Dan Keller 00:08

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. Comorbidities are conditions that occur along with another disease. People with Parkinson's may face a variety of comorbidities. These can be the result of Parkinson's or its treatments, or they may just be conditions that are common among the general public. Also, as Parkinson's progresses, you're likely to be taking multiple types of medications several times a day. When you add in drugs to treat comorbidities, you increase the chance that the medications will interact with each other. It all gets pretty complicated. To help sort it out and get suggestions on how to deal with comorbidities, I spoke with Dr. Connie Marras, a movement disorders neurologist at the University of Toronto in Canada. She sees comorbidities as falling into two main categories.

Dr. Connie Marras 01:35

You can divide comorbidities in Parkinson's disease into things that happen because of the Parkinson's disease, and then things that happen not related specifically to Parkinson's disease, or for which we don't understand the relationship. At least those that are related to Parkinson's disease, I would say one of the most common comorbidities is infections, in particular pneumonia. And this can occur because people with Parkinson's disease have difficulties controlling the swallowing of liquids and foods, and some of them will go down the windpipe occasionally and lead to infections like pneumonia, and that's commonly called aspiration pneumonia, and that can be a particularly dangerous complication of Parkinson's disease, often leading to hospital admission. Urinary tract infections can happen also in Parkinson's disease. And the other big one that I would always think about is falls. Because of the balance difficulties that people with Parkinson's disease have, they're more prone to falls, particularly as the disease progresses. And obviously the big danger is fractures, like hip fractures, for example, which are also a major cause of hospital admission in people with Parkinson's disease. So those I put under the category of things that are related directly to the Parkinson's disease. There are also associations with other diseases that we don't really understand, and so a number of observational studies in Parkinson's disease have identified associations with other conditions, and one of them that's emerging and is of significant interest is, for example, diabetes, which has been found to be a risk factor for Parkinson's disease, actually, and there is emerging evidence that people with diabetes and Parkinson's disease have a risk of more aggressive progression of Parkinson's symptoms. That would be the way I think about comorbidities in Parkinson's disease.

Dan Keller 03:35

Cardiovascular disease also often goes along with diabetes. So does that also complicate things?

Dr. Connie Marras 03:42

Yes, in fact, there's been a number of studies looking at the relationship between cardiovascular disease and Parkinson's disease, and there does seem to be an increased incidence of cardiovascular disease, maybe because of the diabetes association. Also, there's an association between levodopa treatment, which you may well know is a cornerstone of Parkinson's disease therapy, and metabolic changes that may predispose to cardiovascular disease. And while that's not something we can particularly avoid, because levodopa is, as I said, a cornerstone of therapy, it is something that needs to raise our awareness of the need to monitor for cardiovascular disease in this population.

Dan Keller 04:25

People with chronic disease often have some depression. Does depression also occur here? And does treatment of depression, especially with drugs, have the potential to interfere with treatment of the Parkinson's disease?

Dr. Connie Marras 04:39

For sure, depression is a part of Parkinson's disease. I didn't mention it as a comorbidity so much because I think of it as an integral symptom of Parkinson's disease and not something that arises sort of as a secondary event or sort of an unrelated, coexisting event. So we're more and more aware of non-motor symptoms in Parkinson's disease, like depression, anxiety as well, constipation, and blood pressure issues, particularly low blood pressure, for example. So these things all go along as part and parcel of Parkinson's disease, and I wouldn't label them as comorbidities so much, but maybe that's a semantic issue. And depression is a major non-motor symptom of Parkinson's disease, and I do think that it has implications for Parkinson's disease health above and beyond the depression itself. Because it seems that in people who are depressed, all the symptoms get worse, all of the other symptoms that we're treating in Parkinson's disease are exacerbated and also are often more resistant to treatment themselves. So the treatment of the underlying depression often gives people benefits even beyond their mood.

Dan Keller 05:56

Are all these conditions in the realm of the neurologist, or do other kinds of physicians have to come in to deal with some of these comorbidities?

Dr. Connie Marras 06:07

So definitely not all in the realm of the neurologist. So when coming back to the comorbidities that I mentioned, for example, the falls, I would be seeking guidance from my physiotherapy colleagues, for example. Often, with respect to the multidimensional symptoms that we've already talked about, geriatricians are a very useful type of physician who can look at the problem more holistically than neurologists can. And so working alongside those other professionals is often very important. And obviously, you know, cardiovascular disease and diabetes are not the wheelhouse of the neurologist. And so if we identify a patient who has other risk factors for cardiovascular disease, like high blood pressure or diabetes, for example, we would then be referring on, and I think that it's important to facilitate that multidisciplinary care, for sure.

Dan Keller 07:08

Is there anything that people with Parkinson's disease can do to avoid some of these other conditions that either arise from the Parkinson's disease or are just common in people of older age? What can they do to help themselves before these things either develop or once they have them?

Dr. Connie Marras 07:27

We can take measures to try to prevent complications. So coming back to pneumonia, for example, because a major risk factor for pneumonia in people with Parkinson's disease is the swallowing difficulty, then the neurologist has a responsibility to ask about swallowing difficulties and to make people with Parkinson's disease aware that this is an issue. If people with Parkinson's disease are noticing coughing, for example, with swallowing of food and liquids, then it's very useful for us to give some bridging advice about swallowing, so avoiding things that are dry and crumbly that can go down the wrong way, taking things into the mouth in small amounts so that you're avoiding large amounts that have to be handled by the swallowing mechanism. And those pieces of advice can be helpful. And then we also need to engage our speech-language pathology colleagues to do swallowing studies, and they are really the experts in judging the risk associated with swallowing difficulty in Parkinson's disease. And they can do more advanced swallowing studies than could be done in an office, so video swallow studies, for example, that can actually document things going down the wrong way. And then sometimes they will recommend more advanced or significant interventions like thickening of liquids. And so they can help us a great deal in that regard. So vigilance regarding swallowing, coming back to being vigilant if you're coughing with your liquids or your solids, that should be an alarm bell to something happening. And then with respect to falls, you know, if people are feeling unsteady on their feet or having stumbles or near falls, then we want to try interventions like early consultation with physiotherapists. Or many communities have falls prevention programs that physicians can refer patients to in order to prevent those kinds of complications, like serious falls that lead to hip fractures, for example. And then things that are not related to Parkinson's disease, like cardiovascular disease or not directly causally related, let's say, we can be, again, vigilant for those risk factors in our patients, such as high blood pressure, smoking, high cholesterol, and blood sugar control that then would be taken on by the internal medicine physicians or the family doctor to help control. And that may help, making a patient with Parkinson's disease more robust in their general health is only going to help with respect to being able to combat these other aspects of the disease that are related to Parkinson's itself.

Dan Keller 10:06

A lot of people on chronic medication really have trouble with compliance or adherence, meaning taking the medication as prescribed often enough, in correct doses, things like that. Is that any more of a problem in people with Parkinson's, or do they just fall into the general category of trying to remember or afford their medication?

Dr. Connie Marras 10:28

I think it's particularly challenging for people with Parkinson's disease because often the medications are taken so many times per day. This is not so much an issue in the first years of the disease, but as the disease progresses, we can have patients taking medication every two to three hours, and that is very burdensome and difficult for people. So I do think that it's more challenging for people with Parkinson's disease.

Dan Keller 10:55

Is it recommended that people with Parkinson's either tell their pharmacist or tell other physicians about their complete medical history, because I would think there could be a lot of drug interactions when you have a lot of drugs?

Dr. Connie Marras 11:13

Always a good idea, for sure. And this is particularly not so much an issue perhaps with levodopa, which has relatively few drug interactions compared to others. But when we start to add on medications like antidepressants, for example, or medications for other non-motor symptoms, then these can definitely have interactions with other medications. And so that is an important aspect. And Parkinson's disease being such a multifaceted disease, people can get on quite a number of medications for the Parkinson's itself, and then you add on things for the comorbidities, and it really does add up. So it's very important for the patients to be talking with their pharmacists about interactions, and then for the pharmacist to be relaying this to doctors, and also for the patients to be telling their other doctors about their medication list. So I think one thing that often, as a movement disorder neurologist, I feel that I've sometimes done an incomplete job if my patient doesn't come with a full list of their medications, even beyond Parkinson's disease, so that I can't take a look and make sure that the combination seems safe. So my advice to people with Parkinson's disease is always carry a complete list of your medications to all your doctor's appointments and share that with your physicians.

Dan Keller 12:31

I suppose it's good to use just one pharmacy or one pharmacy chain so they know all your medications. If you go and get prescriptions filled at different places, they may not understand or know what else you're on?

Dr. Connie Marras 12:44

Absolutely yes, that's definitely a good idea, because otherwise they're not going to be able to flag those interactions.

Dan Keller 12:53

What kind of advice would you give to someone with Parkinson's disease, considering what we've been talking about, comorbidities? Are there any sort of nutshell pieces of advice that they should keep in mind?

Dr. Connie Marras 13:06

So I think we always want to try to prevent complications and these comorbid issues, like infections and falls, for example. So with respect to the infection issue, I'd say always be vigilant for coughing with your swallowing and tell your physicians about that, because there are things we can do then to reduce the risk of pneumonia. Another important point is that infection will often make all of the symptoms of Parkinson's disease worse. So if you have an infection of any kind, say a urinary tract infection, that can set off all the symptoms of Parkinson's disease and make it seem like your Parkinson's disease is progressing when what is happening is you have another illness that's making the problem worse. So if you're calling your neurologist saying, "My symptoms of Parkinson's disease have all of a sudden gotten quite a bit worse," the physician should be thinking about these other comorbid illnesses that might be playing a role. But also as a patient, you can help by mentioning any other issues with your health that are going on right now that might be playing a role. So keeping that in mind. And then the other nutshell, I think, is make sure that you talk to your physician about difficulties with balance and ask about referral to falls prevention or physiotherapy that can optimize your safety to prevent falls and fractures.

Dan Keller 14:36

Very good. I appreciate it.

Dan Keller 14:46

For more information on comorbidities in Parkinson's disease, you can call our toll-free helpline at 1-800-4PD-INFO. Our PD information specialists can provide you with information and resources, including movement disorders experts with experience in this area. They can also direct you to relevant past Parkinson's Foundation webinars. If you have any questions about the topics discussed today, or if you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. This episode of Substantial Matters was made possible through the generous donations of thousands of people affected by Parkinson's and a grant from Mylan 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. Our next two episodes will focus on hallucinations, a symptom not many people realize can be caused by Parkinson's. Psychosis can be a scary word, so our expert guests will help allay any fears you may have and help you understand this potential symptom. You can also tune into a Parkinson's Foundation expert briefing webinar on psychosis on February 27 at 1 PM Eastern Time. Go to parkinson.org/expertbriefings to register, see our schedule of upcoming webinars, and listen to all our past webinars. Until then, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-473-4636. Thank you for listening.

Dr. Marras trained in neurology and movement disorders at the University of Toronto. She subsequently obtained a PhD in epidemiology at the University of Toronto and further trained in epidemiologic research methods at the Parkinson’s Institute in California. She is currently an Associate Professor of Neurology at the University of Toronto and a neurologist at the Toronto Western Hospital Movement Disorders Centre, a Parkinson’s Foundation Center of Excellence. She also serves as an Associate Editor for the Movement Disorders Journal, Executive Committee member of the Pan-American section of the Movement Disorders Society and vice-chair of the research ethics board of the University Health Network in Toronto. Areas of research focus include the epidemiology and clinical expression of Parkinson’s disease and evaluating clinical assessment tools in Parkinson’s disease.

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.

When the time comes for drug therapy, most people with Parkinson's start off on levodopa. Later, other medications may be added, but at some point, they may consider other treatments—specifically deep brain stimulation, or DBS, or a somewhat newer technology, focused ultrasound.

DBS requires surgical implantation of electrodes in the brain, as well as a pulse generator in the upper chest to supply electrical impulses to the brain. Focused ultrasound does not require surgery, but works by aiming high-frequency sound waves at a specific part of the brain responsible for Parkinson's motor symptoms, thereby heating it and scarring the tissue. Each has its advantages and disadvantages, and careful patient selection for either technique is important to achieve the best results.

This episode is made possible with an educational grant from Medtronic. I spoke with Dr. Kyle Mitchell of Duke University about these two technologies. He first discussed who could most benefit from DBS and what symptoms it can control.

Dr. Kyle Mitchell 2:03

Deep brain stimulation is really useful for a select set of people with Parkinson's disease, with the goal of treating some specific symptoms. The most common would be treating a tremor that is either responding or not responding to medication. We would expect deep brain stimulation to have a high chance of helping with that.

Second is if medications are working well, but there are some limitations to how they're working. That can present as either dyskinesia—which is a description of the wiggling or writhing movements that people can experience when they're on medication—or the ups and downs or fluctuations that people can experience when they're on Parkinson's medicines, where one minute they're feeling fine, and a couple of hours later maybe they're not moving as well. Deep brain stimulation is good at smoothing that out and really maximizing that "on" or good time during the day when oral medications are no longer cutting it.

Dan Keller 2:57

Does it address any of the other symptoms—gastrointestinal slowness of movement, bradykinesia, any of those things?

Dr. Kyle Mitchell 3:05

Deep brain stimulation is really just helpful for symptoms that can also respond to levodopa or similar medicines. So bradykinesia can apply; if that's a symptom that responds for an individual when they take medicine, I would also expect that to improve with deep brain stimulation, or DBS.

Things like GI symptoms, constipation, or really what are considered non-motor symptoms—like cognitive or other symptoms—are not expected to improve with DBS. So we're looking primarily at motor or movement-related symptoms that respond to Parkinson's medicines, and also tremor, regardless of whether or not it responds to medicine.

Dan Keller 3:44

Are there any predictors of a good outcome with deep brain stimulation?

Dr. Kyle Mitchell 3:52

Yes, there are several predictors for who's going to do well, and a lot of that is really quantified or calculated when we're trying to see if we think this would be a good idea for an individual. The biggest predictor is how well someone responds to levodopa.

The way we assess this is by having someone come in completely off their medications, and we can get a score on a scale which assesses how severe the symptoms are, like tremor or stiffness or slowness of movements. Then we have that person take medication—take levodopa—and then record that same scale when they're optimized and feeling "on" medicine. The people who improve the most from that "off" state to the "on" state are the people who are also likely to have the more dramatic improvement when they undergo DBS and DBS programming. In general, people with tremor also do very well with DBS.

Dan Keller 4:43

I guess a very basic question would be: what is DBS, and how is it done?

Dr. Kyle Mitchell 4:48

DBS is a surgical procedure that's done by a neurosurgeon, with or without the help of a neurologist to help localize the target. I guess it's best thought of as a pacemaker for the brain, so it's a way that we can modulate brain rhythms in order to make them more normal.

In Parkinson's, we see when we're recording people's brains that the brain can get out of rhythm, much like a heart could get out of rhythm. DBS is using electricity to restore a more normal brain rhythm, just like a pacemaker would for the heart. What it is physically is small electrodes, which are about as wide as the end of a pen, placed into very specific spots in the brain known to be involved with Parkinson's symptoms. Then we connect those electrodes or wires to a small computer and battery pack that we can adjust. We can make those adjustments to normalize that brain rhythm, and when we do that, it helps with those motor symptoms of Parkinson's.

Dan Keller 5:47

Does patient age affect predicted outcomes with DBS?

Dr. Kyle Mitchell 5:53

That is a topic that is not fully known. I think the trend has been that people who are younger more reliably do well, but I'd say it's somewhat controversial in the literature. There have been several studies that have shown people in their 70s and even people in their early 80s still having quite a good response with DBS.

Other medical issues can come up the longer someone lives with Parkinson's that could make surgery more risky—things like heart disease, lung disease, trouble with anesthesia, or maybe memory problems. So age is really a relative term when it comes to DBS. It depends heavily on how healthy the person is overall, regardless of chronological age.

Dan Keller 6:32

What's coming along in DBS? We see all sorts of electronics in every sphere getting better over time. What's going on here?

Dr. Kyle Mitchell 6:41

DBS has really undergone a big explosion in technology over the last few years, primarily triggered by a few different companies entering the market and creating different ways of doing DBS. I could focus on a few key things.

One is directional DBS. This is DBS where the doctor, the neurologist, can steer the electrical current in the brain instead of just stimulating all around the wire. That allows the neurologist to focus the electricity in the brain just where it's needed, making it very targeted and very individualized. This seems to reduce the chance of causing side effects from that electrical stimulation.

Another innovation has been rechargeable batteries. Batteries deplete and batteries die—that's what they do. Typically with DBS, people would need a new battery every three to five years, which required a minor surgery to replace it. But with rechargeable batteries, someone can have the same battery for up to 15 years, so that's been a really nice addition.

The last thing is a new technology on the market called brain-sensing DBS. This allows the DBS device to record the brain signals of a person. Neurologists can find those bad brain signals or those abnormal rhythms in the brain, and they can use that information to better program the DBS to treat them.

Dan Keller 7:57

Artificial intelligence is a big topic. Do you think at some point the DBS units will reprogram themselves moment-to-moment depending on what's going on?

Dr. Kyle Mitchell 8:06

It's a very exciting topic within DBS, and an area of a lot of ongoing research. That is a field called adaptive DBS. I think "artificial intelligence" is a little too far right now; I would think of it more as DBS that can adjust on the fly according to someone's immediate brain signals.

The thought behind that would be that people probably don't need the same amount of stimulation when they're sleeping or when their oral medications are working perfectly. So DBS would be better if it adjusted only when the patient needs it, and then kind of turned down when the patient doesn't need it as much. The best way to think about that would be like a thermostat in your house. You set it to a temperature—we'll call that good control of tremor or good control of stiffness—and that thermostat only turns the air conditioning on when it gets hot enough in the room, and then when the temperature is ideal, that thermostat turns off. We would envision the DBS doing that in the same way: turning up when it's needed, and then turning down when the brain rhythms look more normal.

Dan Keller 9:04

Why don't we turn to a different technology, which is focused ultrasound, or FUS. How is that different from DBS, and how is it done?

Dr. Kyle Mitchell 9:15

Focused ultrasound is a relatively newer procedure from just over the last few years. This is different from DBS in that it doesn't involve hardware implanted in the body; it doesn't involve a computer or a battery. This is done by using an MRI scan of the brain to find the specific brain target, and then using high-intensity ultrasound. It's just like the ultrasound you see in other technologies, but this is so high in intensity that it can actually heat up a very small target in the brain—similar to the targets we use in DBS. When that part of the brain heats up enough, it creates what's called a lesion or a scar in the brain. It turns out that if you make a lesion in a very specific spot in the brain, it can actually help symptoms like stiffness and tremor.

So I would say the biggest differences are that you don't leave anything in the body when you're done, and it doesn't require making a hole in the skull so that a wire can go in—it's all done outside of the skull. Another key difference is that it's only really done at this point for one side of the body, due to concern that if it's done on both sides of the brain for both sides of the body, there's a much higher chance of severe side effects or complications from it. So it's typically done just if someone has a lot more symptoms on one side versus the other.

What's interesting is that focused ultrasound is somewhat of a new way of performing an old surgery. These lesions or scars were actually made in the same areas of the brain back as early as the 1950s and '60s. The main difference was that back then, it was using a wire that went physically into the brain and heated up until it made that lesion or scar. Focused ultrasound is doing the exact same thing at its core, but it doesn't require placing instruments into the brain or making that hole in the skull. A new, more elegant way of doing a somewhat older procedure is the best way to think about it.

Dan Keller 11:03

When I was a kid, I saw on TV they were doing very early cryoablation on a woman for Parkinson's with refrigerated or cooled alcohol in some sort of device that would go into the brain. So I guess that was a real forerunner of this sort of stuff.

Dr. Kyle Mitchell 11:21

Very interesting. You know, those lesions were actually performed even before levodopa was discovered for Parkinson's, so for a time, they were the only treatment for the motor symptoms of Parkinson's. They kind of went out of favor for a while after people were doing so well with levodopa and other medical treatments. This is really a neat resurgence of that approach, made possible with this new technology of focused ultrasound.

Dan Keller 11:44

The one thing focused ultrasound does that DBS doesn't is it wipes out a specific spot in the brain, so I take it it's irreversible.

Dr. Kyle Mitchell 11:54

That's right, and that's a good way of looking at it. I don't like to talk about focused ultrasound as a completely non-invasive procedure, even though you're not leaving hardware in, because you're still making a lesion or a scar. By definition, a scar is not reversible; it creates that small area of permanent damage there. So it's something where, once it's done, it's there—it either works or it doesn't, but that lesion has been made.

Dan Keller 12:16

Why would you choose DBS versus focused ultrasound, or the reverse, for a patient?

Dr. Kyle Mitchell 12:23

I think there are a couple of reasons for either. I'll talk first about focused ultrasound, since it's newer and maybe a little more controversial on exactly who would benefit and who wouldn't. I see focused ultrasound as being best for someone with really asymmetric symptoms—meaning symptoms that are much more severe on just one side of the body—and a person who maybe strongly wants to avoid having implanted hardware in their body for whatever reason. That may be someone who does better with focused ultrasound.

I think DBS would be best for someone with Parkinson's disease who is completely okay with that hardware, who would benefit from the option of treating both sides of the brain for both sides of the body, and who likes the idea of adjustability over time. They understand that Parkinson's changes and worsens as time goes on, and they want that ability to adjust the computer and adjust the stimulator to address those changing symptoms.

I think some surgical patients will be candidates for focused ultrasound, and the majority will undergo DBS for the time being. But a big caveat to that is DBS has been around for over 20 years, and early on, it didn't really look like what it looks like now; there have been a lot of technological improvements. I would expect a similar trajectory for focused ultrasound and really any new surgical method that comes around. There's always room for improving it, and maybe that group of people who would benefit from it will expand as time goes on.

Dan Keller 13:40

With today's technologies for either of them, what kind of long-term results or benefits can people expect? I understand every patient is different, but do these things lose their effect over time?

Dr. Kyle Mitchell 13:54

That's a really great question. We certainly have more data when it comes to DBS just because we have people who have been treated with it for decades, as opposed to just a few years with focused ultrasound. On average, DBS is still going to treat those same symptoms that improved initially—tremor, stiffness, and slowness. It's still going to treat those throughout the life of the person.

However, the Parkinson's is still getting worse slowly in the background as time goes on, and certain new things may come up: maybe worsening balance, worsening memory, or more freezing of gait, meaning your feet kind of getting stuck to the ground. If those things never responded to DBS for that person initially, those things wouldn't be expected to improve later on. That's another way of saying that just because new issues may crop up that are not going to respond to the DBS that's already there, the main reasons DBS was initially implanted for a person—tremor, stiffness, dyskinesia—would be expected to continue to gain improvement or continue to have some symptom control as time goes on, over the course of years to decades. It's not a cure for Parkinson's. These things can and do get worse as time goes on, but the specific symptoms that DBS is targeting will continue to be treated.

Dan Keller 15:04

So much of this gages its efficacy based on the Unified Parkinson's Disease Rating Scale, Part III—the UPDRS Part III—which measures motor function. Is it really better to look at overall quality of life, which would take into account motor function, side effects, and daily functioning after either of these kinds of technologies are applied?

Dr. Kyle Mitchell 15:30

Absolutely, and you're right. A lot of the time, the main outcome that's been evaluated in scientific trials is simply how someone looks from a motor standpoint, like tremor and stiffness. But what does that really mean for quality of life?

Fortunately, with those early, large DBS studies—very large trials in Europe and in the US—quality of life outcomes were evaluated. The main outcome wasn't just how much their score on the UPDRS improved; it was how many more hours of "on" time or good time per day a person experienced. They found a very dramatic improvement of about four and a half hours of more "on" time per day, and this was in the early days of DBS.

There are also scales that assess quality of life specifically, looking at things like reactions to medication and side effects of medicines, and fortunately, those also improve with DBS. It's been nice that when these large studies were done, they really looked at a comprehensive set of outcomes. While people often focus on what percentage someone improves on their motor rating scale, these other quality of life outcomes have been shown to get significantly better with DBS in carefully selected patients. The same thing applies to focused ultrasound: the UPDRS is certainly looked at, but the same quality of life surveys are also evaluated, and there have definitely been clear indications that it's helping in those areas as well.

Dan Keller 16:55

Have we missed anything that's interesting or important to add?

Dr. Kyle Mitchell 16:59

I think one thing that anyone will think about when they're considering surgery for themselves or a loved one would be what the risks are. Any kind of surgery has risks that come along with it, whether that be a risk of stroke or hemorrhage, which we see hovering around that 1% to 2% chance. There is also infection; infection primarily applies to DBS because of the implanted hardware, which carries a 3% to 5% risk. Infection is not as much of an issue with focused ultrasound.

However, in a recent study with focused ultrasound, there was concern for some long-lasting side effects that could last months, even up to a year in some people. Side effects like clumsiness on the treated side affected a low number of people, but it was still 5% to 10% of participants. There were also speech issues, which maybe lasted a couple of months and then eventually got better. These are not minor; these are significant side effects that can happen with surgery, and something that definitely needs to be taken into consideration before undergoing either.

They really have different side effect profiles, as I've mentioned: a higher chance of infection with DBS, but a higher chance of persistent speech issues, clumsiness, or dyskinesia with focused ultrasound at a year, and we don't know if those eventually go away, but certainly they can stick around a good long time. It's just important to know that there are risks with any surgical procedure. Before undergoing any of them, I would recommend any person with Parkinson's get a clear idea of what those are so they can make an educated decision on the best treatment for them.

Dan Keller 18:31

Very wise advice to end on. Thank you very much, this was informative. I'm sure people who are getting to the point of considering either of these technologies will find this helps put them in perspective and sort them out.

For more on DBS, go to our online library at parkinson.org/library and choose "deep brain stimulation" in the topic drop-down menu. You'll find fact sheets, relevant podcast episodes on the subject, and videos featuring our National Medical Advisor, Dr. Michael S. Okun, on how the DBS device works, the risks and benefits of the surgery, what family members need to know about it, and who is a good candidate for DBS. You can also download our book titled Surgical Options, which includes focused ultrasound as well as extensive information on DBS. The book concludes with a section on what developments are on the horizon, appendices with useful suggestions and advice, and a glossary of common and technical terms.

If you're considering DBS or focused ultrasound, you may find other people with similar interests or who have experience with one of these therapies in our online PD Conversations section. At parkinson.org/pdconversations, you can even pose your questions to experts.

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

If you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. If you enjoyed this podcast, be sure to subscribe, 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. This episode was made possible with an educational grant from Medtronic. Until 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

Kyle Mitchell, MD is an assistant professor in neurology at Duke University and a movement disorders specialist. In the clinic, he treats patients with Parkinson’s disease and other movement disorders. He is an expert in complex deep brain stimulation (DBS) evaluation as well as intraoperative and postoperative DBS programming and care. He also manages and studies interdisciplinary evaluations and care of people with Parkinson’s disease. His research focuses on improving deep brain stimulation. He works in collaboration with engineers and neurosurgeons on developing new technology to enhance the effectiveness and reduce side effects of DBS. He also studies patient outcomes of people with DBS to help improve how we target specific brain structures and how we select patients who are most likely to benefit from surgery. He has published in multiple neurology and neurosurgery peer reviewed journals and books and has presented his research at international conferences and educational events. He is a member of the American Academy of Neurology, Movement Disorders Society, and the Parkinson’s Study Group and is part of Duke’s Parkinson’s Foundation Center of Excellence.

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.

Heather Cianci 00:00:04
Welcome, everyone, to the third talk in the Parkinson's Foundation ninth Expert Briefing series, Freezing, Sweating and Falls When Walking with Parkinson's Disease. We are very excited to announce that we have over 2,500 people registered from 36 countries, all 50 states, Puerto Rico and D.C. In addition, our Ohio chapter is having a viewing party, and we want to give them a shout-out. My name is Heather Cianci, and I am your guest host for today's discussion.

I am a physical therapist at the Dan Aaron Parkinson's Rehabilitation Center in Philadelphia, Pennsylvania, part of the University of Pennsylvania's Parkinson's Disease and Movement Disorders Center, a Parkinson's Foundation Center of Excellence. Please know that these webinars are not created in isolation, which is why I am very pleased to announce that this series has been designed in collaboration with our partner Parkinson's organizations, who are members of the Alliance of Independent Regional Parkinson Organizations.

I would also like to acknowledge our sponsors for this series: AbbVie, Sunovion and Lundbeck. Without their generous support, these webinars would not be possible. Thank you so much.

Remember that this PowerPoint slide deck can be downloaded on the viewing page that you are 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 this webinar. Health professionals can earn one free CEU through the American Society on Aging.

If you are registered as a health professional and indicated that you would like CEUs, you will receive an email by the end of today with steps on how to collect your one CEU. Remember, you have just 30 days, until February 16, to collect this free CEU.

It is now my pleasure to welcome our guest speaker, Dr. Fay Horak. Dr. Horak is a professor of neurology and director of the Balance Disorders Laboratory at Oregon Health & Science University, a Parkinson's Foundation Center of Excellence, and the Portland VA Healthcare System. Dr. Horak is a physical therapist and neuroscientist who is internationally known for her research on the physiology and rehabilitation of balance disorders in Parkinson's.

Dr. Horak's laboratory is considered the premier Balance Disorders Laboratory in the world. Dr. Horak has several patents for new technology to measure and rehabilitate balance disorders. She has developed a popular new clinical balance assessment tool called the BESTest, and her novel instrumented mobility system called Mobility Lab allows clinicians and researchers to quantify balance and gait disorders using wireless wearable sensors. I've had the personal pleasure of hearing Dr. Horak speak on numerous occasions, and I know that you will really enjoy today's presentation. And now, Dr. Horak.

Fay Horak 00:03:19
Thank you very much. Today we're going to be thinking about freezing, not the kind of freezing you see here, of course, and sweating and falls. But we will be thinking about sweating both for exercise and because of fear of falling.

I need to mention that I have a potential conflict of interest because you may be seeing slides that include some of the wireless body-worn sensor technology we use to measure balance and gait.

What we're going to focus on today are three things. First, to understand how the brain controls walking and balance. Second, to discover what kinds of balance impairments or problems result in freezing and falls, because balance is really the underlying reason for both freezing and falls. And third, to explore what can be done to minimize freezing and falls. We'll talk about new things that are coming, as well as what we know about exercise and rehabilitation.

First of all, control of balance and walking by the brain is a very complicated concept because so many parts of the brain are involved in balance control. The basal ganglia, which is in the middle of the brain, is the part that's affected by Parkinson's disease. Normally, it can affect balance and walking both by going up through the cortical areas and down to the spinal cord, and then more directly to the brainstem and spinal cord.

However, what happens with Parkinson's disease is the basal ganglia has too much inhibition on both the pathways going up to the cortex and the pathways going down to the brainstem. As a consequence of this problem, people with Parkinson's disease use other parts of the brain to control balance, primarily the frontal cortex in the front of the brain, which normally we use for thinking. They have to use the thinking or cognitive part of the brain, the voluntary part of the brain, more because these automatic pathways from the basal ganglia down to the brainstem are inhibited too much.

We'll talk about the consequences of this soon. But first, let's think about freezing. What do we mean when we say a person has freezing of gait? It's been described as a brief, episodic absence or marked reduction of forward movement of the feet despite the intention to walk. Most people who have this have the feeling that their feet are glued to the floor. They're trying to move forward, but their brain doesn't connect to their muscles and their legs to allow them to walk.

Usually, it's not really frozen in terms of no movement at all, but associated with some rapid trembling or movement of the knees. I'm going to show you how that's really associated with rapid weight shifting or balance adjustments. We know that there are quite a few tricks that people can use to overcome freezing.

Fay Horak 00:06:44
I'm going to show you a movie of this person freezing now. Here he is coming toward a doorway, which is a place where many people freeze, either before an elevator or a narrow space. What he's going to do now is use some tricks. He makes a voluntary sideways movement, a voluntary large marching movement, and these things can help overcome a freezing event. But the freezing is marked by very small movements and this rapid trembling of the lower legs.

You'll notice that making a turn to his left is causing even more freezing than straight walking. He's using a couple more of these voluntary tricks to get going.

Next, you'll see him after he takes his levodopa. It's true that for most people with Parkinson's disease who have freezing, the freezing almost goes away or is much better when they're on their levodopa. But that doesn't mean his balance is perfect, because even people on their levodopa fall quite often. Sometimes it even makes their balance worse, even if it improves their freezing.

How do you know if you have freezing or not? One thing to do is to do what's very difficult for people who have freezing of gait, and that is to make a turn in place, like a 360-degree turn. This subject in our study is going to be turning. Turning is important because if you fall while you're turning, it's very dangerous because you could land on your hip and fracture a hip.

You'll see a video of her trying to turn and how it induces freezing and balance problems. That's why we're standing so close to her. She's turning in one direction, 360 degrees, and then the other direction. We're measuring with the sensors how much freezing she has.

This is the easiest way to elicit freezing, even in people who don't freeze when they're just walking straight ahead. Turning is special. It requires a lot of dynamic balance control, and it requires movement of your head, then your upper body and then your lower body. If you have rigidity, this is difficult to do, and it's involved in many different tasks of daily life.

What we did is we put a camera on people's belts, looking at their feet, and asked the question: how often do people turn in a day? You'll see a movie of a person's feet as they're getting around their apartment. We were surprised to see that people turn over 100 times an hour, or up to 1,000 times a day.

In fact, we all do more turning than we do walking straight. We think turning is something people need to be practicing in rehabilitation, and when we think about exercise to improve balance and reduce falls, we have to think about including turning in those exercises.

Fay Horak 00:10:10
Of course, this makes you a little dizzy looking at her turning around in her small kitchen. But you can see how important turning is. In fact, we did a study where we looked at 30 people at home with Parkinson's disease and 30 people without Parkinson's disease, and found that people with Parkinson's turn significantly slower than people without Parkinson's. They take many more steps, like up to four or five steps instead of one or two steps, to make a turn. Then we looked at how the quality of turning was affected by the severity of Parkinson's disease.

In the bottom graphs, you can see that the number of turns per every 30 minutes was smaller and smaller the worse the Parkinson's disease. People start avoiding turns as they get more severe, and their turning velocity gets slower and slower.

When we looked at falls, we found that what could predict falls was how people turned. The variability of the number of steps that they used to turn was more predictive of falls than anything else. I believe that this variability might reflect less automatic turning and more turning that has to come from the frontal cortex, or more voluntary part of the brain.

Why are balance and walking less automatic in people with Parkinson's disease, especially people who have freezing of gait, or what we call FOG? As I mentioned before, in people without Parkinson's disease, balance and gait are usually very automatic because the basal ganglia can communicate directly with the brainstem and the motor cortex to control balance and walking. You don't have to think about it.

However, as the basal ganglia starts to degenerate and people, in this case, are not taking their medication or are in their off state or they have freezing, they begin to use the front part of the brain, the frontal cortex, the more cognitive part of the brain, to control balance and walking. When they take levodopa, studies have shown that this helps them go back to using the more automatic parts of the brain for balance control. That's why, probably, there's less freezing.

Now, all of us have trouble trying to do two things at once. For example, here's a man who's trying to cross a busy street while he's texting, right next to a sign that says, 'Caution texters.' It looks like he's going to get into trouble shortly. What we know is that walking slows down when talking, and thinking slows down when walking. This is even more true for people with Parkinson's disease, and even more true for people with freezing.

Fay Horak 00:13:08
What we call the dual task cost -- that is, how much your walking and balance change when you're trying to think of something else -- is even higher in people with Parkinson's disease than people without Parkinson's disease. That tells us that they're using more attention and more cognitive control for balance and gait.

Here's two people walking, and they may both be using a lot of cognitive attention for balance because how much attention is required for balance really depends on how difficult the task is. The task in this athlete walking on a wire above the city is definitely challenging for anyone, but sometimes just walking, even with a walker, could be quite challenging and require a lot of attention for somebody with Parkinson's disease.

One thing to think about is you're not going to be asking people to talk to you or discuss what they want for lunch when they're trying to cross a busy street if they need to have all their attention on thinking about balance and thinking about walking, because that could be quite dangerous in these situations.

We did a study in which we showed that not only is walking affected by dual tasking, or trying to think about something at the same time as walking, but also balance is affected by dual tasking. Here we have a man on the left side who is going to be tripped by a moving surface. The platform underneath him is going to move backward, like pulling the rug out from under him, and he's going to have to take a step forward to keep himself from falling. It's an automatic stepping response for balance. On the right side, the same man will be doing this, but we're asking him to make a list of all the food he had to eat yesterday.

As he's thinking about all these different foods, then we pull the rug out from under him, and you'll see how much more difficult and dangerous it is for him. Here he is, thinking about balance, and he's able to take a step when he falls forward. In the next movie, you'll see that now he's thinking about his food and he falls into the harness, and we have to catch him.

The same situation, a slip or trip, can be recovered when you're using your cognition and attention to help improve your balance control. Yet it could result in a fall when you're thinking about something else.

Fay Horak 00:15:44
Why is that? One thing we know about these stepping responses is they require a lot of balance control. You have to shift your weight over to one leg so you can lift the other leg and take a step. On the right side here, you see the increased force in blue on one leg before the person takes a step.

Here you see what it looks like when this healthy person without Parkinson's disease is forced to do a postural stepping response. He shifts his weight to the left, and he's able to take a quick, large, single step to keep himself from falling. These are automatic balance responses that occur very rapidly and automatically.

This is what it looks like if you look at the forces under his feet. In the healthy person here without Parkinson's, the green force goes up, and then he takes a step. Whereas a person with Parkinson's disease that I'll show you next, he shifts his weight to the right and then to the left and then to the right and then to the left, and then finally takes a step later. There's too much balance control going back and forth, and he's not able to stop balance and start initiating a step.

Here you see a fellow who was off his medication with Parkinson's disease, who has freezing that makes him freeze even when he's falling, and he's not able to take a normal balanced step. In this case, because of that, he would fall into the harness when we move the platform under him and he falls forward.

When we looked at the brains of people with Parkinson's disease and healthy people with imaging, what we found is that the connections between the frontal part of the brain and down to the brainstem, where this balance center is, were stronger than normal in freezers compared to non-freezers.

You can see that in the graph on the right, in which the bar for the freezers is larger, showing that there are more connections. That is, the brain is talking more -- the cortical part of the brain, the higher-level parts, are talking more to the balance and walking parts than they are in people without Parkinson's or without freezing. Freezing involves too much cognitive control of balance and gait, so it's less automatic.

Fay Horak 00:18:36
The other thing that we found that's associated with freezing are some cognitive deficits, thinking differences. I think it tells us something about how the brain controls balance: that it's not just a sensory and a motor control issue. It's also a cognitive issue, and we're finding a mood issue.

Let's look at this task on the right that's called the Stroop inhibition test. In this task, we ask people who see these different words of colors to not say the word, but just say the colors. Try it yourself. Start from the left and go to the right on the top, and just say the colors, but not the words. You have to inhibit the word in order to say the color. You'd say red, blue, red, blue, green, pink, yellow, red, blue, pink, black, green.

Everybody's a little slower when there's not an agreement between the color and the word because you have to inhibit what you want to say automatically. But we found that the worse people were on the Stroop test, this cognitive task of inhibition, the worse was their freezing of gait. The better they did the test, the less freezing they had. I think that the kind of inhibition we need to stop shifting our weight, to stop balance and to then release the gait, is reflected in this same kind of inhibition.

That means the parts of the circuits in the brain that control this kind of cognitive inhibition are probably also involved in step initiation and in balance control.

In fact, when we looked at the right graph, you see the dual task cost, how much people slow down when they're talking. On the left graph, we're looking at the Stroop test. We see that both of these are related to how much connectivity there is from this inhibition pathway from the top of the brain, the thinking part of the brain, down to the automatic brainstem part of the brain. We believe that they share circuitry for both thinking as well as balance and gait.

Fay Horak 00:21:02
Luckily, lots of studies have also shown that these kinds of balance problems, and perhaps some of these cognitive problems, can be improved with practice in people with Parkinson's disease. For example, we did a study in which we had people standing on a movable surface, and the surface would move very quickly, which would force them to take a step. They started off taking two smaller steps, and with practice over an hour with rest breaks, we found that people with Parkinson's could improve.

On the right is a graph that shows how much their body's center of mass moves backward or falls backward. You can see that the dark line is people who have taken their levodopa medication, and they're not falling as far with practice over the blocks. Then we bring them back the next day, and they still can remember and are better than they were the day before.

However, what we did find is that when we had people try to do this kind of practice when they were in the off state, when they didn't take their medication that morning, they didn't learn as well. That learning was impaired. There was some improvement, but not nearly as much as when they were taking their medication.

There have been animal studies showing that levodopa is important for balance, for motor learning. It tells us that before we go to exercise or do any kind of practice where we want to improve our movements, it's best to be in the optimal on state and take your medication. We also learned, though, that practicing stepping backward did not improve their ability to step sideways or other directions. So we need to exercise with a variety of different movements.

Fay Horak 00:23:02
Here you see a woman with Parkinson's disease. First, on the left in the first video, you'll see her when she just starts to practice these stepping responses. Then in the next video, you'll see after an hour of practice. Here she is in our laboratory trying to keep her balance, and she had to take a lot of small backward steps. These automatic stepping responses were not very efficient because they weren't strong enough or large enough.

However, in the next video, you'll see after just practicing for less than an hour, she looks like she has normal stepping responses. She's able to stop her body from falling backward with a large step. Even though these things are fast and automatic, they are something you learn. By practice, you can learn to do them better.

How about freezing? What do we know about freezing and whether it can be improved? Here you see, when we have sensors on people's right and left foot, on the left a control subject without Parkinson's disease walking, and you can see his angular velocity of his lower leg in pink and blue as he walks along, compared to a person with freezing, where he's walking fine at first and then has a freezing episode where you get that trembling of the lower legs.

What we are doing is we're developing some new wireless technology. Of course, here's a wired prototype that's not very practical yet, in which we measure a person's walking, and then when their foot is on the ground, we give them a vibration to enhance the information to the brain that the right foot is on the ground or the left foot is on the ground.

Then we measured the percent of time people freeze. As you can see on the right, whether they do a single task or a dual task, there's a lot of freezing. Percent of time freezing was like 45% of the time when they didn't use this new biofeedback device, and it was much less when they used this biofeedback device. In fact, it improved as much as using a metronome to give them a cue, an external cue like marching.

Fay Horak 00:25:15
Now I'll show you a video of one of our subjects who had Parkinson's disease walking before we turned the biofeedback vibration on and after we turned the vibration on.

Here he is walking in the lab, and it's mostly in the turns that he freezes. Here you see a typical freezing type of a turn, which is dangerous because there's a lot of weight on one foot, and he has a hard time shifting his weight and takes a lot of small steps. He's wearing the device, but it's not turned on right now. This is his normal amount of freezing when he's off his medication.

He does also state that his freezing is much worse when he's anxious, and that freezing causes a lot of anxiety.

Now you see him a minute later when we turn the vibration on. It vibrates when his right foot is on the ground on his right side, and vibrates on the left when his left foot is on the ground. Immediately, it really helped him quite a bit. We're still trying to understand why this kind of biofeedback approach helps some people more than others. It's likely that some people benefit from one type of cue, like an auditory cue; other people more from vision; and in this case, from somatosensory information from the vibration. It might depend on the person which is going to benefit people the most.

This is still in the process of being studied. While we do this biofeedback, we can also look at brain activation. Here's a person who has a special kind of system in which we can look at how much the frontal part of their brain is active. We can see that before people freeze, the frontal part of the brain becomes very, very active right before and during a freezing event. Normally, it's less active during a turn. But with biofeedback, we're able to decrease the amount that the frontal part of the brain is used and make that turn more automatic.

We're hoping when the turn becomes more automatic, that's why it becomes less of a freezing type of turn.

Fay Horak 00:27:38
The other thing that we know can really help freezing, and especially fall prevention, is exercise. In fact, exercise is the only intervention that significantly reduces risk of falling, both in older people without Parkinson's and people with Parkinson's. Medication has not been shown to reduce freezing or falls, except, of course, levodopa improves freezing, but not necessarily falls.

People who have exercises that are focused on balance were 20% less likely to fall.

What kind of exercise is the best kind? People are always asking, and I'm going to say it's a complicated answer. But the best kind of exercise is really the kind of exercise you're actually going to do. That is, you can't just think about doing it. You have to actually do it, and several times a week or several times a day. A variety of types of exercises have been shown to reduce falls in people with Parkinson's. I'm going to show you examples of studies that include tai chi, dance and an aerobic type of exercise that involves agility training.

First, tai chi. There's a large study that was published recently showing that tai chi, like this, where a person is learning to shift their body center of mass forward and backward over their feet, helps them get to know their body better and get to know where their center of balance is. She's not looking at her body, but her brain knows her body better, and this improves this kinesthetic sense. The study has shown a significant reduction in falls in people who study tai chi three times a week for several weeks or months.

The other thing that can be improved with practice is dual task walking. That is, the ability to walk and chew gum at the same time or to talk and walk at the same time. Here's a study with just a few people with Parkinson's disease looking at their gait speed and how much it slowed down before they practiced. After four weeks of practice, they were walking much faster while they were talking. Then a month later, they retained that ability to do dual task at once. Even this automaticity of walking and balance can be improved by practicing it.

Fay Horak 00:30:14
There's also a series of studies from Gammon Earhart's laboratory at Washington University where they show that dance can improve balance and reduce falls in people with Parkinson's disease. They tried different kinds of dancing, ballroom dancing like waltzes and foxtrots and tango, and they found that tango that was adapted for people who never did it before and people with Parkinson's disease can really improve their balance.

On the right, you see the balance, the mini-BESTest. You can see that in the beginning, the tango dancers and the people who didn't do tango had the same score. But then after three months, six months, nine months and 12 months of doing tango lessons, you see balance improving more and more in the tango people, and balance gradually getting worse over a year in people who did not exercise by doing the tango.

This little video will show you what I mean by tango. You can see why it might be good for improving balance because the person has to walk backward and sideways, take big steps, and not let their upper body tip or fall. They have to follow a partner, and sometimes they are the leader, sometimes the follower. There's a lot of good practice of balance control by taking dance lessons like this.

I'm sure you probably heard about boxing because now it's becoming popular for people with balance problems to box. Why should boxing be good for balance? One thing is when you rapidly move your arms when you're standing, you're throwing your balance off, and your brain has to anticipate every arm movement you make and every time you hit a punching ball in order to compensate for the destabilization that comes with rapid arm movements or with hitting something.

I'm going to show you this video of this man who practiced with a trainer for four weeks boxing. You see in the beginning, when he throws a punch, he kind of loses his balance, and he's not rotating his trunk very well. He looks like his balance is not very good in the beginning, and after four weeks, you'll see improvements.

Fay Horak 00:32:52
Now here he is four weeks later. Walking backward is difficult, and he's learned to do that at the same time he's dual tasking by having to think and use his arms to punch the object there.

We're doing studies currently with training both balance and gait, as well as thinking. We call it an agility boot camp. In this case, a boot camp is where you go from station to station doing different tasks. People are doing first fast walks with large arm swings and large steps, and then power moves, which is more of an aerobic training with thinking big, and lunges, which would help to take big steps. Then obstacle course, walking sideways and through circles and turns and narrow spaces. Some boxing and some tai chi.

Then we make it even more challenging by adding cognitive tests on top of this, by doing a Stroop task, for example, while people are doing lunges, or doing a dual task by saying every other letter of the alphabet while they're going over obstacles. Or when they're boxing, telling them to do a no-go/go task so that they have to inhibit their movements, which is sometimes difficult.

Here's an example of a video of a person. In the beginning, he had very mild early-onset Parkinson's disease, still working full-time, but he felt like his balance was getting worse. When we pushed him with very challenging skipping and using his arms, we could induce freezing when he went through doorways.

Then after a few weeks working with the trainer, you'll see how much better he gets. Of course, not everybody is able to tap their knee and skip and turn their head and talk at the same time. But he said that this kind of training with this trainer for four weeks made a huge difference in how tired he was at work as a ranger out on uneven surfaces.

Fay Horak 00:35:40
What we're doing now is we're looking at whether exercise can change the brain. There are many studies that are showing that it not only improves your muscle, but it also changes your brain for the better. Here, what we did is half the people did an exercise agility boot camp -- those are the people in red -- first, and the other half did an education class about Parkinson's disease first. Then we switched, and they went into the exercise class and the other ones went into education.

The dual task cost on gait speed, that is how much people slowed down, improved with the exercise but not with the education. Then when we looked in their brains, we found that the exercise group also reduced the amount they depended on that frontal part of the brain for cognitive thinking and were able to do it more automatically. The exercise group reduced that cognitive control of the balance centers, but the education class did much less. Here you see before exercise, the frontal part of the brain is active, and after exercise it's not. It's just the automatic parts, the basal ganglia and the brainstem.

What is good exercise for people with Parkinson's? It has to be exercise that's really difficult and makes you sweat. You should do it at least three times a week, at least 30 minutes. As you get better, you should make it more difficult and more challenging. Join other people, because lots of studies have shown that people don't stick with exercise unless they do it with a friend, a partner or a group. People expect you to show up. The kind of exercise that you see here is not the kind that's probably good for us to do. These are some street children in India I took a picture of who had really good balance.

In summary, balance and gait are supposed to be automatically controlled by the brain. But when you have Parkinson's disease, and especially if you have freezing of gait, it results in less automatic control of balance and gait. When people have freezing and they start to fall, one of the problems is too-small stepping responses, lack of automaticity and inability to stop inhibition.

They're inhibiting their walking when they need to be able to take a step. But we know that exercise can help reduce falls, and we're hoping that new interventions can help reduce freezing as well. This is our group in the Balance Disorders Laboratory in Portland, Oregon, where it's not too bad for winter weather. You see Mount Hood in the background there, and our sponsors for our research are listed down below. I want to thank you for your attention. I'd be happy to answer any questions you might have.

Heather Cianci 00:38:34
Thank you so much, Dr. Horak.

We are certainly getting a great amount of questions. Remember, if we are not able to get to your questions today and are not able to get those answered, please remember that you can always call into our Helpline, which is 1-800-4PD-INFO. 1-800-4PD-INFO.

Dr. Horak, one of the questions that we have here mentions that you talked about studies showing that exercise does help with reducing falls and improving balance. But how about actually reducing freezing of gait?

Fay Horak 00:39:11
Yes, that is more difficult. There have been some studies that are specifically focused on freezing, that is, where physical therapists work with people to give them tricks to use to overcome their freezing. For example, teaching them to use external cues, like people will take a laser pointer and use it to step up over, or they'll have auditory cues, or they'll just stop, take a deep breath so they're less anxious, and teach them how to take a big step and to shift their weight.

Using these kinds of internal and external cues has been shown to reduce freezing, but it does require thinking and cognition, so you can't do that at the same time you're having a conversation, for example. I don't know of any studies yet, although some are going on, that show that practicing doing an aerobic exercise, for example, will necessarily improve freezing. But it does reduce falls.

Heather Cianci 00:40:22
Great. Thank you. We have a question from a person with Parkinson's in Michigan who wants to know: why does the freezing get worse when people are looking at me or I'm walking in a crowd?

Fay Horak 00:40:33
That's really interesting. We just published a study this month about the relationship of anxiety to freezing. There's a part of the brain that controls mood and anxiety, and we found that it was much more active and connected to the gait and balance centers in freezers compared to non-freezers. So the anxiety center can actually change the way your balance and gait work.

We don't know exactly why, but we know that it's a real physiological change in the brain, in which anxiety can induce freezing and freezing can induce anxiety. That's where trying to reduce your anxiety may be helpful to reduce freezing.

Heather Cianci 00:41:26
And we're getting lots of questions from people with Parkinson's disease. I'm just going to kind of dovetail off of this for Dr. Horak, where they're asking about: is freezing completely mental? I think she talked about that a little bit, but what they also want to know is how much of freezing is due to the medications.

Fay Horak 00:41:45
Right. That's difficult. Like I said, about 10% of freezers don't benefit from levodopa medication, or 90% do have less freezing. Some people have less freezing after deep brain stimulation, and some of them start to get freezing after deep brain stimulation. So it's pretty complicated. I believe that all of balance control is more mental than we used to think. Freezing and balance problems do involve the parts of the brain that are usually thought of as cognitive parts of the brain.

Whatever they do for thinking, they also do for controlling our balance and walking. Those two things often go together: cognitive problems and balance and gait problems.

Heather Cianci 00:42:37
This question leads perfectly into what you were just talking about. A person from California is saying that they imagine that people with Parkinson's who develop dementia or even possibly Alzheimer's would have more problems with freezing and balance. Is this true?

Fay Horak 00:42:53
It's really interesting. It's true that people with Alzheimer's disease have more falls.

They have a different kind of balance problem, though, than people with Parkinson's disease, because they don't get the rigidity that can contribute to falls. They don't necessarily get the bradykinesia. Sometimes they do, but sometimes they don't. Sometimes they actually walk fast, but because of their poor balance and they're too much dependent on vision, they fall when they slip or trip.

I think it's true, though, that people with Parkinson's disease who begin to get more and more cognitive problems and develop dementia are more likely to fall than people who don't have the cognitive problems. People who have more tremor tend to have fewer balance problems and fewer falls as well.

Heather Cianci 00:43:45
This question actually comes from a physician with Parkinson's disease in Colorado. He was diagnosed about 12 years ago and said that he's pretty much fully disabled now, but because of his athletic background, he's able to catch himself where he thinks other people might actually fall. His question is: when his doctor asks if he had a fall, what really constitutes a fall and what should he tell them?

Fay Horak 00:44:07
That's really interesting and really cool. That means that your athletic background has helped improve your balance control system, your automatic stepping responses, your automatic balance responses.

It's not good when people walk or run that they're tripping a lot. That says they're maybe not picking up their feet high enough, or they're shuffling. But it is good that when you do fall, when the body center of mass is going outside of its base of support, that you can recover your equilibrium using a balance response. I would say, 'Well, I'm tripping more or slipping more, but I'm not actually falling because I have a pretty good balance response.' Falls are usually defined by unintended landing on a lower surface. If you end up on a bed or a chair or the floor, then it's a fall.

But if you're slipping and tripping more often, it could be because your walking is such that you're more likely to trip. I would separate in my mind the part where you're losing your balance and the part where you're recovering your balance.

Heather Cianci 00:45:21
Thank you, Dr. Horak. I just want to take a moment to remind everyone, take a look at this slide here. We do have upcoming educational programs for health professionals, so feel free to take a look at that. Our next question, Dr. Horak, comes from a care partner and spouse in Maryland, and they want to know: are there any specific ways to prevent festination?

Fay Horak 00:45:43
Okay. Festination is the rapid, short stepping that can occur either in the forward direction or the backward direction. Often, people can't stop festinating until they get caught, or they run into a wall or something. The way I think of festination is where your body center of mass, which is what your balance control system is trying to control, gets ahead of your feet, for example. Your feet can't catch up with it because the steps you take are too weak and too short. You keep on falling, and then you keep on trying to take another step, and you're falling, you take another step, but each step is too small to catch up.

It's best not to get into that situation, because what you want to do is stop leaning forward. It's that lean forward that causes this automatic little festination. It's better to stop, take a deep breath and take a big step. You have to think really big, and it might require imagining a point on the ground or a line that you're stepping over. External cues can help people with Parkinson's, whether they're freezers or not, take bigger, larger steps. Even sometimes imagining that point on the ground can help.

If the step is large enough, there won't be festination. Festination only comes from taking too-short steps. So thinking big, I think, would be helpful in that situation.

Heather Cianci 00:47:14
We have some similar questions from care partners and people with Parkinson's disease in both Maryland and Virginia. They're asking about different situations where freezing can happen. Can it happen while driving? Can you have a full-body freeze? Can it happen in the mouth?

Fay Horak 00:47:29
That's interesting. There are studies now showing that freezing-type events can occur with your use of your hands. When you're trying to do something with your hands that's a coordinated action, you could have a period in which your hands kind of stop moving and do a little trembling before you can move on. That can be helped with levodopa, and it's associated in people who have freezing of gait as well.

I have not heard of people freezing or doing complex tasks like driving, but I think it can occur also with speech as well. When people find themselves unable to think of the next word or to articulate the next word, it can be associated with a freezing event. But remember, freezing isn't just like stopping moving. You're not driving along and you suddenly don't move. It just means that your movements are no longer smooth and coordinated.

Heather Cianci 00:48:41
Right. We have a question from a care partner in New Jersey who wants to know: is treadmill training helpful for balance and gait?

Fay Horak 00:48:51
Definitely for gait, probably less so for balance. Treadmill training is really good for getting aerobic conditioning. People with Parkinson's disease often get cardiovascular problems from lack of exercise, and that causes disability as well. Aerobic training on a treadmill can help improve walking and can make steps larger and faster. If you're not holding on to the handles or something, you can also be improving your balance, but that could be dangerous on a treadmill.

We did a study in which we looked at balance before and after treadmill training and didn't find improvements in balance, although we did find big improvements in gait. I think the main thing to think about with exercise is to do more than one kind. Do what you love and do it a lot, but do a variety of things. If you like the treadmill exercise, that's great, but then other times, take walks around the block or on uneven surfaces in a hike.

Or go up and down your stairs. Do a variety of things. I think that would be the best thing so that some of the exercises could be better for your balance and other ones for your walking.

Heather Cianci 00:50:13
Right. We have two questions here which are referring to the biofeedback device that you showed. We have one from Chappaqua, New York, who wants to know: how can I find out about getting into your study, or are there other studies? Then from a physician in Wisconsin, who wants to know if you've tried the biofeedback device on people who have had DBS.

Fay Horak 00:50:37
There's a way for people to get involved in research studies, and researchers really need people with Parkinson's disease, as well as other family members who don't have Parkinson's disease, to participate. There's a national program called NeuroNext.

Online, people can sign up for joining medical research for all different reasons and for neurological disorders. Whoever has research going on in their area then will be able to know that you're interested in participating. You could also look at a particular website, like the OHSU website, for research studies you can participate in if you wanted to come here.

We haven't tried the biofeedback yet with people who have had DBS, deep brain stimulation. Some people with deep brain stimulation develop freezing, or freezing gets worse. We don't know yet if it also helps them. What we're doing now, however, is trying to get it out of the clinic and laboratory and into the home. We're developing a more wireless system that you won't be able to see in the shoes, so that people can use it in the home. Then we have to measure freezing in the home with sensors in the socks or shoes to see if it's going to work in the long run, not just over a short period of time.

Heather Cianci 00:52:03
Great. As Dr. Horak was giving you some resources there, remember to take a look at our educational resources slide here. We have many different ways to stay in touch with you and help with many of your questions.

We have an interesting question here from a care partner in Rhode Island, who is asking that if you put an extra thick sole on one shoe, will it help you to focus more so that you can use the front part of your brain more?

Fay Horak 00:52:30
Oh, I don't know. It sounds like it could be dangerous, maybe. In fact, when people first get a new pair of shoes, that's probably the most dangerous time for their walking because their brain is used to automatically accounting for the properties of your shoe. You're right, when you get a new pair of shoes of any type, you probably use the less automatic and more conscious part of your brain. More attention is required for you to walk safely without tripping because you have to lift up your leg higher if you have a thicker sole, for example.

Those are the kinds of tricks you'd probably want to do with a physical therapist and not on your own because it could be dangerous.

Heather Cianci 00:53:14
Great. Thank you very much. I want to draw everyone's attention to the Expert Briefing survey. Please take a moment to complete this online survey for us. Your feedback is really important to us, and it really helps us to improve our webinars and to ensure that you get the information you need.

Let's take a look at our next question here, Dr. Horak. This actually comes from our Ohio chapter. They said that you had mentioned that you can teach a person with Parkinson's disease to use a laser. Is this one of the only ways that you can help people to take larger steps, or are there other ways to teach people to take larger steps?

Fay Horak 00:53:54
A laser is one way that's helpful, because they may be fine walking straight and then they want to go into an elevator or a doorway and they need to bring the laser out. The other thing they could do is find an app for a metronome on their phones, on their pocket phones.

They could use it if they're going to be taking a longer walk down the block or something. They could use the auditory cues coming from about one step per second, or a little slower than that, to help them take regular, larger steps. People can learn to automatically think about having those lights or the auditory cues as well. They internalize them after practicing for a while. But sometimes people still become reliant on the external cues, and they're more powerful.

What you can do in the home is put lines on the ground. For example, in a small bathroom, you could put tape on the ground at 12 o'clock and 3 o'clock, 6 o'clock and 9 o'clock that helps people make a turn in a small bathroom so that they don't fall in the bathroom while they're trying to turn. It helps them take bigger steps in that situation.

Heather Cianci 00:55:20
Right. A question from someone else in Colorado who wants to know: where is the best place to find help with Parkinson's disease? You mentioned you're a Center of Excellence. How do we find out about others?

Fay Horak 00:55:33
Well, the National Parkinson Foundation here is a good place to start. They have a Helpline and a website that can tell you about all the Parkinson Centers of Excellence in the country and how close they are to you. That would be one good place to start. I think if you're thinking that you want to see a physical therapist or a neurologist, you would need to ask them, 'How many people with Parkinson's disease do you see?' Those who see many people with Parkinson's disease are going to, of course, have more expertise than those who see very few.

Heather Cianci 00:56:13
I just want to take a moment here and say that people are really sending in the accolades, Dr. Horak. We're getting information from a health professional in Illinois and some people with Parkinson's disease in Vermont who are talking about how well done this webinar is and how much your information is truly helping them. So thank you for that.

Let's take a look. Here's an interesting one. This is from a person with Parkinson's disease. I'm sorry, I don't know where from, but they say: why can I always run when I cannot walk?

Fay Horak 00:56:45
Yeah, that is funny, isn't it? I wonder if running is more automatic for you than walking for some reason. When you're running, you're actually falling. Everybody who's running has their center of mass outside of their base of support, so you're actually falling and you're taking balanced steps to recover. Whereas when you're walking, you have to do a more sideways weight shifting, and maybe your sideways weight shifting isn't fast and large enough for you to unweight a leg, or maybe your walking is just not automatic enough.

It requires this cognitive system, which is slower and involves more complex interactions between balance and gait. I don't think everybody can run who can't walk, but certainly for you, that's the way it is.

Heather Cianci 00:57:41
We have a question from a person with Parkinson's in Minnesota. Can you please talk about the feeling of weakness that I get in my upper legs when I freeze?

Fay Horak 00:57:50
Hmm. So it's not only a feeling of your feet being glued to the floor, but a feeling of weakness. I wonder if that's part of it, where your brain is saying, 'Lift the leg, lift the leg,' but you still have a lot of weight on that leg. So you haven't shifted your weight off of that leg. You're trying to lift your entire body weight when you lift your foot off the ground. Yeah, I think that's the problem. I think you have to voluntarily think, 'Shift my weight to the left leg, and then lift up the right leg.' Then maybe your leg won't feel so weak because it's not having to lift as many pounds.

Heather Cianci 00:58:32
Another question from a person with Parkinson's. You mentioned many different exercise options. Can you speak about indoor cycling?

Fay Horak 00:58:42
Yes. There are some new studies showing that cycling behind somebody on a tandem bike can really improve people's walking with Parkinson's because you're forced to take really fast and large cycles. I think cycling in the home could be good for aerobic conditioning, and it may help walking. But there's not a lot of balance practice happening there. You'd also have to include another program, let's say, go take Tai Chi as well, so that you can work on balance there and work on your aerobic with the bicycle.

Heather Cianci 00:59:26
Right. A question from another care partner-spouse team in Maryland: are there any specific suggestions for avoiding retropropulsion?

Fay Horak 00:59:36
Retropropulsion can be very dangerous because people are falling backwards, and they're taking those tiny little steps rather than a big step to stop themselves. Their stepping responses are too weak and too late. One thing is to practice having good postural alignment. When people are more flexed at the hips and the knees and the ankles, they tend to shift their body center of mass too far back. If it's back near your heels, then you're really likely to start tipping backwards and then having to take a step. So the first thing is, you have to avoid tipping backwards.

You have to look in a mirror and work with a therapist to improve your body alignment so you're more upright and more weight is on the front of your feet and not back on your heels. Secondly, you need to practice walking backwards with big steps. Taking big backward steps is a necessary part of preventing retropropulsion because once you start tipping backwards, you have to take a really big step, and that can stop you from falling backward.

It might require working with a physical therapist so you don't fall, because taking backward steps is a dangerous thing to do since you can't see where you're going, and you may not be able to naturally take a big step. But with practice, I believe people can improve this backward stepping and even these automatically triggered backward steps that are needed for balance control.

Heather Cianci 01:01:09
Thank you, Dr. Horak. It looks like we have time for one more question. I want to remind everyone, if we don't get to your question and have that answered today, you can again contact us at the Helpline at 1-800-4PD-INFO. Number four PD INFO.

The question that we have here is from a person with Parkinson's in Pennsylvania, and they say that they've suffered with neuropathy and other problems with their feet and find it difficult to find exercises that don't involve pain in the feet. Would you have any other suggestions of exercises that they could try?

Fay Horak 01:01:45
In fact, we found that over 80% of people with Parkinson's disease have other things like neuropathy and arthritis and things like that that affect their balance and walking too, in addition to Parkinson's. I would think if you have pain in your feet from walking, exercises done in a pool might be useful. In a warm swimming pool, a therapeutic pool, where you can do large stepping and aerobic exercises and even practice your balance responses in a pool without endangering yourself.

With that less weight on your feet and the warmth of the pool, that might be useful to prevent pain and improve your balance and walking.

Heather Cianci 01:02:31
Wonderful. Thank you so much, Dr. Horak, for all of your wonderful information today. It was truly a pleasure to be able to moderate this today with you. We'd also like to thank our sponsors, AbbVie, Sunovion and Lundbeck, again for helping to make this series possible. Remember that an archive of today's event will be made available starting next week on Tuesday, January 23, by visiting our website at www.parkinson.org. I'd like to remind you to please join us for our next webinar entitled Parkinson's Disease Psychosis: Hallucinations, Delusions, and Paranoia.

That will be on Tuesday, February 27, again from 1 to 2 o'clock Eastern Standard Time, and that will be presented by Dr. Christopher Goetz of Rush University Medical Center, a Parkinson's Foundation Center of Excellence. We thank you for being with us today, and we hope to see you again and hear from you again at our next webinar.

Dan Keller (00:08)
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. Exercise can make life better for people with Parkinson's by improving their physical functioning, mood, and quality of life. In fact, research from the Parkinson's Foundation's Parkinson's Outcomes Project, the largest-ever clinical study of Parkinson's, shows that people with PD who start exercising earlier and exercise at least two and a half hours per week experience a slower decline in quality of life compared to people who start exercising later. Exercise may even slow down progression of the disease, but judging by the kinds of questions that come into the Parkinson's Foundation helpline, many people don't know where or how to begin, how to get and stay motivated, and what kind of exercises can benefit them. So we turn to Jill McClure, an information specialist on the Parkinson's Foundation helpline, for answers.

Jill McClure (01:39)
One of the common questions we get is, what's the best exercise for Parkinson's? I don't think that there's a clear and simple answer for that, but getting people to think about Parkinson's and talk about Parkinson's exercise is tremendously helpful to start with.

Dan Keller (01:56)
And what are the kinds of exercise? Are they big muscle, aerobic sort of things, or fine motor, or what goes on?

Jill McClure (02:05)
So all exercise is great for people with Parkinson's, and certainly movement is preferable to immobility and a sedentary lifestyle, but very purposeful exercise can have profound benefits. With Parkinson's, we know that there's really something that happens in the brains and the bodies of people with Parkinson's who exercise. Sometimes getting started is hard for people, and perhaps beginning with a physical therapist who has experience in helping people with Parkinson's can really help you identify some of the deficiencies, some of the changes that may have crept in, and focus on some exercises that will target that. So there may be some exercises that are particularly good for balance or rigidity or some asymmetrical strength changes, and focusing on those, learning about those is perhaps an important foundation, but maybe the best exercise is really the exercise that you will do. So finding some things that are particularly good for you and then going off and finding more things that are fun and social and novel can really have tremendous benefits for people with Parkinson's.

Dan Keller (03:11)
Many people get scared when they hear the word exercise. They think it's going to be regimented and boring and things like that. I mean, what falls into the category of exercise—would dance be one thing, right?

Jill McClure (03:22)
There are many different options and many different types of exercise that have been sort of tailored to Parkinson's disease. So there is a wonderful dance program that's been developed, and then certainly other types of dance have been shown to be great and fun and beneficial for people with Parkinson's. People do yoga, water exercise classes. There's boxing programs that are popular. And finding something that is challenging enough and pushes you to do things differently, maybe something that's new to you, may be of particular help, and something you can really apply yourself to. We know that better benefits may come from a more intensive exercise experience. So finding opportunities to do something maybe a little bit longer, a little bit harder, or more intensely or a little bit faster over time, within the range of what's right for you, can really provide great benefits for people with Parkinson's.

Dan Keller (04:20)
How important is novelty? I mean, if somebody's been doing something all their life, is that the kind of exercise they should keep with, or should they pick up something different?

Jill McClure (04:29)
Well, certainly, we want to see people with Parkinson's staying engaged in things that they enjoy and that are fulfilling. But sometimes modifications can be helpful so that you can continue to do something you love, but definitely creating kind of a routine for yourself that does encourage you to try new things and do new things may help you harness more benefits in terms of your body, and maybe even changes that happen in the brain as a result of those new things that you're taking in and exploring and pursuing.

Dan Keller (05:01)
Is there evidence, either from animals or in people, that exercise can keep the brain functioning longer, better outcomes for people in the long term?

Jill McClure (05:11)
We have lots of information available in animal and people studies. We can say that exercise can push back disability. We can say that it keeps people functioning better, more fully, for longer. Whether it actually can change the course of the disease, this evidence is not entirely clear in humans. At this point, we have some very encouraging results about it in animal models, but in terms of humans and exercise, the benefits are evident, but long-term change in the course of the disease—I don't know that we're there yet with the information in humans.

Dan Keller (05:52)
So now it sounds like you will be better in the meantime, probably more functional, but you don't know whether the long-term event is going to be modified, right?

Jill McClure (06:02)
Another encouraging thing we can say is that it definitely has been shown in human studies that quality of life for people with Parkinson's is better, and that's a tremendous value, I think, for individuals to consider and a good motivator.

Dan Keller (06:18)
What about the aspect of getting up off the couch? Are there benefits to doing something social, seeing other people? Or how do you motivate yourself, is what I'm asking.

Jill McClure (06:27)
It can be particularly difficult, especially within the context of Parkinson's, where we know people with Parkinson's, alongside all of these motor symptoms, can experience a lot of other challenges like depression, anxiety, apathy. It's particularly hard for people with Parkinson's to get going and do what we know can be so helpful. Sometimes making an appointment with a physical therapist or a trainer, or signing up for a class, can lure you into actually doing something that you know you should do. Sometimes partnering up with a friend so that you know you can't leave your friend waiting on the corner for you—that brisk walk is going to happen one way or the other. You wouldn't let your friend down. And different people have different levels of motivation, but getting encouragement from doctors and health professionals—a clear and consistent message—can be helpful. Family and friends can help. It's hard to get going, but it's so worthwhile, and we have such compelling evidence from studies and great videos out there that really show you, wow, exercise can help control symptoms. It can help improve quality of life, and if you choose to do it in a social setting, you're also getting that benefit of connecting with people and sharing your experience and sharing the joy of moving.

Dan Keller (07:47)
As someone said, if you want a friend, get a dog. Does just walking your pet count?

Jill McClure (07:53)
Absolutely. Walking is better than not walking, and walking your pet and your dog—having that connection—can be a wonderful thing for people with Parkinson's. I will say that walking briskly is better than a dog who wants to sniff all the time, so keeping it going—walks with your dog and walks without—so that you can kind of get a little interval training and go for some intensity and some good benefits would be ideal.

Dan Keller (08:19)
What's important or interesting to add—anything?

Jill McClure (08:23)
I think that sometimes people do get a little hung up with the idea of what's best for me, or I'm going to get an exercise bike or machine or sign up for something, and what exactly should I do? And I think on the helpline, our role is partly to help people know what the possibilities are, but getting too hung up on whether you're doing exactly the right thing can be something that does keep you on the sofa. So go out, try something. If you don't find a physical therapist or a trainer who seems particularly adept or helpful or just a good fit for you, try somebody else. Explore the options, and contacting the helpline and other resources can help you learn about what is out there. We do try to make a point of really trying to help individuals connect with programs in their community. Beginning something is the way to go, and it's different from one person to the next in terms of what your interests are and what you'll like to get involved in, and what's available to you as well. And you can find exercise curriculums you can do at home on your own if you have that motivation. So there shouldn't be barriers to getting active and exercising at any stage. It can mean different things to different people with different abilities, but moving and exercising and exploiting the benefits that can come from exercise should be available to everybody with Parkinson's.

Dan Keller (09:48)
Great, thank you.

Dan Keller (09:59)
Jill and other Information Specialists on our helpline are ready to answer your questions about exercise and to help you find an exercise program or facility near you. You can reach them toll-free at 1-800-4PD-INFO. As Jill mentioned, the best exercise is one that you enjoy and will do. There is something for everyone, regardless of your current fitness level or stage of Parkinson's. So let our Information Specialists help you find something that will work for you. You can start with our free publication, Fitness Counts. It includes sample stretching, aerobic, and strengthening exercises, along with information on physical and occupational therapy, posture and balance, and more. If you have any questions about the topics discussed today, or if you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. 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. Next time, we'll hear more about exercise in the context of overall Parkinson's wellness. If you can't wait till then, for more exercise information, listen to one of our earlier podcast episodes, The Benefits of Exercise for People with Parkinson's. In it, Dr. Bas Bleum talks about exercise research and overcoming barriers to getting enough exercise. 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.

Jill McClure joined the Parkinson’s Foundation Helpline in 2012. Before that, she enjoyed working as a subject matter expert on helplines for foundations serving the breast cancer and inflammatory bowel disease communities. Her background also includes hospital administration at academic medical centers in New York City. While at the Parkinson's Foundation, Ms. McClure has attended community events, educational programs and international conferences. These extraordinary opportunities have deepened her relationships within the Parkinson’s community and enriched the services she can provide through the Helpline.

Ms. McClure thrives on connecting with people. In her role on the Helpline, she gains new insights into Parkinson's every day, and she uses this knowledge to ease the weight of living with Parkinson’s or having a family member affected by the disease. Ms. McClure's Parkinson's expertise is personal as well as professional: her father lived with the disease.  

When she is not staffing the Helpline phones and answering emails, Jill enjoys spending time with her family and dog, particularly when that shared time takes place outdoors! 

Connect with Jill to get your Parkinson's questions answered by contacting our Helpline at 1-800-4PD-INFO (473-4636) or helpline@parkinson.org.