. Tracy Weistreich, your moderator for today's program. I'm the Nurse Executive at the Veterans Health Administration National Center for Healthcare Advancement and Partnerships, or HAP for short, under the Discovery, Education and Affiliate Network, or DEAN Office.

At HAP, we serve as a trusted resource and a catalyst for the growth of effective partnerships at the national, state, and community level and advance the health and well-being of veterans through exploration of innovative, safe, and ethical emerging therapies. Partnerships such as this one with the Parkinson's Foundation are force multipliers, enabling the Veterans Health Administration to improve the health and well-being of more veterans, their families, caregivers, and survivors. For those of you who are tuning in for the first time, we're so glad to have you here.

Since 2020, the VA and the Parkinson's Foundation have partnered in the effort to reach more veterans living with Parkinson's and their care partners in order to provide tools, information, resources, and support. The Parkinson's Foundation with the veteran community. After which, we will hear from a veteran living with Parkinson's about his experiences with mental health and accessing support through the VA. Then, during a presentation from a VA physician, we'll learn more about the relationship between mental health and Parkinson's disease. Finally, we'll end the program with a question-and-answer panel responding live to your questions submitted through the chat.

Before we get started, though, there are a few webinar tools and features I'd like to point out. The question-and-answer icon is located at the bottom of your screen. This is where you can type in your question or message us if you have a technical difficulty. We will answer as many questions as we can toward the end. If you open your chat box now, you'll find the link to download the slides for today's webinar. This webinar is being recorded and will be available on demand early next week. All those registered will receive an email notification with the link.

It will also be available on the Parkinson's Foundation website at parkinson.org/VA2022. If you would like to download a copy of the slides, please use the link that is in the chat box right now.

Finally, we're trying out a new closed-caption feature on Zoom. Keep in mind that this is not perfect and there will be errors, but we hope this option will help make our programs a little more accessible. If you are joining using a phone or tablet, you should already start to see the captions as I speak. If you are on a computer, hover the mouse toward the bottom of your screen and click Live Transcript or CC for closed caption. You can then click Show Subtitle. Now, it is my pleasure to welcome our first guest speaker, Shira Rosenfeld.

Shira is the Vice President of Strategic Initiatives at the Parkinson's Foundation. Shira leads the Parkinson's Foundation's partnership activities and is the point person in the Foundation's collaboration with the VA. Shira will speak today about the Parkinson's Foundation Veteran Survey.

Shira Rosenfeld 0:03:55
Thank you, Tracy. Good morning, good afternoon, everyone. Thank you so much for joining. I wanted to share a brief update on a recent survey the Parkinson's Foundation conducted focused on veterans with Parkinson's disease, which was, in part, the basis for planning today's webinar.

The veteran survey was carried out through the Parkinson's Foundation program PF Surveys. Just a little background on that: the Foundation launched PF Surveys several years ago to inform research on Parkinson's disease and to promote a better understanding of some of the most pressing needs and issues facing the Parkinson's community. PF Surveys is driven by the experiences and insights of people living with the disease and their care partners, and helps ensure that real experiences are directing and influencing research.

Estimates show that approximately 110,000 veterans with Parkinson's disease receive care through the Veterans Health Administration. But we also know that many veterans with and without Parkinson's receive their care through the VA and outside of the VHA network. The Parkinson's Foundation, as part of our partnership with the VA and our joint commitment to improving care for veterans with Parkinson's disease, conducted a survey in 2021 through our PF Surveys program of veterans living with Parkinson's.

For this survey, we were interested in understanding health status, care experience, and healthcare use by veterans living with Parkinson's who received care both in and outside of the VHA system. Questions of particular interest were related to mental health, health and wellness, referrals, and other areas of utilization and satisfaction with their care. One of the main goals was to better understand what areas of care can and need to be improved to provide the best care possible and support for veterans living with PD.

There will be a manuscript about the survey that will be released later in the year with many more details and discussion on some of the key findings, but it was clear from the research that there are some real gaps in knowledge and information as it relates to mental health and needed education, all of which were really drivers in planning today's webinar. The survey provided insights into the need to educate the veterans community on mental health symptoms related to Parkinson's and how to recognize those symptoms, where to go for mental health treatment and support, and what that treatment might look like.

It also highlighted the importance of talking to one's provider about their mental health on the good days too, and really having an open, honest dialogue. It showed the need for understanding and awareness of mental health resources for veterans with Parkinson's disease and care partners from the VA, as well as the Parkinson's Foundation.

We hope some of these calls to action are part of what you take away from today's webinar, including understanding the importance of getting early referrals and treatment for mental health, understanding the types of care that veterans with Parkinson's can receive and are eligible for, whether that be through the VHA or elsewhere, and where and how to access good mental health resources.

It was our goal to take some of this research and put it into action, which is what we are doing here today with our speakers and panelists from the VA, from the Parkinson's Foundation, and from the veteran community to share their experiences and expertise. I'll now turn it back to our moderator. Thank you.

Tracy Weistreich 0:07:57
Thank you, Shira. That was great. Next, we get to hear from retired U.S. Marine Corps Sergeant Dr. Patrick Welch. In this five-minute video, Patrick talks about his service experience, his use of VA's mental health services, and how these services impact his journey with Parkinson's.

Patrick Welch 0:08:23
Hello. My name is Patrick Welch. I am a Marine Corps Vietnam veteran. I have PTSD, and I have Parkinson's disease from my exposure to Agent Orange. In the next few minutes, I will talk a little bit about my mental health and Parkinson's disease journey.

No one, absolutely no one, goes to war and returns the same person. The things we see should not be seen by anyone.

When I came home, I did not talk to anyone about my time in Vietnam. My stock answer was what you hear many veterans say: "I'm fine." And we know that reply means they are not fine.

Each day, I would put on my business suit, my coat of armor, if you will, go out into the world and project confidence and an air of authority. Each night, when I came home and removed my armor, I would collapse from the weight of the day. It took me 19 years to finally accept that I was not fine. I sought help from VA mental health, and thus began my recovery journey.

Today, I still take medication for depression. I still continue with individual sessions with social work, psychology, and psychiatry.

Late in 2019, I started to develop tremors in my left arm. As I have severe nerve damage from my wounds, I thought this was just more of the same. Going into 2020, the frequency of the tremors increased, and so did the severity. In March 2020, when COVID hit, my ability to get into the VA for an appointment with neurology was canceled, as no one was allowed into the hospital.

I began to do more research and determined that I might have Parkinson's disease. There are 10 early signs of PD. Some of the symptoms I had were the tremor, loss of smell, trouble sleeping, and dizziness.

I found out that the VA had formed the Parkinson's Disease Research, Education and Clinical Centers across the country in 2001. The research led me to the Parkinson's Foundation. The Foundation had an office in my community, and I made contact with a gentleman named Chris Giomali, who provided me with a great deal of information and assistance.

In October 2020, I was finally able to get an appointment with VA Neurology and was diagnosed with Parkinson's disease. My reaction was how most of us feel when we receive a diagnosis of another disease. I became very depressed.

PD can have an extremely negative effect on your mental health. We know that your mental health also can be detrimental to your physical health. Now, we know that PD is not a fatal disease, but it can have an extremely negative effect on your quality of life. My VA doctor prescribed reserpine and later carbidopa.

A key factor in taking an aggressive approach to maintaining your quality of life is exercise. The VA and the Parkinson's Foundation offer many resources to get you engaged in exercise programs that will allow you to maintain a good quality of life. On the Parkinson's Foundation webpage, there is a great bit of information on exercise programs that can be done in the comfort of your home. The VA Whole Health Program provides many types of exercise that can also be done in the home or at a VA medical center. The VA also offers programs for the spouses of veterans with Parkinson's disease.

Exercise is a critical aspect of how you walk and your balance. Falling is a major negative aspect of Parkinson's disease and can lead to hospitalization. I personally am involved in Parkinson boxing therapy.

We know from VA statistics that there are approximately 110,000 veterans with a clinical diagnosis of Parkinson's disease. My role as a volunteer with the Foundation and the VA is outreach. Thank you.

Tracy Weistreich 0:13:25
Thank you, Patrick, for sharing your story with us. Patrick will join us again later in the webinar during the question-and-answer period. It is now my pleasure to welcome Dr. Laura Marsh. Dr. Marsh is the Executive Director of the Mental Health Care Line at the Michael E. DeBakey Veterans Affairs Medical Center and a professor of psychiatry and neurology at Baylor College of Medicine.

Dr. Marsh will speak today about recognizing mental health symptoms, treatment options, and communicating with your providers. Thank you, Dr. Marsh.

Laura Marsh 0:14:02
Thank you. Thank you for having me. I am putting my slides on the slideshow, and I will do the display settings. Just one second. How's that? Is everything okay? Yes, great.

Well, thank you for having me. It's really my pleasure to be here. I have a dual role where I am a psychiatrist who has spent her life working in Parkinson's disease and taking care of patients with Parkinson's and mental health issues. But I also have a role in which I oversee mental health care in our Houston VA. It's really a pleasure to be able to put all that together for veterans, whether you're getting seen at the VA or not at the VA.

Today, we'll be talking about how you, as a veteran, can recognize and manage your common mental health issues, what your role is, and how you can work with your caregivers to optimize that experience with Parkinson's. It's really important to understand how mental health symptoms emerge in the context of PD. I'll talk a little bit about that. I won't get into all the details of the biology, but I will mention that. I'll spend most of the time talking about treatment approaches and options for you, and then conclude with some thoughts about how to maximize and optimize your communication with your clinical team.

The first part, as I said, is to understand what symptoms are possible in the context of PD. Then I'll go over some common conditions so that, if you have observed them in yourself, you can bring those up with your clinician. What's important to understand first about Parkinson's, and why maybe there hasn't been this emphasis on recognizing mental health symptoms, is because initially they weren't recognized as part of Parkinson's.

When James Parkinson described the condition that took his name, he actually examined four patients, and two of them he had witnessed from outside his house, looking out the window at people walking on the streets of London. You can see here he talks about the tremor, the involuntary tremulous motion. He talks about the posture and how it tends to bend forward in Parkinson's. He talks about how people walk differently, but he says very categorically that the senses and the intellect were uninjured. The traditional view of Parkinson's continued on this way for quite some time.

But as people lived longer and we were observing things, as Parkinson's could be treated with medications effectively, it became quite apparent that the traditional view of Parkinson's did not match the lived experience with the disease itself. What you see is this progressive increase in attention and research on the mental health aspects of Parkinson's. When you look at the total number of articles, in the 1990s, when I started doing this, there were maybe 40 to 50 articles a year. Now, there are over 2,000 to 4,000 articles coming out just in the last two years.

We've really seen this nice increase, and I think the next step is translating it into everyone's care. I think that's why we're doing this today: to help everyone get on the same page. One of the first things you need to understand about Parkinson's is that mental health issues are also part of your Parkinson's. What we know now is that mental health symptoms occur prior to your Parkinson's diagnosis.

Laura Marsh 0:18:04
In order to have a diagnosis of Parkinson's, you have to have the three characteristic motor signs, which are tremor, rigidity, and bradykinesia, and the disease has to be progressive. But before that occurs, you have to have sufficient degeneration of those dopaminergic neurons in your brain.

Meanwhile, other things are happening in the brain that appear to be part and parcel of Parkinson's itself. What we now describe as premotor or prodromal symptoms include depression, anxiety, loss of sense of smell, even constipation. But depression and anxiety, particularly, have been reported for quite some time. As you can see, these articles that I cite, one of the first ones is coming from 1997.

What we see often is that, on average, a depressive syndrome will precede Parkinson's diagnosis by about four to six years. With anxiety, we see that even more often. This was something that I saw when I started seeing a series of Parkinson's patients. Two to three years before they had the onset of Parkinson's, a patient would present with panic attacks or claustrophobia, etc. As an adult psychiatrist, I know that those disorders don't come on when people are in their late 50s. They typically come on in adolescence or young adulthood. This seemed very strange.

Then I was seeing more and more people who had these kinds of reports. The symptoms will either coincide with PD onset, or they'll present up to even 20 years before the motor signs. When you look at large samples of people in the general population, a 12-year follow-up of 35,000 men, even those people had high anxiety and reports of anxiolytic use, medicines like Valium or lorazepam, Ativan, that people used to treat anxiety—not that they should, but they have used it. Those were all associated with a relative increased risk of developing Parkinson's eventually.

This is data that we keep seeing again and again. Prior to PD diagnosis, you see these symptoms. Even at the initial time of diagnosis, we can see symptoms that are consistent with a mood disorder. This is data from 1967, which is shortly after we started having levodopa available. People started writing more descriptions of Parkinson's in a way that used actual data and were sort of parsing things out.

When I look at this, I look at tremor, gait disturbance, and stiffness. Those are all pretty classic for Parkinson's, its initial symptoms in these 183 people. But other symptoms like slowness, muscle cramps, aching, depression and nervousness, in particular fatigue and decreased facial expression, are all things that can go along with just the initial presentation of a depressive diagnosis. Not every patient has depression or nervousness, but some people do, and one can imagine that it can be difficult to separate what is Parkinson's versus what is depression.

The reason is you can't separate them, because they actually are going together. They are part and parcel of Parkinson's, and it's related to the brain changes that are occurring with Parkinson's.

Laura Marsh 0:21:40
When I looked at different conditions, specific psychiatric diagnoses that I would treat as a psychiatrist, in a sample of patients, I had a study I was doing back when I was working in Baltimore. We looked at 250 community-based individuals with Parkinson's. They did not have a dementia diagnosis, and we conducted full psychiatric interviews on these folks. Anyone could participate. What we found is that, at the time we met these individuals, 80% had at least one psychiatric diagnosis.

The 20% were just lucky. I mean, they did not have any prior or current psychiatric diagnoses. The most common psychiatric diagnosis was some sort of mood disorder, in particular major depression. The next most common was anxiety disorders of various types, at 40%; psychosis of various types, present in a little bit over 20%; impulse control disorders, about 15%; and 10% for the current. Very few people actually had substance use disorder.

When you see this, it really emphasizes that it's important to have the mental health component be addressed as part of your ongoing care. What makes that even more important, that we're moving in that direction, is because the data show that the mental health issues have tended to be undertreated.

That data that I showed you was from before 2010, and out of those 250 people, 97 had a major depressive disorder. These are people, if I saw them, I would treat them with medications, but also psychotherapy, exercise, a whole panel of treatment options that I'll be talking about. But these were not my patients. There were only 10% of those people, so about 10, who were totally completely well-treated, asymptomatic, nothing more to do with them. They were doing fine.

Sixty-three percent were partially treated, and that's a big problem. I had a patient one time who said, "Well, I got treated for depression. The doctor said depression was part of Parkinson's. He started me on an antidepressant, and I continued to be depressed because I figured it was part of my Parkinson's, just like you might still have some tremor." But in mood disorders and many other psychiatric conditions, we actually treat to get them under complete control, or so that they can be managed. We really want to get this group of people who are partially treated fully treated.

Even more so, there were 27% whose condition wasn't recognized at all. We see that, if you look at the average duration of folks, it's quite a long time. 182.4 weeks is several years that people had been suffering. One of the reasons that's particularly important is because untreated mental health symptoms have a greater effect on quality of life as compared to the impact of motor symptoms themselves on quality of life.

We also know, and as Patrick had said, that when you have mental health symptoms, they aggravate your motor and cognitive deficits. They make disability worse over the course of PD. It doesn't matter what medical condition you have, whether it's heart disease or lung disease: if there is a concurrent depressive disorder, that makes your medical condition worse. It also increases your risk of other psychiatric conditions and economic strain, caregiver distress, but fundamentally as well, just the suffering that the person goes through. That's what we want to alleviate.

Just to recap that, what I'm emphasizing is that when you think about your mental health conditions that are occurring in the context of Parkinson's disease, it's really important to think about how they're occurring over the entire course of PD. It's not just a cross-sectional time. What we see here is, if dopamine neuron loss starts back in your, say, 30s, and by the time you get Parkinson's you're about 60 years old.

Laura Marsh 00:26:21
You wouldn't get your motor symptoms until later, but during that time you might have episodes of depression or anxiety. You might have sleep disturbances, including something called REM sleep behavior disorder, which is a very particular kind of nightmare or sleep disturbance that people can have. Then your motor symptoms begin, but people may also begin to experience pain, fatigue, or cognitive symptoms. Over time, there are other symptoms that occur as the disease progresses, in particular other cognitive problems and the development of psychosis.

It depends on where you are in the course of Parkinson's, in your journey, that we can look for things and try to limit their appearance, as well as treat them so they can be better managed and your life is less affected by them. Looking at how we recognize these, and what you can do on your own, what are the things that you need to think about? The first is that when we're looking at depressive disorders, it's very important to remember that isolated emotions are not the same thing as a mood disorder.

Patrick said when he got the diagnosis of Parkinson's, it led to him feeling depressed. Some people will get the diagnosis of Parkinson's and say, "I was so glad because I thought I had cancer." Those are isolated emotions. Those do not equal a mood disorder. Mood disorders vary in severity and type, but the key feature is that the symptoms are pervasive and persistent. What you have to have, though, is a change in your mood or a change in your ability to enjoy yourself or be interested in things.

I often find that for many people, it's not about whether you can be happy, because some people can be happy in the moment but still have a depressive disorder. Often what they'll experience is a decreased ability to enjoy things that normally they enjoy. It might be as simple as seeing one's grandchildren. When someone gets to the point that they can no longer see their grandchildren and enjoy them, that's really too far. If the only thing they're enjoying is their grandchildren in their life and everything else is still pretty blue, we need to really make sure that person gets treated for their mood disorder.

Looking at decreased interest and pleasure is very important. You can have depression without specific sadness. There are physical symptoms of depression that are in PD as well as in depression, such as appetite and weight changes, eating more, eating less, losing weight, gaining weight, sleep disturbances, sleeping too much or sleeping too little, moving slowly, fatigue, loss of energy, decreased ability to think or concentrate, being indecisive, questioning oneself, and self-doubt. That can be in both conditions. With depression, what you're going to see is a certain kind of agitation, or pacing in a way that's also associated with the emotions; feelings of worthlessness; excessive guilt; or thoughts that one's life isn't worth living, thoughts of death, suicidal ideation, or even attempts or specific plans, along with the depressed mood or decreased interest or pleasure.

Laura Marsh 00:29:52
To recognize a depressive disorder, it's really important to look for the emotional features, ask about them, or look to see whether you have them. I've mentioned sadness, decreased interest, and decreased enjoyment. Sometimes people have more pessimism. They're thinking about everything that's going to go wrong. "I have Parkinson's now," even though they're doing very well and their Parkinson's motor symptoms are managed well. When they're depressed, they can be extremely pessimistic.

What's always been most remarkable to me is how I can see someone who is minimally affected by Parkinson's but has a horrible depressive disorder early on. Their mood disorder gets treated, and five or six years later their Parkinson's has progressed quite a bit, but they are able to enjoy themselves. They're not pessimistic. They feel like they're handling themselves. A mood disorder really changes the lens that you look at the world through. People can also have inappropriate guilt, a negative view of their sense of self, feeling unable to cope, or the idea that you have no bootstraps.

Sometimes I say that a depressive disorder is the absence of bootstraps. As someone starts to get better, their bootstraps start to recur. Irritability might be there. Again, these physical symptoms will also worsen with active depression, but it can be hard to distinguish whether those changes are part of PD or whether they're part of depression, and to make the diagnosis.

Anxiety disorders are also common in Parkinson's, and we call them clinically significant. People can get anxious about all kinds of things, but we know that when someone has an anxiety disorder, it's not just an understandable reaction to having Parkinson's or, "Can I get across the street? There's traffic coming and I move slowly." It's not that. It's more persistent, pervasive, problematic, clinically significant anxiety. We already know it can occur before Parkinson's even begins.

That in and of itself suggests that it's not only an understandable reaction to Parkinson's disease itself. We also know that anxiety can occur along with depressive disorders and other mental health disorders, or it can be secondary to anxiety symptoms. If someone is having memory difficulties or concentration difficulties as part of their Parkinson's, they can get anxious when they're put into situations that require them, say, to do their checkbook or do mental math, whereas they're not anxious at other times. That's more of a specific or situational anxiety, but not necessarily a phobia, as I'll talk about.

We have several types of both typical anxiety and, what's interesting, Parkinson's-specific anxiety. An episodic type of anxiety disorder would be something like panic disorder, where out of the blue, for no good reason, someone has a panic attack. You get worried and anxious, and then you have physical symptoms like feeling restless, facial flushing, et cetera. That occurs in Parkinson's independent of Parkinson's, but Parkinson's can also have symptoms that look just like that.

Situational anxieties include a phobia, being afraid to be in crowds, or being afraid to cross a bridge. As I mentioned, I've had several patients who, as they were in their late 50s or 60s, developed these claustrophobic situations where they couldn't sit in a crowded church. They would become extremely anxious.

Some anxiety conditions are continuous, things like generalized anxiety and PTSD, where someone can have symptoms such as worrying about what to worry about, which is what we see in generalized anxiety, or being vigilant about things that might be happening to make you anxious. Then we see these PD-specific conditions, and that's something we've really become aware of over the years. It took a while to convince the neurologists that we were seeing these conditions in Parkinson's, and I'll talk about that a little bit later with some other slides. It's important to think about these PD-specific conditions. They're relatively common.

Laura Marsh 00:34:03
In our sample of 250 patients, 22% of those who were affected had anxiety disorders that really didn't fall into the usual categories, and that's when we started calling them PD-specific. Others have had 11%. We've now developed Parkinson's-specific anxiety scales that can be used to evaluate anxiety in PD. All of the other ways that we had to evaluate it didn't really apply to Parkinson's, so we often wouldn't even detect anxiety. If you're doing a panic disorder scale and it's not asking about off-related symptoms, you're not going to necessarily pick that up.

In looking at anxiety disorders in particular and how to distinguish them from depression, it's important to look at what the particular features of anxiety are. Often, they can be overlooked, and people say, "Oh, it's just a depressive disorder." But a person with an anxiety disorder in the absence of depression is not going to have the sadness. They're not going to feel like they're not worthy. They're going to be interested in things, and they're not going to have those morbid thoughts or guilt. What they do have is apprehension. "Should I bring 13 Kleenex to the appointment, or should I bring 12 Kleenex?" They anticipate the negative.

If I go do this, something disastrous is going to happen. I'm not going to be able to get in the parking lot and get to the appointment. They can be overly detailed, pretty reactive to things, fearful, and have a lot of somatic concerns, thinking about their body. The complaints that people will have when they're anxious about their Parkinson's may actually be greater than what the clinician would observe on their exam. Sometimes what happens is people are getting extra Parkinson's medicines because they're having physical complaints, but that's really part of their anxiety. It's really important to make sure that anxiety gets addressed.

What is the trickiest part? I put the stars here with avoidance because that's what often people don't realize about anxiety. If you're anxious about something, the best way to not be anxious is to avoid what makes you anxious. If you're afraid to go out, you just stay home. Someone says, "Are you having any problems with anxiety?" The patient says, "No," because they're not doing what makes them anxious. We often have to ask very carefully, "What is it you're avoiding or not doing because you're feeling more anxious?" This avoidance is what, for example, often keeps people who have PTSD from coming into treatment. Why would you want to spend time talking about what's making you terribly anxious? We really look for this avoidance. That's something that I think often leads to overlooking anxiety or missing that diagnosis.

Another condition is apathy. About a third of the time, it can be part of a depressive disorder. Ten percent of the time, it can just be on its own as an independent disorder. What you see, again, is loss of motivation, emotional indifference, and a reduction in taking part in activities, not because they can't due to their Parkinson's or intellectual difficulties, but because they just don't have that motivation or inclination. It can be associated with cognitive changes. The big thing about apathy is that the patients who have it don't complain. They're apathetic about it. It's usually the family that complains. "My husband won't do anything. He sits around all day. He's not interested in it. He's not unhappy. He'll go wherever if I bring him along, but he's not motivated like he used to be."

Another problem that we see quite commonly in neurological conditions, and you see it in up to half the patients with Parkinson's, is something that we call emotionalism or pathological crying. You see it in depressive disorders when they're more acute until they're treated. You can see it when someone has delirium or a confusional state. You can see it when people take certain kinds of benzodiazepine-type medications, like Valium. What you see here is this heightened, excessive sentimentality that's very brief but often brings tears.

Laura Marsh 00:38:39
Someone says it's like if someone does a kind deed, or if someone thinks about their grandchildren or their love for their family, they'll have very sudden tears that then go away very quickly. It's not really a sustained emotional state. It's inappropriate. The person is often embarrassed by it, and they don't have any control over it. Some people will think, "I must have a depressive disorder. I must be depressed because I'm crying all the time." But what you don't see in people who have this emotionalism in the absence of a depressive disorder are all the other changes, like feeling worthless or not wanting to be alive. You just see these very quick, brief tears that are often embarrassing.

Parkinson's psychosis consists of hallucinations and delusions. I want to first talk about the overall presence of it. It really depends on your definition of psychosis. It depends on who has Parkinson's in your study and who has some other condition that looks like Parkinson's, like dementia with Lewy bodies, or whether they have cognitive impairment. The overall rates are about 8% to 40%. Over time, symptoms will become more persistent and progressive, but there's something that I think is incredibly important to look for and talk about with your clinicians if you notice any of these. Certain medicines with Parkinson's, like dopamine agonists, can increase that risk, certainly as people age with the progression of PD.

Looking at hallucinations, a hallucination in its simplest definition is a perception of something without something actually being there, without a stimulus. You can have them in any sensory domain. Visual hallucinations are most common in Parkinson's, but hallucinations can also be auditory, through your ears hearing something, or tasting something, smelling something, or feeling something touch you. In other psychiatric conditions, it's more common to have auditory hallucinations. In Parkinson's, it's most common to have visual hallucinations.

We talk about various types. One is called minor hallucinations. They're not technically hallucinations, but it's a sense of presence, this vivid sensation that someone else is there. Someone will say, "My brother has been deceased for five years, but often I feel his presence sitting in a chair next to my bed at night." It's brief, it occurs, and it's often not disturbing to people.

Passage hallucinations are brief visions in one's peripheral field, seeing someone walk by or maybe seeing a cat walk past the door even when you don't have a cat. Illusions are sensory distortions. It's where you might look at the curtains and the way they're blowing at night, and it looks like maybe there's some other kind of animal or a bear showing up in there. You have a distorted sense. Then with hallucinations, someone can have insight or not have insight. Often when you first see something that's a hallucination, you don't have insight, and you have to check to see, "Okay, is that really there?"

They can be unformed, like a puffball that just floats around, or they can be more formed and complex, like a little girl sitting at the end of the bed. Sometimes people have seen entire groups of people out on their lawn. As I mentioned, they can be any sensory domain: taste, or a sense of your physical sense of where you are in space, which are kinesthetic hallucinations.

Laura Marsh 00:42:44
It's important to know what the rates of these are. These are people who are treatment-seeking for hallucinations or delusions. A delusion is defined as a fixed false belief that the person has despite any evidence to the contrary. They're going to believe that no matter what. You can't convince them. You can't talk them out of it. Hallucinations, as I mentioned, were most commonly visual. In this particular treatment-seeking sample, almost 100% of the folks had visual hallucinations, about half had auditory hallucinations, a quarter had tactile hallucinations and could feel something touch their skin or something crawling on it, and another set had olfactory hallucinations, smelling something that wasn't there.

The delusions in this sample were about 76%. Most common were the idea that someone was stealing something or that they were not in their own house. One symptom that's very common is beliefs about spousal infidelity. This is often very difficult for family members to handle. If you're taking care of your loved one and they maintain that you're actually having a relationship with someone else, it's very, very hurtful. But this is something that does occur as part of the psychotic syndrome. Others may actually believe that their spouse is not who their spouse is, that there's an imposter coming in: "You look like Jane, but you're not Jane."

Last, I wanted to go over these PD medication-related mood syndromes. I mentioned that earlier when I talked about the different types of anxiety. One is something called off states or early morning off. A person wakes up in the morning and has extreme anxiety, extreme low mood, and often along with that some urgency with their urine, some drooling, or numbness and tingling, or paresthesias. This is something that people can have. When you have that, the treatment is actually to figure out how you can not wear off. It wouldn't be to treat a primary anxiety problem like panic attacks. It's really important to sort that out.

Dopamine agonist withdrawal syndrome, or DAWS, is where people are coming off a drug like Requip or pramipexole and they start having new-onset panic attacks, particularly anxiety. They can even have severe depression or suicidality. I've had several patients who've had drug cravings for dopamine agonists that really ended up looking like substance use. One patient actually admitted himself to a substance use program, and he said, "You know what? I didn't think I belonged here, but I realized all the things I'm doing for my Mirapex are the same as what these folks are doing for cocaine." It was a very enlightening statement that he made.

Then there are folks who have these on-off motor and non-motor fluctuations. That's this roller coaster ride where people start taking their medicines in the morning, say six o'clock. Their mood is okay, not great. Maybe they have that early morning off. As the day goes on, the yellow is their Sinemet, so they become neutral in mood and neutral motor, then become dyskinetic. But then their mood goes back down when they wear off, and then it goes back up as their motor symptoms get better controlled by the medicine. If I see you at noon, you're looking pretty good. Your Parkinson's is controlled. Your mood's pretty good. But by 3 o'clock, your Parkinson's medicine has worn off, and your mood is going down to the pits there.

Patients often don't recognize this difference, but their families definitely do. You have this fluctuating mental state that's like a roller coaster ride. People get very depressed or anxious with the fluctuations in their motor situation. Along with those fluctuations, you have these autonomic symptoms: drenching sweats, hot sensations, flushing, things like you might see with a panic attack. A male patient of mine said he developed menopause at his age. These are the autonomic symptoms he was having. People can also experience, during those motor off periods, slowed thinking along with anxiety and other sensory symptoms.

Laura Marsh 00:47:08
Next and last, we have these impulse control and behavior disorders, which can occur. Certainly, they're associated with medications, and I mentioned compulsive medication use in that setting. Individuals have developed gambling problems, hypersexuality, pathological shopping, and then punding, which is a behavior where someone does a needless activity over and over again, like taking apart flashlights and other mechanical equipment and then putting them back together again, or taking books off the shelves and fiddling with things, spending a lot of their time doing that.

What are the treatment approaches and options? What I want to emphasize is that mental health treatments are only effective when they're pursued, and sometimes you have to get the whole course too. You can't just do it one time. It's something you've got to stick with. We want them to be targeted, individualized, and collaborative. We often use multiple interventions and multiple disciplines involved in those interventions. It might be medications, talk therapy, or rehabilitation therapy of various sorts.

I'm going to give you an example of what I might do. Here's a 70-year-old veteran. He has Parkinson's disease, a history of PTSD, a history of major depression, which is not active right now that I can tell, and a history of alcohol use disorder, but it's not a problem right now. Suddenly, he comes in with new-onset panic attacks. I'm looking at my possible treatment options. The first thing we do is collaborate to try to figure out what he's actually having. I ask him to take a 24-hour diary and do this for about a week. Record hourly what's going on with your mood, what's going on with your anxiety, whether you're sleeping, how your motor symptoms are, whether you're taking your medications, when you're taking them, and what the circumstances are.

If a person who makes you anxious is coming in when you have these panic attacks, the treatment is going to be different than if you're actually having non-motor fluctuations, like I mentioned. These are folks who maybe are a good candidate for deep brain stimulation. But I don't want to start treating you for panic attacks if all we need to do is make sure we set a timer so you're taking your medications on time.

We spend a lot of time educating and supporting, getting a healthy medication and daily schedule. We do various behavioral interventions and some stop-gap approaches, breathing in particular. It's totally free. I love it. It helps whenever you're having anxiety. Distracting activities, mindfulness training, physical therapy, and physical exercise, as we mentioned, can be very helpful. Then we might do specific psychotherapies, cognitive behavioral therapy, or maybe a PTSD-specific therapy.

Then we will look to see whether maybe we need to adjust an antidepressant if there are depressive symptoms. Maybe we need transcranial magnetic stimulation or even ECT. Maybe we need alcohol use disorder treatment because the alcohol use problem has come back. It's much more than just saying, "Take a pill. We're going to get you on this antidepressant." That's kind of the last thing that we do when it comes to treating patients with Parkinson's and their mental health issues. We kind of do everything before that.

Laura Marsh 00:50:36
That's where I came up with this idea. I was talking with a veteran one time, and he said, "I just want to take this medicine. What do I do with this? Do I take two of them? Do I take three of them?" I was thinking to myself, this is kind of a mess. The idea is, if your treatment is a MESS, you won't be a mess. The acronym is Medications or medical, Education, Skills, and Support. You need all of those.

The M is for adjusting, adding, optimizing, or actually taking the medications you're prescribed. Often, especially with psychiatric problems, people don't take the medicines. They say, "I took it for three weeks and I was better, so I stopped." Of course, you're going to get worse again then. We want to adjust and do all those kinds of things, and then avoid certain medicines that tend to make people worse: benzodiazepines, antihistamines, drugs that are anticholinergics, things like Detrol, and even anticholinergics that some people take for their Parkinson's. Over time, they're not a good idea because they affect memory and cognition.

Education, just like you're doing today, means learning about your Parkinson's and learning about your symptoms so you know what you're dealing with. Lifestyle interventions include looking at your home and identifying what you can do to make your home safer and more compatible with who you are now. Learning certain skills is important. Psychotherapy is about skills learning. It's work. I don't make you better just by listening to you. It is learning skills that can help you manage symptoms and prevent those symptoms from coming back, just like you do when you go to rehabilitation therapies, physical therapy, occupational therapy, speech therapy, et cetera.

What I love doing is having people go into the home and see how they really are doing things and where their problems come up. Last, and it's so important, is social support: support groups, plus exercise, plus fun. That's key. Support, exercise, fun. Things like singing, dancing, yoga, et cetera. Make sure that the other people around you are also getting that support.

I added one more. The more I work in the VA and with veterans, you also have to be attentive to safety: safety related to falls and safety in terms of harm to self or others. I won't talk about falls because we're talking about mental health issues, but I can say that once someone falls, there's also a cascade of mental health issues that come. I spend a lot of my work with the patient making sure their fall risks are addressed and prevented as much as possible.

Laura Marsh 00:53:00
The other safety issue is looking at suicidal ideation and suicide behaviors. It's not insignificant in Parkinson's. In one study, almost a third of people had thoughts about death a lot, some people had suicidal ideation, and 4% had a lifetime attempt. We don't have any evidence that deaths by suicide are any different than the general population, but we haven't looked at that specifically in veterans. What we do know is that when people have major depression, they are more likely to have suicidality, and they can be at greater risk of harm to themselves in that context. Since major depression is common in Parkinson's, we definitely want to make sure we treat it and treat it until it's better, until it's remitted, not just until it gets a little bit better.

When someone has risk of harm or violence to others, of course it can also increase when there are hallucinations, delusions, or cognitive impairment. Safety and suicide prevention are really important. One of the things we do in particular at the VA is something called safety planning, and you can ask your clinicians to help you do that. You can find one online, but typically we do this with the veteran, where you become aware of what your distressing triggers are, symptoms or thoughts, things that are internal to you that only you know about. You can think, "That little symptom or thought has come to me, and when that happens, I'm going to do this."

If things continue on and bubble up, maybe you need to do a little more if that internal coping strategy hasn't taken. Maybe you need to think about, "What else could I do? Maybe I need to go to a movie or listen to some music. Maybe I need to contact a trusted friend who knows what to do." We're really looking at avoiding crises. So often, mental health treatment has focused on waiting until someone is in the crisis. What I want to emphasize with Parkinson's is that part of your advanced safety planning is identifying these conditions very early on so they can be managed and you don't have to get to the crisis.

For suicide prevention, remember that time and distance are on your side. Many people who end up dying by suicide, or who have attempts, have attempts that occur within an hour of when they first had that thought. Time can go on, someone can distract you, or you can't get to whatever your means of attempting to harm yourself are, and you are less likely to act on it. If you're concerned about someone, whoever it is, you want to stay with them for that time or until you know that person is safe. We do something clinically, and anyone can do this. It's lethal means counseling and finding out whether someone has weapons in their home or what other means someone might use to harm themselves.

Laura Marsh 00:56:07
Whether it's medicines that they might try to take an overdose on or some other way that they might try to harm themselves, we try to prevent them from having that available to them. We really, really recommend using gun locks and having them for routine safety just in general. People have children around their homes, etc., but also when somebody is in more of a worse state, to temporarily remove those weapons from the home. Of course, the most important suicide prevention measure is to treat mental health conditions, and in the VA, we have specific psychotherapies that we use for suicidality.

In fact, we're doing them with the group up in New Jersey that works on Parkinson's-specific therapies. Then there's the Veterans Crisis Line, which is available to anyone. You don't have to be getting your treatment at the VA. When you get these slides, if you would like to get some gun locks, you can email Corey Terhune, and he can send those to your house. The key thing is, a locked firearm can mean the difference between a tragic outcome and a life saved.

Just to finish up with talking about mental health issues, we know that mental health issues, like any other medical condition, can impact your overall physical health and well-being. Your Parkinson's symptoms will get worse. Your cognitive symptoms get worse, etc. But your clinician may not realize your mental health issues are important or relevant if you don't bring it up or if you look pretty much the same as usual. Many won't ask. It's kind of a don't ask, don't tell. Well, we want to be telling. If you have concerns that you want to address, bring those up first.

Some people use this phrase: it's called the hand-on-the-doorknob sign. As the person's getting ready to leave the room, they say, “Oh, by the way, doctor, I think I'm going to be, you know, not feeling like I want to keep living.” We want to bring that up very first so it can be addressed. You don't have to wait until you have an appointment weeks to months away. Call if you're experiencing changes. Often they're not actually related to mood disorder. As a geriatric psychiatrist, it's very common to identify urinary tract infections or a side effect of medication that has affected someone's mental state. It's not just their mood disorder or whatever else I'm treating.

The best practices really involve regular screening for mental health symptoms. I know VA and most other places will do regular depression screening, but if you have anxiety, that might not get picked up on the depression screen. If the tool isn't picking up on the problem that's keeping you from having the life that you should have or want to have, then you need to bring that up. Some other tips for starting a conversation, really, again, mainly just say it if you don't have another way, but you can always call ahead of time and say, “I want to make sure that Dr. Marsh knows I want to talk about this.”

There are families that would send me emails or call the clerk and say, “I can't be at the meeting with John, but this is what I want you to know about him.” Often we talk about people having an informant or collateral information, and knowing who that person is for you so that they can speak up for you if you're not feeling comfortable.

Laura Marsh 00:59:43
Now, one of the things that's so important about VA right now is they've really, as Patrick mentioned, the VA Whole Health program. That is a way that they will definitely be asking about how you're doing, how your mood is. This is promoting these whole health principles focused on the patient's goals and looking at not necessarily saying, “Oh, I would like to get my depression treated so that I only have a bad mood three out of eight days,” or something. No, this is about, “I would like to be able to go on a trip to the Caribbean on a cruise, and I want to have the best time possible.”

The purpose of Whole Health is that you would be working on what it is you need to do to do that. The goal becomes something that's more about your life and your whole health rather than just about symptoms. We practice that in psychiatry as well. The components of Whole Health are really you, your self-care, things that you do, your professional care and also your community, which is why I love the fact that we're doing this program that's involving the VA, the community, Parkinson's Foundation, you and other professionals.

Again, this is just the idea. You're in the center of your care and being aware of what's happening with you, aware of your body, your personal development, your nutrition, etc. Just to summarize, I've talked about mental health conditions and symptoms. They occur over the course of PD, including before it's diagnosed. We need to be thinking about that. We need to recognize there's a variety of mental health conditions, each with distinguishing features. You can have more than one. Each gets its own treatment, and when treated, there are many options and approaches. The overall experience of Parkinson's will improve, and people live a better quality of life.

At VA, we have a number of resources: outpatient care, psychotherapy services. We have psychotherapists who are specifically trained in working with Parkinson's disease and that are doing that virtually with us down to Texas and getting folks treated. We have additional resources if someone needs to be hospitalized. We have vocational rehab, homeless services, etc. We have a lot of resources. It's really wonderful to work at the VA where I feel I have unfettered abilities to take care of people.

We also have Veteran Service Centers for veterans of combat zones or who've experienced any sexual trauma. That's another place to go for counseling or to have your family come in. They can also work with the VA and coordinate, but your care can also be separated. I believe that's it for me. I will end my slideshow. Thank you.

Tracy Weistreich 01:02:27
Thank you, Dr. Marsh. That was fantastic. Your coverage of the different symptoms and the ways that they present in possible co-occurring mental health conditions has generated a number of questions.

Next, we're going to hear from Gretchen Glenn, who will answer some of the questions we got through the chat box about service connection and evaluation. Gretchen is a social worker and associate director of education of the Philadelphia VA Parkinson's Disease Research, Education and Clinical Center, or PADRECC, as I mentioned earlier. She's also at the Corporal Michael J. Crescenz VA Medical Center and chair of the National VA Parkinson's Disease Consortium Education Subcommittee.

Gretchen Glenn 01:03:09
Hello, everyone. I'm trying to find where I can see these questions.

For those of you who may not know, Parkinson's disease and parkinsonism are considered presumptive service-connected conditions for veterans who served in the Vietnam era and were exposed to Agent Orange. You must have a Parkinson's disease or parkinsonism diagnosis before you can file your claim. That was one of the questions.

It's also a presumptive service-connected condition for veterans who were stationed at Camp Lejeune due to the water contamination, and also for veterans who may have moderate to severe traumatic brain injury diagnoses. If you feel that you fall into any of those categories, you should go on to the VA website, and I'll post it in the chat box so that you can all see it, so that you can see where and how you can go about filing a claim for service-connected benefits through the VA.

To be eligible, this is just a side note, to be eligible to receive care at a PADRECC center for your movement disorders, you must be also registered for VA healthcare already. Be within the VA healthcare network and receiving care. I can post those links as well for those who may be interested.

Sorry, I'm reading, making sure I didn't miss anything. Those are the only instances that I mentioned before about Agent Orange and Camp Lejeune. There may be other instances as more research goes on that the VA may service-connect for other veterans of other eras. The best thing that I can suggest doing in the meantime is connecting and doing an environmental health registry evaluation at your local VA. I can post that in the chat box as well. Basically, that's an examination that's done at the VA that you might have concerns about being exposed to certain toxins, such as burn pits, which is a big one.

Some of the other different gases that you may have been exposed to. If in the future, it's good for the VA to have that information for research purposes, and then if in the future they become presumptive service-connected for Parkinson's disease, they would reach out to you to let you know. I can post that in the group as well.

I think that may have answered the questions. I don't know if anybody saw any others in the chat that you might want to point out to me if I missed them. You could also send a message to the Parkinson's Foundation directly if you have any questions about registering for VA healthcare or Agent Orange, and the Parkinson's Foundation can send them to me afterwards and I can answer them in email form. Thank you.

Tracy Weistreich 01:06:27
Thank you, Gretchen. We will use the rest of the time, approximately 20 minutes, for the questions that came through the chat. Coming together to answer your questions are Dr. Laura Marsh, Dr. Patrick Welch and Amanda Janicki. Amanda is a licensed clinical social worker and Parkinson's disease information specialist on the Parkinson's Foundation Helpline.

Our goal during this Q&A is to provide broadly applicable information and resources so that you feel empowered as you navigate the available resources and services options. Please understand that given the complexity of today's topic, we won't be able to respond to every question or scenario that was submitted. If we did not get to your question or you think of a question after the presentation, you can contact the Parkinson's Foundation Helpline at 1-800-4PD-INFO. That's 1-800-473-4636.

Thank you so much. At this point, we're going to turn it over to Amanda for the first question. Amanda, can you tell us about some of the resources available through the Parkinson's Foundation for veterans and care partners? Where would you direct people who are looking for information about managing symptoms?

Amanda Janicki 01:07:45
Sure, thank you. My first suggestion would be to call the Helpline. We can do some of the legwork for you in terms of finding the most appropriate or relevant resources, so that would be my first suggestion.

Otherwise, our website does have a lot of information in different formats. If you're someone who likes to listen to something or watch something, we have podcasts, we have webinars, we also have a lot of reading material, free booklets we can send you on the topic of mood. So, website, Helpline. We also, as far as care partners go, do have some courses specifically for care partners. That would be something else we can guide you to. I'd say reach out to us and let us do some of the hunting for you to find some resources that really would make an impact for you depending on what your situation is.

Tracy Weistreich 01:08:35
Thank you. Patrick, the next question I have is for you. What would you say to a veteran who is thinking about reaching out to VA for mental health support or who may be experiencing depression and/or anxiety?

Patrick Welch 01:08:53
Thank you, Tracy. I think the first thing is the realization that a person has, you have to acknowledge that you do have an issue. I would suggest two ways of looking at it. First of all, if you are a combat veteran, reach out and find a Vet Center in your particular area. The Vet Centers are staffed by combat veterans, and the information that you discuss at a Vet Center is private. I like to call them the little VA.

They're usually in a strip mall or something like that, as opposed to the big VA, which is multiple-story buildings. The second thing would be to go to the VA. If you're not registered with the VA healthcare system, go into the service center at the VA medical center, bring your DD214, get registered with the VA, and then in that meeting with the service center people, they will be able to assist you in setting up an appointment with a clinician.

There's also the OIF/OEF offices in many of the medical centers, which is another place for someone to go. So, there's three or four different areas for a person to get involved in the VA healthcare system.

Tracy Weistreich 01:10:20
Thank you so much, Patrick. We'll make sure that those resources are available to the listeners today.

Dr. Marsh, can you talk about the possibility or probability of a veteran of the Gulf War and Iraqi Freedom and other campaigns throughout the last 20 years developing Parkinson's due to their service in these overseas locations?

Laura Marsh 01:10:41
Yes. I've been checking out the questions, and I'm really impressed with the depth of them. They're excellent. That particular question is something that we are asking at our VA and looking at longitudinally. There are certain things that... There are plenty of people who went to Vietnam or who will go to Afghanistan or Iraq who do not develop Parkinson's. It's not everyone who gets it, but there are other things that increase one's risk of having it. We know that if someone has had a head injury, that's associated with increased risk of Parkinson's.

We know that people with anxiety disorders appear to have increased risk. I'm going to add in this other question, which is about the dreams and the nightmares. One of the things that has been fascinating to me is I work on the sixth floor and our neurology clinic is on the second floor. We were finding that people who came up to the sixth floor were diagnosed with PTSD because of their nightmares. On the second floor, they were diagnosed with REM sleep behavior disorder, which is this condition where you have nightmares. Normally when you're dreaming, your muscles don't move.

When you have REM sleep behavior disorder, you get up and you're able to have muscle tone. We don't always know, and this is a question we're asking very specifically: what is that overlap between REM sleep behavior disorder and patients with PTSD? When we look at people who have REM sleep behavior disorder, we know that REM sleep behavior disorder increases the risk of someone having a synucleinopathy, or what I mean is someone with Parkinson's kind of brain pathology.

Laura Marsh 01:12:37
A head injury and REM sleep behavior disorder are two things that might be part of it. Does that mean that you're going to get Parkinson's? Not necessarily, but it's something that we want to be monitoring for. However, in addition to monitoring, if you have symptoms of any mental health issue, you don't have to wait until you have Parkinson's to get treated. Because what we also don't know is if we treat your psychiatric problems when you're 40 and you exercise and you have good nutrition, can we actually stave off the processes?

Any kind of disease, what happens, as you saw on that slide where I had, you've got all these other parallel processes that are going on in your brain that are helping you to compensate. Well, what if we shore all those up? Just like you're in combat, right? You're not going to have just one team going in; you're going to have all kinds of approaches.

Maybe what we can do is either prevent that transition to actually having full-blown Parkinson's, that would be the idea. You could be reversing the disease process, or we can slow that disease process. That's really why early identification, early screening for symptoms, identification, recognition and early interventions and treatment.

Actually, with Patrick Welch, our veteran who's here, I wondered if maybe because he was getting his depression treated at the VA and getting it treated very effectively and getting his PTSD treated at the VA very effectively until he started having the diagnosis of Parkinson's, maybe if he hadn't done that, he would have developed his symptoms earlier. I'm just speculating. But I think this is why I really encourage everyone to, if you have these psychiatric symptoms, get them treated.

Tracy Weistreich 01:14:37
Thank you, Dr. Marsh. Turning to Amanda, does the Foundation have any specific resources for veterans who are recently diagnosed with Parkinson's?

Amanda Janicki 01:14:48
We do. We have a newly diagnosed kit. That's one resource that we can mail out to you that's specific for people newly diagnosed. Several of our webinars, educational webinars and other booklets are really relevant. We would be glad to get you in touch with that.

Again, touting the Helpline, but we get so many calls from people that have just been diagnosed, and they don't even sometimes know what to ask. What do I start with, with this new diagnosis? They're trying to wrap their head around it. We can talk with you through that and get a sense of what are your concerns, and let's answer some of those questions, and let's connect you with local resources so that you're starting to build your local community.

The answer is yes, we do have some newly diagnosed resources, a special page on our website that's just dedicated to people newly diagnosed. We have some tips on our website actually written by someone with Parkinson's for someone newly diagnosed. There's a lot out there for you to find on our site or for us to guide you to.

Tracy Weistreich 01:15:51
Does that include information for loved ones or caregivers of veterans diagnosed with PD?

Amanda Janicki 01:15:58
Absolutely. There's a whole caregiver section on our site. Some of it's specific to people newly diagnosed. But same thing, our site's got a lot of info, but I say call us. Let us know what's on your mind. Someone's just been diagnosed. And like Dr. Marsh said, you don't have to wait for a crisis. Call us when things seem okay, but just to get a sense of what to expect or to feel a little more prepared, a little more confident, so that you know what's out there, what resources are available to you.

Tracy Weistreich 01:16:27
Thank you. Patrick, can you tell us about the things you do to raise awareness about Parkinson's within your community and why this work is so important to you?

Patrick Welch 01:16:39
I got involved with the Parkinson's issue even before I was diagnosed with it. A female fellow veteran had called me one time and asked me what I could do to help in her struggle with Parkinson's because she knew of my advocacy work. So, I began doing the research, as I mentioned in the piece that I did.

What has happened now is I've taken my advocacy to new levels. I've gotten involved with our local media. We've had our Buffalo News, in what they call their Refresh section of the newspaper, do a feature story on Parkinson's disease and veterans with Parkinson's disease. We've had radio stations doing interviews with me, giving me an outlet there. I'm offering to speak at any programs where people want to hear more about Parkinson's disease, what it does to veterans and what the VA is doing to assist veterans in those regards.

Tracy Weistreich 01:17:43
Thank you. That's amazing. I also had received a question that asked about the use of VA Whole Health Services, which for those of you who don't know, include things like tai chi, yoga, mindfulness and weight management. Patrick, can you talk about how you learned about these programs, as well as the impact they've had on your PD management?

Patrick Welch 01:18:05
Yes, I serve on the medical center's director's advisory board. I've served in that capacity for about the last 30 years through many different directors. We have presentations at our bimonthly meetings where different departments of the VA come in and tell us what they do. We had the lady who runs our Whole Health program come in and do a presentation. I got involved with her in finding out exactly what Whole Health does, what I thought might benefit me.

We're having those discussions, and I'm looking to get enrolled in. I've done tai chi in the past. One of the things, because I've got leg injuries, I can't do a lot of yoga stuff, but they have a chair yoga program that, for people with disabilities like I have, is also a very good thing to do. We're also publicizing that. Then the auxiliary area that is run is for the spousal support out of the Whole Health department, where they get engaged in providing information to the spouses of people with Parkinson's disease and help guide them in how to care for that person. It's been a very, very good experience. They're very knowledgeable, and they do a very good job.

Tracy Weistreich 01:19:30
Thank you. Final question to Amanda. Are these services, or are there services available to veterans who have Parkinson's disease but who are not combat veterans?

Amanda Janicki 01:19:44
Yeah, absolutely. Let us know what you're looking for, what would make your life easier, more enjoyable, lighter, more connected, and we'll help you find what resources might be out there. Like I said earlier, we'll do some digging for you to see what makes sense for you and try to partner with the VA if we can, see what the VA offers. There's a lot out there, and with things being virtual nowadays, there's so many more options that if it's not available locally in your community, you might be able to access it online. I would say yes, and just reach out and let us know what you're struggling with, what you're thinking of might help, or we can help you with that.

Tracy Weistreich 01:20:25
Thank you so much. In fact, thank you so much to Dr. Marsh, Patrick and Amanda for the information that you've shared here today. Thank you to everyone for viewing and participating in today's webinar. We know that additional questions have come in, and while we were not able to answer them live, we will follow up with you to ensure that your questions are addressed.

Before we wrap up, I'd like to highlight a few resources that are available. Specifically, the Parkinson's Foundation resources that you see on this slide. Make sure to visit parkinson.org/veterans to learn more.

On this slide, we have some additional information that is available through the VA. Be sure to go to parkinsons.va.gov to learn more information about the resources you see on this slide.

Finally, once we close the webinar, an online survey will pop up on your screen. Your feedback is extremely important to us and helps us improve future webinars for the veteran community. You can even suggest future topics. We're very open to listening to what you have to say.

Once again, this webinar is being recorded and will be available for viewing early next week at parkinson.org/va2022. You will also be receiving a link to the recording via email. Thank you for being with us today. We look forward to connecting with you again very soon.

Laura Marsh, MD,
Executive Director, Mental Health Care Line, Michael E. DeBakey Veterans Affairs Medical Center, National VA Parkinson's Disease Consortium Member
Professor of Psychiatry and Neurology, Baylor College of Medicine

Patrick Welch, PhD
Sgt. U.S. Marine Corps (Ret)

Amanda Janicke, LCSW, CDP
Parkinson’s Disease Information Specialist, Parkinson’s Foundation

Sheera Rosenfeld
Vice President of Strategic Initiatives, Parkinson’s Foundation

Tracy L. Weistreich, PhD, RN
Nurse Executive, Veterans Health Administration (VHA) National Center for Healthcare Advancement & Partnerships